Access to Hospice Care: Expanding Boundaries, Overcoming Barriers

EXPANDING BOUNDARIES,OVERCOMING BARRIERS

ACCESS TO

BRUCE JENNINGS

TRUE RYNDES

CAROL D’ONOFRIO

MARY ANN BAILY

A SPECIAL SUPPLEMENT TO THE HASTINGS CENTER REPORT

Hospice Care

In January 2000 The Hastings Center and the NationalHospice Work Group, in collaboration with theNational Hospice and Palliative Care Organization,

began a project on Increasing Access to Hospice Care,with support from The Arthur Vining Davis Foundationsof Jacksonville, Florida, and the Nathan Cummings Foun-dation of New York, New York. A preliminary planninggrant from the Nathan Cummings Foundation helped tolaunch the project with a meeting of hospice and palliativecare leaders in September 1999.

The work of the project was organized around thedeliberations of a national task force of distinguishedexperts on hospice, palliative care, and end of life care.Working with numerous other experts on health policyfrom around the country, the task force comprised a mul-tidisciplinary group of researchers, scholars, policy ana-lysts, health care executives, and health care providers frommedicine, nursing, philosophy, theology, the social sci-ences, and hospice. The task force met four times duringthe period 2000-2002 to review hospice policy and prac-tice, engage in discussion of the ethical and social valuesserved by hospice care, investigate the barriers to greateraccess and earlier access to these services, and hear presen-tations on many facets of care of the dying and health pol-icy. Many of our discussions and much of our analysiswere oriented around the perspectives and viewpoints ofseveral stakeholder groups, including: (1) consumer andpatient groups, (2) health professionals, (3) the hospicecommunity, (4) policymakers from both the public andthe private sector, and (5) the community of professionalethicists and other scholars in the area of health policy andhealth systems research. In between project meetings, dis-cussion and debate continued through a lively forum setup on a special web site made possible through the sup-port and technical assistance of Bondware, Inc.

This special supplement grows out of the project as awhole and the work of the task force. The lead article,“Access to Hospice Care: Expanding Boundaries, Over-coming Barriers,” written by the project co-directors, pro-vides a comprehensive report on the deliberations andconclusions of the project. It is not a consensus documentin the sense that each member of the task force endorses itin all details, but we have done our best to present anaccurate and faithful reflection of the group’s thinking,

and this analysis certainly would not have been possiblewithout the benefit of their insight and expertise. Theaccompanying essays by task force members Ira Byock,Stephen Connor (writing with Jocelia Adams), CarolD’Onofrio, Linda Emanuel, Bruce Jennings, Hilde Nel-son, True Ryndes, Jack Stanley, and Daniel Sulmasy dis-cuss in more detail several key issues that surfaced duringthe course of our deliberations but could only be touchedon briefly in the project report. These thoughtful essaysalso reflect the breadth and complexity of the issues withwhich the project as a whole had to grapple.

In addition to the Task Force members and other pro-ject participants, this supplement and the project onwhich it is based would not have been possible withoutthe extraordinary support and assistance of many people.We would like to thank, first, colleagues at The HastingsCenter for their contributions, encouragement, and sup-port. An equal measure of credit and gratitude should goto the members of the National Hospice Work Group.They have been more than good colleagues and collabora-tors throughout the project; they have been constructivelycritical friends who have kept us on track and kept usclose to the practical realities of care for the dying andtheir families. We are indebted, too, to the board andexecutive staff of the National Hospice and Palliative CareOrganization (NHPCO), especially former president andchief executive officer Karen Davie. Stephen Connor andChris Cody provided invaluable advice and technical assis-tance. The current president and chief executive officer ofNHPCO, Donald Schumacher, was also an active mem-ber of the task force throughout the project in his capacityas president of the Center for Hospice and Palliative Carein Cheektowaga, New York. We thank Tammy Choateand her colleagues at Bondware for providing invaluableweb-site support and services, which greatly facilitated thework of our project.

We especially thank Ann O’Keefe of The Arthur Vin-ing Davis Foundations and Andrea Kydd of the NathanCummings Foundation for their unflagging vision,encouragement, and support.

Finally, we gratefully acknowledge the many hours ofhard work devoted to the project by our administrativeassistants, Donna Tipps of the San Diego Hospice andEllen McAvoy of The Hastings Center. ❧

The Project on Increasing Access to Hospice Care

T A B L E O F C O N T E N T S

The Project on Increasing Access to Hospice Care inside front cover

Access to Hospice Care: Expanding Boundaries, Overcoming Barriers 3by Bruce Jennings, True Ryndes,

Carol D’Onofrio, and Mary Ann Baily

I. What is Hospice Care? 6II. The Ethical Imperative for Access to Hospice Care 13III. Barriers Impeding Access 27IV. Race, Ethnicity, and Culture 39V. Toward New Models for Hospice 44VI. Approaching Just Access: Recommendations 53

Caregiving at the End of Life 8by Stephen Connor and Jocelia Adams

Healthcare Justice and Hospice Care 14by Daniel P. Sulmasy

Pictures of Persons and the Good of Hospice Care 18by Hilde Lindemann Nelson

What the People Would Want If They Knew More About It: A Case for the SocialMarketing of Hospice Care 22

by John M. Stanley

Hospice and Alzheimer Disease: A Study in Access and Simple Justice 24by Bruce Jennings

The Relevance of Public Health in Improving Access to End of Life Care 30by Carol D’Onofrio and True Ryndes

Rediscovering Community at the Core of the Human Condition and Social Covenant 40

by Ira Byock

Is Discontinuity in Palliative Care a Culpable Act of Omission? 45by True Ryndes and Linda Emanuel

Hospice Access and Values Project Task Force Participants 60

Hospice Access and Values Project Task Force Members inside back cover

S2 March-April 2003/HASTINGS CENTER REPORT

A u t h o r sJocelia Adams, is the founder/clinical di-rector of The Center for Caregiver Train-ing in San Francisco, Calif.

Mary Ann Baily is associate for healthpolicy and ethics at The Hastings Center.

Ira Byock, is a palliative care physicianand Research Professor of Philosophy atthe University of Montana.

Stephen Connor, is vice president for re-search at the National Hospice and Pallia-tive Care Organization in Alexandria, Va.

Carol D'Onofrio is professor, emerita atthe School of Public Health, University ofCalifornia, Berkeley, and has served asconsultant to many organizations, includ-ing the National Hospice Work Group.

Linda L. Emanuel directs the Interdisci-plinary Program for Professionalism andHuman Rights at Northwestern Universi-ty Medical School.

Bruce Jennings is senior research scholarat The Hastings Center and teaches at theYale School of Public Health.

Hilde Lindemann Nelson is an associateprofessor in the department of philoso-phy, and associate faculty at the Centerfor Ethics and Humanities in the Life Sci-ences, at Michigan State University

True Ryndes is president of the NationalHospice Work Group and vice presidentof mission and policy for San Diego Hos-pice.

John M. Stanley is professor of philoso-phy, emeritus at Lawrence University, Ap-pleton, Wis., and is the former presidentof American Health Decisions.

Daniel Sulmasy is Sisters of CharityChair in Ethics at St. Vincent’s HospitalManhattan and director of the BioethicsInstitute of New York Medical College.

ILLUSTRATION CREDITS

Diedre Scherer’s fabric and thread im-ages on aging have appeared in manyshows throughout the United States andthe world. She was also the recipient ofa Fine Arts Fellowship from the OpenSociety Institute’s Project on Death inAmerica. For more information, visitwww.dscherer.com.

The work of Adele Schtern and JudithSelby appears courtesy of OATH, theOrganization for Artists Trained inHealth Care, located in Philadelphia.For more information, [email protected].

S3SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers

Too many Americans approach death without ade-quate medical, nursing, social, and spiritual sup-port.1 In the last stage of a long struggle with in-

curable, progressive diseases such as cancer, heart or lungdisease, AIDS, Alzheimer’s, Parkinson’s, or amyotrophiclateral sclerosis, their pain is untreated or inadequatelycontrolled. Their depression or other mental health prob-lems are not addressed. Debilitating physical symptomsrob them of energy, dignity, and sometimes the will tocarry on. Family members who provide care are stressed,inadequately supported by professionals, and often ren-dered ill themselves by the ordeal. Patients who wish to re-main in familiar surroundings at home are often forced tospend their final days or weeks in a hospital or nursinghome. Neither dying patients nor their families are pro-vided with the kind of emotional and spiritual supportthey desire and need.

In sum, too many Americans die unnecessarily baddeaths—deaths with inadequate palliative support, inade-quate compassion, and inadequate human presence andwitness. Deaths preceded by a dying marked by fear, anx-iety, loneliness, and isolation. Deaths that efface dignityand deny individual self-control and choice. And toomany Americans have their access to better care and ser-vices, through hospice and other forms of palliative care,blocked by a lack of information, misunderstandings, am-bivalence about treatment options, unfairly restrictive gov-ernmental policies, financial limitations, and other factorsthat can and must be changed.

Death is an inevitable aspect of the human condition.Dying badly is not. Yet it usually cannot be avoided bysingle individuals and families acting alone. Dying badly isa social problem that requires a social solution. It is an ar-tifact of the way our health care system is organized and fi-

nanced. And it is a product of our societal failure to per-ceive the ethical and human cost of limited access to, andinadequate provision of, hospice care. Although the accep-tance and utilization of palliative and hospice care havegrown, there are still over one million Americans who dieeach year without receiving the hospice or hospice-typeservices that would have benefited them and their families.

These are difficult, even daunting, problems in theAmerican health care system today. Who opposes im-provements in palliative and end of life care in the ab-stract? The challenge is to find new practical approaches tohospice care, building on the strengths that this movementhas developed over the years and correcting those policiesand practices that have shown themselves to be unduly re-strictive, unworkable, or unwise.

The challenge of end of life care will grow more seriousover the next three decades. The population of seniors inthe United States is projected to more than double overthe next 30 years, rising from 34 million in 1997 to over69 million by 2030. At that time, one in five Americanswill be age 65 or older. One in nine baby boomers is ex-pected to live to age 90, and by 2040, the number ofAmericans over age 85 will be nearly four times greaterthan today.2 The United States already struggles to providebasic primary care to its population; more than 40 millionAmericans are without consistent or adequate health in-surance coverage. Either they do not have access to healthcare at all, or they do not get it in a timely or efficient way.Out-of-pocket expenses for prescription drugs are a signif-icant burden to many, and families must shoulder most ofthe financial and emotional burden for long-term care. Wehave been remarkably slow to acknowledge the impendinghealth care crisis that looms ahead, much less the seriousproblems already with us. Health insurance reform hasfailed several times since the end of World War II, despitethe bipartisan efforts of several presidents. Some incre-mental efforts are under way, but there is no public or gov-ernmental vision of a just health care system as a whole.

BY B R U C E J E N N I N G S , T R U E R Y N D E S , C A R O L D ’ O N O F R I O, A N D M A R Y A N N B A I LY

Bruce Jennings, True Ryndes, Carol D’Onofrio, and Mary Ann Baily, Accessto Hospice Care: Expanding Boundaries, Overcoming Barriers, Hastings CenterReport Special Supplement 33, no. 2 (2003), pp. S3-S59.

AC C E S S T O

H o s p i c e C a r eEX PA N D I N G BO U N DA R I E S, OV E R C O M I N G BA R R I E R S


And there is certainly no vision of ahealth care system adequate to meetour growing needs for chronic andpalliative care. Americans are talkingand worrying quietly about this, asfocus group and opinion survey stud-ies reveal.3

A redesign of the end of life caresystem must be accomplished in thisdecade if the nation is to have time toprepare for the challenges ahead. Ithas taken decades to build the presentsystem of hospice care, and efforts toimprove palliative care in hospital set-tings are only just beginning, yetthese achievements will soon have tobe substantially improved and aug-mented.

The purpose of this report is tocontribute to the broad goal of im-proving end of life care by addressingspecific problems in access to and de-livery of hospice care. Several groupsare addressing these problems fromvarious points of view.4 The distinc-tive contribution of our study is thatwe pay explicit attention to thehuman values involved in hospicecare policy and practice. The reportexamines the problem of access fromthe perspective of social justice andequity, or fairness, and we make anethical case for equitable access on thebasis of the moral importance of theneeds met and the values served bycomprehensive, high-quality hospicecare.

We also offer a new vision of hos-pice, one that holds firmly to many ofthe traditions and values of the past,but finds new and more flexible orga-nizational forms through which to ex-press those values. The vision we offeris based on the notions of condition-management, community-respon-siveness, and continuity-orientedpractices. The new organizationalforms appropriate to this vision arethe model of the “community hos-pice” and the “comprehensive hospicecenter.” The past emphasis eligibilitymust be replaced by a focus on conti-nuity and appropriateness of servicesgiven changes in the patient’s and thefamily’s condition over time. And themodel of traditional hospice as a spe-

cialized service and an independentagency with a limited mission willgradually be transformed into a morecomprehensive model in which hos-pice becomes the coordinating centerfor a range of services and types of ex-pertise that can be accessed by pa-tients in various ways as the patient’sunderlying condition evolves from di-agnosis to death.

Providing access to hospice care isnot simply a question of expanding agiven service to more people whocould benefit from it. The nature andgoals of the service itself need to beredefined. We must envision hospiceas a potentially new paradigm of so-cial health care for an aging society. Ifwe can learn how to define, organize,finance, and deliver hospice careproperly, then we may have found thekey to coping with the major prob-lem of caring for staggering numbersof persons with chronic, degenerativedisease—the number one problem ofthe health care systems of the devel-oped world for the next fifty years.Chronic, degenerative disease re-quires patients and families to makedifficult adjustments and transitionsin their lives as they pass through var-ious stages and phases of their disease.The experience of chronic diseaseblends gradually into the experienceof dying. The flow and rhythms ofhospice, as well as its goals and careplans, must be allowed to match therhythms of chronic illness, as chronicillness becomes an increasingly wide-spread social condition. Of all the ex-isting structures and specialties inhealth care today, hospice has the bestchance of successfully transformingitself into this chronic care socialmedicine of the future.

The promise for a larger missionin the future, perhaps as much as theend of life care that many people lackaccess to today, is the principal reasonfor being urgently and deeply con-cerned about policy reforms in the fi-nance and delivery of hospice.

A Course for Reform

There are two broad approaches toreforming and restructuring hos-

pice and palliative care financing anddelivery systems. First, we might sup-plement existing hospice services withenhanced, high-quality palliative careintegrated into non-hospice care set-tings to form a continuum of care, ofwhich hospice is a part. Second, wemight expand the scope and missionof hospices, which have proved theircapacity to provide effective palliativecare, beyond their current confines toserve populations of patients whohave longer to live and who are invarious health care settings.5 Theseapproaches are not mutually exclu-sive; in fact, both are needed. In orderto further both, we must return to theissue of organizing the financing anddelivery of hospice care so as to pro-vide “equitable access.” For the pur-poses of this report, we define equi-table access in the following way: eq-uitable access to health care requiresthat all citizens can secure an ade-quate level of care without excessiveburdens.6

This conception of just or equi-table access leads to the followingclaims:

! Equitable access to hospice ser-vices does not exist in the UnitedStates, and this constitutes a viola-tion of justice and fairness in oursociety that should be rectified.

! Many factors limit access to andutilization of hospice services, butgovernmental policies and profes-sional practices are especially sig-nificant. Understanding what stepsare appropriate to increase accessto and utilization of hospice careservices will reveal why we shouldnot define the mission of hospicecare narrowly.

! Steps taken to increase access tohospice care and to design the newsystem should be driven, first andforemost, by an explicit discussionof the ethical values that the end of


life caregiving system should em-body.

Beyond justice, when individualswho are dying or who are in the laterstages of an incurable illness do notattain access to hospice care services,fundamental social values are not ful-filled. The dying persons, their fami-lies and loved ones, and society as awhole are diminished by this failureto respect the autonomy and dignityof the person, to respond to the per-son’s suffering, and to offer care, com-passion, and vigilance at the end oflife. When so many die without thesupport of good hospice or palliativecare, we have not met our obligationto the most vulnerable in our society,and we have not kept faith with ourhighest moral ideals.

The nation has the technical ex-pertise and financial resources to pro-vide universal access to much higher-quality hospice care today. A just in-crease in access should take placeprincipally in three ways: first, bymaking more people eligible for hos-pice admission and insurance cover-age; second, by lengthening the aver-age time spent in hospice, primarilythrough earlier referral; and third, by

maintaining both high-quality careand good stewardship of scarce re-sources through a professionally rig-orous case management system with-in hospice programs.

Each of these three elements of ac-cess is ethically important. Justice per-tains not only to getting in and stay-ing in, but also to what types of ser-vices a patient and family receive oncethey are in a hospice program. Itwould do little good overall to expandhospice admission or length of staywhile cutting services so drasticallythat they are of poor quality or littlebenefit to dying persons. Thinningthe soup—“hospice lite,” as it issometimes referred to—is not the an-swer to the challenge of just or equi-table access.

At the same time, justice does notrequire the provision of all servicesthat patients and families want—in-deed, not even all services that theymight marginally benefit from—since there are always other ethicallyimportant claims on scarce resources,even in the richest countries. Hence,justice requires that hospices be givensufficient funds to provide adequatecare, not a blank check. Historicallyhospice has operated under a system

of fiscal discipline that has workedreasonably well, at least in terms of itscase management system and the effi-ciency of its professional staff. We ex-pect this commitment to case man-agement and quality improvement tocontinue in the future forms that hos-pice takes. If the expansion of hospiceaccess we call for here turns out to re-quire a large additional expenditureof Medicare funds, for example, theincrease will not be—and should notbe permitted by policymakers to be—undisciplined.

In fact, it is not clear how muchmore money should be spent on hos-pice, nor what the net increase mightbe after we take into considerationother health care cost savings pro-duced by broader, better hospice care.We are not in a position to estimatesuch costs in this study.

In any case, we do not begin thisstudy with a dollar amount. We beginwith a description of the system oursociety needs and should have. Wefirst ask what justice and other ethicalvalues call on us to do in hospice care,and for whom. There will be timeenough to devise an efficient way topay for what ought to be done.

When the first hospice pro-gram in the United Stateswas started in Connecti-

cut in 1973, end of life care was anorphan field of little interest to main-stream medicine, which was busyfighting President Nixon’s war oncancer. Death and dying were suchsocially and culturally taboo subjectsthat even clergy were uncomfortablediscussing them, let alone physicians,family, and friends.

Pioneered in England, hospicetook root in the United States duringthe 1970s and was added as a benefitto the Medicare program in the early1980s. Its origins lie in a grassrootsmovement that lay outside the med-ical mainstream and was informed byan ethic of compassion, dignity, andservice. More or less self-consciously,hospice care was initially designed forpeople who were dying of cancer,and who had a functional family sup-port system and a home where theycould be cared for away from thehigh-tech hospital environment.7

Over time, the vision and the valuesof the hospice movement have devel-oped and matured.

The Spectrum of HospiceServices and the HospicePhilosophy

In the view of most practitionerstoday, hospice is not limited to any

single disease or to any one set of lifecircumstances for its patients andfamilies. Accordingly, hospice hasbeen expanding in recent years toreach people dying of somethingother than cancer, who lack familysupport systems, and who live in in-stitutional settings. Its growth and itscapacity to assist dying patients andtheir families demonstrate the healthcare and human benefit hospice of-fers. And although it is still a separateand distinct system in many ways,hospice has become a component ofstandard of end of life care and a part

of accepted medical practice. Hos-pice cannot rightfully be a matter ofoptional purchase for the affluent. Ifnothing else, the landmark publicpolicy decision in 1983 to includehospice care in the Medicare pro-gram put an end to such thinking.Whatever unfairly or unreasonablylimits access to hospice care shouldbe seen as a moral problem.

In the past, ignorance about hos-pice and about appropriate palliativemeasures has also been viewed as aneducational problem. Over the pastsix years, the Robert Wood JohnsonFoundation and other foundationshave dedicated tremendous resourcesto advancing professional and com-munity education initiatives in sup-port of improved end of life care. It ishard to imagine a North Americanhealth care provider that has not hadthe opportunity to learn more abouthospice.

“Hospice” is both a concept (thatis, a philosophy and a paradigm ofcare) and an organizational form ofhealth care delivery. Hospice servicesinclude professional nursing care,personal assistance with activities ofdaily living, various forms of rehabil-itation therapy, dietary counseling,psychological and spiritual counsel-ing for both patient and family, vol-unteer services, respite care, provisionof medical drugs and devices neces-sary for palliative care, and family be-reavement services following the pa-tient’s death. Hospice care is provid-ed by an interdisciplinary care teamcomprised of nurses, social workers,pastoral counselors, nursing assis-tants, and other health professionalsunder the management of a physi-cian, who may be the patient’s ownprimary care physician or may be af-filiated directly with the hospice pro-gram. Caring for the dying is a com-plex social enterprise that must in-volve the families of the dying, reli-gious organizations, the health caresystem, and the community at large,

from the very local to the nationallevel.

The specific needs of dying per-sons to which care must respond canbe grouped under the headings ofphysical, emotional, and social well-being. Within each category, thehealth care system plays an impor-tant role in meeting these needs butis never the only actor and not alwayseven the chief actor. Physical needsinclude a safe, clean, and comfortableplace for dying; control of pain andsymptoms; appropriate food and nu-trition; personal care (aid withbathing, feeding, dressing, and otheractivities of daily living); informationabout how best to manage the physi-cal condition of the dying person;and information about the changesin physical condition to be expectedover time. Emotional needs includerespect for the dying person’s dignityas a human being; respect for thedying person’s wishes, to the extentpossible; information about the emo-tional changes to expect; counselingto help the patient come to termswith what is happening; assistancewith advance planning for death; andattending to spiritual concerns. So-cial needs include companionship;maintenance of social functioning, tothe extent possible; assistance in“telling one’s life story” to others; andhelp in resolving relationships andtaking care of other “unfinished busi-ness.”

Responding to these needs re-quires access to a complex continu-um of care. As a group, people whoare dying make use of virtually theentire array of health care goods andservices, including acute care, long-term care, mental health care, andhealth education. Managing painand other distressing symptoms mayrequire sophisticated treatment regi-mens and technologies, ranging fromcarefully tailored drug regimens topalliative radiation and surgery tomechanical ventilation. Feeding and


I. What Is Hospice Care?


hydration issues may be addressed byspecial diets or supportive counselingwhen patients stop eating. Carefulnursing care is required, includingbathing, feeding, skin care, and otherpersonal care activities that make agreat difference to a sick person’scomfort. Health education is neces-sary to provide information about thephysical and emotional changes toexpect and to explain what the pa-tient and family can do about them.Mental health services may also beneeded, including counseling and thetreatment of depression. Patients’symptoms vary tremendously, andwith them the appropriate pattern ofcare.

Some of the care needed must beprovided by highly skilled health careworkers, but much of it can andshould be undertaken by families,friends, and members of the dyingperson’s faith community. Familycaregivers may take care of the pa-tient’s home, provide meals, helpwith personal care, offer companion-ship, and help the patient maintainsocial functioning. Friends and com-munity organizations may help fami-ly members with these caregiving ac-tivities. Religious organizations mayprovide spiritual support to the pa-tient. There is no sharp line separat-ing the care provided by the healthcare system and the care provided byothers; the division of labor dependson the patient’s situation and com-munity resources.

Family members themselves alsoneed care and support from thehealth care system, religious organiza-tions, and the community. Familymembers are usually the front-lineproviders of daily care, working intandem with professional health careproviders. To perform their caregiv-ing role well, they need informationand training. At the same time, theyare themselves patients of the healthcare system. They need care to pre-vent and, if necessary, to treat thephysical and mental health problemsthat can be associated with caregivingand bereavement. Again, there is nobright line separating care for family

members and care for the dyingthemselves; their well-being is pro-foundly interdependent. What hos-pice care offers family members in-cludes: information about how toprovide care to the dying patient;caregiver support, emotional support,and practical assistance; caregiverrespite; help with preparation and ad-vance planning for death; resolutionof relationships; and grief counseling.

The subjective preferences of pa-tients vary widely. The objective situ-ation of patients also varies with age,diagnosis, income, family circum-stances (some have many caring fam-ily members while others have none),social class, type of residence (home,nursing home, hospital, board andcare facility, prison, or the streets),race/ethnicity/culture, religion, andgeographic location. Therefore,someone must manage the patient’saccess so the patient can receive carethat is compassionate, timely, and inaccord with individual needs andpreferences. The patient and familymembers can do some of the coordi-nation, but the task is too complicat-ed for them to handle alone. Giventhe importance of health care in thecare mix and the specialized knowl-edge it requires, the health care sys-tem reasonably takes on the role ofintegrating the care provided byhealth care providers with the careprovided by family and community.

The Distinction betweenHospice and Palliative Care

What is the relationship betweenhospice care and palliative

care? It is a more complicated ques-tion than may at first appear. Thetwo labels are often thought to be vir-tually synonymous, particularly ifone bears in mind that the hospicephilosophy (if not the Medicare Hos-pice benefit) has been expanding itsambit over time to include personswho are dying not only of cancer butof many other fatal diseases as well,and not only those who are thoughtto have less than six months to livebut those whose dying process may

follow a longer, more chronic andunpredictable course—who may bereferred to as the “chronically dying”or the “chronically terminally ill.”This perspective is consistent withthe definition of palliative care for-mulated by the World Health Orga-nization, which makes it virtuallyidentical with hospice: “The activetotal care of patients whose disease isnot responsive to curative treatment.Control of pain, of other symptoms,and of psychological, social, and spir-itual problems is paramount. Thegoal of palliative care is achievementof the best possible quality of life forpatients and their families.”8

From another perspective, howev-er, the two terms are often taken torefer to different caregiving orienta-tions, time frames, institutional set-tings. WHO’s definition of palliativecare goes on to add that “Many as-pects of palliative care are also applic-able earlier in the course of the illness,in conjunction with anti-cancer treat-ment.” From a medical perspective,then, palliative care may be taken asthe broader term, covering all formsof the prevention and treatment ofsuffering, while “hospice,” in a nar-row medical sense, has been viewedas a subset of palliative care especiallytargeted to the needs of those neardeath. This usage seems consistentwith the Medicare program, whichafter all is a hospice benefit and not apalliative care benefit. Palliative careis appropriate whenever symptomscausing pain and suffering are pre-sent, and good counsel regarding theconsequences of illness and treatmentis required, regardless of the underly-ing medical condition and prognosisof the patient. A child receivingchemotherapy for leukemia, with anexcellent chance for recovery andlong life, should still receive palliativecare as a component of the care plan.Traditional hospice care, on the otherhand, has always included addressingthe patient’s impending death andthe reaction to that prospect, whatev-er additional medical and nursingservices it might also involve.


Chances are that as you age, you will either be acaregiver or will need someone to care for you.The amount of care provided by informal care-

givers in the United States is staggering. Estimates of thevalue of these services are $196 billion annually.1

We care for grandparents, parents, spouses, friendsand neighbors, and children. The average caregiver pro-vides four and a half years of care. Three out of four care-givers are women, who themselves are less likely to becared for by a family member than their male counter-parts. With rare exceptions, our health care economicsystem does not value or reward caregiving. Caring for aperson who will not recover is one of the most stressful ofhuman experiences. People can feel intense psychologicalsuffering in response to caregiving and bereavement. Ad-verse psychological distress can continue for months andyears. Those who report mental and emotional strain as-sociated with the chronic stress of caregiving had a mor-tality risk 63 percent higher than non-caregiving con-trols.2

Caring for someone with advanced illness is fraughtwith hazards and opportunities. The impact of caregiv-ing on health and well-being varies widely. Most who doso are motivated by love and concern. Giving to otherscan be very rewarding. It can also be very stressful. Manyfactors determine the extent to which caregiving is a bur-den and a blessing. Among these are the length and in-tensity of caregiving, the nature of the relationship withthe person needing care, the amount of psychological,social, and physical support provided to the caregiver, thepresence of professional caregivers, and the self-percep-tion and emotional health of the caregiver.

The optimal period of caregiving appears to bemonths rather than years. Most of us can muster theinner resources to devote ourselves to the needs of some-one we care about for a distinct period of time. But whencaregiving responsibilities are considerable and no end isin sight, we feel more strain. This stress is both physicaland financial. Over one-third of terminally ill patientshave substantial care needs.3 Long-term, open-endedcaregiving is often characteristic of the needs of thechronically ill with advanced disease.

We find it easier to care for someone who is an im-portant part of our emotional life. The closer we are tothe person we are caring for, the easier it is to be moti-

vated to provide care. However, closeness is not necessar-ily defined by familial relationships. One might have aclose and intimate relationship with a spouse, for exam-ple, and be devoted to his or her care, or one might havean ambivalent, even abusive relationship and providecare resentfully.

Caring for a seriously ill person alone can be an over-whelming responsibility. If we know that there are otherssharing the load, we can go on more easily. Also, manyneed care in order to give care.4 Professional caregiversshould not supplant the family in the caregiver role, ex-cept where the family lacks the physical or emotional re-sources, knowledge, or desire to provide care. The provi-sion of support and education to caregivers is essential tothe ongoing provision of care to the dying. None of usare born knowing how to provide personal care. Effectivetraining programs for caregivers have been developed,but they need to be made more widely available.

How much support is needed to take care of a personin the final phase of illness? Those leaving the hospitalhave had the advantage of pharmacy services, transportaides, all the special supplies from a hospital bed rightdown to special cleansers, “24/7” surveillance and moni-toring by a variety of nursing staff, dietary services, main-tenance, housekeeping, and so on. We send people homewho are very sick and do not make the correlation thatan untrained person or family will have to do the work ofan entire hospital staff. If they are fortunate, they will gethospice care or a limited “prescription” for home healthcare, which may come after they have already been pro-viding care for a long time.

Many caregivers are ambivalent about their ownneeds.5 They may focus on the patient to the detrimentof their own health. Prior history of depression and pes-simism are linked to poor adjustment after death. Care-givers who are able to continue participation in valuedactivities and interests experience less emotional distressregardless of the amount of care provided.6

The provision of family caregiving to the dying mayhelp mediate the bereavement process following death.7

The combination of family caregiving and professionalsupport creates the opportunity for optimal care delivery.Family members, involved in the care of their loved ones,with the support of an interdisciplinary team, for a peri-od of time, can find that they deal more effectively withtheir bereavement and have fewer physical symptoms inthe year following the death.

The Medicare Hospice Benefit is unique in that it re-quires hospices to provide caregiver education, support,

Caregiving at the End of Life

Stephen Connor and Jocelia Adams, “Caregiving at the End of Life,”Hastings Center Report Special Supplement 33, no. 2 (2003), pp. S8-S9.

B Y S T E P H E N C O N N O R A N D J O C E L I A A D A M S

Hospices are rich and complex invirtually all of their facets—in theskills and services they provide, in theneeds they meet, in the expectationsthat people have of them, and in therange of personal and social valuesthey serve. Yet for twenty years, hos-pice care has been defined, bothovertly and implicitly, in public poli-cy and in social attitudes, as being ap-propriate only for those who are be-yond the reach of hope or continuedmedical care.

This understanding of hospicecare must be changed. It drives away

patients and families; it causes manyphysicians to delay hospice referral; itfocuses attention on the grave med-ical condition and prognosis that ac-companies a referral to hospice, andaway from the positive nature and as-pects of what a hospice program canachieve. People witness or hear aboutdying without appropriate hospicecare and they come to regard thatprospect as the expected course of af-fairs, as something that they mustcome to accept. Those most support-ive of hospice are people who haveexperienced first hand what it can

achieve. Americans have very high ex-pectations of health care, it wouldseem, except at the very end. Thentheir expectations are grim. It is littlewonder that so many people have somuch difficulty reconciling them-selves to the incurable state of theirdisease or to the futility and likelyburden of life-prolonging measures.

Palliative care and hospice are notthe care of “last resort;” they are notsomething that comes after otherforms of care have been tried andfailed. Palliative care is an integralpart of all health care, and should be


and round-the-clock availability for emergency advice orvisits. Caregiver support systems such as hospice are like-ly to reduce caregiver strain and consequent utilization ofhealth care resources. While they are currently unrecog-nized, reductions in caregiver morbidity and mortalityshould be factored into cost-benefit studies of hospiceand palliative care services.

In a longitudinal study of caregiving partners of menwith AIDS, Folkman found the co-occurrence of positiveand negative psychological states in the midst of endur-ing and profoundly stressful circumstances.8 While thesemen felt the stress of caregiving and the painful emotionsassociated with impending loss, they also felt good abouttheir role and the ability to deepen their relationship withthe ill person. These positive psychological states were as-sociated with the theme of having sought and foundsome positive meaning in the caregiving experience.

Four types of coping seemed to be related to the expe-rience of positive meaning: (1) problem-focused coping,(2) positive reappraisal, (3) spiritual beliefs and practices,and (4) infusing ordinary events with positive meaning.Being able to focus on the day-to-day problems and chal-lenges of caring can be rewarding, particularly if thiswork is seen as successful and enhancing to self-esteem.Finding a direct connection in the ordinary work of care-giving to this sense of personal meaning and to one’s per-ception of spiritual meaning in life serves as a counter-balance to the negative emotional reactions usually asso-ciated with having to perform caregiver duties. Caregiv-ing ought to be redefined as a noble and meaningful rolein our society.

Since the need for caregivers is likely to explode in thenext thirty years and our health care system is not posi-tioned to be able to offer much assistance, we need torecognize the importance of finding and promoting care-giver support systems that honor and encourage caringfor each other. Key to this change is a societal acknowl-

edgement of the ethical imperative to provide care foreach other. The contributions of men and women whomake the decision to become a giver of care to anotherperson should be acknowledged and, when essential,compensated. Some states, for example, are currently pi-loting family caregiver reimbursement in an effort tohelp patients avoid institutionalization. New caregiversupport systems need to be constructed and refined to re-flect new knowledge about how best to survive and thrivein the role of caregiver. For those of us not yet in need ofcaregiving, in the end, what we are doing is preparing theway for a system that will assure us of care as we reach theend of life.

1. Rosalyn Carter Institute, 2002, accessed 3 August 2002 at:rci.gsw.edu/Press%20release3_files/ExpPanCareAcrossPR2.htm.

2. R. Schulz et al., “Involvement in Caregiving and Adjustmentto Death of a Spouse: Findings from the Caregiver Health EffectsStudy,” JAMA 285 (2001) , 3123-29.

3. E.J. Emanuel et al., “Understanding Economic and OtherBurdens of Terminal Illness: The Experience of Patients and theirCaregivers,” Annuals of Internal Medicine 132, no. 6 (2000), 451-59.

4. International Work Group on Death, Dying, and Bereave-ment, “A Statement of Assumptions and Principles ConcerningPsychosocial Care of Dying Persons and their Families, in State-ments on Death, Dying, and Bereavement, 43-52. Available fromIWG Secretariat c/o Bob Bendiksen ([email protected]).

5. R. Harding and I. Higginson, “Working with Ambivalence:Informal Caregivers of Patients at the End of Life,” Supportive Carein Cancer 9, no. 8 (2001), 642-45.

6. J.I. Cameron et al., “Lifestyle Interference and EmotionalDistress in Family Caregivers of Advanced Cancer Patients,” Can-cer 94, no. 2 (2002): 521-27.

7. S. Connor, “Hospice, Bereavement Intervention, and Use ofHealth Care Resources by Surviving Spouses,” HMO Practice 10,no. 1 (1996): 20-23; Schulz et al., “Involvement in Caregiving.”

8. S. Folkman, “Positive Psychological States and Coping withSevere Stress,” Social Science Medicine, 45, no. 8 (1997): 1207-21.


viewed in that light. It should be pro-vided in a variety of modes and set-tings as the patient’s condition andlife situation call for. Hospice care in-volves much more than fast-actingpain relief medications; it has psy-chosocial and spiritual goals and di-mensions that can be met onlythrough the building of trust, com-munication, and relationships thattouch the self of the patient and thesystem of the family, not just thebody. It is not for the imminentlydying only, but for those wrestlingwith the complex clinical and person-al decisions associated with an even-tually fatal illness.

In any case, neither palliative carenor hospice care should signal the endof the physician-patient relationship,but simply a new stage in that rela-tionship, with new goals and new col-laborating caregivers. Palliative careshould not signal the cessation of var-ious forms of medical treatment cho-sen by and potentially beneficial tothe patient that might lengthen theduration of life or improve the quali-ty of life. Above all, hospice shouldnot—and does not—signal the cessa-tion of hope, but simply a shift of itsfocus.

Finally, the term “palliative care” issometimes used to refer to the addi-tion of symptom control and painmanagement services with the main-stream health care system, whereas“hospice” is used to refer to a struc-turally and organizationally distinctsubsystem that has grown up aroundthe creation of hospice agencies.

This distinction raises a wider andmore important systemic question.Should we attempt to expand accessto palliative care and to improve thequality of end of life care by adding anew layer of care management system(called “palliative care”), separatefrom existing hospice programs? Orshould we attempt to expand andbuild upon the existing infrastructureof hospice agencies to achieve the goalof expanded access and to meet theneeds of those patients and familieswho are not well served by hospice asit has been defined in the past?

It is important to recognize thatthe structure and organizational formof hospice has already been changingover the past twenty years. Many hos-pices have evolved beyond direct pa-tient care delivery. Some have becomesocial change agents, promoting morethan innovative medical approaches.They have become social institutionsin which discourse about communityvalues and life planning occurs. Theyhave become educational centers,where health care professionals rekin-dle their role of caring for patientspreviously isolated and neglected.Some hospices have become a meet-ing place for artists, musicians, andothers in pursuit of meaning. Manyhave become known for their exper-tise in grief, loss, and social recon-struction. In these instances, onemight very well say that palliative careis only a subset of hospice; it is onlyone of the social and health care func-tions that hospice serves.

We argue for the second of thesetwo approaches. The development ofpalliative skills and services in hospi-tal, nursing home, and other non-hospice settings is very important andbeneficial, to be sure. However, thismust be done in conjunction with ahospice care management system. Weneed coordination and continuity ofcare, not duplication, rivalry, andcompetition. The main reason we de-vote this report primarily to the ques-tion of increasing access to hospicecare because the existing infrastruc-ture of hospice programs is a nationalresource of continuing value and via-bility. We do not need to abandon itand return to the drawing board. Andwe do not need to build a second, de-tached system of palliative care to fillthe large gaps that hospice currentlydoes not serve. Instead, we shouldbuild on the existing infrastructure ofhospice agencies and promote theirdiversity and growth in several direc-tions. In this way we can create a solidfoundation upon which to expand ac-cess to comprehensive, holistic “hos-pice-palliative” care.

Patterns of Access to HospiceCare

What do current patterns of ac-cess to hospice care look like,

and what about them seems problem-atic? Describing access is not a simplematter. What must be measured isnot the extent to which people actual-ly get hospice care, but the extent towhich they are able to get it if theywant it.

Clearly, information on the vol-ume and distribution of hospice careresources by geographic area is rele-vant. Also relevant is information onthe way these resources are organized,such as measures of the characteristicsof providers, the particular servicesprovided, and the process of enteringinto care. Finally, the ability to obtaincare depends on the financial termson which it is available, such as theprices charged for elements of careand the nature and extent of insur-ance coverage.

To determine whether people areable to obtain services, informationon the availability of services must becompared to the size and geographi-cal distribution of the population atrisk and the characteristics of thatpopulation that determine whetherhospice care services are desired.These include age, sex, race, and eth-nicity, family structure, health carebeliefs and information, education,income, and health status.

The desire for services combineswith physical availability, organiza-tion, and financial terms to determineactual use. Although access is primar-ily about the ability of a member ofthe population at risk to obtain care,in practice, information on actualuse—“realized access”—is very im-portant in determining whether thisability really exists. Therefore, Adayand Anderson, pioneers in measuringaccess to health care, define access as“those dimensions which describe thepotential and actual entry of a givenpopulation group to the health caredelivery system.”9 A description of re-alized access requires measures of uti-lization—the type, site, purpose,timeliness, duration, and frequency of


services used—and measures of con-sumer satisfaction.

This framework contains manyareas of ambiguity. For example, howshould the “population at risk” be de-fined—that is, what is the populationthat is potentially medically suitable?What is the place of health beliefs andinformation? If a person who mightbe expected to benefit from hospicecare services does not know of theirexistence, or knows but fails to appre-ciate their value, does this constitute abarrier to access? We believe that itshould. If there are people who donot want the current package of ser-vices, but would want a slightly differ-ent package that is not available, isthis a kind of barrier to access? Again,if their expectation is reasonable, thenwe believe restrictions of services of-fered can sometimes be a barrier toaccess.10

What is the current availabilityand utilization of hospice in the Unit-ed States? Approximately 2.5 milliondeaths (both unexpected and antici-pated) occur each year, and nation-wide more than half of those takeplace in a hospital or other health carefacility, although this percentagevaries widely among regions of thecountry. In institutions, as many as70 percent of the deaths come aftersome decision not to treat (includinga do not resuscitate order). The hos-pice movement was originally seen bymany in the medical community as ahostile counterculture opposed tomainstream medicine. The doctorswere not entirely wrong. Nonetheless,with remarkable tenacity, hospice hasflourished. Twenty-five years after itsinception, an estimated 38 percent ofthose facing an anticipated deathfrom cancer and from chronic dis-eases such as CHF and AIDS receivehospice care. Prior to hospice, howev-er, profoundly ill patients in commu-nity hospitals and academically ori-ented metropolitan medical centerswere often surrounded by the latest

technological advances tocombat disease, yet whendeemed “terminal,” theywere given rudimentaryforms of palliative care atbest. They fell victim tomedicine’s inability to re-solve what Daniel Calla-han has called the “conflictabout the place and mean-ing of death in human life. . . a conflict that pits theunderlying logic of the re-search imperative, which isto overcome death itself,against the newly emer-gent (although ancient)clinical imperative to ac-cept death as a part of life in order tomake dying as tolerable as possible.”11

The number of hospice programsin the United States has grown fromone in 1974 to some 3200 programstoday, and the number of programsdoubled between 1986 and 1998. In1998 there were 540,000 hospice ad-missions, and in 2001 that figure isbelieved to be closer to 775,000.12

The most rapid period of growth hasoccurred since the early 1990s. Hos-pice programs tend to be nonprofit(62 percent in 2000) and relativelysmall, with over half the programshaving annual budgets of less than $1million, although perhaps 100 pro-grams in the country have budgets of$7-10 million. In 1995, 60 percent ofadmissions were for a primary diag-nosis of cancer, and more recently, thegrowth of certain non-cancer admis-sions may be declining due to regula-tory scrutiny. This is particularly trou-bling in light of the problem of justaccess.

Although the growth of hospiceprograms and admissions over theyears is encouraging, serious problemsremain in at least two of the three di-mensions of access identified above—admissions and length of stay. Theethics of access is most easily illumi-nated by considering patients who

would benefit from hospice care butwho are not receiving it at all, and pa-tients who receive hospice care but forsuch a brief period before their deaththat they cannot obtain the full bene-fits of hospice care.

Assume that 50 percent of the esti-mated 775,000 annual hospice ad-missions—387,500—are patientswith a non-cancer diagnosis. Yet940,000 Americans die each year ofheart disease, 113,000 of lung disease,158,000 of cerebrovascular diseases,and 23,000 from Alzheimer’s.13 Theserough figures, which admittedly in-clude sudden and unanticipateddeaths, suggest how far we have to gobefore everyone who could benefitfrom hospice care does.

But not just any access to hospiceis sufficient. The holistic, psychosocialnature of hospice care is such that re-lationships of good communication,mutual understanding, trust, and em-pathy must be established betweenhospice caregivers and patients andfamilies. This ordinarily takes severalweeks or more. Hospice physiciansand nurses may sometimes be able toget distressing physical symptomsunder control within forty-eighthours, but such crisis-oriented care isa far cry from complete hospice care.

Part One© Diedre Scherer, 1994, 8” x 7”, fabric and thread


The picture presented by data onlength of stay in hospice is not en-couraging. According to a study con-ducted by the National Hospice andPalliative Care Organization, the av-erage length of stay (ALOS) has beendeclining steadily since the early1990s, which is precisely the same pe-riod as that of hospice’s most signifi-cant growth. In 1992 the ALOS was64 days. By 1995 it had declinedslightly to 61.5 days, and by 1998 it

had dropped to 51.3 days. The rangeamong reporting programs was from12 to 186 days. Data for 1999 indi-cate that this trend has continued,with the ALOS dropping to 48 days.Crucially, the Medicare Hospice Ben-efit, which many consider too restric-tive, is built on the expectation thatpatients may be enrolled in the pro-gram for up to six months (210 days)before their expected death.

Data on the median length of stay(MLOS) show a similar pattern. Thenational MLOS in 1998 was 25 days,with a range from 3.5 days to 112days. The extraordinary difference be-tween the 1998 ALOS of 51.3 andthe MLOS of 25 suggests a very largenumber of programs and patientswith an exceptionally brief enroll-ment in hospice. Anecdotal evidencefrom around the country tends toconfirm that impression.


The nature of the care thatdying patients and their fam-ilies and loved ones receive is

fundamentally a question of valuesand ends, not of technical details andmeans. It is fundamentally a state-ment about who we are as a nationand as a community, for our moralidentity is nowhere better tested andtempered than in the respect and carewe show to those in the twilight oflife.

Diseases and frailty are essentiallydis-orders of human being, involvingphysical, cognitive, emotional, social,and even spiritual aspects. They creatediscomfort and disability and mayimpair one’s ability to lead a personal-ly meaningful and desirable life. Dis-eases frequently cause profound per-sonal, familial, and social conse-quences. Whether acute, chronic, orterminal, what we refer to as the pa-tient’s and family’s “condition” repre-sents the totality of their experiencein reference to a disease.

It was medicine’s failure to exerciseits art in response to the patient’s andfamily’s condition that made theUnited States receptive to hospice.The preferences and values of mostAmericans are not always in synchwith the aggressive life-prolongingtreatment that mainstream medicineoffers. Large public opinion surveyshave for many years confirmed thatAmericans are concerned about thecircumstances of dying and the end oflife care they and their loved ones arelikely to receive. Fear of loss of per-sonal control, of being a burden, ofbeing abandoned, and of sufferingfrom unrelieved pain stand outamong the most common worries.14

As much as we want, we cannot sup-press the question of what counts as a“good death” (or, perhaps more accu-rately, “dying well”) and what countsas good care near the end of life.

Values in Care of the Dying

All cultures consider the periodwhen people are dying to have

special significance, and America isno exception. Moreover, despite thiscountry’s tremendous diversity, re-search suggests that there is surprisingagreement among Americans aboutwhat is important at the end of life.15

The strongest message that emergesfrom this research is the importanceAmericans attach to maintainingtheir independence and having theirpersonal values and preferences re-spected as they are dying. They wantinformation about what is happeningto them and what their options are.Many fear “being hooked up to ma-chines” in circumstances in whichtheir quality of life is low, but they arenot anti-technology per se. Rather,they see decisions about the use oflife-extending technology as a matterof balancing benefits and burdens,and they want to be the ones to dothe balancing and to decide when it istime to forgo the benefit. Once it isclear that death is inevitable, mostpeople would prefer to die at homerather than in a hospital.

Americans value compassion intheir caregivers, in the sense of empa-thy—the ability to sense what a pa-tient and family are feeling and actaccordingly. The most important actof compassion health care providerscan perform is the alleviation of painand control of suffering in all itsforms. What many fear most aboutdying is the suffering and loss of dig-nity experienced by persons in severeand constant pain.

Trust is of paramount importance. People want to be able to trusthealth care providers and the systemas a whole to act in their best inter-ests. They want to be able to trust theinformation they receive about theircondition and their treatment op-tions. They want to be able to trustthe health care system to respect the

decisions they make, or their familiesmake, if they are no longer capable ofdecisionmaking.

People who are dying are oftenconcerned with spiritual or existentialissues and struggle to come to termswith the meaning of life in generaland their own lives in particular.Some have an explicit faith in religion(organized or individual), and expectto be able to turn to it for support.Others may have a more generalizedbelief that the course of life and des-tiny are in the hands of a power orpowers beyond human control.

Dying persons and their familieshave a strong sense of mutual obliga-tion. The dying want to be surround-ed by and cared for by family, andfamilies normally attach great impor-tance to being able to be with themand care for them. (The families ofsome persons with AIDS maybe anexception.) Family members believethey have a moral obligation to pro-vide this care and support; at thesame time, dying persons do not wantto be a burden and believe they oughtto be concerned about the well-beingof their families. They believe theyshould take their families’ financial,mental, and emotional well-beinginto account in the decisions theymake about end of life care, and theytry to clarify their wishes to their fam-ilies to lessen the burden of decision-making in case they become unableto make decisions.

Americans also recognize a societalobligation toward those who aredying. Dying is the ultimate privateevent, but it is also a profound socialevent; the community is automatical-ly and inherently involved. MostAmericans consider dying alone andin pain to be a tragedy. They believethat the community has an obligationto act when a dying person has nofamily, or his family is unable or un-willing to meet its obligations of careat the end of life. In a society as richin resources as the United States, it

II. The Ethical Imperative for Access to Hospice Care


Most theories of health care justice account inad-equately for hospice. They tend to regarddeath as an external force rather than as some-

thing to be integrated into an overall theory of care. Theytend to be very individualistic. And they tend to assumerelationships of equal power among independent agentswhose conception of justice is the delineation of fairrules.

Yet for most of health care, and especially for the careof the dying, these assumptions make no sense. First, ashospice workers know well, death can be a friend. Sec-ond, health care is consummately about relationships.Hospice workers also understand this clearly. Third,health care relationships, especially in attending to thedying, are characterized by profound inequality, depen-dence, and loss of control. And in the face of sickness anddeath, the ultimate question is whether life itself, not anyrule, is really fair.

To account for these clinical realities, an adequate the-ory of health care justice must have something substan-tive to say about human beings. Here, I will merely assertthat human beings are characterized by three featuresthat are especially relevant. First, as Aristotle insists,human beings are naturally social. This is sometimes re-ferred to as a principle of social solidarity. Second,human beings are finite. Death is an intrinsic element ofour humanity. Theories of health care justice must takehuman finitude seriously. Third, human beings have aradically equal intrinsic worth or dignity that commandsthe respect of others, independent of our preferences.

A human need may be defined as something requiredfor human flourishing. Indisputably, the finitude of thebody of each and every human being is both the limitingterm of all possible individual human flourishing andalso precisely the need that medicine, nursing, and theother health care professions serve. Health care profes-sionals all profess publicly to serve the needs of thosewhose bodily finitude renders them vulnerable, dimin-ished in power and control, and unable to help them-selves. Health care professionals recognize the claimsmade on them by the dignity of the sick and by theirown solidarity with them.

The finitude that the health professions address man-ifests itself in three ways—death, disease or injury, andsymptoms. These correspond (roughly) to the traditional

Medieval aphorism about the goals of medicine—“Tocure sometimes, to relieve often, and to comfort always.”

Meeting these needs requires resources. But the re-sources human beings may use to serve each other intheir unequal bodily finitude and their equal human dig-nity are always scarce. By what criteria can one judgehow best to apportion scarce health care resources inorder to promote human flourishing? This is a questionof justice, and justice requires criteria by which to makesuch judgments. I suggest six material considerations.The first five are commonly invoked in discussions ofscarce medical resources, but are not usually consideredin the context of human finitude, dignity, and solidarity.The sixth is almost never considered except as the sum ofthe other five. These material considerations are: (1) in-dividual need, (2) prevalence, (3) prospect of success, (4)alternatives, (5) cost, and (6) contribution to the com-mon good. For the sake of illustration, let us compare flushots, liver transplants, and hospice according to thesematerial considerations.

Need. The need for hospice care is very high. Symp-toms diminish human flourishing, not just death. Thedignity of the dying is never less than that of the surviv-ing. Relieving an agonizing death is as much a part ofmedicine as is preventing a serious illness or preventing apremature one.

Prevalence. As many as 70 percent of Americans willhave needs that could be addressed by hospice. By con-trast, only about 1 percent of vaccinated persons individ-ually benefit from vaccines, and fewer than 0.1 percent ofpersons will ever be eligible to benefit from a liver trans-plant.

Success. The prospect of success for hospice is ex-tremely high. Well over 90 percent of persons achieve sat-isfactory symptom relief with appropriate palliative care.By contrast, even excellent flu vaccination programsachieve only about 75 percent success. And liver trans-plants carry a 50 percent five-year mortality rate.

Alternatives. The alternative to hospice is grim—theprospect of dying an agonizing death. By contrast, the al-ternative to flu vaccines is reasonable—treating influenzacases as they arise—either symptomatically or even withanti-viral drugs. But what is the alternative to liver trans-plant? A rational person would hope that it would behospice. Many who need a liver will not receive one, andthose who are transplanted will still die. And they couldall benefit from hospice. In other words, it may actuallybe unjust to offer liver transplantation unless one canoffer a program like hospice.Daniel P. Sulmasy, “Health Care Justice and Hospice Care,” Hastings Cen-

ter Report Special Supplement 33, no. 2 (2003), pp. S14-S15.

B Y D A N I E L P. S U L M A S Y

Health Care Justice and Hospice Care

would not be right to let people “diein the gutter.” There is mutuality inthis obligation, as there is in theobligations of dying persons andtheir families toward each other. Peo-ple consider it appropriate that bothindividuals and the health care sys-tem have a sense of responsibility to-ward society as a whole and manageend of life care so that resources arenot wasted on over-treatment.

These are the values implicit indiscussions of end of life care inAmerica. These values are essentiallymoral values; together, they consti-tute a moral framework with impor-tant implications for the content andcharacteristics of care and for the dis-tribution of responsibility for the car-ing.

Equitable Access to HealthCare at the End of Life

Society’s obligation to provide endof life care plainly encompasses an

obligation to provide equitable accessto health care at the end of life. Yetthis obligation is linked to a largerissue, that of equitable access tohealth care in general. Health itself,insofar as it is the absence of pain,suffering, and serious disability, is a“primary good”—something that isgood for a person whatever his or herother ends, values and preferences.

Health care contributes directly tohealth and therefore to personal well-being by preventing or relieving pain,suffering, and disability, and byrestoring lost function. In these ways,it facilitates the continued capacity ofa person to act, to maintain dignityand integrity, to retain the capacity,in short, to have a life, instead ofmerely being alive.

Health care also expands the rangeof opportunities available to a personby helping to maintain the ability tofunction as normally as possible de-spite disease or disability. Even whenall it can offer is information, healthcare can make a person better off; itcan reassure or provide guidance onhow to adjust.

Finally, health care—at least ideal-ly and potentially—has profound in-terpersonal significance; it nurturesbonds of empathy and compassion ina society and providing a concrete ex-pression of community solidarity inthe face of suffering and death.

In recognition of this special im-portance, most countries throughoutthe world, including the UnitedStates, acknowledge a societal moralobligation to achieve fairness, or eq-uity, in access to health care for alltheir citizens. Translating this moralcommitment into practical policy is acritical social and political task. Howshould the term “equitable access to

health care” be interpreted? Access towhat? At what cost? In this country,the interpretation that best reflectsAmerican values as expressed inhealth policy debates over the years is“access to an adequate level of carewithout excessive burden.” An ade-quate level of care is also referred toas a basic level, or a decent mini-mum.

The key characteristic of the con-cept of an adequate level is its explic-it acknowledgement of limits on theextent of the societal moral obliga-tion, limits that arise out of the in-herent scarcity of the resources a soci-ety has available to it. The concept ismost easily appreciated by comparingit with other ways to define a moral-ly required level of care. For example,equitable access could be defined asaccess to whatever care would be ofbenefit. This definition ignores thereality that the benefits of health carevary in importance, from the preser-vation of life to the elimination ofminor inconvenience, and somehighly beneficial care is extremelycostly. To guarantee universal accessto all care of any benefit would beprohibitively expensive and wouldcompromise the ability to spend re-sources on other important socialgoods.

Another alternative is to defineequitable access as equal access. What


Cost. The cost of transplant is extremely high, thecost of flu shots very low, and the cost of hospice low tomoderate.

Common Good. The common good is clearly servedby flu vaccines. But hospice arguably not only serves aprevalent human need, but also accomplishes much onthe interpersonal level that enhances the common good.The opportunities for interpersonal reconciliation, car-ing, and solidarity that are afforded by hospice redoundquite substantially to the common good. In a robust un-derstanding of the common good, the flourishing of eachperson is partly constituted by the flourishing of others.This means that we all benefit when the dying are treat-ed well. By contrast, liver transplantation helps very fewpersons and contributes minimally to the common good.

This exercise suggests that, weighing all these materialconsiderations, hospice compares well with prevention

and high-tech medicine. Hospice can claim, in justice,significant medical resources vis-à-vis other medical in-terventions. Human flourishing is well served if peopledo not die miserable deaths, both for the individualsthemselves and the community with which those indi-viduals are in solidarity.

As evidence, one need only look to the poorest ofpoor nations. Those with no resources palliate, as bestthey can, their dying kinspeople. Ask any clinician whathe or she would take to a desert island. I suspect the listmight include aspirin, morphine, two antibiotics, a fewvaccines, and a textbook of surgery. These are the funda-mentals. To palliate the dying is to give them their due.This is what we owe each other, out of mutual respect forour common dignity and in solidarity with each other asfellow mortals. As a matter of justice, hospice is the leastwe can do.


matters, in this view, is not whateveryone gets, but that everyone getsthe same. (Equality is, of course, in-terpreted relative to health state; ifanyone with a certain liver diseasecan get a liver transplant, everyonewith that disease should be able toget one.) This approach seeks toavoid specifying the guaranteed level;however, it cannot succeed. Giventhe inevitable differences in incomesand personal preferences, people inthe same health state are likely to optfor different levels of care. Maintain-ing equality would require levelingup to the highest amount chosen ordown to some lower amount. Level-ing up takes society back to every-thing of benefit, or worse (since somepeople may use care that is not med-ically beneficial). Leveling down re-quires society to choose the level thatwill be guaranteed and then to pro-hibit people from buying more withtheir own resources. This would beconsidered an unacceptable restric-tion on liberty in the United Statesand probably could not be enforced.

So, one returns to defining equityas access to an “adequate level”—alevel of care that may be less than allbeneficial care but is enough toachieve sufficient well-being, oppor-tunity, information, and evidence ofinterpersonal concern to allow a rea-sonably satisfying life and peacefuldeath. Care above this level has nospecial moral status. People whowant more than the adequate levelcan get it, but society has no moralobligation to help them get it (al-though there are practical reasons asociety might want to encourage theconsumption of particular health ser-vices, just as for other consumergoods).

This analysis identifies a centralquestion for health policy: Howshould a society determine the con-tent of the adequate level? This is aquestion which countries around theworld are struggling with. The logicof the argument for basing healthpolicy on this concept does not give adefinitive answer, but it does indicate

some characteristics the adequatelevel must have.

For example, the adequate levelvaries with the availability of re-sources in the society. Since the ben-efits of health care must be weighedagainst the benefits of the competinguses for resources, rich societies canbe expected to set a higher standardof adequacy than poor societies. Inadjusting the definition of adequacyto available resources, the values andpriorities of society’s members areimportant in guiding the trade-offsamong different kinds of health ben-efits and between health benefits andother social goods.

Therefore, the adequate level’scontent cannot be determined solelyby health professionals. Moreover,since the adequate level depends ontechnology, resource availability, andindividual and societal values andpreferences, it cannot be settled onceand for all. Rather, it must be al-lowed to evolve over time in responseto changes in technology, resources,and preferences.

The importance of health care(that is, the extent to which it is aspecial good) depends on an individ-ual’s health state or condition; there-fore, adequacy must be defined in re-lation to health state. Defining ade-quate care for a health condition re-quires specification of both theamount and the quality of healthcare to be received. An adequate levelis best understood as an entire stan-dard of care, not an insurance benefitpackage that merely lists the cate-gories of services covered. In hospicepractice, it would pertain not only toadmission and recertification deci-sions, but also to the ongoing casemanagement and care planningprocess.

Finally, the adequate level doesnot include all potentially beneficialcare, but it can allow for choice. Arange of cost-worthy treatment op-tions for a condition can be includedin the guaranteed standard of care toaccommodate different patient pref-erences.

The companion concept of exces-sive burden refers to the cost of meet-ing the societal obligation to achieveequitable access. Guaranteeing accessto adequate care does not mean pro-viding care for free. On the otherhand, expecting people to sacrificeeverything else important in order toobtain health care would be inconsis-tent with the reasons for acceptingthe existence of a societal obligationto ensure access. The intermediateposition is: People should be able toobtain an adequate level of care with-out having to bear an excessive bur-den, whether in money or in othercosts such as waiting and travel time.

Given the unequal distribution ofincome and of ill health, ensuringthat no one bears an excessive burdento obtain care will mean that somewill pay less than the full cost of theirown care and others will pay more.Equity requires that the final distrib-ution of the total cost of guarantee-ing access to an adequate level of carenot impose an excessive burden onanyone. As with defining adequacy,deciding what “excessive” means is adifficult value judgment.

Given this definition of equitableaccess, the question for this report isthe place of end of life care—in par-ticular, the place of hospice care—within the level of care that all shouldbe able to obtain without an exces-sive burden on themselves or theirfamilies. Some implicitly assume thatcare for the dying should be of lowpriority in defining the morally re-quired level of care. This assumptioncan be seen in the repeated sugges-tions that the best place to look forcost savings in health care is in thecare provided in the last year of life,and in statements that define the goalof a health care system as “maximiza-tion of the health of the population.”The focus naturally turns to thosetypes of health care that can stop alife-threatening infection, rebuild ashattered leg, stave off the onset of achronic disease, or restart and evenreplace a human heart. Of course ac-cess to these types of health careseems very important.


For many years it has been a stan-dard feature of health policy analysisto assess various medical treatmentsin relation to their capacity to extendthe life of the patient. While thatrather crude mode of cost-benefit as-sessment has been superceded withthe more discerning concept of “qual-ity adjusted life years” (QALYs), theforward-looking bias remains. Oneinfluential philosophical theory ofjust distribution of health care isbased on its role in maintaining nor-mal human functioning and therebyfostering equality of opportunity forindividuals to pursue their life plansand realize their goals.16 But whatabout those who have no future, onlya present and a past? What argues infavor of expending resources onthem?

Increasing individual opportunityis part of the story, but it is not thewhole story. For much of human his-tory, medicine was relatively power-less against disease and disability. Peo-ple hoped to be made well, but inpractice the medical practitioner’smain role was to explain what washappening, suggest simple palliativemeasures to ease the patient’s suffer-ing, and, most importantly, be thereto help the patient and family getthrough the experience. Yet despitetheir limited ability to cure, providersof health care had a special status andhealth care was considered to be ofspecial moral importance.

In fact, we maintain that the con-nection of health care to death anddying—its role in easing a person’spassage from this world—is at least asimportant as its preventive and cura-tive functions in explaining the uni-versal moral significance attached toits distribution. In the words of aPresidential Commission chargedwith examining the ethical implica-tions of differences in the availabilityof health care:

Since all human beings are vulner-able to disease and all die, healthcare has a special interpersonal sig-nificance: it expresses and nurturesbonds of empathy and compas-

sion. The depth of a society’s con-cern about health care can be seenas a measure of its sense of solidar-ity in the face of suffering anddeath. In spite of all the advancesin the scientific understanding ofbirth, disease, and death, theseprofound and universal experi-ences remain shared mysteries thattouch the spiritual side of humannature. For these reasons a society’scommitment to health care reflectssome of its most basic attitudesabout what it is to be a member ofthe human community.17

Since relieving pain and sufferingis a primary goal of health care andthe “specialness” of health care isclosely related to the special vulnera-bility of the sick and the dying, hos-pice care is surely among the mostbasic of health services. In the currenthealth care system, hospice comes theclosest to providing the kind of ser-vices that conform to the values out-lined above. It is the form of healthcare that most explicitly acknowl-edges and makes manifest the inter-personal significance of health care—the bonds of empathy and compas-sion between the person cared forand the caregivers, and the extent towhich the manner of dying of a per-son concerns not only the personwho dies, but family, friends, and theentire community.

The content of the adequate levelshould reflect the priorities of themembers of the community. Con-sumer surveys and focus group stud-ies such as The Quest to Die with Dig-nity provide evidence that Americansplace a high priority on compassion-ate care for the dying.18 Additionalevidence comes from the communitymeetings held to determine healthcare priorities for Oregon’s Medicaidreform, in which participants placeda high priority on palliative care forthe dying. Even stronger evidence isprovided implicitly by the very exis-tence of the Medicare program andthe Medicare Hospice Benefit. As anation, we have not succeeded in es-tablishing a health care system that

provides universal access to adequatecare, despite our shared recognitionof a societal moral obligation. Yet wehave chosen to guarantee health careto the elderly, those who are beyondtheir economically productive yearsand in the last phase of life.Medicare’s coverage structure isflawed and does not fully meet thesocietal moral obligation, however“adequacy” and “excessive burden”are defined. Nonetheless, one thingthe program does include is explicitcoverage of hospice care.

In sum, given American values, in-cluding community philanthropyand expressed views on priorities inthe face of resource scarcity, we con-clude that timely, compassionate andappropriate hospice care belongs inthe morally required level of care. Tosay this is not, however, to say thathospice providers should receive ablank check to provide hospice carein whatever way they see fit. Wise useof health care resources is still re-quired. Wise use entails cost-con-scious organization and delivery ofthe services that are provided. It en-tails a division of responsibility forcare between the health care systemand the rest of the community (in-cluding family, friends, and religiousorganizations) so that the burden ofcare, and particularly emotional andsocial support, is shared. And finally,it entails the recognition that whilethe hospice care enterprise as a wholeis of very high priority, some end oflife care services will sometimes notbe sufficiently beneficial to warranttheir cost, given the other possibleuses for the resources. Throughoutthis report, we discuss the ways inwhich the structure of hospice careshould be brought under scrutinyand redesigned to remove barriers toaccess, improve coordination of care,and offer a morally acceptable butcost-conscious continuum of care.

What I will call “distributive models” of healthcare justice cannot supply a rationale for ex-panded access to hospice care. These models

fail because they are based on two misleading pictures:the picture of the moral agent, who resembles few of usas we lie dying and doesn’t look much like the loved oneswho care for us either, and the picture of the good to bedistributed, which seriously misrepresents the kind ofgood that hospice care consists in.

The Picture of the Person

The distributive model of justice is predicated on apicture of persons who compete for their share of

life’s goods by planning a course for their lives and thenbringing the plan to fruition through hard work and self-discipline. Norman Daniels’s argument for regardinghealth care as one of the basic social goods, for example,is that health care prevents, maintains, restores, or com-pensates for departures from normal species functioning,and that normal species functioning is an importantcomponent of the opportunity range—the array of lifeplans—open to individuals in a society. Daniels’s argu-ment, in effect, is that because ill health or disabilitythreatens people’s ability to live according to the plansthey have set for themselves, health care is owed to every-one as a matter of social justice.1

Margaret Urban Walker has recently contended thatthe normative assumption that people have “life plans” isfound in a cultural theme with a long history—“the ideaof each individual life as a career.” The “career self” wholives out this life creates a plan that permits him to be

economically and socially productive. He sets himself acourse of progressive achievement, which he navigates bybeing fit, industrious, law-abiding, and, above all, self-disciplined. “It is a picture,” remarks Walker, “of autono-my as energetic self-superintendence with a consistenttrack record over time to show for it.”2

The picture of the career self, however, far from beinga neutral representation of persons as such, is a picture ofonly some people’s lives, and even then it is not a partic-ularly accurate picture, because it leaves out the times inthe life trajectory when the career self could not yet, orcan no longer, pursue the projects or goods that give hislife meaning. The career self was never an option forthose who are poor, chronically ill, severely disabled, orthe object of others’ domination or control. And it wasnever intended for women. Women’s task was to play thesupporting roles of homemaker, domestic servant, andcare giver that both freed and compelled men to becomecareer selves. Most importantly for present purposes, thecareer self is not an option for the dying person who is nolonger economically and socially productive. “Life plans”aren’t doing the right kind of moral work here. At best,they are irrelevant, and at worst, the thought that theyare required for personhood gets actively in the way ofany useful analysis of access to hospice care.

The Picture of the Good

The language of “delivery” and “market,” and the ex-amples running through the literature of cars, pota-

to chips, or, in Daniels’s essay, coffee, suggests that thepicture of the goods underlying distributive models ofjustice is that of commodities on a shelf, waiting to beparceled out equitably. To some extent, the goods of hos-pice are indeed the material goods the distributive para-


Locating Responsibility forAchieving Equitable Access toHealth Care

If health care is assumed to have spe-cial importance to individual well-

being, then one might argue that in-dividuals can be expected to bear theresponsibility for securing access to itthemselves. Indeed, individuals bearsome responsibility; however, giventhe often unpredictable nature ofhealth and costly nature of healthcare, most people cannot ensure ac-cess to adequate care simply through

their own individual actions. Collec-tive action, including political action,is required to achieve equitable access.

Health care, especially modern sci-entific health care, is a social product.Individuals cannot produce it forthemselves. Moreover, unlike otherbasic needs, such as the need for food,clothing, and shelter, the need forhealth care is distributed unevenlyand unpredictably across individuals,and the cost of securing care can behigh relative to income. Individualscannot completely control their

health status through their own ef-forts and thereby avoid this cost alto-gether. Individual behavior does haveeffects on health status, but the effectsare complex and poorly understood,and behavior itself is not always theresult of informed and voluntarychoice. Given the potential cost, mostpeople also cannot be sure of theirability to pay for adequate care forany health condition that might strikethem unless there is some socialmechanism to spread the cost.

Hilde Lindemann Nelson, “Pictures of Persons and the Good of HospiceCare,” Hastings Center Report Special Supplement 33, no. 2 (2003), pp.S18-S19.

B Y H I L D E L I N D E M A N N N E L S O N

Pictures of Persons and the Good of Hospice Care


There are private social mecha-nisms for spreading the cost, namelyprivate health insurance and privatecharity, but they are inherently insuf-ficient to achieve equity. There aremany reasons a private health insur-ance market cannot achieve equitableaccess by itself. To give just two, in aprivate insurance market premiumscannot be adjusted in accord with in-come, and they will be adjusted in ac-cord with individual risk (to the ex-tent that risk can be predicted frominformation such as age and personal

and family health history). This re-sults in lack of access to adequate carefor some of the poor and for those athigh risk, and excessive burdens toobtain care for others. Private charitycan fill in some gaps, but it, too, hasnever been sufficient to ensure ade-quate care for all. Lack of generosityplays a role, but also important is thefact that charitable action requires thecoordinated efforts of many people tobe effective, especially if the goal is astable guarantee of adequate care forall those who cannot obtain it for

themselves. Lacking assurance thatthe donations of others will be forth-coming, people may fail to expresstheir generous impulses or may directthem to other causes.

For these reasons, the ultimate re-sponsibility for ensuring that the soci-etal moral obligation to ensure equi-table access to health care is met fallsupon government, which exists toserve as an instrument for collectiveaction. In all countries, including theUnited States, the government plays asubstantial role in the provision of ac-

digm represents them to be. There are drugs on the“commodity shelf ”—likely a hospital bed, perhaps asupplemental oxygen machine, a morphine pump, otherparaphernalia of the sickroom. And there are commodi-ty-like services provided by paid professionals.

But these, presumably, are not the only “goods” thatthe dying have in mind when they express the wish to becared for by members of their family. I suspect that theyare thinking instead of the goods of relationship, notcommodities on a shelf. When a son rather than a homehealth aide rubs his dying mother’s back, he is doingsomething more than preventing the formation of decu-bitous ulcers—he is also conveying his love and con-cern.3 When a sister listens to and fleshes out her dyingbrother’s reminiscences, she is helping him to make senseof his life, and perhaps to come to terms with his death.These goods of relationship are not fungible: they canonly be provided by those with whom one’s life is inter-twined.

Justice and Expanded Access to Hospice

While questions of distribution surely must have aplace in any theory of justice, regarding them as

paradigmatic overinflates their importance, as my cor-rected pictures of persons and goods is meant to show. Atheory of justice that focuses primarily on the distribu-tion of commodities misses too many of the other waysin which moral agents (and the societies that shapethem) can be guilty of injustice.

It seems, then, that we need a better theory of justice.If we begin from the fact of human vulnerability, itmight be possible to argue that health care is a universalright, not because it levels the playing field so that mem-bers of a society can compete on a more equal footing forthe goods and services on offer there, but because of ourshared vulnerability to pain, meaninglessness, trauma,disability, and death. On what we might call a responsi-bilities-to-the-vulnerable model of justice, expanded ac-

cess to hospice care is justified less by appeals to the cen-trality of such care for the array of life plans open to peo-ple in a society than by society’s responsibility to lookafter its most vulnerable citizens. It is a right, not becauseit fosters our ability to be productive workers and consci-entious consumers, but because the protective mem-brane between any of us and unbearable suffering isoften so thin.

On this model of justice, the dying have a claimagainst society to a basic minimum of care that fallsunder two headings. The first is relief from pain, nausea,and other forms of physical suffering—this is the pallia-tive care arm of hospice. The second kind of care is what-ever relief from spiritual and existential suffering thedying can take from their connections to somethinggreater than themselves, whether this be God, their lovedones, the flourishing of their community, or some com-bination of these. This is the “home” arm of hospice.

I would have to say a good deal more about the re-sponsibility-to-the-vulnerable model of justice before itcould be made to serve as the basis of an argument forexpanded access to hospice. If, however, I am right aboutthe pictures of persons and goods that underlie the dis-tributive model, correcting those pictures in the light ofmy criticisms might show us how such an argumentcould begin.

1. N. Daniels, “Equity of Access to Health Care: Some Con-ceptual and Ethical Issues,” in Securing Access to Health Care: TheEthical Implications of Differences in the Availability of Health Ser-vices, vol. 2: Appendices, Sociocultural and Philosophical Studies, bythe President’s Commission for the Study of Ethical Problems inMedicine and Biomedical and Behavioral Research (Washington,D.C.: U.S. Government Printing Office, 1983), 41.

2. M.U. Walker, “Getting Out of Line: Alternatives to Life as aCareer,” in Mother Time: Women, Aging, and Ethics, ed. M.U.Walker (Lanham, Md.: Rowman & Littlefield, 1999), 100-102.

3. L.A. Blum, Friendship, Altruism and Morality (London:Routledge and Kegan Paul, 1980); H.L. Nelson and J.L. Nelson,The Patient in the Family: An Ethics of Medicine and Families (NewYork: Routledge, 1995).


cess to health care. Other industrial-ized countries have created organizedhealth care systems, under govern-ment supervision, in which close touniversal access is provided to a levelof care that at least approximates anadequate level. As noted, all are strug-gling with the issue of how to deter-mine whether the care provided is infact adequate; however, the debatetakes place in a comprehensive systemin which a cost-conscious standard ofcare has already been established.

Unfortunately, the United Stateshas not achieved this much. Ourhealth care system remains a patch-work of uncoordinated public andprivate financing and delivery struc-tures that fail to meet the equity stan-dard, for any reasonable definition of“adequacy” and “excessive burden.”Some might argue that the lack ofprogress toward equitable access cre-ates serious doubt as to whetherAmericans really believe in a societalmoral obligation to achieve it. Yetboth the rhetoric and the actual con-tent of American health policy overthe years demonstrate the existenceand influence of this belief. The prob-lem is a political stalemate on the ap-propriate means to achieve equitableaccess, one that seems to be very diffi-cult to resolve. Thus it is within thecontext of an extremely flawed andinequitable overall health care systemthat we must, for the time being, con-sider access to hospice care.

Stakeholders in Hospice andTheir Responsibilities

The moral responsibility for im-proving access to hospice care is

best considered from the vantagepoint of key groups and institutionsthat play a role in it.

Individuals. Unfeeling though itmay sound, individuals have a moralresponsibility to face the prospect oftheir own deaths. There are psycho-logical and cultural difficulties withupholding this responsibility. But thecosts and consequences of a wide-spread failure to do so are too high.Facing one’s impending death in a re-

alistic and mature way enables a per-son to engage in advance health careplanning, thereby reducing the uncer-tainty and the anxiety of family andloved ones. And doing so may leadmore persons with critical and termi-nal illness to prompt their physi-cians—to give them moral permis-sion, so to speak, to refer them tohospice programs when appropriate.Patients wait for physicians to bring itup, physicians wait for patients;someone must break this viciouscycle.

Individuals also have a responsibil-ity, as consumers of health care and ascitizens, to support societal efforts tocreate a just end of life care system(and a just health care system aswhole). Research suggests that Amer-icans agree in principle that theyought to do this; however, the sameresearch indicates that people are un-comfortable thinking about deathand therefore find it difficult to liveup to this responsibility. Some of therecommendations in this report ad-dress the educational and culturalchallenge of overcoming widespreadavoidance of the topic of death anddying.

Families. Research suggests thatAmericans recognize a moral obliga-tion to care for family members whoare dying, and most would like to ful-fill this obligation. Given the chang-ing structure of American familiesand changes in women’s labor forceparticipation, fulfilling this obligationis already difficult for some families; ifcurrent demographic and socialtrends continue, the difficulty is like-ly to worsen. When the dying processis prolonged, when the patient has acondition (such as Alzheimer’s dis-ease) that requires an exceptional levelof care, when the available caregivershave other significant demands ontheir time and energy (such as youngchildren or a demanding yet finan-cially necessary job), and when finan-cial resources are very limited—thefamily may be overwhelmed. A majorgoal of hospice care is to provide thesupport each family needs in order toprovide care to the dying person

without suffering serious adverse con-sequences themselves—without, thatis to say, undue or excessive burden.

Organized religion. Religiousgroups have always been sources ofsupport for the dying and their fami-lies. Religion plays a major role in so-ciety’s attitudes toward death anddying, and the work of the profes-sional clergy and organized religiouscommunities help terminally ill indi-viduals with spiritual support andcaregiving assistance. Given these tra-ditional functions of churches and re-ligious denominations, it is somewhatsurprising that more attention is notpaid to end of life care issues in theprofessional training of clergy andthat more congregations do not fea-ture educational programs to makefellow congregants aware of the plan-ning they need to undertake, or theresources they need available, whenfaced with a serious illness. Clergymust become more knowledgeableabout hospice in the years ahead, andthe churches of America should betapped as a resource for reaching largenumbers of people with educationalprograms about hospice and aboutend of life care generally.

Physicians. Since antiquity, theprofession of medicine has acknowl-edged the special moral obligationthat makes medicine a profession, notsimply an occupation: the obligationto do what is best for patients. To ful-fill this obligation, physicians mustdo more than offer a routine set ofservices to all patients or passivelyprovide whatever a particular patientasks for. Rather, the physician mustactively help patients discover what isbest for them. Physicians have amoral obligation to make hospicecare part of this process so that pa-tients can make informed decisionsabout the role these services shouldplay in their care.

The physician’s obligation to theindividual patient generates a relatedobligation at the level of the profes-sion. Physicians as a group exercisegreat influence on the content ofmedical practice through their con-trol over medical education, entry


into the profession, and peer re-view of physician performance. Ifthere is widespread dissatisfactionwith end of life care, physicianshave a responsibility to cooperatewith one another to make theavailable care more responsive topatients’ values and preferences.Physicians have long acknowl-edged this corporate obligation,although they have not alwaysdone all they should do to meetit. Significant change is alreadyunder way, but more effort isneeded.

Finally, physicians have anobligation at the level of the entirehealth care system. The existenceof this obligation is more contro-versial. Many physicians maintainthat their responsibility is only toindividual patients. Moreover, theyargue, they have no control over thestructure of the system and are them-selves at the mercy of third-party pay-ers and the government. It is true thatphysicians cannot dictate the struc-ture of health care financing and de-livery and so cannot be held responsi-ble for it. But they can be held re-sponsible as individuals and as a pro-fession for cooperating with well-con-ceived efforts of others, including thegovernment, to improve the healthcare system and make it more respon-sive to patient values.

Recently, there have been calls for“a new medical ethics”—one inwhich the focus of ethical obligationsshifts from individuals to popula-tions. Physicians do have moral oblig-ations toward society as a whole, con-cerning public health and the healthof populations. But these obligationsare not new, and they are compatiblewith traditional understandings ofmedical ethics. We would argue in-stead for a broad understanding ofthat tradition. In our view, the oblig-ation to cooperate in producing a

fairer and more responsive health caresystem is not in conflict with thephysician’s obligation to serve the in-terests of the individual patient;rather, it is an integral part of it whenthose interests are less narrowly con-ceived.

In this project, the health profes-sion stakeholder group identifiedcontinuity of care as an importantvalue in hospice care. Continuity ofcare is extraordinarily difficult toachieve in the current health care sys-tem. An individual physician cannotachieve it for his individual patient.What is really needed is structuralchange to overcome the reimburse-ment and organizational obstacles tocontinuity of care. Physicians have amoral obligation to highlight the im-portance of continuity of care and co-operate with others to bring aboutthis change—not for the sake of anamorphous entity called a “popula-tion” or “society,” but for the sake oftheir individual patients, whose careis compromised by the lack of conti-nuity.

Organizations that provideand/or pay for health care. The beliefthat health care has special moral sig-nificance also shapes the responsibili-ties of the organizations that play im-portant roles in the financing and de-livery of health care, the provider andthe payer organizations. These orga-nizations have moral obligations tothe people they serve and to the com-munity at large. Even business andprivate industry share in this obliga-tion for they play an important rolein health care financing. For hospicecare, private insurance is less signifi-cant than public insurance, sincemost individuals who become termi-nally ill are past retirement age andhave shifted from employer-basedprivate insurance to Medicare for theapplicable coverage. Nonetheless, pri-vate hospice coverage is vital to many;private employers, private insurers,and managed care organizations sharein the responsibility for working toimprove access and quality, as well asefficiency, in hospice care.

Unfortunately, there are often seri-ous conflicts between these expecta-

Hanover Hands© Diedre Scherer, 1996, 27”x30”,

fabric and thread


If hospice-type end of life care is thought to be so goodand so helpful by such a high percentage of both pa-tients and families experiencing it, why don’t more

dying people make use of it and why don’t those who useit do so sooner? Those questions were the starting pointof the deliberations of a small study group of the Increas-ing Access to Hospice Care Project. The group had beenasked to represent a consumer perspective of the issuessurrounding some of the apparent conflicts between thesocial values our society endorses and our access to andutilization of hospice-type end of life care.

Ignorance of the Hospice Care

From the consumer’s point of view, the first answer wasobvious. Far too many potential consumers of such

care don’t even know of its existence. And, of those whodo, too many have learned of it too late to make optimaluse of its services.

Of course, for some patients, a short stay in hospice isappropriate. Patients with newly diagnosed catastrophicdisease and patients experiencing sudden and acute exac-erbations of recurrent chronic illness would indeed havebrief stays. But many who could have benefited signifi-cantly from hospice services far earlier in the trajectory oftheir dying did not even learn of its existence until far toolate. So why don’t more people know of it? And whydon’t they know of it sooner?

The first inclination for several of us was to blame thedoctors. Doctors have primary control over most of thebasic decisions regarding both whether hospice servicesshould be recommended at all and, if so, when. Doctors,we argued, are committed too strongly to curative thera-pies. Some are reluctant to inform patients and familieseven of the possibility of hospice type care, let alone itsadvantages. They have a professional commitment to thevictories of medicine and therefore to the defeat of dis-ease and death. In the case of specialists in particular,often their professional commitment is to defeat the dis-ease itself; too often they are not mindful that the battle-field on which they are fighting is the life of a dying per-son. And beyond these powerful professional commit-ments, some, either directly or indirectly, have a financial

interest in the continuation of the curative therapies thatwould, as things now stand, have to be suspended uponhospice referral.

I think it fair to say that all of us felt that this anti-hos-pice attitude, or at least a strong reluctance to informabout hospice and palliative care, on the part of some sec-tors of mainstream medicine is a significant barrier to amore appropriate use of hospice type care at the end oflife. Efforts to improve doctors’ understanding shouldcontinue, and use of social marketing to influence the at-titudes of those in mainstream medicine should be en-couraged. (The use of social marketing might be similarto what is suggested below for consumers.) But several ofus felt that medical practice was not the only barrier. Forone thing, the attitude of mainstream medicine towardhospice type care is improving. Articles in the profession-al literature and increasing numbers of statements bymedical leaders in public forums indicate a growing fa-vorable attitude to hospice-type care by the traditionaldispensers of curative therapy. And yet earlier and moreappropriate utilization of the care has generally not im-proved. Surely there must be other barriers.

Denial of Death: Individual and Cultural

Potential consumers—both dying patients and theirfamilies—could, of course, learn of the possibility of

hospice-type care from some source other than doctors.Hospitals and clinics could provide information andsponsor educational and consciousness-raising programs.Consumers could do some research on their own and ini-tiate conversations with their doctors about advance careplanning, including consideration of when hospicewould be appropriate for them. Why don’t they? Whydon’t consumers demand hospice care as at least one ofthe alternatives when they consider what is appropriatefor care during the trajectory of their particular illness?Why is there not what one of our group referred to as “amassive outraged demand” for access to hospice typecare?

One reason is that patients and families often don’twant to hear the “hospice message.” It is difficult to con-sistently attract an audience to programs that informpeople of hospice or palliative care services. There is aprofound reluctance to even think about anything otherthan restorative therapies. When doctors or friends ornurses or chaplains mention hospice as a possibility, pa-

John M. Stanley, “What the People Would Want If They Knew MoreAbout It: A Case for the Social Marketing of Hospice Care,” Hastings Cen-ter Report Special Supplement 33, no. 2 (2003), pp. S22-S23.

B Y J O H N M . S T A N L E Y

What the People Would Want If They Knew More About It:

A Case for the Social Marketing of Hospice Care


tions and the economic structure inwhich health care organizations mustfunction. Competitive pressures inthe market make it difficult for bothnon-profit and for-profit organiza-tions to fulfill moral obligations withrespect to access and quality of careand remain financially viable. Thefact is that hospitals, nursing homes,managed care organizations, and hos-pices themselves will all have to makechanges in the way they function ifaccess to hospice care is to be in-creased and if the quality of care forpersons with a soon-to-be fatal illnessis to be improved.

Some of these changes are possiblewithin the existing framework andsimply require the attention andcommitment of management tobring them about. Others will be dif-ficult for individual institutions tomake in the absence of broader struc-tural change.

Health care organizations—in-cluding hospices—have a moral re-sponsibility to do what is feasiblewithin the existing structure and tocooperate with others in advocatingfor the structural changes needed tomake it possible to meet their moralobligations. Given the hospice move-

ment’s historical experience in mak-ing care more responsive to the valuesand preferences of dying persons, thehospice community has a special re-sponsibility to take the lead in a na-tional effort to improve access totimely, compassionate, and appropri-ate palliative care.

Government. Government hastwo important roles in health care. Itis a major third-party payer, and itregulates the behavior of others in thehealth care sector. The federally fund-ed Medicare program is the majorthird-party payer for people who arenearing the end of life and who are in

tients and families may very well avoid hearing. This re-luctance on the part of potential consumers to learnabout hospice conspires with doctors’ reluctance to in-form and is re-enforced by a general cultural denial ofdeath, resulting in avoidance or at least delay in consid-eration of hospice care.

What we felt was most needed was to provide thepublic with more information and education to createthat outraged demand. We need an upstream, culture-wide, mass educational effort aimed at unveiling themany advantages of hospice type care. But the generalavoidance and denial of death in our culture makes itvery difficult for any programs designed to inform healthcare consumers of the advantages of hospice-type care atthe end of life to succeed. Up to this point, organizationstrying to inform consumers about hospice have focusedon telling potential consumers what they ought to bethinking about death and dying, what they ought to bedoing, and how they ought to be planning for death.And these efforts have, on the whole, had disappointingresults—largely because the people in the target audiencereally don’t want to think about death at all.

One possibility that we felt has not been adequatelyexplored is the employment of a social marketing ap-proach. We suggest launching a mass advertising cam-paign that would address people’s hopes and fears aboutthe ways they might die, demonstrating the advantagesof “asking your doctor” if an earlier election of hospicetype care “would be right for you.” Further, we recom-mend employing more sophisticated techniques, such asthose suggested by experts in consumer-based healthcommunications.1 Quantitative and qualitative con-sumer data would target first those consumer segmentsmost likely to be responsive. Attention would be paid tothe specific communications openings and media vehi-cles that would be most effective for the designed mes-

sages. Perhaps most important of all, we recommend at-tempting to reconstruct the public’s understanding of themeaning of hospice, dissociating it from imminentdeath, and reassociating it with trust and support and re-duction of burden to loved ones during one of life’s dif-ficult transitions.

What if in our educational messages we focused lesson hospice philosophy and of “interdisciplinary teamscoming into your homes” and more on what a dying per-son’s hopes and desires might be for personal comfortduring the dying process? For making “a good finish”?For appropriate reconciliations of estrangement? Fordying in the best way possible for that individual person,and, especially, for planning for the benefit of those whowill be left behind? What if we focused on the two mes-sages we already know are deeply felt concerns of dyingpatients and their families: that they don’t want to be aburden to their loved ones and that it is not death thatconcerns them, but the dying process?2 What if we daredto advertise hospice as a package of care that addressedthose two fears directly and effectively? And what if, asthe punch line to the advertisement, we urged the targetaudience to “tell your doctor that you think that hospice-type care is right for you and for your loved ones”?Would such efforts make significant inroads against thecultural denial of death? Would they lead to a public de-mand, informed, if not outraged, for more and earlier ac-cess to hospice type care? Many of us feel this approachhas promise, and we hope for success.

1. See S.M. Sutton, G.I. Balch, and R.C. Lefebvre, “StrategicQuestions for Consumer-Based Health Communications,” PublicHealth Reports 110, 725-33.

2. See American Health Decisions and Georgia Health Deci-sions, The Quest to Die with Dignity: An Analysis of Americans’ Val-ues, Opinions, and Attitudes concerning End-of-Life Care (Atlanta,Ga.: American Health Decisions, 1997).


Hospice care for terminally ill patients with can-cer has grown markedly during the past twodecades and has become a significant part of the

American health care system. Since its origins in the early1970s, hospice has been relatively slow in broadening itsmission and expertise beyond cancer, but today about 40percent of hospice patients die of something other thancancer; a significant and growing number are in the endstages of congestive heart failure, chronic obstructivepulmonary disease, AIDs, amyotrophic lateral sclerosis,or some other chronic debilitating illness.

Among those conditions for which hospice carewould be a blessing for many patients and families, how-ever, Alzheimer disease (AD) stands out as a vast domainof unmet palliative care need. It is true that hospice careis largely home based, but it can also be provided innursing homes and other long-term care facilities, andthat is where the vast majority of AD patients reside dur-ing the end stage of their disease. Hospice care is an ap-proach that forgoes life-extending treatment, which isoften futile and inhumane in cases of end-stage AD.Hospice is a holistic, family-centered approach to care,which is exactly what is called for when the dying patienthas already lost much of himself or herself (memory, cog-nitive ability, communication, a sense of self ) and fami-lies have typically already undergone a lengthy ordeal ofgrief and loss. Seemingly tailor-made for AD, why thenis hospice care so rare for those dying with dementia?

For the fact is that hospice is not widely recognizedand not very often used by Alzheimer families. AD waslisted on the death certificates of only 23,000 of the 2.5million people who died last year. But in fact many morethan that , maybe as many as 100,000, actually died withAlzheimer’s. No one knows for sure how many AD pa-tients are enrolled in hospice programs each year, but agood estimate is that about 7 percent of the nation’s hos-pice patients are individuals with dementia. (It is notknown how many of those have a primary diagnosis ofAD and how many are patients whose dementia is sec-ondary to some other terminal condition such as cancer.)The sad fact is that otherwise medically robust and“healthy” AD patients fall between the cracks of ourhealth care system near the end of their lives.

Truth to tell, this happens to AD patients and familiesthroughout the course of the disease. In early stages, as-

sistance at home is nearly impossible to afford, no provi-sion for respite care to give family caregivers a break isavailable in insurance policies, and rehabilitation servicesare denied. Until 2002 Medicare simply refused to payfor such services if a patient had an AD diagnosis. Later,the kinds of supports that would allow patients to re-main at home are lacking or unaffordable. AD patientsare placed in nursing homes not because they need orwant to be there, and not because their families wantthem there, but because it is the only place they can af-ford to go to get a modicum of safety, nursing care, anddignity. Finally, as they are dying, uninterested in eatingand unable to swallow, largely unresponsive to their sur-roundings and barely conscious, AD patients are oncemore the hot potato that no one in the health care sys-tem really wants to touch. Nursing homes do what theycan, but they are not always attuned to the palliative careneeds of the dying, and they have virtually nothing tooffer families who are deeply in need of healing.

Is this really a problem? Perhaps the lack of AD pa-tients going into hospice programs reflects the informedchoices and decisions of Alzheimer’s families. I don’t be-lieve that. This state of affairs reflects a lack of informa-tion more than an informed choice. And it reflects fi-nancial, systemic, and attitudinal barriers precisely of thekind detailed in “Access to Hospice Care: ExpandingBoundaries, Overcoming Barriers.”

What are the reasons for the low rate of hospice carefor dementia patients? What ethical and value issues doesan Alzheimer family face when considering hospice, ifthey hear about it at all? What special challenges doAlzheimer patients and families pose to hospice pro-grams and care givers? How can hospices be better en-abled to provide care for Alzheimer patients and families?

These are the questions that must be explored in amore concerted dialogue between the hospice communi-ty and the Alzheimer’s community in the future. Hospiceprograms are finally ready to rise to meet the challenge ofAlzheimer care; and Alzheimer families are ready to learnabout and to embrace the hospice approach to end of lifecare. If the policymakers, physicians, and other “experts”cannot facilitate this rapprochement, then they shouldget out of the way and at least stop creating barriers to it.

What barriers? In the first place, of course, there is theMedicare Hospice Benefit and its six-month life ex-pectancy rule. Utilization review and fraud and abuse in-vestigators have tended to single out Alzheimer patients(who tend to have the longest lengths of stay) in thecharts they review, and hospices are gun shy when it

Bruce Jennings, “Hospice and Alzheimer Disease: A Study in Access andSimple Justice,” Hastings Center Report Special Supplement 33, no. 2(2003), pp. S24-S26.

B Y B R U C E J E N N I N G S

Hospice and Alzheimer Disease: A Study in Access and Simple Justice

the health states in which hospicecare are likely to be appropriate. Thefederal-state Medicaid program is asecond important source of paymentfor health care for the elderly since it“fills in the holes” in Medicare forvery poor Medicaid recipients. Medi-caid also pays for health care for cer-tain categories of the non-elderlypoor. The program plays a particular-ly important role in long-term care; itpays some or all of the cost of custo-dial care in a nursing home for themajority of people receiving such

care. Many such patients have someform of dementia, and nearly all ofthem will remain nursing home resi-dents and Medicaid beneficiariesuntil they die.

Federal and state governmentshave a moral responsibility to evalu-ate these programs in the light of thesocietal moral obligation to achieveequitable access, and to make thechanges needed to ensure that there isadequate access to hospice care. It hasbeen argued that if change has notoccurred, it is simply a reflection of

the failure of the public to demand itforcefully enough. We would arguethat just as doctors have a moralobligation to exercise active agencyon behalf of their patients and helpthem determine what is in their bestinterest, so do legislators and bureau-crats have a moral obligation to beactive agents for citizens. It is theirduty to investigate the values andpreferences of the public and shapepublic programs to respond to them,rather than simply passively respondto lobbying by interest groups. In the


comes to admitting or retaining AD patients who might“live too long.” This is discrimination against patientswith dementia, pure and simple, and it has got to stop.Investigators should be directed by their superiors to usea different approach, and hospice programs should standup and fight the discrimination through administrativeappeals and in court, as many have successfully. The factis that AD does not lend itself very well to prognostica-tion.1 One of the best things that could happen to ADpatients and their families (short of the new medicinesnow on the horizon that may prevent or treat AD) wouldbe for hospice physicians and those experienced with ADto come up with reasonable guidelines for the admissionand recertification of AD patients and for policy makersto accept them. The current Local Medical Review Poli-cy on Alzheimer Disease is overly restrictive and do notreflect a state-of-the-art understanding of late-stage AD.

Moreover, there is inadequate physician awarenessand referral of AD patients to hospice in the community.This is such a familiar story. What more can be saidabout it? Actually, there is something important to besaid about the attitude of doctors that parallels that ofAD families.

Some Alzheimer families may have ethical or theolog-ical concerns about forgoing life-prolonging treatmentand opting for palliative and comfort measures only.These concerns can and should be allayed. If there is onething that the law, ethics, and the theology of virtually allfaiths agree on, it is that hospice care for end-stageAlzheimer’s patients is ethically appropriate in almost allcases. Having an advance directive is best, but even with-out one it is both ethically and legally acceptable (states’rules vary) for family members to make decisions toforgo life-sustaining treatment (including CPR, artificialnutrition and hydration, and antibiotic therapy) and toopt for comfort measures only when these decisions arein the best interest of the patient and in accord with hisor her prior wishes and values.

Still, families (and physicians reluctant to refer) mayhave emotional reasons rather than principled ethical orreligious reasons for feeling wary of hospice. Those feel-ings should not be dismissed or ignored; but they doneed to be counteracted. Because hospice has been un-derstood as a “last resort,” and as a place where people goto die, enrolling a loved one in hospice— particularly ifit is someone whom you have cared for with great diffi-culty, anguish, and self-sacrifice for a very long time—may feel like a betrayal, both of the loved one and ofyourself. Many families have already faced similar feel-ings at the time of nursing home placement and may seehospice as going through all that yet again. The remedyis real information about hospice, what it stands for andwhat it provides. The remedy is time to get to know thepeople of hospice, what it has done for other patients andfamilies. Good hospice care is so far from being aban-donment and betrayal that these feelings among manyAlzheimer families—authentic and genuine as they un-doubtedly are—are an exquisite irony.

Looking at the problem from the other side of thebed, so to speak, many hospice programs frankly havebeen reluctant to take on AD patients due to their con-cerns about the special care needs of these patients andfamilies. Hospice programs and professionals sometimesharbor misconceptions and stereotypes about dementiathat make them hesitant to reach out to Alzheimer pa-tients. Better information and experience can overcomethese misconceptions. Moreover, there are significant dif-ferences between the needs and expectations ofAlzheimer families and families that have been copingwith various forms of cancer. AD families may not takekindly to the tendency of hospice professionals and vol-unteers to come into the home, with a burst of energyand perk, and take charge of someone the family (usual-ly one or two family members, mainly women relatives)has cared for, with precious little outside help, for years.Hospices need to appreciate these differences and respectthem, just as Alzheimer families will have to understand

case of Medicare, reform is already onthe policy agenda; removing obstaclesto access to hospice care should be in-cluded in the goals of reform.

Federal and state governments al-ready have extensive regulatory re-sponsibilities in health care. Theyhave a moral responsibility to evalu-

ate the regulatory roles they currentlyplay in the light of the societal moralobligation to achieve equitable accessand to make the changes needed toensure that regulation supports thegoal of achieving equitable access tohospice care.

Finally, the federal governmenthas a moral responsibility to take thelead in trying to find a way to breakthe political stalemate and restructurethe American health care system sothat access to the entire adequate levelof care, including hospice care, isguaranteed to all.


and accommodate themselves to the hospice approach tocare.

I have heard it said that AD patients are inappropriatefor hospice because they cannot benefit from the kinds ofcare hospice has to offer. Hospice is all about meaningfullife closure, and the patient who cannot remember, can-not speak or otherwise communicate, who does not rec-ognize family, friends, or caregivers and cannot thereforecome to closure with any of them, is a patient for whomhospice has little or nothing to offer.

Whatever force these observations may have, theymiss the forest. Let’s be clear: AD patients need the ser-vices hospices provide. They need it just as much, albeitperhaps in different ways, than cognitively intact patientsdo.2 They have pain that often goes untreated becauseunnoticed and improperly assessed. Communication be-comes different as cognitive and speech pathologies pro-liferate, but it does not disappear until very late, almost atthe very end. AD patients need human concern, pres-ence, touch, and witness no less than other dying per-sons.3

Families too need the services hospices can provide—resistant though they may be, and different though theirgrieving may be. It is one thing to learn that someoneyou love will be gone in about three months, as I didwhen my mother was diagnosed with advanced cancer ofthe esophagus. It is another to see someone you love fadeand disappear over several years, and then face loss anewwhen a final decision about a feeding tube, or antibiotictreatments for pneumonia has to be made, as I discoveredwith my father’s long dying with Alzheimer’s. Hospicewas present and very helpful in my mother’s final illness.There was hardly a question about it (esophageal canceris aggressive and no treatment really works), and she diedwell, by her lights and by mine. With my father a fewyears before, however, we never heard the term. Not from

doctors, nursing home people, or the local Alzheimer’ssupport groups.

Too bad. Shortly before his death, my father had abroken hip for several months that no one in the nursinghome noticed. By that time, he was no longer speaking.Maybe the better trained eye of a hospice nurse wouldhave seen tell-tale signs of what the doctor said must havebeen constant pain. And at the time of his death, frompneumonia treated palliatively, my family could haveused some support of our own. I am an only child, andmy mother and I really had no one to talk to about hisdeath but each other. And we really did not talk aboutthat. For me, his death was a relief. She had given him somuch care in the preceding decade it should have been aneven bigger relief to her. Still, I’m not sure. Without himto care for. . . well. Alzheimer families have a great deal totalk about—a great deal of healing to do—and hospicemight help.

The barriers to expanded hospice access for AD pa-tients and families are real, and overcoming them shouldnot be taken lightly. But when looked at from a certainpoint of view, they are just so unnecessary. I suggest welook at this not as accountants with sharp pencils or ad-ministrators with rough seas of regulation to navigate.For once, let’s look at access to hospice with eyes of sim-ple justice fixed on the reality of human suffering. Peoplewho know about Alzheimer’s and people who knowabout hospice really must get their heads together and fixthis soon.

1. N.A. Christakis, Death Foretold: Prophecy and Prognosis inMedical Care (Chicago: University of Chicago Press, 1999).

2. L. Volicer and A. Hurley, eds., Hospice Care for Patients withAdvanced Progressive Dementia (New York: Springer, 1998).

3. T. Kitwood, Dementia Reconsidered (Buckingham, UnitedKingdom: Open University Press, l997), and J. Killick and K.Allan, Communication and the Care of People with Dementia (Buck-ingham, United Kingdom: Open University Press, 2001).

Numerous factors influenceaccess to hospice care. Suchfactors include public policy,

health insurance coverage, financing,the attitudes and practices of healthcare providers, and the attitudes andpreferences of health care consumers.Of course, these factors can be posi-tive as well as negative; they can facil-itate access and utilization of hospicecare as well as impede them. As weseek to facilitate greater access andutilization, we need to identify theimpediments and “barriers” to access.Here we focus on three specific areaswhere the most powerful barriersexist: (1) laws, policies, and regula-tions affecting the organization, fi-nancing, and delivery of care, (2) atti-tudes and practices of health careproviders, including referring physi-cians and hospice professionals them-selves, who are the gatekeepers of thesystem, and (3) consumer misunder-standing, misinformation, and stig-ma against hospice.

To speak of “barriers” may give themisleading impression that access isbeing deliberately blocked, as in thecase of racial discrimination, for ex-ample. But deliberate barriers are notthe principal problem. For the mostpart, the impediments to hospice ac-cess are not deliberate or invidious;they are subtle, indirect, and often in-advertent. Even in the case of thepublic policy known as the MedicareHospice Benefit (MHB), first enact-ed in 1983, the issue of constrainingaccess to hospice is complex. Ofcourse, there are conditions of eligi-bility that patients must meet inorder to qualify for federal and stateinsurance funding. But simply be-cause an individual is not eligibleunder the law and regulations forMedicare funding does not mean thathe or she is not “appropriate for”—does not need and would not benefitfrom—hospice care.

Many people receive hospice carewithout recourse to Medicare fund-ing. (In the absence of other sources

of funding, access to insurance be-comes the functional equivalent ofaccess to care.) Moreover, those con-ditions of eligibility, which will bediscussed more fully below, are them-selves viewed by many as increasinglyoutmoded, scientifically and ethically.We concur. In particular, hospice isnow based on a medical prognosis ofremaining length of life as a portal toan isolated package of services offeredin an essentially all-or-nothing fash-ion. This approach must give way toa more flexible assessment of the pa-tient and family’s condition within acontinuum of services coordinated tomeet changing needs over time.

The metaphor of barriers also im-plies that a person actively wants aparticular good or benefit but is pre-vented from obtaining it by otherpeople or by forces outside of his orher control. In the case of hospice, webelieve that sometimes a person’s ownfailure to desire or actively seek hos-pice care can reasonably be consid-ered a barrier. There is no accessproblem if a person would not bene-fit from hospice services according tohis or her own values and interests.But if the person would benefit, andthe lack of desire for hospice is basedon misinformation and mispercep-tion rather than on an authenticallyinformed choice to forgo hospice,then the perceptions should becounted as a barrier to access. We be-lieve that this barrier is quite signifi-cant, and that overcoming it will beespecially difficult. Doing so will re-quire as many changes within thestructure and functioning of hospiceas it in the outside regulatory and cul-tural environment. Thus understand-ing the barriers to hospice access canhelp prepare for our recommenda-tions for restructuring and reforminghospice.

Medicare Hospice Policy

Patients are eligible for theMedicare Hospice Benefit if a

physician certifies that they are likelyto die within six months if their un-derlying terminal disease follows itsusual course. The patient (or the pa-tient’s representative if the patientlacks decisionmaking capacity) inturn agrees to waive all otherMedicare coverage related to theirterminal illness under Part A—Medicare’s hospital benefits. A hos-pice patient’s primary physician canstill bill under Part B (Medicare).Hospice patients may be hospitalizedfor brief periods. They will be cov-ered for palliative medical proceduresas well as for various nursing andcounseling services and assistancewith activities of daily living. Spiritu-al counseling must also be provided,if it is requested. Family members canreceive bereavement counseling andfollow-up for one year after the pa-tient’s death and longer, if necessary.The purpose and underlying orienta-tion of hospice is neither to prolonglife (or, perhaps more accurately, thedying process) nor to hasten death.

Medicare payment for hospice re-quires that the patient be reassessedperiodically (initially after each of thefirst two ninety-day periods, and thenevery sixty days after that) to deter-mine whether hospice care is still ap-propriate. There is no upper limit tothe number of sixty-day recertifica-tions a patient may receive. Eventhough only patients expected to liveless than six months are eligible forthe Medicare hospice benefit at theoutset, they should not be declaredineligible simply because they livelonger than that (although it took arecent ruling from the Centers forMediccare and Medicaid Services(CMS) to establish this point). Interms of its early philosophy and interms of Medicare health policy, hos-pice was not intended to be a pro-gram of chronic or long-term care; itwas designed to be of relatively shortduration. This dilemma and centraltension within hospice is particularlysignificant to the issue of access to


III. Barriers Impeding Access

hospice care, since the prognostica-tion of life expectancy is much moredifficult with many of the terminaldiseases that afflict large numbers ofAmericans—including heart disease,chronic obstructive pulmonary dis-ease, and Alzheimer’s disease—than itis with some types of end-stage can-cer.

At any time during this period thepatient or family can decide to returnto standard Medicare coverage formedical or hospital services that hos-pice does not provide (that is, fortreatment that is curative rather thanpalliative in intent). The patient maylater return from regular Medicare tothe MHB, but must be certified oncemore as terminally ill. These provi-sions of the hospice benefit may be ofparticular significance to those pa-tients and families because they maybe hesitant to be “locked in” to astrict palliative care plan in the face ofuncertainty or disagreement amongfamily members and in the face of adesire to treat aggressively some life-threatening condition.

Hospice programs vary in the ex-tent and type of services they offer, al-though the Medicare program setsbasic standards and services (knownas “conditions of participation”) thatall certified hospices must fulfill.Some hospices offer palliative surgery,the administration of blood products,and artificial nutrition and hydrationto their patients; all provide prescrip-tion drugs and other health careequipment that are related to the pa-tient’s palliative care plan. Treatmentsfor pre-existing medical conditionsand conditions not related to the pa-tient’s terminal illness, such as renaldialysis or treatment for traumatic in-jury, are still covered under ordinaryMedicare, Medicaid, or private insur-ance. In general, hospice care is flexi-ble and tailored to the dying patient’sneeds, and to the needs of the family,within limits set by the professionalexpertise and judgment of the careteam, the financial resources of thehospice, and public policy regula-tions.

Finally, the MHB can be appliedin many different care settings, al-though the vast majority of hospicepatients are cared for in privatehomes. Nonetheless, patients eligiblefor and receiving hospice care may re-side in nursing homes or other long-term care facilities. The challenges ofproviding hospice care in nursinghomes arise less from the perspectiveof the patient or family than from thediffering perspectives of the hospiceand the nursing home; they have dif-ferent managements, different profes-sional staffs, different caregiving ori-entations, different regulatory pres-sures, and different financial interests.These challenges appear to be effec-tively resolved when nursing homepatients are frequently referred andperiodic interchanges between the or-ganizations’ management and clinicalstaff occur.

In the last few years, amid a grow-ing effort by the federal governmentto crack down on cases of fraud in theMedicare program, hospice programsthroughout the country have beenaudited, and patients with longlength of stays have been targeted forreview and investigation. This mayhave had a chilling effect on hospiceprograms, making them reluctant totake on patients likely to have alonger than average length of stay inthe program.

Policy and Regulatory Barriersto Access

The problem is not the hospicephilosophy or the planned, pal-

liative, holistic approach to care, butrather the artifacts of Medicare policy(and similar restrictions in the privateinsurance sector) that inappropriatelyrestrict utilization of hospice care. Increating the MHB and through sub-sequent modifications of it, Congressunquestionably increased access tohospice for millions of dying Ameri-cans and their families. Today, 75percent of hospice patients nation-wide are covered by the MHB.19

Nonetheless, certain provisions of theMHB present serious barriers to ac-

cess. Regulations developed to ad-minister the MHB, methods em-ployed in monitoring regulatorycompliance, and penalties imposedfor non-compliance have created ad-ditional obstacles in recent years.

The six-month rule. One majorbarrier to access is the MHB eligibili-ty requirement that a physician certi-fy that a patient has less than sixmonths to live if his or her underly-ing disease follows its expectedcourse. This provision of the law wasdesigned to restrict access for two rea-sons: to control the overall costs tothe Medicare program, and becausethe attitude in the early 1980s wasthat hospice should be restricted pri-marily to those in the terminal stageof an otherwise incurable and lethalform of cancer. Hospice was for thosewho could not be cured, or thosewhose life could not be substantiallyprolonged. Moreover, hospice wasnot to become another branch of thechronic and long-term care system.Rather than being integrated into ex-isting nursing homes, for example,new and separate organizations certi-fied as hospice programs were to beset up and would primarily providein-home care to the dying.

These early characteristics, reason-able as they may have been at thetime, are inadequate to meet theevolving needs of patients and fami-lies today. Hospice does and shouldserve persons dying of many differentlethal, incurable diseases besides can-cer. However, only solid tumor can-cers lend themselves at all well to theprognostication of six-months life ex-pectancy. Life expectancy for patientswith congestive heart failure, chronicpulmonary lung disease, diabetes,renal failure, and other life-threaten-ing diseases cannot be predicted withthe specificity the MHB regulationsseem to require.20 Many physiciansare thus unable or unwilling to signhospice certification, and many hos-pice programs are worried that theywill be accused of misconduct if theyaccept patients who may defy the ini-tial prediction and remain on MHBcoverage for more than six months.


They may be concerned if the patientsimply lives longer than the averagehospice patient nationwide, which isabout forty days. Hospice programsmay also be open to retroactive denialof reimbursement for care alreadyprovided; if so, service to a number ofsuch patients could be financiallycrippling to the hospice program.21

In sum, hospice admission basedon rigid prognostication criteria isscientifically unsound on a patient-by-patient basis; therefore, patientsare not referred to hospice as intend-ed in the initial legislation. The intentof the 1982-3 hospice legislation wasto enable additional services to pa-tients and families during the last sixmonths of a patient’s life.22

Fearing denial of reimbursementand ensuing financial difficulties,some hospice programs are denyingaccess to those whose condition is notworsening or who might stay for solong that they would bring regulatoryscrutiny upon the hospice agency. Atthe present time, the predominantposture of the hospice regulatorycommunity seems to be to limitrather than to promote access and

length of stay. Whether this is the in-tended effect of the regulator’s actionsand interpretations, or whether suchan outcome is an unintended conse-quence arising from an atmosphere ofmisunderstanding, caution, and mis-trust, is difficult to say. What is clearis that hospices should not be penal-ized if the patient lives “too long.”More to the point, the patient andfamily should not be penalized. Hos-pice should have the flexibility to ad-just the care plan and the services de-livered to fit changing patient condi-tions over time. Hospice should notbe required to discontinue care andto sever established relationships withpatient and family.

Thus the MHB patient eligibilitycriteria, coupled with fiscally punitiveregulatory oversight by the federalgovernment and by the private fiscalintermediaries that contract with thegovernment to oversee hospice pay-ments, pose ethical dilemmas for hos-pices. To survive the Medicare riskarrangement, the average hospicemust have a patient mix that includeslong lengths of stay; these patientsoffset the financial losses associated

with a high volume of low length ofstay patients. If they admit too manypatients who might live too long,they risk penalties that could preventthem from providing care to otherpatients closer to death. If they dis-criminate against patients who mightlive too long, on the other hand, theywill seriously undermine the kind ofaccess to needed and beneficial ser-vices that justice also requires.

The discrepancy and ethicaldilemma come about because weknow that persons who may actuallylive longer than six months nonethe-less can significantly benefit fromhospice services. A patient may notneed every service that a hospice canprovide all at once, but over time andacross a continuum of care and a va-riety of care settings, special aspects ofhospice care are very important to agiven individual. The MHB, howev-er, allows access only to intensive in-terdisciplinary services once the pa-tient has crossed the six-month Rubi-con. This one-size-fits-all perspectiveis mirrored in the flat per diem reim-bursement rate that hospices receivefor Medicare patients. It is not riskadjusted and is not keyed into the pa-tient’s dynamic plan of care.

Little wonder, then, that in 1998,the National Hospice and PalliativeCare Organization identified the re-quirement of a six-months prognosisas the single most important barrierto extending hospice care to moreterminally ill Medicare patients.23

The stigma of the hospice option.A second aspect of public policy thatconstitutes an important barrier toaccess and utilization of hospice ser-vices is the MHB requirement thatpatients forgo life-prolonging treat-ments and waive Medicare coveragethat would otherwise pay for suchtreatments. Hospice programs willnormally include in a patient’s careplan only those treatments that arepalliative in nature and intent, and


Sadness and Consolation© Adele Shtern, 1991, 10”x10”, digital print

the hospice is normally expected topay for the cost of such treatmentseven if it involves palliative radiationor palliative surgery. If patients donot agree to such a plan of care, theyare normally not enrolled in a hospiceprogram and must continue to re-ceive normal Medicare coverage andnormal medical care (including non-hospice palliative treatments, if avail-able) in the mainstream health caresystem. Hospice patients who changetheir minds can of course leave the

MHB and re-enter the ordinaryMedicare system at any time.

This arrangement reinforces thedichotomous thinking so prevalent inAmerican culture that the dying orterminally ill occupy a separate zoneoutside of normal society and previ-ous life experience. While hospiceproponents are quick to say “hospiceis about life and living,” patients andfamilies understandably are reluctantto accept hospice admission becauseit is an admission of impending deathand because, to some, it is seen as

“giving up” and failing to “fight thegood fight until the end,” rather thanas an active, sometimes even aggres-sive, mode of medical, nursing, psy-cho-social and spiritual care that pro-vides many tangible benefits to thepatient and family. Thomas Hoyer ofCMS describes the stark separationenvisioned at the time that regula-tions to administer the MHB weredeveloped: “We saw the choice be-tween hospice and Medicare as a mo-mentous one; as a choice whichwould place beyond the everyday


Addressing the ethical basis for improving access tohospice requires considering not only the needsof dying individuals, but also the needs and re-

sources of the family, community, and society. Thus apopulation-based public health model is clearly relevantto the question of access. But while a public health modelcould make many critical contributions to improvingend of life care, it is also limited. Extending the model toencompass concern for the dying may be prerequisite toengaging the public health community. There are threepossible ways to expand the model.

Health Promotion and Disease Prevention

The goals and scope of public health in the UnitedStates reflect the World Health Organization’s classic

definition of health as “not merely the absence of disease,but optimal physical, mental, and social well-being.” Ap-plied to the dying, our consumer stakeholders viewedthis definition as including attention to the relief of painand suffering, maintenance of an individual’s functionalabilities and social relationships to the extent possible, re-flections on the meaning of life, peaceful life closure, andsupport for grieving family members. Hospice embodiesthese values, and therefore increasing access to hospicecan be viewed as promoting the health of people near theend of life.

Hospice cares for dying patients at home or in ahomelike environment, where they generally feel safestand most comfortable and have the greatest degree of

control. Interdisciplinary hospice teams prevent patientisolation and abandonment, fragmentation of services,unnecessary hospitalizations, and avoidable stress to pa-tients and families. Hospice standards promote patientchoice, resolution of intra- and interpersonal problems,and growth at the end of life through coaching and ther-apeutic guidance. Hospice also goes beyond the tradi-tional medical model by including the family in both theunit of care and the caregiving team, by working to re-lieve unbearable caregiver burden, and by maintainingsupportive contact with grieving family members aftertheir loved one’s death.

The notion of health promotion for the dying is con-sistent with public health efforts to enhance quality oflife, but it appears incompatible with the emphasis in theUnited States on increasing longevity. Consequently, thepublic health model does not provide a compelling ratio-nale for including quality of dying in the nation’s healthpromotion mission. Even if this obstacle can be over-come, public health weighs competing demands forscarce health promotion resources by assessing probableintervention outcomes in terms of Quality-Adjusted LifeYears (QALYs) and other metrics that cannot capture thebenefits of hospice care to patients and therefore doom itto low priority. For both of these reasons, focusing on thepotential of hospice to reduce morbidity and prevent pre-mature mortality among patients, their family members,and other caregivers may be more productive in engagingpublic health’s intellectual and organizational resources.

Hospice professionals have long observed that the carethey provide appears to reverse the decline of some dyingpatients. Hospice care also may prevent suicide and sui-cide ideation among terminally ill persons suffering fromdespair, severe pain, and acute depression. Hospice may

Carol D’Onofrio and True Ryndes, “The Relevance of Public Health inImproving Access to End of Life Care,” Hastings Center Report Special Sup-plement 33, no. 2 (2003), pp. S30-S32.

B Y C A R O L D ’ O N O F R I O A N D T R U E R Y N D E S

The Relevance of Public Health in Improving Access to End of Life Care

grasp of the patient the offer of cura-tive care and substitute for it, everyday, the reality of palliative care.”24

In its early days, hospice was at-tractive to many patients and familiesbecause the alternative was dying inpain, or becoming dependent onproviders who saw them as failures.Today, as life-extending treatmentsare increasingly available, patientsand families are understandably leeryof being compelled to choose be-tween receiving care to extend life, onthe one hand, and care directed to-

ward their comfort, on the other.Difficulty in making this decision de-lays access to hospice for many dyingpatients—often until they have onlydays or hours to live, as the statisticson hospice length of stay demon-strate.

This provision of the MHB islikely to become a much more formi-dable barrier to hospice access incoming years. Advances in molecularbiology and technological innova-tions in bioengineering are fuelingthe development of new medical

therapies at an unprecedented pace.Concurrently, intensified efforts arebeing made to enroll patients in clin-ical trials testing new drugs and med-ical devices.25 Even when patients rec-ognize that participation in a clinicaltrial may not benefit them personally,many regard this as a meaningfullegacy to the advancement of sciencethat will help others.

Requiring that MHB enrolleesforgo restorative therapies also has be-come a barrier to quality hospicecare. It also excludes hospice from


have an even greater impact in preventing excess morbid-ity and mortality in family members who care for thedying and mourn their loss.1 Elevated mortality follow-ing bereavement has been documented in Europe andthe United States, while an extensive literature links be-reavement to poor mental health, including post-trau-matic stress disorder.2 Although studies are needed to as-sess the extent to which hospice care can reduce thesenegative sequelae of dying, the significance of these prob-lems will increase with the growth of the elderly popula-tion in the United States and the related caregiving bur-dens of family members. Public health therefore may beattracted to the preventive potential of hospice.

Vulnerable Populations

Public health seeks to protect those most at risk of in-jury, disease, and negative health consequences

throughout the life course. Protecting children and youthhas long been a priority, with special emphasis on perina-tal health because the vulnerability of both mothers andinfants is heightened during pregnancy, birth, and themonths following. Public health has largely ignored theheightened needs, dependency, and increased vulnerabil-ity of people at the other end of life. Nevertheless, enor-mous numbers of Americans die an anticipated ratherthan sudden death, and many credible studies indicatethat dying outside of hospice does not go well. Patientsreceive care from multiple providers in a variety of sepa-rately governed and poorly communicating settings.Many are forced to endure futile therapies and proce-dures they do not want in an environment that takesaway their sense of control and neither acknowledges normeets their individual needs. Distress from pain andother symptoms often goes unrelieved, and spiritual an-guish is neither diagnosed nor treated. Fear of being aphysical and financial burden to families is common.

These characteristics complete a full portrait of whatDame Cicely Saunders referred to as “total pain.” Others

equate these conditions with torture. Although it hasbeen said that “nothing is worse than death,” the contin-uation of such very bad circumstances may be a worseoption from the viewpoint both of patients and familiesand of a society concerned about the effective use of itsresources. Nonetheless, reflecting medical culture andAmerican culture generally, public health has denieddeath or regarded it as defeat. Consequently, publichealth advocacy and services for victims of war, politicaltorture, and other violence have not been paralleled byconcern for the silent victims of bad dying. No protesthas been mounted against futile treatments or unwantedresuscitation. Fear that administering pain medicationwill result in addiction has been recognized as an unin-tended side effect of the War on Drugs, but few stepshave been taken to ameliorate this problem. Perhaps re-focusing on the plight of those living the last stages of lifewill awaken public health concern for the vulnerability ofthe dying. Public health’s strong moral commitment tosocial justice and the reduction of health disparities de-mands no less.

Core Functions

A1988 report found the U.S. public health system tobe in disarray, but with its fundamental problem-

solving capacity intact. 3 Subsequently, some progress hasbeen made in strengthening the public health infrastruc-ture, most recently to protect the nation against bioter-rorism; however, the system still is ill prepared to handlethe unprecedented challenges arising from rapid growthof the elderly population.4 Public health therefore needsto confront these issues through its core functions of as-sessment, policy development, and service assurance.5

Acknowledging as part of this initiative that dying is theinevitable outcome of chronic disease and aging wouldenable public health leaders to contribute significantly toimproving end of life care.

It would be helpful to have a Surgeon General’s report

contemporary efforts to integrate dif-ferent kinds of care. During the lasttwo decades, hospice pioneers, pallia-tive care specialists, and some con-sumer advocates have come to viewcurative and palliative care as comple-mentary approaches that should beprovided in a changing mix over thecourse of an illness to meet patientneeds. This concept has been mostclearly articulated in guidelines forpain control issued by the WorldHealth Organization and more re-cently in the United States by theAgency for Healthcare Research andQuality. 26

One way of increasing access totimely hospice care, tailored to thecurrent condition and needs of thepatient within a continuum of care,would be to allow hospice programsto offer different types of services topatients at earlier stages of their ill-ness.

Constraints on the mission ofhospice. A third aspect of public pol-icy that creates a barrier to access andto broadening the range of patientswho could be served by hospice areprovisions in the MHB and hospicelicensure requirements that place (orhave been interpreted as placing) nar-

row restrictions on the services hos-pice programs are allowed to provideto non-MHB patients. Barriers previ-ously discussed are exacerbated by therequirement that hospices serving pa-tients enrolled in the MHB primarilybe in the business of providing hos-pice care. Because of this poorly de-fined restriction, hospices that carefor MHB enrollees tend to avoidserving Medicare beneficiaries beforethey enroll in the benefit. Patientsand families who need counseling atthe time of a terminal diagnosistherefore are denied access to the helpthat hospice professionals can pro-


on the health implications of dying from chronic diseaseto complement a 2002 report which indicates thatchronic diseases are responsible for seven of every tendeaths in America and 75 percent of the one trillion dol-lars spent annually on health care in the United States.6Consolidating available data on care of the dying withina public health framework would focus attention on thisvulnerable population and their family members, providestrategic guidance to organizations working to improveend of life care, identify ways in which public health cancontribute to this effort, and create a path-breaking re-source for public education and community involve-ment. Most important, such a report would lay the foun-dation for additional public health assessment, policy de-velopment, and service assurance to improve care of thedying.

Public health also could help analyze the problem bystudying the “epidemiology of bad dying,” developingnew metrics to measure the extent to which currentlyrecognized outcomes of “a good death” are beingachieved, and assessing unmet population needs. In thisregard, questions about the dying might be added to sur-veys monitoring progress toward the Healthy People2010 objectives, particularly those concerned with func-tional status and access to needed health services.7 TheWorld Health Organization’s 1990 Cancer Pain Initiativeprovides a valuable prototype for examining available in-terventions and resource requirements as the basis forpublic health policy development and service assurance.8

The Turning Point initiative offers opportunities to in-volve states and communities in transforming the publichealth system to assure compassionate care for the dyingand their families.9 This goal should be part of the visionand moral commitment of public health in the twenty-first century.

1. R. Schulz and S.R. Beach, “Caregiving as a Risk Factor forMortality: The Caregiver Health Effects Study. JAMA 282 (1999),

2215-19.2. J. Kaprio, M. Koskenvuo, and H. Rita, “Mortality after Be-

reavement: A Prospective Study of 95,647 Widowed Persons,American Journal of Public Health 77, no. 3 (1987), 283-87; P.Martikainen and T. Valkonen, “Mortality after Death of Spouse inRelation to Duration of Bereavement in Finland,” Journal of Epi-demiology and Community Health 50, no. 3 (1996), 264-68; C.Schaefer, C.P. Quesenberry Jr, and S. Wi, “Mortality followingConjugal Bereavement and the Effects of a Shared Environment,”American Journal of Epidemiology 143, no. 11 (1996), 1177-78; S.Zisook, Y. Chentsova-Dutton, and S.R. Shuchter, “PTSD follow-ing Bereavement,” Annals of Clinical Psychiatry 10, no. 4 (1998),157-63.

3. Institute of Medicine, Committee for the Study of the Futureof Public Health, The Future of Public Health (Washington, D.C.:National Academy Press, 1988).

4. F.D. Scutfield et al., “A Survey of State Health DepartmentCompliance with the Recommendations of the Institute of Medi-cine Report, The Future of Public Health,” Journal of Public HealthPolicy 18, no. 1 (1997), 13-29; J.E. Fielding, “Public Health in theTwentieth Century: Advances and Challenges,” Annual Review ofPublic Health 20 (1999), xiii-xxx.

5. Institute of Medicine, Future of Public Health.6. U.S. Department of Health and Human Services, The Bur-

den of Chronic Disease and Their Risk Factors: National and StatePerspectives, 2002; A Report of the Surgeon General, NationalCenter for Chronic Disease Prevention and Health Promotion,Centers for Disease Control and Prevention (Washington, D.C.:U.S. Government Printing Office, 2002).

7. U.S. Department of Health and Human Services, HealthyPeople 2010: Understanding and Improving Health, 2nd ed., 2 vols.(Washington, D.C.: U.S. Government Printing Office, November2000).

8. World Health Organization, Cancer Pain Relief and PalliativeCare, WHO Technical Report Series 804 (Geneva, Switzerland:The World Health Organization, 1990); K. Foley, “UnderstandingPalliative and Hospice Care as a Public Health Issue,” presentationat Increasing Access to Hospice Care Project Meeting II, Alexan-dria, Va., 13-14 July 2000.

9. V. Lafronza, “Applications of Public Health Approaches forEnd of Life Care,” presentation at Increasing Access to HospiceCare Meeting II, Alexandria, Va., 13-14 July 2000.

vide. Efforts to integrate curative andpalliative care in hospitals, nursinghomes, and other non-hospice set-tings are often frustrated. 27 TheMedicare Conditions of Participation(COP 418.50) and provider regula-tions in some states serve as barriersto upstream palliative care providedby a hospice. These barriers are notinsurmountable, but they preventhospice from addressing patientproblems easily, economically, andsystematically.

Despite this deterrent, some hos-pice organizations have been creativein developing special programs underother licenses to meet the needs ofpatients not enrolled in the MHB,their family members, and others inthe community. Palliative care con-sultation by hospice professionals isone approach to improving end oflife care in hospital settings. The con-sultants are available based on re-quests from the patient’s attendingphysician. However, hospices thatprovide such programs must ensurethat revenue streams are kept separateand that they comply with distinctsets of program regulations. The ad-ditional administrative costs discour-age such efforts, but this may be onearea where much can be done withnothing more than creative new regu-lations (or new interpretations of ex-isting regulations) and intelligenthospice management and leadership.

Adversarial regulatory enforce-ment. Another important barrier toaccess that is related to public policyinvolves the variety of ways in whichpolicy is interpreted and oversightfunctions are carried out by variouspublic and private agencies. For ex-ample, the practices of CMS fiscal in-termediaries (FIs) impose additionalfinancial problems on MHBproviders. If a payment claim is de-nied by the FI, it may be appealed toan administrative law judge, and,tellingly, most rulings are in favor ofthe hospice. But pending resolutionof the appeal, the intermediary canwithhold all MHB payments for thatpatient from a hospice provider.

In addition, MHB regulationshave become increasingly inflexibleover the years. For example, medicalindicators that began as flexible, vol-untary guidelines to assist privatephysicians in planning the care oftheir hospice patients have beentaken over by CMS and the fiscal in-termediaries and transformed intobinding Local Medical Review Poli-cies (LMRPs) that substantially affectthe process by which a patient is al-lowed to continue on as a hospice pa-tient under the MHB. Despite theirpsychological and social needs for ser-vice, if the patient’s medical condi-tion is not deteriorating, the hospiceprogram may be required to deny thepatient recertification as eligible forthe MHB for the upcoming benefitperiod. In fact, it is often the mark ofgood hospice care that some aspectsof the patient’s medical condition (tosay nothing of his or her psychologi-cal condition) may improve shortlyafter enrollment in a hospice pro-gram. In any case, hospice is not sup-posed to be about dying on atimetable or a fixed schedule. But anarrow interpretation of the LMRPscan substantially threaten access tohospice in perhaps the cruelest andmost unjust way of all, by taking thecare and the caregivers away from apatient and family once a therapeuticand trusting relationship has alreadybeen established. While CMS chiefThomas Scully sent a written com-munication to NHPCO in May2002 acknowledging the difficulty ofaccurate prognostication, the effectsof the FI’s low tolerance of error re-garding prognostic accuracy are ex-pected to linger on.28

Other examples of regulatoryoversight that have a chilling effect onaccess and utilization of hospice arisein the context of fraud and abuse in-vestigations. In the early 1990s, aftera serious case of hospice fraud wasuncovered in Puerto Rico, a pilotprogram of audits and investigationswas launched in selected statesaround the country. This programhas since been expanded into a na-tionwide effort. Continuing concern

about mounting health care costs,which are believed to be linked towidespread Medicare and Medicaidfraud, has spurred the Office of theInspector General (OIG) in the De-partment of Health and Human Ser-vices to intensify its search for fraudand abuse.29 Certified MHBproviders have been subjected to in-tense scrutiny for the past severalyears.

These actions have impeded accessto hospice in at least two criticalways. First, hospice leaders reportthat OIG activities had a chilling ef-fect on the referral of non-cancer pa-tients and contributed to the declin-ing median length of hospice patientstay, which has dropped to as low asseven days in some parts of the coun-try. Second, the OIG’s actions havethreatened the financial viability ofsome MHB providers. Even thoseeventually found to be in exemplarycompliance had to absorb high costsassociated with prolonged OIG in-vestigations at the same time that theinvestigations were reducing patientcensus, staff productivity, and organi-zational income.

Special barriers in nursing homesettings. The problems that hospicesencounter when they attempt to carefor dying persons who reside in nurs-ing homes also force us to face diffi-cult regulatory dilemmas. It seemslikely that the next generation of hos-pice patients will be older, frailer,more cognitively impaired, and lessable to be cared for at home than pre-vious patients have been. The num-ber of Americans needing long-termcare and support will rise from 100million today to 160 million by2040. Many of them will die whileresidents of nursing homes.

Hospice must find a way to inte-grate its caregiving into the environ-ment and culture of long-term carefacilities if adequate hospice access isto be achieved. Diagnoses of patientswho initiate hospice after nursinghome admission are similar to thosethat characterize the typical long-staynursing home residents. Thirty-sevenpercent of hospice nursing home pa-


tients have a principal diagnosis ofcancer, compared to 63 percent of all1996 Medicare hospice beneficia-ries.30 As in the home care setting, theMHB requirement for a definitivesix-month terminal prognosis is amajor impediment to access amongnursing home residents. The impreci-sion of survival prognoses for personswith chronic illness, such as demen-tia, congestive heart failure, andchronic lung disease, may limit acces-sibility to the Medicare hospice bene-fit for the majority of nursing facilityresidents.31

Other regulatory problemsabound in the nursing home. TheMHB is available to nursing homeresidents who are eligible for bothMedicare and Medicaid and to pri-vate pay residents, but not to thoseon the Nursing Home Medicare Ben-efit. When hospice care is provided inthe nursing home, hospice is paid theMedicare hospice payment and 95percent of the Nursing Home Medi-caid per diem, which the hospicepasses along to the nursing home topay for the non-hospice care its staffprovides. But there are financial in-centives for nursing facilityadministrators to prefer MedicareSNF reimbursement over Hospicereimbursement. Reimbursementrates are higher relative to the ratesthe facility would receive were thedual-eligible beneficiary to electMedicare hospice (and thus haveMedicaid-reimbursed room andboard). Therefore, nursing home ad-ministrators reportedly promote ad-mission to Medicare skilled nursingcare, and, by doing so, “discourage”Medicare hospice enrollment of nurs-ing home residents. Furthermore,when a nursing home resident en-rolled in hospice is admitted toMedicare-reimbursed skilled nursinghome care after a hospitalization, theresident may be discharged from hos-pice if he or she cannot or will notprivately pay for hospice care or forSNF room and board.

The divergent goals and percep-tions of nursing homes and hospicescontribute to access problems. Nurs-

ing home regulations reinforcerestorative or rehabilitative goals. Sur-vey procedures and policies containedin the state operations manual forboth hospices and nursing homes areoften contradictory. The survey pro-cedures for each service are not coor-dinated. The effect is that a hospicepatient in a skilled facility is surveyedby two different surveyors with dif-ferent rules and potential deficienciesstemming from legitimately differentapproaches to care.

Through a series of reports begin-ning in 1997, the OIG questionedthe length of hospice stay and possi-ble duplication of services for nursinghome residents receiving hospice,lower volumes of hospice servicesprovided in nursing homes, and pos-sible hospice kick-backs to nursinghomes. Although the OIG foundthat the average length of hospice stayfor nursing home residents was 181days, subsequent studies questionedOIG methodology and disputedthese findings. New analyses showedthat the length of hospice stay for pa-tients in nursing homes is largely sim-ilar to that of their counterparts inthe community. Their average timein hospice is brief, with over 50 per-cent under hospice care for less than30 days, 25 percent for a week or less,and 7 percent for two days or less.

Despite these regulatory road-blocks, change is still worth worth at-tempting because there are clear ben-efits to be gained by increasing hos-pice care in long term care settings.32

A comparison of Medicare beneficia-ries who died in nursing homes withor without hospice revealed that hos-pice enrollment is associated with astatistically significant reduction inacute care hospitalization and in-creased likelihood of daily analgesicpain management.33 Hospice patientsin nursing facilities receive fewer in-tramuscular or intravenous anal-gesics, fewer physical restraints, fewerfeeding tubes, and fewer hospitaliza-tions. Non-hospice patients benefit aswell, compared to non-hospice pa-tients in nursing facilities that haveno contractual relationship with a

hospice. Given the extremely largenumber of vulnerable patients experi-encing dramatic staff shortages andlimited access to quality palliativecare in nursing homes, hospiceproviders should be encouraged bypolicymakers and regulators to par-ticipate in joint care delivery.

Barriers to Access Related toHealth Care Providers

Closely related to the policy, regu-latory, and financial factors that

affect access to hospice are structural,organizational, managerial, and atti-tudinal factors. These come fromhealth care professionals as individu-als and from organizational policiesand corporate cultures within healthcare institutions, not limited to butincluding hospice professionals andhospice programs themselves.

For the most part, our analysis in-dicates that the significant barriers toaccess come from sources outside thehospice community itself—fromgovernment, from non-hospicehealth care professionals, and frompersonal and social attitudes of con-sumers themselves. But it would beincomplete and untrue to say that allbarriers to access are imposed on hos-pice programs from the outside. Thehospice community needs to lookwithin and critically assess its ownprevailing traditions, attitudes, expec-tations, and practices. If the federalgovernment were to say tomorrowthat Medicare would pay for hospicefor every person who could demon-strate a need for palliative care, thehospice access problem would stillnot be solved entirely. Organizationaland social-cultural change would stillbe required, within hospice and out-side.

Hospice professionals and orga-nizations. Hospice organizationsthemselves—their policies and proce-dures, staff attitudes, and corporateculture—can inadvertently createbarriers to access and earlier utiliza-tion. Organizational change is no eas-ier in the hospice world that it is inother sectors of health care, govern-


ment, or business. Hospices are a het-erogeneous array of organizations atdiffering stages of development. Thisdiversity itself can be a barrier, for itslows the process of making organiza-tional change. Bringing about changeis often difficult because it involvesasking individuals who have becomehighly successful and accomplished atdoing one thing to risk doing some-thing else. But those who have goneinto hospice professions and manage-ment in the past are not timid. Thecreativity and ability to change in theface of changing social needs areavailable if hospice can muster theleadership to tap into them.

Geographical location can be abarrier to access. The distribution ofhospice programs in the UnitedStates is a legacy of the non-profit,community-based origins of hospice,but there has been little systemichealth planning in relation to hospiceacross the country.

In 2000, 13 percent of U.S. hos-pices were urban, 49 percent were

rural, and 38 per-cent characterizedthemselves as bothurban and rural.Comparable fig-ures for 1998 were15 percent, 42 per-cent, and 43 per-cent, respectively.Although somehospices servemultiple commu-nities, from 25 to50 percent of thenation’s hospicesserve a limited ge-ographic area. Pa-tients in inner city,rural, and remote,inaccessible areasare most likely tobe underserved. Astheir other costshave increased,

many hospice programs have discon-tinued rural services due to the lowvolume of patients and the consider-able time and personnel costs ofreaching them. Technology may behelpful here. It is estimated that 20 to30 percent of hospice patients are ap-propriate recipients of telemedicineservices (interdisciplinary assessment,emergency response, symptom man-agement, inclusion of patient andfamily in team meetings, and so on).The use of telehomecare could reducehome care visits by 30 percent andcut hospital stays in half. RNs can do15 to 25 “televisits” per day, whichcost substantially less than a regularvisit. Obstacles to implementationinclude the absence of federal andstate reimbursement, questions re-garding quality, interstate licensureand practice conflicts, patient confi-dentiality, absence of standards, cost,concerns regarding malpractice, andlack of technological infrastructure.

While the passage of the MHBgreatly stimulated the growth in hos-

pice programs and in hospice utiliza-tion during the 1980s and 90s, over-reliance on the MHB as a revenuesource can itself be a barrier to access.Such hospices may be prone to denyadmission to certain high risk-highcost patients. Moreover, many hos-pices are still unable or unwilling toserve diverse populations. Hospicebegan as a white, middle-class move-ment, and some still view it that waytoday.34 For this reason, and becausehospice organizations are often locat-ed in the “better” parts of town,35

their ability to serve people of colorand the poor has been questioned.Nevertheless, in 2000, 18 percent ofhospice patients were members ofracial and ethnic minority groups.Hospice thus has progressed signifi-cantly since its early days, but meet-ing the needs of dying patients fromdiverse cultures remains a challenge.

Some hospices are still ill preparedto deliver care to patients dying ofdiseases other than cancer. Althoughthe number of such patients hassteadily increased, 57 percent of hos-pice patients in 2000 were diagnosedwith cancer upon admission. Increas-ing access for patients with end stagecongestive heart failure, diabetes, andother chronic illnesses requires meet-ing their specialized needs. Some hos-pice programs may view themselvesas ill prepared and unequipped toserve those with dementia,Alzheimer’s, mental illness, and de-velopmental disabilities. Similarly,some hospices may shy away frompatients living alone or with dysfunc-tional families. Many hospices are re-luctant to take on the even more dif-ficult clinical and financial challengesof serving the homeless and thosewith a history of alcohol and drugabuse.

Although some hospices havestrong community connections andhave developed services customizedto community needs, other hospice


How Old Women Die...© Judith Selby, 1990, photo/color copy


programs lag behind in this area. Un-derstanding community perspectives,mores, and values and a good work-ing relationship of mutual trust andrespect are essential ingredients ofovercoming several barriers to access.They are necessary if hospices are toeducate their communities about hos-pice care, and if they are to developservices that respond to the expecta-tions of patients, families, physicians,and other community members.Without such accurate informationsharing and trust, referrals and admis-sions may be reduced, care may bejudged unsatisfactory, and communi-ty support may be scant.

Increasing access and serving morepatients for a longer period of timerequires program growth and theavailability of competent staff. Somehospices have been unable to recruitthe highly skilled clinicians needed todeliver technologically advancedforms of palliative care. Many hos-pices also have had difficulty recruit-ing bilingual and culturally compe-tent staff. Others are plagued by gen-eral staff turnover. These problems,while of course not unique to hos-pice, limit the services a hospice canprovide and also may negatively affectthe quality of services delivered. Thepoint here is not to single out hos-pices, for most of them are no moreaffected by these problems than areother health care institutions, but tonote that the lack of adequate financ-ing and other factors in the regulato-ry environment can unduly disadvan-tage hospice programs, as comparedto other providers. This is an aspect ofthe equation leading to barriers tohospice access.

Physicians. Although profession-als from many disciplines participatein delivering health care, the identifi-cation of provider barriers to hospiceaccess has concentrated on physi-cians. Physicians have primary re-sponsibility and accountability for pa-tient care and therefore a unique rela-tionship both with patients and theirfamilies and with other careproviders. Unfortunately, little isknown about ways in which the be-

havior and characteristics of otherprofessional groups affect access tohospice care. As we review the ways inwhich physicians and other healthprofessionals can create barriers to ac-cess, we should not forget that theyalso serve to facilitate access.

Failure to refer patients to hospice,delay of referrals until shortly beforedeath, and ineffective referral proce-dures appear to be the most impor-tant provider barriers impeding hos-pice access. In a recent NHPCO sur-vey of hospice providers, physician re-luctance to refer, mentioned by 35percent of respondents, was the num-ber one reason identified for the de-cline in hospice length of stay. Anumber of qualitative studies, manyof which were synthesized in a 1997review, indicate that multiple factorsmay hinder referrals.36

Physicians and other health pro-fessionals are trained to prolong life.Both the acute care focus of the U.S.health care system and the continualdevelopment of new medical technol-ogy reinforce the pursuit of this pur-pose and mission. Referral to hospicethus may be viewed as a medical fail-ure, or as depriving patients of hope.Physicians also may deny the serious-ness of a patient’s condition and per-sist in the expectation that restorativetreatments may rescue those who aredying. Willingness to forgo life-sus-taining treatments for patients varieswidely among medical specialties andfor patients with similar prognosesbut different diagnoses.37 However,compared to other Western countries,physicians in the United States aremore likely to intervene regardless ofexpected outcome.38

Commitment to prolonging lifemay be based, in part, on denial andfear of death. Physicians and nursesoften enter professional training withunresolved fears about death,39 andbecause denial of death is engrainedin the culture of the medical commu-nity,40 these fears may never be ad-dressed. In addition, physicians andnurses, like other people, are activelyinvolved in denying their own mor-tality. It is not surprising, then, that

many physicians feel uncomfortablediscussing end of life care and thatmost physicians have not talked withpatients about their preferences forend of life care.41 When such com-munication does occur, it may focusonly on the signing of advance direc-tives. Physicians are committed to re-specting patient autonomy and theirright to choose. As one observer hassaid, “They’ll present the odds of re-sponding to a Phase I clinical trialand if the patient says he wants the 1percent chance, the discussionends.”42 Nevertheless, many in themedical and bioethics community arenow challenging the notion thatphysicians must always acquiesce topatient and family desires for futiletreatments.43

If a hospice referral is made, thephysician may not provide enoughinformation for the patient and fami-ly to respond to it. Counseling is fre-quently limited to brief, one-time dis-cussions even though more interac-tion is needed to help patients under-stand the information provided, thechoices available, and the probabili-ties involved.44 Few physicians knowhow to proceed when patients orfamilies indicate directly or throughsubtle signals that they do not wantto discuss a terminal prognosis andcare options. The educational andcounseling methods used also may beineffective. Attempts to change atti-tudes about dying through direct ed-ucation may increase rather than alle-viate anxiety.

According to members of the Na-tional Hospice Work Group, themost common question raised byconsumers in family satisfaction sur-veys is “Why didn’t we know about[the hospice] sooner?” While physi-cians have stated that patients shouldideally receive conventional hospicecare for three months before death,when asked why they have delayedinforming patients of the hospice op-tion, they often say they do not wishto withdraw hope from their patients.For their part, patients often assign athreatening developmental signifi-cance to hospice: “If I enter hospice, I


must face my death; if I don’t, I won’thave to think of myself as dying.”

One significant aspect of the prob-lem of consumer misperception isthat hospice is associated with immi-nent death rather than with the pal-liative skills and competencies that in-crease people’s comfort and help themrespond to the personal and socialconsequences of their disease and im-pending death. Once imminent deathis clearly evident to a person, referraland admission to hospice are usuallyrequested.

The MHB requirement that pa-tients have six months or less to livepresents a significant obstacle to hos-pice referrals. Because the life ex-pectancy of patients is very difficult topredict unless they have solid tumorcancers, many physicians have diffi-culties in determining prognosis andare unwilling to make a prognosticjudgment.45 These barriers may be re-sponsible for a high proportion of de-lays in hospice referral until patientsare very close to death. Physician-pa-tient discussion may not increaseagreement about prognosis in severelyill patients.46

Lack of physician knowledgeabout the availability of hospice, espe-cially for non-cancer patients, is an-other barrier to referral. Lack of per-sonal experience with hospice alsomay deter referrals. Conversely, physi-cians who have had a negative experi-ence with hospice may decline to referadditional patients. Among physi-cians who know about hospice, somemay lack information about referralprocedures. And if patients are not el-igible for the MHB, physicians maylack information about insurancebenefits and billing procedures. Pa-tient policies may not cover hospiceservices, or physicians may believethat hospice care for uninsured pa-tients is not available. Some patientsmay be enrolled in managed healthcare plans that complicate the abilityof physicians to make timely referralsor referrals to preferred communityproviders.

Physicians may not make referralsto hospice because they fear losing

contact with patients and control oftheir care. Many physicians valuetheir relationships with patients andfear that referral to hospice will endtheir involvement with them, al-though this is not the usual reality.Some physicians also may be reluc-tant to refer patients to hospice be-cause they fear that they will be askedto prescribe large doses of narcotics orengage in other behaviors that couldjeopardize their medical license. Inaddition, physicians working in man-aged care organizations or minoritycommunities may not refer patientsto hospice out of fear that the referralwill be perceived by the patient aseconomically motivated.

Indeed, fear of financial loss is an-other deterrent. Hospice providers re-sponding to a NHPCO survey indi-cated that both increased competitionthroughout the health care industryand the addition of the MedicareSkilled Nursing Facility Benefit havecontributed to decreases in the meanand median length of hospice stay. Inaddition, some physicians may erro-neously fear that they will not be re-imbursed for care of patients referredto hospice. For example, one doctortold a woman that early referral of hermother to hospice would have costhim $3,600 in personal income. Thisbarrier may be particularly salient tophysicians whose practice is on the fi-nancial brink; however, it reflects mis-understanding about the MHB. Al-though physicians can reap the sameeconomic benefits from patients re-ferred to hospice that they would re-ceive if the patient remained undertheir care in a non-hospice capacity,many physicians do not know this,and hospices have not informedthem.

Consumer Barriers to Hospice

Consumer barriers to access arisefrom many sources. Attitudes,

for example, are shaped over timethrough complex interactions be-tween culture, personality, life cir-cumstances, and experience. Al-though some barriers have been asso-

ciated with demographic variables,vast differences in knowledge, atti-tudes, and behavior exist within de-mographic subgroups and ultimatelywithin families and individuals. At-tributing consumer barriers to a par-ticular characteristic such as race orethnicity therefore can be inaccurateand misleading. Generalizationsabout any ethnic or cultural group arestarting points for dialogue and inves-tigation only; they are never sufficientas a basis for clinical decisionmakingor policy.

Many Americans simply do notknow about hospice. They are nottold about it, are told about it toolate, are not told about it well, or maynot want to hear it. Those who haveheard about hospice and want moreinformation may not know where toget it. A survey conducted by the Na-tional Hospice Foundation revealedthat 75 percent of Americans do notknow that hospice care can be provid-ed in the home and 90 percent do notrealize that hospice care can be fullycovered through Medicare.47 In addi-tion, those who have heard abouthospice care may not know whatstandard of care to expect. These bar-riers reflect deficiencies in public edu-cation about hospice and in providercommunication with dying patientsand their family members, yet they af-fect access by limiting the options pa-tients and families can identify forcare at the end of life.48

The association of hospice withdeath is a major impediment to hos-pice enrollment. Some consumersmay harbor misconceptions thatdelay or obstruct their willingness toconsider hospice care. For example,patients and family members mayfear that admission to hospice will re-sult in abandonment by their doctorand the medical establishment. Somemay fear managing death at home.Others may fear that the administra-tion of morphine will lead to addic-tion, the loss of awareness in life’s lastdays, or euthanasia through overdos-ing. Conversely, the requirement thathospice patients abstain from life-pro-longing treatments may lead to the


mistaken impression that hospicewithholds all types of care, includingmedications for relief of pain andother symptoms.

As already discussed, the MHBimposes a significant obstacle to hos-pice access by requiring that enrolleeswaive their rights to Part A Medicarecoverage for curative treatments. Al-though the desire for such treatmentsis associated with the anticipated out-come, patients and families may over-estimate the probability of survival.Clinicians observe that the stage of ill-ness affects patients’ optimism aboutprognosis, their desire to know theprognosis, and expectations abouttreatment, as well as fear that talkingabout end of life care with physiciansmight cause them to discontinue ag-gressive care.49

Patients and families vary widelyin their willingness to discuss im-pending death and preferences forend of life care with each other andwith physicians and other profession-als.50 Over one-quarter of the Ameri-can adults interviewed in one surveysaid that they would not discuss withtheir parents issues related to the par-ent’s death, even if the parent wereterminally ill and had less than sixmonths to live. Adults also may havedifficulty discussing their own ap-proaching death with others, andthose who are not dying may be re-luctant to talk about the impendingdeath of a terminally ill family mem-ber.

As illness advances, the patient,other family members, and the physi-cian are likely to acknowledge the ap-proach of death at different times. Intheir classic study, Glaser and Straussdocumented the complex interactionsthat occur as various parties try to de-termine who is and is not aware that aperson is dying.51 The desire to pro-tect others from painful information,to spare them the agony of difficultchoices, or to avoid conflict whenperceptions and values differ are justsome of the factors that may deter

disclosure. These dynamics, and con-tinued denial of impending death byone or more key actors, can blockcommunication over a prolonged pe-riod. Such problems interfere withthe timely provision of informationabout hospice. 46 They also can delayand complicate advance planning forend of life care, with the result thatdecisions are not made until death istoo close for patients to obtain opti-mum benefit from the guidance andcounsel of the hospice interdiscipli-nary team.

In deference to patient autonomy,decisionmaking about end of life carehas been left to the patient; however,family members also are often in-volved. The decisionmaking process isnot easy, even at its best, for it beginswith acknowledgement that life willend and requires communicationwith at least one other responsibleparty. If death does not appear immi-nent, other matters may be accordedhigher priority.

Once begun, the decisionmakingprocess may be complicated by myri-ad other factors. Differences inknowledge about and attitudes to-ward options for care can lead to dif-ferences of opinion about the bestchoice, especially when no alternativeseems optimal and selecting one re-quires deciding whether or not tocontinue life-prolonging treatment. Ifthe patient suffers from diminishingcognitive capacity, other family mem-bers may argue about his or her pre-sumed preferences. Guilt, resent-ments, and other residuals from long-standing relationships may affect thenature and course of discussion, asmay religious beliefs, financial consid-erations, and the actual and expectedroles of different family members incaregiving. Strong feelings aboutthese issues may charge discussionswith emotion, escalate tensions, andpreclude the development of consen-sus.

Resulting delays in decisionmak-ing can completely impede access to

hospice or defer it until shortly beforedeath. Although this barrier is attrib-uted to consumers, other factors in-clude health policy, health systems,and providers, which contribute to itby failing to provide support for pa-tients and families facing difficultchoices.

A number of efforts have beenmade to educate American communi-ties about death and dying; however,attendance at public education pro-grams about end of life issues general-ly has been disappointing. Compas-sion Sabbath, organized by hospicesin some cities, has been successful inreaching community members whoattend religious services on a desig-nated weekend. The Partnership forCaring and state coalitions also suc-cessfully organized groups in manycommunities to view and discuss theBill Moyers’ television series on deathand dying. In addition, communitymembers have participated in discus-sions and other gatherings organizedin response to tragedies. Still, most ofthe aforementioned events involveonly some segments of the communi-ty on specific occasions. Unlike con-cerned citizen groups involved withSacramento Health Decisions, fewcommunities have ongoing public en-gagement programs to help peopleexplore the profound questions raisedby death and dying or to consider ap-propriate community response. MostAmerican communities treat deathand dying as a highly personal matter.When the need arises, friends, neigh-bors, and community organizationsoften spontaneously provide impor-tant help and support to dying indi-viduals and their families. However,most communities have not engagedin advocacy or other efforts to shapepublic policies that affect the care ofthe dying. The dying and the be-reaved are a silent and unorganizedconstituency, and yet policymakerstend to disregard reforms proposed byhospice and other organizations un-less accompanied by public demand.

Hospice historically has servedrelatively few people ofcolor, although some

progress has been made. In 2000, 82percent of all hospice patients in theUnited States were white; 8 percentwere African American, 2 percentwere Hispanic, 2 percent were“other,” and 6 percent were not classi-fied by race or ethnicity.52 These data,together with reports that AfricanAmericans and Hispanics receive lesspain medication than whites and agrowing body of cultural research ondeath and dying, indicate that raceand ethnicity are associated with bar-riers to hospice care.53 Identifying andovercoming these barriers is impor-tant in improving access to end of lifecare now and will become even morecritical in coming years. Between1999 and 2030, the proportion ofpeople of color age 65 and older inthe United States is projected to risefrom 16 percent to 25 percent.54

Efforts to improve care of dyingmembers of racial and ethnic minori-ty groups must be understood withinthe larger historical and social contextof their experience. Yet despite theimportance of identifying and ad-dressing issues that limit hospice ac-cess for people of color, such researchis fraught with conceptual andmethodological difficulties. Defini-tions are a fundamental issue, for thebiologically based concept of race hasbeen undermined by research show-ing more genetic variation withinthan across supposed racial groups.Ethnicity refers to country or regionof genealogical origin; however, valuesand beliefs differ greatly among eth-nic subgroups, many Americans havemulti-ethnic backgrounds, and somecome from families that have lived inthe United States for many genera-tions. Defining race and ethnicitytherefore is not easy and is subject tovarious practices.

To add to the confusion, race andethnicity are often erroneously equat-ed with culture. Culture is defined as

a shared world view and way of livingdeveloped by a society and transmit-ted from one generation to another.Culture evolves over time, influencedby a people’s history, environment,social status, religion, and experience.Migration and immigration are asso-ciated with acculturation and assimi-lation, but these processes occur at avariable pace. Variations in traditions,customs, attitudes, and beliefs there-fore develop within racial and ethnicsubgroups, and ultimately withinfamilies and individuals. Variablessuch as year of immigration, thenumber of years lived in this country,preferred language, and degree ofEnglish language fluency have beenused to classify Hispanic and Asiansubgroups. But the number of cate-gories quickly multiplies, substantialdifferences are still apparent withinthem, and the categories do not read-ily apply to many African and NativeAmericans.

Care must be taken not to avoidovergeneralizing findings. Mindful ofthese pitfalls, we attempt to providean overview of barriers that may limitaccess to or utilization of hospice bypeople of color.

Experiences with health care.African Americans are aware of thediscrimination they encounter in thebroader health care system, and thisawareness affects their attitude towardhospice. As one researcher has ob-served, “For African Americans, goodpalliative care needs to be part of alarger continuum of equitable carethat includes prevention practices andrisk assessment, diagnosis, and appro-priate evidence-based curative treat-ment. Efforts to increase utilization ofhospice and other palliative care ser-vices will fail if they do not addressthe larger societal issues faced by mi-norities. Community-based interven-tions—ones that have their originswithin the community and thereforereflect these larger concerns—aremore likely to be successful.”55

In general, people of color aremore likely than whites to distrusthealth care providers and the U.S.health care system. A 1994 survey of arepresentative sample of adults in the48 contiguous states found that 19percent of African Americans, 14 per-cent of Hispanics, and 8 percent ofAsian Americans, compared to just 3percent of whites, felt that they re-ceived inferior health care. Overall,15 percent of minorities believed thatthey would receive better health careif they were of another race.56

While not all members of racialand ethnic minorities distrust physi-cians and the health care system,health care providers should recognizethe possibility that dying patients andtheir families will question the mo-tives underlying referral to hospiceand other physician decisionmakingat the end of life. Patients and theirfamilies also may be concerned thathospice care will be of lower qualitythan hospital care and will be de-tached from personal needs and con-cerns. If they perceive that hospiceproviders are bureaucratic, they mayalso be uncomfortable dealing withthem or their agency.

Religion. Moreover, religion iscentral in the lives and deaths ofmany people of color, and yet may beneglected in health care settings fo-cused primarily on the physical careof patients.57 As a result, religious be-liefs and values that affect the care ofthe dying may not be considered inmaking a hospice referral or describ-ing hospice services. Other barriersmay arise when hospice providers failto recognize or respect religious tradi-tions, or when the utilization of hos-pice services impedes the provision ofhelp and comfort by the patient’s reli-gious community.

Religion and spirituality are cen-trally important to African Ameri-cans. Religion provides hope, a placefor belonging and feeling esteemed,and a place for releasing pent-upemotions. Church is the place of car-


IV. Race, Ethnicity, and Culture


Community is a core value for end of life care. Itcould not be otherwise. Dying confronts us withquestions that go to the heart of what it means to

be alive and human. Looking at these questions, we findthat, fundamentally, human beings are social animals. In-deed, humanness may have little meaning without a con-text of relationships with others. Vanderpool asserted,“Being part of a community is essential for the develop-ment of consciousness and individuality and is character-ized by communication, mutuality, and the ethical idealsof fidelity, gratitude, reciprocity, justice, and love.”1

At its most rudimentary level, society is about peoplechoosing an alternative to isolation and competition. Theprimal social compact is about offering cooperation andaccepting responsibility; self-interest rooted in mutualobligation. This fundamental contract—or is it acovenant?—was the initial impetus for society and re-mains a sustaining force today. Writing in that tradition,philosopher Norman Daniels has identified “equality ofopportunity” as the foundation stone of justice and hasoutlined principles to guide policy decisions and enable amoral assessment of proposed health care systems. Sever-al years ago Daniels and fellow philosopher Dan Brookwrote this about the Clinton administration health plan:

“We are members not only of a national communitybut also of many other communities that flourish with-in our society: religious, racial and ethnic, as well as theneighborhoods, towns and cities in which people sharea sense of common life. Fundamental to all these dif-ferent communities is a shared concern and responsi-bility for one’s fellow members, especially those suffer-ing misfortune and in need of help.”2

Applied to situations of illness-related suffering, dis-ability and dying, these core values suggest basic compo-nents of care that we are obligated to extend:Providing shelter from the elements. Metaphorically, we sayto the other person, “We will keep you warm and dry.”Maintaining hygiene. “We will keep you clean.”Assisting with elimination. “We will help you with yourbowel and bladder function.”Offering food and drink. “We will always offer you some-thing to eat and drink—and help you to do it.”

Keeping company, non-abandonment. “We will be withyou. You will not have to go through this time in yourlife entirely alone.”Alleviating suffering. “We will do whatever we can, withas much skill and expertise as available, to lessen your dis-comfort.”

Obligations and expectations of care find little placewithin the prevailing contractual framework of patient-provider relations that emphasizes individuals, rights andliberties. If, however, the fundamental social compact is acovenant, by extension, we must incorporate covenantalvalues and principles within our caring and our ethicalanalyses. One reason for doing so is that many peopleprefer for their proxies to make decisions about their carein ways that are, as Joseph Fins has argued, morecovenantal than contractual.3

Inherent limitations of a contractual model carry pro-found clinical and social implications. Fins notes that thecontractual decisionmaking is founded on underlyingdistrust and requires external strategies such as advancedirectives, which assign responsibilities, rules and restric-tions on surrogates. Protection of autonomous individu-als from unwanted intrusion is the highest value. This in-sight sheds light on the “right to die” as a logical exten-sion of the contractual model as applied to illness, suffer-ing, and dying. It is the right to avoid being protectedfrom oneself. In this context, “assisted suicide” seems amisnomer, a contradiction in terms. Suicide is by naturea solitary act. The act of suicide by an ill person (success-ful or not) represents not only a rejection of care but anattempt to unilaterally sever the social contract.

Traditionally, hospice has operated from an alternativecovenantal and community-based approach. Not surpris-ingly, hospice is often positioned as a counterpoint tophysician-assisted suicide in ethics discussions and texts.A social covenant is based in trust and is durable; theconnection with community cannot be severed. Within acovenantal approach to illness, caregiving, dying, andgrief, people respond to others out of a lived sense of mu-tuality and because they are motivated by a desire to care.In acting covenantally, I make decisions affecting thewell-being of another, conscious that her well-being af-fects my own.

The hospice model of care seeks to integrate medicalexcellence within a community approach to end-of-lifeexperience and care. In addition to clinical professionals,the interdisciplinary team typically includes one or moreclergy serving as chaplains. Additionally, a variety oftrained and supervised community volunteers from

Ira Byock, “Rediscovering Community at the Core of the Human Condi-tion and Social Covenent,” Hastings Center Report Special Supplement 33,no. 2, (2003), pp. S40-S41.

B Y I R A B Y O C K

Rediscovering Community at the Core of the Human Condition and Social Covenant


many walks of life serve patients first and foremost bybeing present, spending time together and demonstrat-ing that the person who is ill matters to them. Some mayhelp with household chores, or assist with life review, oroffer other services, such as a massage or manicure sim-ply to brighten the ill person’s day. Volunteers also servethe clinical team, most visibly by contributing observa-tions and insights to the care planning process. More im-portantly, however, by their time, effort, and presence,volunteers remind busy hospice clinicians of the basic so-cial and community values that professions were createdto advance.

Our ability to respond to one another in communityis not confined to obligation and recognized problems.We also have “response-abilities” to enhance a person’squality of life and the life of the community: We canbear witness; we can promote opportunity.

Bearing witness. Metaphorically, we can say to theperson who may be dying, “We will bear witness to yourpain and your sorrows, your disappointments and yourtriumphs. We will listen to the stories of your life andwill remember the story of your passing.” Volunteerswithin hospice or from a variety of both faith-based andsecular community organizations amplify and extendclinical capacities in this realm.

Promoting opportunity. The old saw, “People die asthey have lived,” is only half true. Some people change inways that are valuable and important to them and theirfamilies during the time they are dying. Empiric evi-dence amply supports the concept of human develop-ment at the end of life.4 In the developmental work of re-viewing their lives, sharing bad news, reconciling (whenneeded) and completing relationships with others, andexploring existential and spiritual aspects of life, somepeople value assistance. Contributing to others andachieving a satisfactory sense of completion and life clo-sure are important to patients and families facing life-limiting illness. Beyond the basics of caring, within a re-sponsive community and social covenant, we can en-courage others to tell their story as a contribution to thecommunity’s collective history.

Extending help with these inherently difficult andnearly universal personal issues fits within a social

covenant that exists before one’s birth and extendsthrough one’s death. People need not accept this help;they need only know it is being freely offered. So, too,within this covenantal framework of community, I be-lieve that even as we die we retain rudimentary responsi-bilities to our caregivers, families, and communities. Weare obligated to make our needs known and to acceptcare that meets our needs without violating our values.To the extent we are able, we have a responsibility tocomplete our affairs and significant relationships. Wehave, if not a responsibility, at least a socially constructiveopportunity to tell our stories.

Assertions of basic elements of care and social respon-sibilities might seem naïve and sentimental in the con-temporary world of health care and public policy, espe-cially in the prevailing climate of soaring health care costsand hard budget choices. However, as revealed by the Ac-cess to Hospice Care: Expanding Boundaries, Overcom-ming Barriers project, they are fundamental to the verymoral structure, not only of health care, but also of soci-ety as a whole. One of the responsibilities of each profes-sion is to provide leadership to the social corpus on mat-ters within the profession’s purview. It is essential that theprofessions especially, in collaboration with the largercommunity, balance respect for people’s rights and liber-ties, with a robust sense of responsibility—and response-ability. Hospice epitomizes that response.

1. H.Y. Vanderpool, “The Ethics of Terminal Care,” JAMA 238(1978), 850-52.

2. D.W. Brock and N. Daniels, “Ethical Foundations of theClinton Administration’s Proposed Health Care System,” JAMA271 (1994), 1189-96.

3. J.J. Fins, “Commentary: From Contract to Covenant in Ad-vance Care Planning,” Journal of Law, Medicine, and Ethics 27, no.1 (1999), 46-51.

4. B.M. Mount and J. Scott, “Wither Hospice Evaluation,”Journal of Chronic Disease 36, no. 11 (1983), 731-36; M. Kearney,“Palliative Medicine: Just Another Specialty?” Palliative Medicine 6(1992), 39-46; I.R. Byock and M.P. Merriman, “Measuring Qual-ity of Life for Patients with Terminal Illness: The Missoula-VITASQuality of Life Index,” Palliative Medicine 12, no. 4 (1998), 231-44; I.R. Byock, “The Nature of Suffering and the Nature of Op-portunity at the End of Life,” Clinical Geriatric Medicine 12, no. 2(1996), 237-52.

ing and acceptance, regardless of classor circumstances. The African Ameri-can clergy are important sources ofstrength for sick and hospitalized pa-tients and their families. Belief in im-mortality is an essential part of theoutlook of many African Americans.For them, death is not their finalstate. These beliefs may conflict with

the concept of “end of life care,”which has been defined as the domainof hospice, and regardless of qualifierssuch as “compassionate” and “quali-ty,” much language about hospice re-flects the notion that death is final. Indiscussing death with African Ameri-can patients and families, hospiceproviders therefore inadvertently may

identify themselves with a viewpointthat is antithetical to the beliefs ofAfrican Americans.

Still other religious beliefs or prac-tices about the end of life are com-mon among other racial and ethnicgroups. For many Hispanics, death isdetermined by God’s will, and suffer-ing is an integral part of the process.


Family members and friends offerprayers at the bedside, at a home altar,and in church. Candles may be keptburning twenty-four hours a day asmeans of continuous worship. Clergyand lay visitors are common in thehospital and at home. Most Asians re-gard death as part of the normal lifecycle, and within the family system,the ideal response is one of serenity,even to the point of denial. A sense of“closed awareness” has been de-scribed, in which the medical staffand patient are aware of impendingdeath but avoid discussing it.58 Valuesand beliefs vary greatly among the ap-proximately 350 Native Americantribes or nations in the United States.While most believe in an afterlife,some, like the Navajo, do not.59

The role of the individual. Manypeople of color do not share the valueof individualism that is central inmainstream American culture. Theindividual therefore may not be con-sidered autonomous and separatefrom the family, and the family maybe regarded as more important thanthe individual. Cultural definitions offamily also may differ from the tradi-tional American concept of the nu-clear family; they may encompass alarge extended network.

African American culture places astrong value on the collective, values“community” as a good in itself, andbelieves in honoring members of theirimmediate community, especially thefamily. The family bonds that domi-nate the African American cultureoften are used as a protective measureagainst outside forces.60 Caring forthe sick and dying at home is a long-standing tradition among AfricanAmericans. Relatives come fromother locales to help. Friends, neigh-bors, and the religious communityalso participate in providing care andsupport to dying patients and fami-lies. Terms such as home care, hos-pice, respite care, and volunteerismare never used to describe these ser-vices. African American families feel astrong sense of obligation to gather atthe time of death.

Among Hispanics, the concept ofpersonalismo connotes “a deep sense ofbeing part of a network that compris-es one’s family as well as a sense offamily as an extension of the per-son.”61 The valuing of family consid-erations over individual or communi-ty needs is nearly universal.62 Rela-tives of Hispanics also participate inthe physical and spiritual care of thedying, and many travel considerabledistances to do this. Hispanic familymembers are nearly always willing toprovide personal care, but they maybe unwilling to provide technical careunless extensive teaching is provided.In some Hispanic families, pregnantwomen do not provide personal careor attend the funeral. Children some-times are shielded from involvementin care of the dying, but they alsomay have great responsibility.

In many Asian cultures, the con-cept of self also tends to be familial.Boundaries between self and othersare less rigidly drawn than in Westerncultures; an individual’s life is inter-connected with others, and there is adistinct sense of mutual obligation.63

These values profoundly influencecare of the dying and related patientand family roles. The Asian family,too, is intimately involved in care ofthe dying, and family members areoften present in medical settings toserve as interpreters if necessary andalso to shelter the patient from a badprognosis or diagnosis and the bur-den of decisionmaking.

The role of the family. Family tra-ditions and values exert a strong influ-ence on decisionmaking about care ofthe dying patient. African Americanfamilies gather, make their viewsknown, and discuss their opinionsabout what should be done until acomfortable consensus is reached.When the patient’s condition doesnot provide sufficient time for suchdiscussion, those who must make de-cisions without consulting other fam-ily members bear the emotional bur-den of offending them.64 Health careproviders who do not understand orappreciate this tradition may appearto be pressuring decisions.

Many Mexican-Americans andother Hispanics also adhere to a fam-ily-centered model of medical deci-sionmaking. One survey found that45 percent of elderly Mexican Ameri-cans believed that the family, not thepatient, should be the primary deci-sionmaker in terminal care. MexicanAmerican men are often expected toprovide for and be in charge of theirfamilies.

The high value placed on the fam-ily by many racial and ethnic groupsis attached to expectations about fam-ily and community roles in the care ofthe dying. Perceptions about the ex-tent to which hospice permits mem-bers of the family and community tofulfill their traditional roles is likely toinfluence acceptance of referrals tohospice.

Informing the patient. Althoughinforming dying patients about theircondition is a dominant value in U.S.medicine and mainstream Americanculture, people from a number of eth-nic groups believe that patientsshould be protected from this infor-mation. A 1995 survey of 800 elderlyLos Angeles residents from four eth-nic groups found that while nearly 90percent of Blacks and Whites saidthat they would prefer a straight prog-nosis, 45 percent of Korean Ameri-cans and 65 percent of MexicanAmericans said that they would notwant to be told if they had a fatal ill-ness. Belief that patients should betold the truth about their diagnosiswas correlated with degree of accul-turation.65 In discussions with diverseethnic groups, the Sacramento HealthDecisions Project similarly found thatfirst-generation immigrants regardedtalking about advance planning astaboo because this would be a badomen, but that second- and third-generation residents were much moreopen about the topic.

To engage a Chinese patient in adiscussion of prognosis or code statusmay be perceived as casting a deathcurse, making the person despair andpossibly die sooner.66 When a pa-tient’s illness is life-threatening, it isassumed that practitioners will talk


with the family rather than with thepatient, who is to be protected. Theinsistence of American physicians ontruth-telling is perceived as dangerousand rude. Continued efforts to con-sult the patient and family abouttreatment choices and the continu-ance of life support may be perceivedas a lack of commitment to the pa-tient. Similar attitudes have been re-ported among Armenians and Kore-an Americans, among whom physicalsymptoms have been induced when apoor prognosis is given. Some hos-pice workers serving culturally diversepopulations thus have learned to fi-nesse informed consent and to trustrelatives to communicate to the pa-tient what hospice means. Even whentalking with families, some hospiceworkers “never say the C-word (can-cer), the D-word (death) or even theH-word (hospice).”67

Cultural differences in the percep-tion and expression of pain and othersymptoms may compromise the abil-ity of hospice providers to assess thedistress of dying patients. Beliefsabout suffering also may lead to con-flicts about the appropriateness ofpalliative treatments. Many AfricanAmericans believe that suffering is tobe endured as part of a spiritual com-mitment and as a test of faith. Thesebeliefs may be rooted in religiousviews. In addition, however, the ap-

proach of death evokes an ethic ofstruggle that is central to AfricanAmerican identity. Mexican Ameri-cans usually place a very high valueon stoicism about pain and othersymptoms regardless of whether thesource is a physical problem or inter-personal issues.68

When dying patients and theirfamily members feel that health careproviders do not respect their prefer-ences for end of life care and do notunderstand the values, beliefs, andtraditions that underlie them, com-munications may break down andconflicts develop. In particular, com-munication and negotiation aboutlimiting or discontinuing therapies—a condition for enrollment in theMHB—may become more difficult,increasing the likelihood of overtconflict and serious moral disputes.

How one communicates is as im-portant as what is said. AddressingAfrican Americans formally ratherthan by their first name is importantin signifying respect. Verbal and non-verbal communications among Mexi-can Americans and other Hispanicsalso are usually characterized by re-spect and an element of formality, es-pecially early in relationships andwhen older people are involved.Physical touch by strangers and casu-al use of first names may be viewed asoverly familiar.69 However, personal

empathy (personalismo) and warmth(simpatía) are appreciated, and close-ness and physical touch are appropri-ate as the relationship develops. TheAsian communication style favors anindirect approach that is sensitive tofamily structure. Native Americansfrequently value silence and may notbe very outspoken about their needs.Direct eye contact is considered disre-spectful.

Because language embodies cul-ture, simple translations do not assureeffective communication betweenhealth care providers and patients orfamily members who do not speakEnglish. Family and friends thereforeshould not be used to provide inter-pretation services unless requested bythe patient.70 Also, using children astranslators in health interactionsshould be avoided as much as possi-ble; the role places too much respon-sibility on them.

Lack of cultural sensitivity in let-ters, brochures, fact sheets, and otherwritten materials also may be a barri-er to hospice access. Information, in-cluding pictures and presentation,may be geared for whites.71 Readinglevel also may be inappropriate, forliteracy in English, as well as otherlanguages, varies among people ofcolor and especially those of low so-cioeconomic status.


V. Toward New Models for Hospice

Values serve as compass set-tings for public policy and so-cial change. We have argued

that the status quo in the realized ac-cess and utilization of hospice care isnot ethically acceptable. Justice andequity call for reform and change.Moreover, there is the compelling na-ture of the vulnerability and needthat dying itself brings about, regard-less of personal or idiosyncratic dif-ferences in response. Mortality andchronic, eventually terminal illnessare the great equalizers; they do notrespect differences of wealth, power,education, cultural background, orethnicity. If dying includes everyonewithin its ambit, our society’s caregiv-ing response to dying should be noless inclusive. If dying tests the digni-ty and sense of meaning of all whoexperience it, then our caregiving sys-tems should be designed to assist andsupport the dignity and meaningfulcontinuation of a life through thedying process. This system is hospice,and it should also be accessible toeveryone.

There is a consensus on the needfor fundamental change in Americanend of life care. The main stakehold-er groups in this arena—consumers,providers, the hospice community,

public and private policymakers andcommunity leaders, and the bioethicscommunity—largely agree on what iswrong with the present system: thereis too much emphasis on expensive,burdensome, and futile life-prolong-ing care and too little emphasis onpalliative care that relieves sufferingand sustains quality of living. There isalso widespread agreement that hos-pice care must be made equitablyavailable to a broader population ofpatients near death. Hospice is valu-able as a component of end of lifecare planning and case management,and also as a component of palliativecare in ealier stages of chronic illness.Where there remains less agreementis on precisely what services should beoffered, and at what stage in thecourse of the disease.

A commitment to just access tohospice care is not sufficient if it ismerely an ideal to be sought in thedistant future, once other needs aremet and health care costs are undercontrol. A commitment to what jus-tice requires in caring for the needs ofthe dying must be translated into tan-gible institutional structures and pol-icy mandates. It must come to informthose things that motivate behaviorin the health care system, from social

marketing to professional education;from the provision of funding for ser-vices to the cultivation of a profes-sional calling. Making it tangible re-quires a new vision of hospice, onethat holds firm to many of the tradi-tions and values of the hospice move-ment but finds new and more flexibleorganizational forms through whichto express those values.

Value-Based Hospice

The vision of best hospice practicethat we offer is based on three

characteristics of hospice: (1) Hospiceprovides expert assistance with themanagement of the “condition” ofthe dying person and her family. (2)Hospice is flexible and dynamic indeveloping new expertise and servicesto meet changing community needs.(3) In managing a patient’s condi-tion, hospice provides continuity ofcaregiving and care planning, across abroad continuum of settings and ser-vices, as the person moves along a tra-jectory of chronic, debilitating, andlife-limiting illness. These characteris-tics reflect goals that hospice hassought to adhere to; they also provideelements for structuring the new vi-sion of hospice.

Condition management. Hospicehas been successful because it hastherapeutically responded to the con-sequences of the patient’s illness, hertotal condition, or situation, not justher disease. Hospice is often referredto as a “holistic” form of care, and isoften said to follow a “bio-psycho-so-cial model” of treatment in contrastto mainstream allopathic medicine,in which the focus is on the biomed-ical aspects of a pathological process,without much regard for the psycho-logical and social aspects of the pa-tient’s lived experience of the diseaseor the implications of the disease statefor family members or others (Table1). The notion of “managing” a totalhuman situation or condition implies

Pathologies: Consequences:Medically defined disease The experience of illness

Lung cancer “I can’t catch my breath.”Congestive heart failure “I’m losing weight.”Severed spinal cord “What if the treatments don’t work?”Emphysema “What will this mean to my family?”Dementia “My wife can’t turn me.”

“How can we compensate for a lostfunction?”

“How will this change my life?”“What do I need to resolve?”

Table 1.Aspects of a patient’s and family’s condition


The fragmentation and discontinuity of care in thepresent system should become major concerns inpalliative care. People facing serious illness and

their families express concern about such inadequacies ofcare because they fear these problems reflect a broken re-lationship with their care providers.1 Breaks in continuityappear as losses of information or momentum regardingcare of one’s bios, or physicality, as well as interruptionsin the understanding of a patient’s and family’s hu-manum, or context.2 Losses of information—as mighthappen when clinical data are lost or not transferredacross sites of care—may result in diagnostic shortcom-ings. It may result in a lack of clarity about which physi-cian, nurse, or other professional is in charge of the pa-tient who is seen by multiple people. The other kind ofbreak—an interruption in contextual understanding—undermines the patient’s and family’s emotional comfort,which is secured by a sense of trustworthiness amongprofessionals. The disjunctions in relationships amongthe patient’s family members and trusted providers,which occur as the location of care and the care teamchanges, may undermine the terminally ill patient’s qual-ity of remaining life at a time when many seek excep-tional authenticity in relationships.

In medicine generally, coordination and continuity ofcare are lauded; their absence is understood as a prob-lem.3 We agree, but suggest that this is to understate theissue. We characterize insufficient striving for continuityof care as a failure in ethical standards and claim that itsabsence in palliative care is of special significance.

In all major frameworks of medical ethics, continuityof care is readily justified. In the framework set out byBeauchamp and Childress, continuity is justified by atleast three of the four cardinal principles.4 Because conti-nuity provides for needed aspects of care, it is justified bythe principle of beneficence. Because it avoids needlesssuffering, it is justified by non-malfeasance. And becauseit tends to allow the patient to remain in better control ofhis or her illness care choices, it is justified by autonomy.

In more traditional codes of professional conduct,professionals receive injunctions to care, to cure, to betrustworthy, and to contribute to the well-being of soci-ety.5 Since discontinuity causes deficits in medical thera-py, much as many other lapses in standards of practice,continuity is part of the injunctions to care and to cure.6

The effects of discontinuity resemble the effects of aban-donment, thus continuity is part of the injunction to betrustworthy. Because continuity in palliative care con-tributes to desirable outcomes in the final phase of life, itbetter allows for the desired last stages of living relation-ship, and this lives with survivors in important ways, it isalso part of the injunction to contribute to the well-beingof society.

No matter which ethical framework is used, then, themoral obligation is clear. Further, because the dying arecharacterized as having special status due to their vulner-ability, and because there is little opportunity to redressadverse events the way one might correct a surgical com-plication, continuity in care of the dying has a special im-portance.

Lack of continuity of care is often the result of short-falls in management of patient care. Insofar as it may bean individual or medical systems feature, both are avoid-able; individual professionals’ responsibilities can be setup and systems can be designed to provide full continu-ity. That is, care roles, teamwork, and systems can be de-signed to achieve continuity. Lack of continuity in care istherefore an avoidable moral shortfall for professionalsand those who are responsible for the design and man-agement of the care system.

Continuity of Care in Hospice

As a philosophy of care that values the family contextand home care, hospice tries to provide care in

which institutionalization is minimized. Familiarity ofenvironment is particularly important to the mentally orphysically frail since social contexts are generally not eas-ily transportable. Yet as an illness progresses, patientssometimes must move from one care setting to another.Hospice patients sign up to obtain palliative care, regard-less of the care setting in which they reside. Part of hon-oring this obligation requires hospice to attend to theneeds of continuity when the site of care does change.

While most non-hospice health care providers, suchas hospital nurses, do not follow their terminally ill pa-tients to other care sites, hospice staff are charged by theMedicare Conditions of Participation, as well as by in-dustry and accreditation standards, with the specific andunique responsibilities to both provide and oversee pal-liative care as the patient moves across care sites withwhich they have contractual relationships. Continuity ofcare is optimized by this form of care management, notjust for their medical needs but for the growth opportu-

True Ryndes and Linda Emanuel, “Is Discontinuity in Palliative Care aCulpable Act of Omission?” Hastings Center Report Special Supplement 33,no. 2 (2003), pp. S45-S47.

B Y T R U E R Y N D E S A N D L I N D A E M A N U E L

Is Discontinuity in Palliative Care a Culpable Act of Omission?


nities that rise out of therapeutic support in life closuretasks.

When hospice care management is conducted in asensitive and intentionally therapeutic manner, humanissues emerge that define the context of care for the pa-tient/family unit. A patient’s needs, concerns, values, re-lationships, and fears create the context within whichhospice care management is provided. For example, clin-icians caring for those made vulnerable by illness mustaddress patients’ concerns for their loved ones, fears ofdying, fears of being a burden, needs for forgiveness,needs to forgive, and need for reconciliation. Similarly,they are likely to address the caregiver’s physical andemotional burden, their social isolation, unspoken wish-es, role reversals, and grief. These issues influence a pa-tient’s adherence to medical treatments but also andmore importantly affect his summation of what it hasmeant to be human. Effective coaching of dying patientsthrough their illness and death or bereavement dependson a shared vision of the full psychosocial and spiritualcontext, as the patients reflect on the meaning of theirrole in society, the value of their legacy, their life lessons.Care can be optimized by all providers when the coordi-nating interdisciplinary team, such as can be found inhospice, simultaneously addresses medical problems andcontextual issues. Although many studies remain to bedone, providers in the field feel that hospices’ adherenceto continuity of care standards has been helpful in facili-tating the passage of essential information regarding pa-tients’ preferences, values, relationships, clinical profiles,and goals of care to the various teams and team membersfrom whom a patient receives care.

Continuity in Palliative Care Beyond Hospice

People facing life-threatening illness should be able toreceive excellent palliative care whether in hospice or

in another care setting. Hospices need continuous self-as-sessment and improvement as well, but non-hospice sys-tems have faced the bulk of public dissatisfaction andshould take a hard look at the types of outcomes that arejeopardized by discontinuity in care. Using the “end re-sults outcome model” created by the National Hospiceand Palliative Care Organization (NHPCO), a few ex-amples can illustrate the ways in which discontinuitynegatively affects a patient’s quality of life closure.7

Safe dying. “Patients will die . . . in an environmentthat does not aggravate or hasten dying.” Practice gaps invarious care settings (home, nursing home, hospital) areclearly linked to threats to patient safety, particularlywhen it is not clear during times of emergency who ismedically in charge of unconscious patients, patientswithout caregivers, patients with multiple diagnoses, orpatients with dementia. Similarly, lost laboratory test re-sults may have clarified that (for example) a patient’s

growing confusion and subsequent fall at home resultedfrom an easily correctible situation such as digitalis toxi-city and was not an irreversible aspect of dying.

Comfortable dying. “Patients will die free of distress-ing symptoms.” It is not uncommon for there to be mis-perceptions about the meaning of a patient’s distress,based on incomplete messaging among team members.A devoutly religious cancer patient, wracked with guiltfor a past “sin,” may express his suffering as “pressure inmy head,” “living in pain,” and “heaviness in my chest.”The busy hospital nurse, unaware that the patient is re-ceiving assistance from his priest in wrestling with issuesof forgiveness, may inadvertently respond to his com-plaints with additional analgesia. Or, a distressed familymember’s perception that a loved one’s physical pain isnot adequately managed may persuade an on-call homehealth agency nurse to provide unwarranted analgesia toa patient who had achieved a personally acceptable bal-ance between levels of discomfort and consciousness.

Self-determined life closure. “Anticipating death,mentally competent patients have full autonomy tomake decisions about how the remainder of their life isspent within the allowances of law.” New care providers,failing to appreciate the complex developmental groundwhich the patient and family have covered in embracingthe patient’s actual health status, may too quickly con-front and erode their adaptive denial, leaving them emo-tionally denuded rather than supported. In other cir-cumstances, a patient’s unrelated significant other, whohas provided long-term care at home, may have no legit-imized standing in some institutional care settings, leav-ing the patient bereft of the most meaningful support inlife closure activities.

Effective grieving. “Grief is a natural, expected reac-tion to loss that is experienced psychologically, socially,behaviorally, and physically.” The characteristics of themourner, the nature and meaning of the specific loss,characteristics of the death, and social and physiologicfactors will all influence the grieving process. For familymembers, grieving is effective when it eventually sup-ports the individual’s ability to adjust to their environ-ment without the deceased and regain the ability to in-vest in other activities and relationships. Health care pro-fessionals are in a position to support the very differentgrief profiles and tasks of patients and families. Unawareof the hospice team’s counseling goals, nursing homestaff may fail to distinguish grief-related situational de-pression from a more profound clinical depression re-quiring medical intervention, thereby suppressing thepatient’s ability to effectively work through the grievingprocess by overmedicating her. Or, a family member’sdisplaced anger toward hospital staff may not be under-stood as an aspect of his grieving by “temp” nursesstaffing the hospital. Such anger warrants professionalevaluation but may instead result in fewer episodes of


a respect for the integrity and partici-pation of both patient and familymembers and betokens an activeprocess of controlling symptoms andhandling aspects of everyday life sothat they do not undermine thekinds of relationships, reminiscences,communication, feelings, and activi-ties that the patient finds meaningfuland that give remaining life its posi-tive quality.

The emotional and social mean-ing of “condition”—the conse-quences of disease on the lives of pa-tients and those around them—maybe at least as important to patients asthe physical impairment itself.72

However, while “Americans think itis important to plan for death anddying, they are uncomfortable withthe topic and resist taking action.”73

This underscores the importance of asocial marketing approach to publicengagement. While future policy ac-tion may eventually arise as a result of

the baby boom generation’s emergingcaregiving crisis, expanding hospicepolicy in the near term will require acompelling national prevention strat-egy directed toward the eliminationof avoidable distress among seriouslyill patients in all settings.

Historically, a keystone of hospicephilosophy has been the dictum that“the patient and family are the unit ofcare.” This view is supported by theMedicare Conditions of Participa-tion, JCAHO and CHAP accredita-tion standards, and the professionalstandards promoted by the NationalHospice and Palliative Care Organi-zation. Attention to the needs ofcaregiving family members has beenfound to improve consumer satisfac-tion levels and result in lower healthcare utilization among hospice care-givers. According to a survey by theNational Alliance of Caregivers andthe Association for the Advancementof Retired Persons, 73 percent of

family caregivers are women. Theydevote an average of four and one-half years to providing care, but oftenten years or more. Fifteen percent ofall caregivers and 31 percent of thoseproviding the highest level of care re-port that they subsequently sufferfrom significant physical illness oremotional stress.

Furthermore, in a large popula-tion-based cohort study of 819 care-giving and non-caregiving partici-pants, ranging from sixty-six to nine-ty-six years of age, it was found thatthose who reported mental or emo-tional strain associated with thechronic stress of caregiving had amortality risk 63 percent higher thannon-caregiving controls. Specifically,the at-risk group was found to havefewer preventive behaviors, decreasedimmunity, greater cardiovascular re-activity, and slower wound healing.74

Thus failure to address or controlthe distressing elements of a patients’

care to the patient.In an ideal world, we should feel confident that all

care providers share pertinent information in a coordi-nated system that serves the patient throughout thecourse of his or her illness. Toward that end, members ofthe Healthcare Providers Stakeholder group of the In-creasing Access to Hospice Care Project Task Force con-clude that a functional palliative care system must havethese characteristics:

1) Preservation of information: A patient’s full med-ical record moves from one care setting to the next.

2) Maximized continuity in the individuals who pro-vide care: Wherever possible, care providers move withthe patient. A case manager who works across institu-tional lines is of great value.

3) Minimized numbers of caregivers for minimizedcomplexity in coordination.

4) Preservation of context: The patient’s and family’sprimary contextual issues are communicated as patientschange care settings.

5) Communicated patient-centered vision and goalsof care: The goals of care need not remain the same, butshould evolve with the goals of patient and family.

6) Reimbursement mechanisms that support a seam-less transition between components of the system so thatfamilies do not have to learn new systems at times of cri-sis.

7) Uniformity in standards of palliative care acrosssettings.

We believe these intentionally crafted elements of conti-nuity have an unrecognized moral value because theyameliorate suffering and potentiate human growth. Con-versely, their absence contributes to needless suffering.

1. B. Tyler et al., “The Quest to Die with Dignity: An Analysisof Americans’ Values, Opinions and Attitudes concerning End ofLife Care,” Atlanta, Ga.: American Health Decisions, 1997; 12-14.

2. M. Lamm, “The Jewish Way in Dying: The Jewish Compo-nent in Hospice Care,” presentation at the 52nd General Assem-bly of the Council of Jewish Federations.

3. In the literature, “fragmentation” usually refers to the absenceof coordinated care delivery when specialists attend specific aspectsof a person’s condition. “Discontinuity” commonly refers to whathappens when significant information is lost as patients transferbetween sites of care. In the context of this article, however, we usethe terms interchangeably, for their effects and remedies are com-parable. Their presence indicates a failing on the part of profes-sionals and systems of care.

4. T.L. Beauchamp and J.F. Childress, Principles of BiomedicalEthics, third edition (New York, N.Y.: Oxford University Press;1989).

5. L. Emanuel, M. Iris, and J. Webster, “Ethical Aspects of Geri-atric Palliative Care,” in Geriatric Palliative Care, ed. S. Morrisonand D. Meier (Oxford University Press).

6. R.I. Cook, M. Render, D.D. Woods, “Gaps in the Continu-ity of Care and Patient Safety,” British Medical Journal 320 (2000),791-94.

7. National Hospice and Palliative Care Organization, A Path-way for Patients and Families Facing Terminal Illness (Alexandria,Va.: National Hospice and Palliative Care Organization, 1997).


care (such as unrelieved symptoms,emotional and spiritual anguish, con-flicting or vague communications)puts considerable strain on the care-givers. In fact, it has morbid conse-quences for them. As the nursing andnurse aide labor pool shrinks and thevolume of need for chronic and ter-minally ill services at home rises, allcaregivers—but notably aging femalecaregivers—confront a predictablybleak future. The cost of domesticcaregiving is largely invisible, whilethe “cost to business” or “cost to tax-payer” tend to be at the center of pol-icymakers’ attention. Many formercaregivers, mainly wives and mothers,with no family left to care for them,will themselves die in nursinghomes.75 This is a tragic social con-tract in return for the money theysaved society with their unpaid laborsof love.

Changing service in response tochanging community need. Throughits sources of financing and its organi-zational forms, hospice should beflexible enough to adapt and changein response to changing communityneeds. The historical development ofhospice, both as a concept and as aform of health care practice, demon-strates the dynamic and fluid charac-ter of a responsive and holistically ori-ented form of end of life care. (Table2 expands on hospice’s historical de-velopment.)

Amid the wide variety of programsand services that make up the hospiceworld today, there are signs of an ex-pansive movement toward earlier in-tervention in the disease trajectory,more continuity of care across agreater number of settings, and moreresponsiveness to community needsand functions beyond those associat-ed with end of life care for individualpatients and families. Some hospicesare not only clinical care deliveryagencies, but are also becoming pub-lic health agencies and institutions ofhealth education and health promo-tion. Our research indicates that ex-isting hospice programs are already sodiverse that they can be classified intothree basic types—Medicare hospices,

Table 2. A History of Responding to Changing Community Need

1973 First U.S. hospice founded in New Haven. Predominant model was inpatient care. Palliative approach narrowed to cloaking the symptoms, not eradicating their cause .

1981 Hospice Demonstration Project conducted. The project included twenty-one sites. The populations studied were largely white, middle-class people with cancer.

1983 Medicare Hospice Benefit (MHB) established. This created a major push to provide care at home.

1984-89 • Earlier conceptions regarding hospice/palliative care are challenged: Palliative care is redefined as appropriate care, not just cloaking of symptoms. Some innovative hospices begin to offer blood, perenteral fluids, chemotherapies, radiation therapies, and surgical procedures, as well as treatments of opportunistic diseases, pushing the Medicare Hospice Benefit boundaries and philosophies of some (smaller) hospices.

• Programs proliferate in urban areas and inner cities.• Hospice programs begin providing care to persons in Skilled Nursing Facilities.• Hospices respond to patients dying from non-cancer chronic diseases,

dementias, and general debility.• Response to people with AIDS begins in San Francisco and New York, and

then spreads across the country.• Pediatric hospice care is offered.• Hospices support compassionate detachment from respirators.• Hospices serve patients wishing to terminate dialysis.

1990s • Hospices extend care to:• children born dying and their families • dying prisoners• faith-based populations (Muslim, Jewish, Fundamentalist Christian)

• Hospice models emerge that provide consultative care for patients who arenot medically or emotionally ready for the MHB.• Many hospices reach out to bereaved community members not previously

served by hospice, such as those affected by terrorism, natural disasters, suicide, and accidental death:

• children and teens experiencing loss of parents and siblings • parents losing children • survivors of HIV/AIDS-related losses• individuals experiencing loss from catastrophic circumstances such

as sudden traumatic death • survivors of suicide in the family, school, or close community • communities experiencing catastrophic events such as airplane

crashes, mass shootings

2000s • Both outside and within the hospice community there is increased emphasison construction of an evidence base to promote quality improvement and best practices in palliative care.

• Medical visits at home by palliative care physicians and nurse practitioners.• Hospices develop senior care management services.• Hospice/PACE relationships develop. Hospices partner with PACE program and

consider designation as sites of “all-inclusive care of frail elderly” under Medicare/Medicaid PMPM payment structure.

• Hospices undertake collaborative palliative care partnerships with hospitals, consult services and units, joint education


community hospices, and compre-hensive hospice centers.

Medicare Hospices primarily servepatients eligible for the MedicareHospice Benefit and receive a veryhigh proportion of their income fromMedicare. Most of these programs aresmall, and many of them are inde-pendent. They have limited ability totolerate financial risk or to innovatein their services outside the standardMedicare Conditions of Participa-tion. This type of hospice is believedto still be the single largest group ofhospices in the nation today.

Community hospices also rely onMedicare reimbursement but go be-yond the Medicare population tooffer services to patients who are notmedically or emotionally ready fortraditional hospice care, as well as tothe community at large. These ser-vices are based on the core competen-cy of condition management.

Comprehensive hospice centersare community hospices with a dedi-cated academic mission. They arecommitted to improving carethrough professional education andresearch, and they are often of excep-tional size, community position, andphilanthropic fund-raising capacity.Some are attached to medical andnursing education programs andserve as teaching hospices. In additionto serving individual patients andcommunity organizations, they arealso active in the health policy arenaat the local, state, and even the na-tional level.

Continuity of care across a con-tinuum of services. Hospice is a formof care, not a physical location. Somehospices do have in-patient facilities,but those remain the exception ratherthan the rule. Hospice providers areperipatetic: they travel from setting tosetting and patients rarely come tothem. Consequently, hospice profes-sionals often find themselves in adual-provider role with home careagencies, nursing homes, and hospi-tals. This experience has taught hos-pice how to negotiate the fissures andcrevices of the American health caresystem. Even when hospice is called

in very shortly before the patient’sdeath, patients and families often es-tablish relationships with hospiceproviders and rely on them to orches-trate dealings with pharmacies, com-munity physicians, other health careproviders, sometimes clergy, and evenneighbors and friends. Historically,hospice has been both a managed careservice and a philosophy of care thatpatients access through a process ofinformed consent. In accreditationand certification standards, hospiceshave always been required to ensurethat the special philosophy of care isprovided across settings. Hospicemust build on its experience base andprovide enhanced continuity acrossinstitutional settings for patients andfamilies unfamiliar with the complex-ities of health system partners, as wellas those wrestling with complexclinical and personal decisions. Thevarieties of familial and institutionalcaregiving systems and the number ofaging and very aged individuals willcontribute to this need.

Serving as a broker or “case man-ager” is often as important to patientsand families as providing pain med-ication and other symptom controlmeasures. And for those who qualify,the Medicare Hospice Benefit is liter-ally the only program in the entireAmerican health care system that al-lows patients and families to forgetabout financial worries and to con-centrate instead on the hard work ofgrieving and living in the face ofdying. To complement this blessing,families need to be assured that theright type of services, medicine, andequipment will be available to the pa-tient as he or she moves through thetrajectory and changing needs of ill-ness. Hospice at its best is “conditionmanagement for continuity of careacross a continuum of services.” Theformulation is a mouthful, but everyterm is important in it. It is one of theprincipal contributions that hospice isin the best position to provide, struc-turally and historically, for end of lifecare.

The Promise of Hospice in anAging Society

These three components of bestpractice and high-quality end of

life care are both significant accom-plishments of hospice’s past and nec-essary steps toward its future. Hospicemust develop new organizationalforms if it is to provide these threecomponents to its patients and fami-lies and to the communities it serves.The development of such new formsof hospice financing and delivery willtax the creativity and managementskills of hospice leaders. It will also re-quire that policymakers leave behindtheir former emphasis on an individ-ual’s categorical eligibility (requiredsix-month prognosis or narrowlymedical symptomatic indices, such asthe current Local Medical ReviewPolicies) and focus instead on hos-pice’s ability to assume the responsi-bility and liability for the care of a di-verse population. In particular, hos-pices should be encouraged to imple-ment their continuity of care exper-tise within a continuum of palliativeservices, facilitating case managementand care planning based on the ap-propriateness of services given thechanges in the patient’s and the fami-ly’s needs over time.

This point is graphically represent-ed by the stylized diagrams shown theaccompanying figures. One often-proposed reform would be to modifythe current Medical Hospice Benefit(illustrated in Figure 1) by expandingthe eligibility period from six monthsto one year. This would represent astep forward from the point of viewof just access, to be sure. But it wouldonly address the policy and regulatorybarriers associated with the six-monthlife expectancy rule. It would do littleto address the other structural and at-titudinal barriers we have identified.In order to address and to overcomethe barriers to hospice access in amore comprehensive way, hospicemust be reinvented and re-envisionedalong the lines shown in figures 2 and3. Figure 2 represents the transforma-tion of the traditional hospice as a

niche provider at the tail end of a dis-ease into a provider whose purviewranges across the trajectory of a life-limiting disease. Moreover, the modelof traditional hospice as a specializedservice and an independent agencywith a limited mission will graduallybe transformed into a more compre-hensive model of hospice care inwhich hospice becomes the coordi-nating center for a range of palliativeservices that can be accessed by pa-tients in various ways as the patient’sunderlying condition evolves from di-agnosis to death. Figure 3 emphasizesthat the hospice treats both the pa-tient and the patient’s family.

Many current and narrowly de-fined hospice policies and regulations,including otherwise laudable efforts

to prevent Medicare fraud, are out ofstep with what is most innovative andcreative in the hospice communitytoday. An audit of the services provid-ed by hospices within the NationalHospice Work Group found thatmany are already well beyond theconfines of the Medicare hospicetype. In addition to focusing on thecare of those facing a terminal illness,many of these hospices are active inthe delivery or development of phil-anthropically supported programs forindividuals who want symptom man-agement and adaptive counselingeven as they pursue active treatmentdirected toward prolongation of life.These hospices also serve those facingthe debilitating effects of aging or theconsequences of sudden and cata-

strophic death. In short, it is clearthat these programs have expandedthe expression of core interdiscipli-nary competencies to individualsother than those imminently dying.While the first expression of hospicecompetencies has been care of thedying; this is not the core hospicecompetency. The core hospice com-petency is the interdisciplinary re-sponse to the human consequences ofchronic disease, disability, and aging.

With this in mind, we shouldbegin to think of hospice as offeringsomething of value to many differentgroups of patients, or to a given pa-tient and family at many points alonga spectrum of symptoms and servicesand across stages of chronic illness. Toprovide the impetus for policy andpractice changes that will increase ac-cess to hospice care, we need first tore-envision hospice as a concept ofhealth care—a new way of thinkingabout the nature and goals of healthcare itself—rather than an end stageform of care.

Foreseeable demographic factorswill shape the delivery of all healthcare in the future. They highlight theimportance of condition-based hos-pice care delivery systems, for thehuman consequences of chronic, de-bilitating disease will increase as larg-er numbers of people live longer.Eighty million Americans are current-ly living with chronic disease. Thatnumber is expected to nearly doubleby the year 2030. Moreover, between2010 and 2030, the population overage 65 will rise more than 70 percent,while under current law the popula-tion paying payroll taxes will rise lessthan 4 percent. By 2020 the absolutesize of the RN workforce will be ap-proximately the same size it is today,nearly 20 percent below require-ments.76 Finally, by 2025, those withlow incomes and multiple chronichealth problems, particularly women,will be forced to spend nearly 72 per-cent of their income for health care.77

These facts and trends paint a dis-turbing picture of the future of end oflife care. The shortage of caregivingpersonnel will jeopardize the avail-

Presentation 6 mos DeathFamily bereavement

Disease-modifying therapyCurative and restorative intent Hospice care

Consequence-modifying careRegardless of disease modifying intent

Death Bereavement

Disease

Risk Life closure

Disease-modifying careCurative, restorative, palliative intent

Figure 1.The Medicare Hospice Benefit

Figure 2.Hospice as a Continuum of Care

Consequences of illness


ability of physical support and theavailability of medications. It may re-quire a return to widespread institu-tionalization near the end of life. Itmay lead to intergenerational con-flicts between the aging baby boomgeneration and younger cohorts.

Indeed, as we have studied and re-flected on the problem of increasingaccess to hospice care, we have cometo the conclusion that an adequateunderstanding and ethical perspectiverequire us to envision hospice as a po-tentially new paradigm of socialhealth care for an aging society. If wecan learn how to define, organize, fi-nance, and deliver hospice care prop-erly, then we may have found the keyto coping with the major problem ofcaring for staggering numbers of per-sons with chronic, degenerative dis-ease, who must make difficult adjust-ments and transitions in their lives asthey pass through various stages andphases of their disease, both in termsof its biological manifestations and interms of the cultural meaning and so-cial implications of the chronic dis-ease experience. The experience ofchronic disease segues into the experi-ence of dying with no bright lines, noradical symptomatic changes, and noscientific medical prognostications.The flow and rhythms, as well as the

goals and care plans, of hospice mustbe allowed to match the rhythms ofchronic illness as it becomes an in-creasingly widespread social condi-tion. Of all the existing structures andspecialties in health care today, it ishospice that has the best chance ofsuccessfully transforming itself intothis chronic care social medicine ofthe future.

The adjustment and transforma-tion will not be easy. In the future,hospice will need to address the con-ditions that these demographic trendswill generate. The future hospicemust be technically proficient in clin-ical practice and in telecommunica-tions. It must also use staff time effi-ciently, tailoring interdisciplinaryteams and palliative treatment regi-mens to the specific needs of patientsthroughout the continuum of care.Hospice volunteers will be needed ingreater numbers, and they must bewell trained and well treated. Offer-ing an opportunity for volunteerismis one way in which the hospice ben-efits the community as well as indi-vidual patients. Specialists in fieldssuch as real estate and housing, trans-portation, insurance, financial plan-ning, and elder law will have a (virtu-al) role to play on hospice teams andin consultation with hospice plan-

ning boards. New care provider rolesmust be encouraged to emerge, andnursing leadership must examinehow strong traditional gender identi-fication with the role inhibits the re-cruitment of men into the nursingworkforce.

The promise for a larger missionin the future, perhaps as much as theethically compelling nature of theend of life care needs that it can meetfor those without access today, is theprincipal reason for being urgentlyand deeply concerned about policyreforms in the finance and delivery ofhospice.

This vision goes far beyond theissue of equitably distributing a ser-vice to heretofore unserved or under-served individuals and groups. Atleast in the case of hospice care, jus-tice goes beyond the issue of distrib-uting something whose nature andcharacteristics are firmly establishedand well understood. With hospice,the nature of the service to be justlyaccessible or distributed is itself opento question and in flux. The myriadproblems of access that we face inhospice today are not only due tooverly restrictive rules of eligibility, fi-nancing, and delivery; they are a lega-cy of a more fundamental mistake,namely, conceptualizing hospice as a


Death Bereavement

Consequences of illness

DiseaseRisk

Life closure

Morbidity and mortalityRisk Disease

Death

Figure 3.

A Vision of Comprehensive Hospice Care

Patient

Caregiver

fixed entity whose mission was toprovide a specialized niche service toone population with one (vastly com-pelling) need—the care of personsdying of incurable cancer who, in ef-fect, had been abandoned by main-stream medicine. Almost immediate-ly, as far back as the mid-1980s, hos-pice began to chafe at that specializedbridle and harness. It is high time togive it a much freer rein.

This report began with the claimthat the care dying people receive inthe United States can and should beimproved. We end with the hope and

the belief that it will be, and soon.This will require a strong ethical con-viction about the injustice of denyingaccess to hospice and palliative care tothose who would benefit from it anda renewed sense of determination toset the system right. We have at-tempted to provide a foundation forthat ethical conviction, an unblink-ing assessment of the barriers and dif-ficulties that need to be overcome,and a number of suggestions thatcontain fresh ideas and will at least setus moving in the right direction, if

not provide complete solutions to theproblems we face.

We welcome further analysis anddebate concerning the ethical foun-dations of just access to hospice andpalliative care. We look forward toworking with leaders in end of lifecare to bring about policy reform andinstitutional change. And we hopethat our recommendations will betaken at least as a useful contributionto ongoing efforts at expanding hos-pice access and fairness in the healthcare system more generally.


The following recommenda-tions are the result of fiveHospice Access and Values

Project Task Force meetings (involv-ing segregated and mixed stakeholderdiscussions as well as solicited pa-pers), and responses to thirteen foun-dational queries on the Access andValues website from September 1999through August 2001. The recom-mendations identify a realistic butchallenging course for the future ofhospice in America. They will requirepatience, political leadership, broaddebate, a willingness to compromise,and an openness to new ideas. Theyalso require further research and in-creased understanding of why thehealth care system behaves as it doesand of how various new practicesmay affect the needs and well-beingof dying patients and their families.

Some recommendations havebeen shared in whole or in part withvarious stakeholders and constituen-cies: Congress, hospice providers, in-vested consumers, and other stake-holder representatives. Other recom-mendations, such as Hospice/PACEprogramming, have already resultedin preliminary discussions among Ac-cess and Values participants and na-tional association leaders, for theyoutline reasonable demonstrationprojects worthy of federal fundingsupport.

A. RecommendationsConcerning Policy andRegulatory Barriers to Access

Recommendation 1: Healthcareleaders, policymakers, and key stake-holder groups must come to consensuson the definition of palliative careand develop a framework for greateraccountability in palliative care de-livery in concert with financingmechanisms.

1) As was done by the KelloggFoundation with the emerging hos-pice movement in the early ‘80s, werecommend that a national field sur-

vey of services calling themselves“palliative care” be conducted. Thesurvey will:

! determine what elements theseservices have in common and howthey qualitatively differ;

! use the exhaustive NHPCOStandards of Hospice Care/RobertWood Johnson Foundation Pre-cepts of Palliative Care Crosswalkas a foundation for the survey;

! document the scope of palliativecare services in U.S. hospitals inorder to assess the integration ofthis service within the practice ac-tivity of the hospital and deter-mine the relationship, if any, ofpalliative care consultation to hos-pice admissions; and

! identify specific savings realizedfrom improved end of life carepractices, such as patient costavoidances and lower health careutilization by family caregiverswho are relieved of the intensity oftheir caregiving burden.

2) We recommend that a nationalforum be convened to bring togetherkey constituencies, includingprovider and consumer groups, to es-tablish a definition for palliative careto provide the framework for servicedelivery models, standards of care de-livery, and reimbursement models.

3) We recommend that a positionpaper be developed in conjunctionwith the national study and forumthat will elucidate current and pro-posed distinctions between palliativemedicine, palliative care, and the careavailable through hospices of varioustypes.

4) We recommend that this posi-tion paper and a record of the delib-erations and conclusions of the studyand forum be presented to membersof Congress, executive branch offi-cials, and other policymakers at thefederal and state level. These materi-

als should inform the discussions andrecommendations proposed forMedicare beneficiaries in acute hospi-tals, rehabilitation programs, andlong-term care centers as well as am-bulatory, home care, and hospice pro-grams.

Recommendation 2: Public policyshould expand the scope of hospiceservices.

We recommend that Congress ap-prove a series of demonstration pro-jects to Advance Hospice Access(AHA). The goals of the AHA Pro-jects would be twofold. One goalwould be to advance hospice accessfor persons who do not yet qualify fortraditional hospice due to extendedor uncertain prognosis and/or theirpreference for therapies directed to-ward cure or prolongation of life.Second, the projects would foster andpromote access to hospice’s conditionmanagement competencies throughinnovative community relationships,as with PACE or Parish Nursing.

The AHA projects would identifyways to make hospice’s palliative ser-vices available to those receiving insti-tutional and outpatient care prior tothe conventional hospice accesspoint. Patient preference, caregiverneed, and functional status, not justdiagnostic criteria, would be consid-ered in determining eligibility. Thedemonstrations would study the timeand tasks of the palliative care en-counter to define and adjust the rela-tive value unit for this component ofcare, then define and measure thepalliative care component of the careprovided to patients in hospitals,nursing homes, home health agen-cies, and outpatient settings. Deter-mination of the efficacy of early in-terventions on the reduction ofhealth, economic, and social burdensof caregivers would also be a keyfunction of the demonstrations, asthey are likely significant.

Hospices eligible for these projectswould have to demonstrate the use of


VI. Approaching Just Access: Recommendations

innovative community service con-nectors, such as continuity of carevolunteers, by multiple organizationsincluding hospices, resulting in en-hanced access to palliative care andimproved continuity of care acrosscare settings.

The expected outcomes of thesetwo types of demonstration projectswould be:

! to determine the effects of pal-liative care on patient’s responsesto curative treatments;

! to improve pain and symptommanagement;

! to respond to the consequencesof the patient’s serious illness byaddressing family dynamics of pa-tients with new “bad diagnoses,”frequent admissions, or failingtreatments;

! to decrease procedures notaligned with the patient’s goals;and

! to create a model of compas-sionate “third act” care for patientswith dementia and their families.

Included in these demonstrationsshould be a mixture of programs withthe capacity to operationalize deliveryof services via telemedicine applica-tions. (See Telemedicine recommen-dation 6 below.)

Recommendation 3: Policymak-ers should act immediately to bringabout policy reform regarding the ab-solute application of an individual’sprognosis as a primary criterion forreimbursement of services.

CMS officials have recently notedslight increases in the average lengthof stay in hospice in 2000 and 2001.These increases coincide with a letterfrom former HCFA administratorNancy-Ann Min De Parle clarifyingthat hospices and beneficiaries shouldnot be penalized “if a patient liveslonger than six months.” This hasbeen followed by even more explicitcommunications to hospices and

physicians by CMS AdministratorThomas Scully recognizing “that ter-minal illnesses do not have entirelypredictable courses.” These are verypositive signs, yet we recommendCMS and its fiscal intermediariesprotect hospices, referring physiciansand patients from regulatory misin-terpretation in the future by estab-lishing a statistically accurate defini-tion of prognosis that recognizes itsrelevance as a population measure, notan individual one. This is consistentwith a wide literature addressing thefallibility of medical prognosticationon individual patients. For any popu-lation of patients with serious life-threatening illness there is a probabil-ity of death with a mean, standarddeviations from the mean, median,and mode. A population-based statis-tic is also consistent with Congress’soriginal intent in developing a riskarrangement with a maximum cap.

Recommendation 4: Expand ac-cess and delivery of hospice to dyingpersons residing in long-term care fa-cilities.

1) We recommend that Congressmodify Medicare Part A andMedicare RUG reimbursement sys-tem to support hospice care of theresident without financial penalty tothe nursing home and theresident/family unit.

2) CMS and state departments ofhealth must adopt a common surveyprocess for hospice patients in nurs-ing homes so that patients’ self-deter-mination in allowing death to take itsnormal course is not subordinate toclinically and personally harmful reg-ulatory requirements, such as the en-forcement of feedings among dyingpatients.

3) CMS should require that anystate licensed facility may not prohib-it the delivery of hospice care as pro-vided under the Medicare or Medi-caid hospice programs. (A compara-tive analysis of hospice services to pa-tients in Skilled Nursing Facilities(SNFs) is currently being conductedby the National Hospice and Pallia-tive Care Organization. This mono-

graph will highlight the ways inwhich states variably provide access tohospice services.)

B. RecommendationsConcerning Service DeliveryBarriers to Access

Recommendation 5: Leaders inthe hospice community and in main-stream medicine must promote hos-pice-hospital partnerships in order tomeet the current and projected needsof the rapidly expanding volume ofchronically and terminally ill pa-tients.

Activities to promote this relation-ship have begun in earnest over thecourse of this project, led primarilyby the Center to Advance PalliativeCare and the National Hospice andPalliative Care Organization. Exam-ples of collaborative relationships, ifnot models, have been identified.These efforts should be continuedand supported.

1) The quality of end of life carefor the unprecedented volume of pa-tients in the next 30 years will be de-pendent on professionals operatingoutside of their traditional servicesilos. Consequently, we recommendthat leadership groups in hospice andpalliative care (such as NHPCO,CAPC, the Academy of Hospice andPalliative Medicine, the Hospice andPalliative Nurses Association, andPartnership for Caring) work withpalliative care physicians, hospiceleaders, and hospital administratorsto construct a regulatory reformagenda that would enable improvedoutcomes for hospitalized patients inneed of hospice and palliative care.

2) We recommend the develop-ment of ongoing studies of maturinghospital/hospice models in whichhospitals have successfully integratedcomprehensive palliative care pro-grams into their organizations longerthan five years. These models wouldbe surveyed to identify replicablevariables critical to the long-term suc-cess of these ventures. Included insuch studies would be a review of theeffectiveness of grant-supported hos-


pital palliative care initiatives. Theobjectives of this review would be toidentify and monitor initiatives to in-stitutionalize palliative care servicesonce grant support is discontinued,to identify the quality and financialarguments for continuation of ser-vices, and to publicize successful out-comes and assess failures to be avoid-ed.

3) A few years ago, an importantstudy undertaken by the Institute ofMedicine galvanized discussion andexpert opinion around the goal ofimproving palliative care services. Ac-cordingly, we recommend that theSurgeon General undertake a reporton the quality of dying in America,and that it confront the topic notonly as a challenge for medical cul-ture and science but in the broadestterms as an ethical, cultural, and soci-etal question of the first order, onethat requires a rethinking of assump-tions and established practicesthroughout the health care institu-tions where most people die. A newSurgeon General’s report would notonly command attention, as onlySurgeon General’s reports in the pasthave been able to do, it would pro-vide the proper venue for seeing thecare of the dying as a public healthissue, for little is known about the in-cidence of death and quality of dying,by diagnosis, in hospitals before orimmediately after discharge. We rec-ommend that a Surgeon General’s re-port on the quality of dying in Amer-ican hospitals would reasonably in-clude the results of a retrospective re-view of the medical records of pa-tients in a large stratified sampling ofcommunity and academic hospitalsettings. The objectives of this reviewwould be to determine at least thefollowing actionable items:

! the cause of deaths of all patientswho died, the correlation betweendischarge diagnosis and cause ofdeath on the death certificate, andthe types of patients who died inany part of the hospital whosecharts reflected need states imme-diately prior to death that would

have been responsive to palliativecare but did not receive it (for ex-ample, the patient’s symptomswere unmanaged);

! the frequency of symptoms en-countered and adequately man-aged, the level of continuity ofcare among providers and betweenproviders and family members,and levels at which key patientpreferences are met; and

! any hospital-based practice pat-terns, including discharge plan-ning, that may constitute barriersto hospice consultation and/or re-ferral within those systems.

A second part of this study wouldinclude a systematic review of a pop-ulation of patients who died shortlyafter discharge (with seven days, forexample) from community and acad-emic hospitals. This part would iden-tify at least the following:

! cause of death and term of ill-ness, including patients withnewly diagnosed catastrophic dis-ease;

! residential status of patient (pri-vate residence, SNF, ALF, and soon);

! caregiver status;

! the types of health service athome, when applicable;

! the existence of formal and in-formal community resources andsupport to patient and family preand post death; and

! the types of patients whose hos-pital medical charts were absent ofany communication regarding aguarded prognosis and/or the na-ture of the patient’s condition.

Finally, we need to know moreabout how to evaluate and assess thequality and outcomes of all forms ofend of life care. We recommend thata metric be developed, perhaps

through Healthy People 2010, for pa-tients in acute, skilled, hospice, andhome care settings. The metric wouldcontinuously determine the presenceand effectiveness of end of life prac-tices on patients facing sudden andanticipated deaths.

Recommendation 6: Developtelemedicine to expand access to pal-liative care.

The imminent collision betweenthe burgeoning senior populationand the decreasing numbers ofhealthcare providers will dramaticallyalter how care is provided to thechronically and terminally ill, yetthere seems to be no sense of urgencyamong federal and state officials re-garding this coming crisis. We there-fore recommend that CMS, HRSA,or some other appropriate govern-ment agency move quickly to fundmultisite telehospice demonstrationprojects, in which centrally locatedpalliative care specialists may interactat a moment’s notice both with fami-ly caregivers in private residences in astratified selection of geographic set-tings, to include, urban, suburban,inner city, rural and wilderness areas,and with staff in nonhospice inpa-tient settings such as hospitals, nurs-ing homes and assisted living facili-ties.

Recommendations concerningAttitudinal Barriers to Access

Recommendation 7: Engage theBusiness Community.

We recommend that the majornational hospice foundations, in con-cert with community hospices, assistthe business community in providingforums where opinion leaders fromall sectors can come together to dis-cuss and debate the critical healthcareissues that we face in the next twentyyears. Good care of dying Americansis clearly a workforce issue because itrelates to productivity of employeesas patients and as caregivers. Produc-tivity issues affected by chronic ter-minal illness are likely going to in-crease as the working population



ages. Both the U.S. Chamber ofCommerce and the Employer TaskForce of the Robert Wood Johnson-funded Last Acts Campaign havetaken important first steps in helpinghospices take credible steps forward.

It is critical to establish a consis-tent message to business leaders.While many hospices are not forprofit, they must convert their out-comes into economic terms. For ex-ample, hospice decreases total costsfor the employer by:

! decreasing lost productivity atwork by providing support in thetasks of caregiving, as well as a re-sponse to stress of conflicting pri-orities and unresolved grief;

! diminishing the cost of sec-ondary illness of the employeecaregiver that is the result of care-giver burden;

! serving as an alternative to lessappropriate long-term care andhome care; and

! providing consultation tomanagement on issues they willinevitably and repeatedly face re-lated to employee absenteeism aswell as coping with the tasks andstress of caregiving and grief.

In the face of an aging workforceand a shrinking labor market, thehealth and productivity of workers iscritical to business success. Regardlessof the level of their own financialcontribution, employers must findways to ensure that the physical andpsychological health needs of em-ployees are addressed if they are tostay on the job. While the businesscommunity is not directly responsiblefor managed care, medical treat-ments, or the rising cost of prescrip-tion drugs, it has the position and op-portunity to promote care for itsworkers that is sensitive, humane, co-ordinated, and cost-effective, whilereducing absenteeism and turnover.

Recommendation 8: Develop ed-ucational programs to “reintroduce”

hospice and palliative care to the pub-lic in light of their new capabilities,flexibility, and accessibility.

1) In line with the service innova-tions of the community and compre-hensive hospices, we recommend de-veloping population-wide education-al and outreach programs emphasiz-ing that hospice is no longer justabout death and dying. National hos-pice foundations whose goals arepublic engagement and public em-powerment over care at the end of lifeare encouraged to work with and ex-pand their campaigns and other edu-cational efforts, refraining from asso-ciating the word “hospice” with itsstructural attributes (such as the inter-disciplinary team) and its intimateand singular association with suffer-ing and imminent death in favor of amore positive message about the ben-efits of hospice programs: comfort,safety, choice, and support in re-sponding to the life consequences as-sociated with illness and disability,particularly during life’s “third act.”

2) Within the hospice communitynew educational programs (both pre-service and in-service) should be de-veloped to equip hospice providers tomeet the challenges of expanded ac-cess to hospice, both in terms of ex-panding hospice care “upstream” toinclude meeting the complex clinicaland psychosocial needs of patients atearlier stages of possibly fatal illnessand in terms of expanding hospiceoutward to incorporate more patientswith a variety of non-cancer diag-noses and personal living situations.

References

1. This sobering conclusion is reflected inthe findings of The Last Acts Coalition,Means to a Better End: A Report on Dying inAmerica Today (Washington, D.C.: Partner-ship for Caring, November 2002).

2 Older Woman’s League, Faces of Care-giving (Washington, D.C.: OWL, 2001), 6-8.

3. D. Yankelovich, Coming to PublicJudgment (Syracuse: Syracuse UniversityPress, 1991).

4. The Journal of the American MedicalAssociation devoted an entire issue to end oflife care on 15 November 2000. See JAMA

284 (2000). Other important studies in-clude Last Acts, Transforming Death inAmerica: A State of the Nation Report (Wash-ington, D.C.: Partnership for Caring, June2001); Robert Wood Johnson Foundation,Promoting Excellence in End-of-Life Care(Missoula, Mont.: Practical Ethics Cen-ter/University of Montana, nd.) H.L. Swits,M. Furletti, and B. Vladeck, Palliative Care:An Opportunity for Medicare (New York: In-stitute for Medicine Practice, nd). C.K.Cassel and K.M. Foley, Principles for Care ofPatients at the End of Life: An Emerging Con-sensus among the Specialties of Medicine,(New York: Milbank Memorial Fund,1999). M.D. Mezey et al., Guidelines forEnd of Life Care in Nursing Facilities: Princi-ples and Recommendations (New York: JohnA. Harford Foundation Institute for Geri-atric Nursing, 2001). National Hospice Or-ganization, Nursing Home Task Force Report(NHO: Arlington, Va, 1998). EducationDevelopment Center, Meeting the Chal-lenge: Twelve Recommendations for ImprovingEnd-of-Life Care in Managed Care (Newton,Mass.: EDC, 1999).

5. S.R. Connor, “New Initiatives Trans-forming Hospice Care,” in The HospiceHeritage: Celebrating Our Future, ed. I.B.Corless and Z. Foster, (Binghamton, N.Y.:Haworth Press, 1999), 193-203.

6. President’s Commission for the Studyof Ethical Problems in Medicine, SecuringAccess to Health Care, Volume One: Report(U.S. Government Printing Office, Wash-ington, D.C., 1983), 4.

7. S. Stoddard, The Hospice Movement: ABetter Way of Caring for the Dying (NewYork: Vintage, 1992). See also M. Webb,The Good Death: The New American Searchto Reshape the End of Life (New York: Ban-tam, 1997).

8. World Health Organization, CancerPain Relief and Palliative Care, TechnicalReport 804 (Geneva: WHO, 1990).

9. L.A. Aday, R. Andersen, and G.V.Fleming, Health Care in the U.S.: Equitablefor Whom? (Beverly Hills, Calif.: Sage Publi-cations, Inc., 1980).

10. In hospice, one example is the re-quirement of the Medicare Hospice Benefitthat patients forgo (that is, waive their ordi-nary Medicare coverage for) medical treat-ments that attempt to cure their fatal dis-ease. Only palliative treatments for that dis-ease will be covered after entry into hospice.Hence, patients who want both life-pro-longing therapies and hospice care areforced to make a choice.

11. D. Callahan, “Death and the Re-search Imperative,” NEJM 342 (2000),654.

12. NHPCO Facts and Figures.www.nhpco.org, accessed November, 2002.

13. Centers for Disease Control,www.cdc.gov, accessed November 2002.

14. T. Ryndes et al., A Pathway for Pa-tients and Families Facing Terminal Illness(Alexandria, Va.: The National Hospice Or-ganization, 1997), 3. Gallup Organization,Knowledge and Attitudes Related to HospiceCare (Arlington, Va.: National Hospice Or-ganization, 1996). See also Health Com-munication Research Institute, TelephoneSurvey on End of Life Decision-Making(Sacramento: Sacramento Health Care De-cisions, 10 May 1996).

15. American Health Decisions, TheQuest to Die with Dignity (Appleton, Wis.:American Health Decisions, 1997). Thisstudy involved 385 participants in 36 focusgroups held in 32 cities across the country.See also Georgia Health Decisions, Geor-gians’ Views on Health care at the End of Life,(Atlanta: Georgia Health Decisions, 1997);and Vermont Ethics Network, VermontVoices on Care of the Dying (Montpelier:Vermont Ethics Network, 1997).

16. N. Daniels, Just Health Care (NewYork: Cambridge University Press, 1985).

17. President’s Commission for theStudy of Ethical Problems in Medicine, Se-curing Access to Health care, Volume One: Re-port (U.S. Government Printing Office,Washington, D.C., 1983). The argumentpresented here is based on the analysis inchapter 1 of this report.

18. See American Health Decisions, TheQuest to Die with Dignity.

19. N.A. Christakis and J.J. Escarce,“Survival of Medicare Patients after Enroll-ment in Hospice Programs,” NEJM 335(1996), 172-78.

20. E. Fox et al., “Evaluation of Prognos-tic Criteria for Determining Hospice Eligi-bility in Patients with Advanced Lung,Heart, or Liver Disease,” JAMA 282(1999): 1638-45. J. Lynn et al., “Definingthe “Terminally Ill:” Insights from SUP-PORT,” Duquesne Law Review 35 (1996),311-36. J. Lynn et al., “Prognoses of Seri-ously Ill Hospitalized Patients on the Daysbefore Death: Implications for Patient Careand Public Policy,” New Horizons 5 (1997),56-61. N.A. Christakis and E.B. Lamont,“Extent and Determination of Error inPhysicians/Prognoses in Terminally Ill Pa-tients: Prospective Cohort Study,” BritishMedical Journal 320 (2000), 469-73.

21. Task Force members who participat-ed in the construction of the Medicare Hos-pice Benefit in the 1980s report that the sixmonths prognosis was a somewhat arbitraryadd-on when a limitation to payment wassought, probably the first iteration of “whatis the hospice denominator?” There was noscientific theory supporting this, though itseemed to “fit” with the experience of on-cologists who noted the onset/escalation of

symptoms progressing toward death withinthis time period.

22. In 1995, CMS initiated OperationRestore Trust in which some hospices wereinvestigated for treating patients believed tobe non-terminal. A number of expert inter-viewees and policy analysts have attributedthe effects of this national investigation tothe shorter LOS. Government AccountingOffice data indicates that shorter hospiceuse began before 1995 and their study con-cludes that the drop in LOS is due not tothe chilling effect of these investigations,but is due to other factors. The 4 percentdrop of 2.5 days in the 1992-1995 periodis, however, not nearly as significant as theten-day (17 percent) drop on the nextthree-year period. While the 1992-95 dropmarks a change, the OIG impact periodwas between 1995-2000, during which a 22percent decline in ALOS was experienced.NHPCO, Facts and Figures, 8 November2001.

23. National Hospice Organization. Re-port of the Committee on the Medicare Hos-pice Benefit & End of life Care (Arlington,Va.: National Hospice Organization, n.d.),17.

24. T. Hoyer, “A History of the MedicareHospice Benefit,” in A Good Dying: ShapingHealth care for the Last Months of Life, J.K.Harrold and J. Lynn (eds) (Binghamton,N.Y.: Haworth Press, 1998), 61-69.

25. S.M. Underwod and G.A. Alexander,eds., “Participation of Minorities andWomen in Clinical Cancer Research,” An-nuals of Epidemiology 10, no. 8, Supplement(2000).

26. World Health Organization, CancerPain Relief and Palliative Care (Geneva:WHO, 1990).

27. C.F. Von Gunten et al., “Recom-mendations to Improve End-of-Life Carethrough Requlatory Change in U.S. HealthCare Financing,” Journal of Palliative Medi-cine 5 (2002), 35-41.

28. Letter from Thomas Scully, May2002. CMS Administrator Scully states:“We recognize that making these determi-nations is not an exact science and that theimpact of a hospice’s services may, initially,improve the patient’s condition. . . . TheMedicare program recognizes that terminalillnesses do not have entirely predictablecourses. In further recognition of the diffi-culty in making exact predictions, physi-cians certifying Medicare patients for hos-pice are expected only to use their best ‘clin-ical judgment regarding the normal courseof the individual’s illness’.”www.nhpco.org/public/articles/scully-2.pdf.

29. J. Berek et al., “What is the Evi-dence?” Care Management Journal 2, no. 1(2000), 44-53.

30. B. Gage and T. Dao, “Medicare’sHospice Benefit: Use and Expenditures1996 Cohort,” In Synthesis and Analysis ofMedicare’s Hospice Benefit (Washington,D.C.: U.S. Department of Health andHuman Services, Assistant Secretary forPlanning and Evaluation, Office of Disabil-ity, Aging and Long-Term Care Policy,2000).

31. See N.A. Christakis and J.J. Escarce,“Survival of Medicare Patients after Enroll-ment in Hospice Programs,” 1996. D.J.Luchins, P. Hanrahan, and K. Murphy,”Criteria for Enrolling Dementia Patientsin Hospice,” Journal of the American Geri-atrics Society 45 (1997), 1054-59. See Lynnet al., “Prognoses of Seriously Ill Hospital-ized Patients on the Days before Death.”

32. S.C. Miller, P. Gozalo, and V. Mor,“Outcomes and Utilization for Hospice andNon-Hospice Nursing Facility Decedents,”Office of Disability, Aging, and Long-TermCare Policy, HHS, March 2000. Accessedat: http://aspe.hhs.gov/daltcp/home.htm, 1March 2003.

33. S.C. Miller, P. Gozalo, and V. Mor,“Pain Assessment and Hospice Care inNursing Homes,” The Gerontologist 39(Speical Issue 1, 1999), 308-9.

34. E.L. Kralaier, “Community on Mis-trust, Racism, and End-of-Life Treatment,”Hastings Center Report 27, no. 3 (1997), 23-24.

35. B.C. Harper, “Hospice Care: A Vi-sion for the New Millennium,” Journal ofHospice Nursing 2, no. 1 (2000), 21-27.

36. D.P. McNeilly and K. Hillary, “TheHospice Decision: Psychosocial Facilitatorsand Barriers,” Omega 35 (1997), 193-217.

37. R.M. Wachter et al., “Decisionsabout Resuscitation: Inequities among Pa-tients with Different Diseases but SimilarPrognoses,” Annuals of Internal Medicine111 (1989), 525-32. M.Z. Solomon et al.,“Decisions near the End of Life: Profession-al Views on Life-Sustaining Treatments,”American Journal of Public Health 83(1993), 14-23.

38. J.V. Tu et al., “Use of Cardiac Proce-dures and Outcomes in Elderly Patientswith Myocardial Infarction in the UnitedStates and Canada,” NEJM 336 (1997),1500-505. K. McPherson, “InternationalDifferences in Medical Care Practices,”Health Care Final Review, annual supple-ment, (1989) 9-20.

39. M.F. Gates et al., “The Attitudes ofBeginning Nursing and Medical Studentstoward Care of Dying Patients,” HospiceJournal 8 (1992), 17-32. F.M. Hull,“Death, Dying and the Medical Student,”Medical Education 25 (1991), 491-96. K.Howells, M. Gould, and D. Field, “Fear ofDeath and Dying in Medical Students: Ef-


fect of Clinical Experience,” Medical Educa-tion 20 (1986), 502-506.

40. M.J. Field and C.K. Cassell, eds., Ap-proaching Death: Improving Care at the Endof Life (Washington D.C.: National Acade-my Press, 1997). N.S. Jecker, “Knowingwhen to Stop,” Hastings Center Report 21(1991), 5-8.

41. B.M. Reilly et al., “Promoting Com-pletion of Health Care Proxies followingHospitalization: A Randomized ControlledTrial in a Community Hospital,” Archives ofInternal Medicine 155 (1995), 2202-206.M. Terry and S. Zweig, “Prevalence of Ad-vanced Directives and Do-Not-ResuscitateOrders in Community Nursing Facilities,”Archives of Family Medicine 3 (1994), 141-45.

42. M.B. Zucker and H.D. Zucker,“Medical Futility and the Evaluation ofLife-Sustaining Interventions,” (New York:Cambridge University Press, 1997). D.Orentlicher, “The Illusion of PatientChoice in End-of-Life Decisions,” JAMA267 (1992), 2101-104. N.G. Smedira et al.,“Withholding and Withdrawal of Life Sup-port from the Critically Ill,” NEJM 322(1990), 309-15.

43. L.C. Hanson et al., “Who Decides?Physicians’ Willingness to Use Life-Sustain-ing Treatment,” Archives of Internal Medi-cine 156 (1996), 785-89.

44. J. Teno, “Looking beyond the“Form” to Complex Interventions Neededto Improve End of Life Care,” Journal ofAmerican Geriatric Society 46 (1998), 1170-71.

45. See N.A. Christakis and E.B. Lam-ont, “Extent and Determinants of Error inDoctors’ Prognoses in Terminally Ill Pa-tients: Prospective Cohort Study,” 2000.See Lynn et al., “Prognoses of Seriously IllHospitalized Patients on the Days beforeDeath.” W.J. Mackillop and C.F. Quirt,“Measuring the Accuracy of PrognosticJudgments in Oncology,” Journal of ClinicalEpidemiology 50 (1997) 21-29. On the un-willingness to make a judgment, see N.A.Christakis and T.J. Iwashyna, “Attitude andSelf-Reported Practice Regarding Prognosti-cation in a National Sample of Internists,”Archives of Internal Medicine 158 (1998),2389-95.

46. N.V. Dawson et al., “Physician-Pa-tient Discussion Does not Increase Agree-ment about Prognosis in Severely-Ill Pa-tients,” Journal of General Internal Medicine10, supplement 4 (1995), 41.

47. National Hospice Foundation, “Pub-lic Opinion Research: Baby Boomers FearTalking to Parents about Death,” 2001,www.hospiceinfo.org.

48. M.J. Silveira et al., “Patient Knowl-edge about Options at the End of Life: Ig-

norance in the Face of Death,” JAMA 284(2000), 2483-88.

49. See Christakis and Lamont, “Extentand Determinants of Error in Doctors’Prognoses in Terminally Ill Patients.

50. J.C. Hofmann et al., “Patient Prefer-ences for Communication with Physiciansabout End-of-Life Decisions,” Annual Inter-nal Medicine 127 (1997), 1-12. B.M. Reillyet al., “Can We Talk? Inpatient Discussionsabout Advance Directives in a CommunityHospital: Attending Physicians’ Attitudes,Their Inpatients’ Wishes and Reported Ex-perience,” Archives Internal Medicine 154(1994), 2299-308.

51. B.G. Glaser and A.L. Strauss, Aware-ness of Dying (Chicago: Aldine, 1965).

52. The National Hospice and PalliativeCare Organization. Facts and Figures onHospice Care in America. Available atwww.nhpco.org, Accessed 8 December2001.

53. C. Kemp, “Culture and the End-of-Life: Hispanic Culture (Mexican Ameri-can),” Journal of Hospice & Palliative Nurs-ing 3, no. 1 (2001), 29-33. L.J. Blackhall etal., “Ethnicity and Attitudes towards LifeSustaining Technology,” Social Science Med-icine 48, no. 12 (1999), 1779-89.

54. See Means to a Better End: A Reporton Dying in America Today.

55. L.L. Crawley, “Palliative Care inAfrican American Communities,” Innova-tions in End of Life Care 3, no. 5 (2001),www.edc.org/lastacts.

56. K.S. Collins, A. Hall, and C.Neuhaus, U.S. Minority Health: A Chart-book (New York: The CommonwealthFund, 1999).

57. R.K. Barrett and K.S. Heller, “Deathand Dying in the Black Experience: An In-terview with Ronald K. Barrett,” Innova-tions in End of Life Care 3, no. 5 (2001),www.edc.org/lastacts

58. B. Chang, “Asian-American PatientCare,” in Transcultural Health Care, G.Henderson and M. Primeaux (Menlo Park,Calif.: Addison Wesley, 1981), 255-78.

59. M. Brokenleg and D. Middleton,“Native Americans: Adapting, Yet Retain-ing,” in Ethnic Variations in Dying, Deathand Grief (Washington D.C.: Taylor &Francis, 1993), 101-12.

60. D.N. Thomas, “Black American Pa-tient Care,” in Transcultural Health Care, G.Henderson and M. Primeaux (Menlo Park,Calif.: Addison Wesley, 1991), 209-23. A.Dula, “The Life and Death of Miss Mil-dred, An Elderly Black Woman,” Clinicaland Geriatric Medicine 10 (1994), 419-30.F. Jackson et al., “Barriers to Hospice Carefor African-Americans: Problems and Solu-tions, “ Journal of Hospice and PalliativeNursing 2 (2000), 65-72.

61. S. Siefken, “The Hispanic Perspectiveon Death and Dying: A Combination ofRespect, Empathy, and Spirituality,” PrideInstitute of Longterm Home Health Visitor 23(1994), 26-28.

62. G. Juarez, B. Ferrell, and T. Boreman,“Influence of Culture on Cancer Pain Man-agement in Hispanic Patients,” Cancer Prac-tice 6 (1998), 262-69 as cited in C. Kemp,“Hispanic Cultures (Focus on MexicanAmericans),” Journal of Hospice Nursing 3,no. 1 (2001), 29-33.

63. T. Nilchaikovit, J.M. Hill, and J.C.Holland, “The Effects of Culture on IllnessBehavior and Medical Care. Asian andAmerican Differences,” General HospitalPsychiatry 15 (1993), 41-50.

64. See Barrett and Heller, “Death andDying in the Black Experience.”

65. See Blackhall et al., “Ethnicity andAttitudes towards Life Sustaining Technolo-gy,”

66. J.H. Muller and B. Desmond, “Ethi-cal Dilemmas in a Cross-Cultural Context:A Chinese Example,” Western Journal ofMedicine 157 (1992), 323-7.

67. B. Carey, “When a ‘Good Death’Isn’t for Everyone,” Los Angeles Times, 20August 2001.

68. C. Granda-Camerco, “The Experi-ence of Having Cancer in Latin America,”Cancer Nursing 22, no. 1 (1999), 51-57. SeeKemp, “Culture and the End-of-Life: His-panic Culture (Mexican-American)” 2001.

69. T. dePaula, K. Lagana, and L. Gonza-lez-Ramirez. “Mexican Americans,” in Cul-ture and Nursing Care, J.G. Lipson, S.L.Dibble, and P.A. Minarik (San Francisco:UCSF Nursing Press, 1996), 203-21.

70. U.S. Office of Minority Health, Clos-ing the Gap (Washington, D.C.: Office ofMinority Health, U.S. Department ofHealth and Human Services,February/March 2001), 3.

71. H. Ross, “End of Life Care IssuesNeed Culturally Sensitive Approaches,” inClosing the Gap (Washington, D.C.: Officeof Minority Health, U.S. Department ofHealth and Human Services,February/March 2001), 13-14.

72. C.G. Helman, Culture, Health andIllness, 2nd ed. (London: Butterworth,1990). See also A. Kleinman, L. Eisenberg,and B. Good, “Culture, Illness and Care:Clinical, Illness, and Care: Clinical Lessonsfrom Anthropologic and Cross-Cultural Re-search,” Annuals of Internal Medicine 88(1978), 251-8.

73. American Health Decisions, TheQuest to Die with Dignity, p. 7

74. R. Schulz and S.R. Beach, “Caregiv-ing as a Risk Factor for Mortality,” JAMA282 (1999), 2215-19.


75. S. Miller et al., “Synthesis and Analy-sis of Medicare’s Hospice Benefit, ExecutiveSummary and Recommendations,” (Wash-ington, D.C.: U.S. Dept. of Health andHuman Services, March 2000).

76. P.I. Buerhaus, D.D. Staiger and D.I.Auerbach, “Implications of an Aging Regis-tered Nurse Workforce,” JAMA 283(2000), 2948-54.

77. Urban Institute, “Medicare Cost In-creases Will Hurt the Most Vulnerable Dis-proportionately,” Washington, D.C.: TheUrban Institute, 2 January 2001.



The following individuals took part in various project meetings and as-sisted with the project: Pam Barrett (Hospice and Palliative Care ofGreensboro, N.C.); Samira Beckwith (Hope Hospice); Paul Brenner(Children’s Hospice International); Helen Burstin (AHRQ); Courtney S.Campbell (Oregon State University); John Carney (NHPCO); DavidCassarett (University of Pennsylvnia); David Clark (University ofSheffield, UK); Jan Cetti (San Diego Hospice); Chris Cody (NHPCO);Robert d'Antuono (Mt. Sinai Hospital, N.Y.); Deborah Dailey (Hospice ofDayton); Dorothy Deremo (Hospice of Michigan); Pam Doty (EAP);Susan Drongowski (Nathan Adelson Hospice); M. Garey Eakes (Part-nership for Caring); David English (Hospice of Northern Virginia); DaveFielding (Hospice of Palm Beach County); Richard Fife (VITAS);Thomas Hoyer (Centers for Medicare Services); Walter Hunter (Vis-tacare); David Kessler; Jonathan Keyserling (NHPCO); J. Thomas Kout-soumpas (VITAS); Vincent Lafronza (National Association of City andCounty Health Officials); Howard Lerner (HRSA); Mary Lerner (HospiceFoundation of Central New York); Joanne Lynn (RAND); Keith Meador(Duke University); Kathleen C. Milne (RAND); Marilyn Moon (Urban In-

stitute); Patti Moore (The Watershed Group); Mary McCarthy (Hospiceand Palliative Care of Cape Cod); Pat Murphy (Hospice of Martin and St.Lucie); Naomi Naiemnan (American Hospice Foundation); Hilde L. Nel-son ( Michigan State University); Sally Okun (Center for Life Care); JoeO’Neill (White House Office of National AIDS Policy); Gregory Pappas(Office of the Surgeon General); Jeannee Parker Martin (The CorridorGroup); Kate Payne (Clinical Ethics Center); Dottie Pitner (PalliativeCare Center and Hospice of the North Shore); Christina M. Puchalski(George Washington University); David Rehm (Vistacare); David Simp-son (Hospice of the Western Reserve); Bev Sloan (Hospice of MetroDenver); Brad Stuart (Sutter VNA and Hospice); Claire Tehan (TrinityCare Hospice); Joan Teno (Center for Gerontology and Health Care Re-search at Brown Medical School); Ann Morgan Vickery (Hogan andHartson, LLP); Charles von Gunten (San Diego Hospice); Myrl Wein-berg (National Health Council), Vicki Weisfeld (Robert Wood JohnsonFoundation); Christy Whitney (Hospice and Palliative Care of WesternColorado); Ann M. Wilkinson (RAND); Analee Wulfkuhle (Home andHospice Care of Rhode Island); and Matthew Wynia (AMA).

Mary Ann BailyThe Hastings CenterGarrison, N.Y.

Dan W. BrockNational Institutes of HealthBethesda, Md.

Gretchen M. BrownHospice of the BluegrassLexington, Ky.

Ira ByockPalliative Care ServicesMissoula, Mont.

Virginia CaseyThe Picker InstituteBoston, Mass.

Carolyn J. CassinBeth Israel Medical CenterNew York, N.Y.

Tammy ChoateBondware, Inc.Nashville, Tenn.

Marcia ComstockComstock Consulting GroupWayne, Pa.

Stephen ConnorNational Hospice & Palliative Care OrganizationAlexandria, Va.

Karen DavieNational Hospice & Palliative Care

OrganizationAlexandria, Va.(formerly President/CEO)

Carol D’OnofrioUniversity of CaliforniaBerkeley, Calif.

Linda L. EmanuelNorthwestern University Medical SchoolChicago, Ill.

Betty R. FerrellCity of Hope Medical CenterDuarte, Calif.

Frank D. FerrisSan Diego HospiceSan Diego, Calif.

Marilyn FieldInstitute of MedicineWashington, D.C.

Kathleen FoleyMemorial Sloan Kettering Cancer CenterNew York, N.Y.

Francis H. GeerSt. Phillips Church in the HighlandsGarrison, N.Y.

Marge GinsburgSacramento Healthcare DecisionsSacramento, Calif.

Sandra Harmon-WeissAetna-US HealthcareBlue Bell, Pa.

Bernice Catherine HarperThe Center for Medicare and Medicaid ServicesBaltimore, Md.

Bruce JenningsThe Hastings CenterGarrison, N.Y.

Sandra H. JohnsonSaint Louis UniversitySt. Louis, Mo.

Amber JonesHertzberg Palliative Care InstituteMt. Sinai School of MedicineNew York, N.Y.

Karen KaplanPartnership for CaringWashington, D.C.

Mary J. LabyakHospice of the Florida SuncoastLargo, Fl.

Bentley LipscombAARPSt. Petersburg, Fl.

Helen B. McNealMaria ConsultingChevy Chase, Md.

Diane MeierHertzberg Palliative Care InstituteMt. Sinai School of MedicineNew York, N.Y.

Alan MeiselUniversity of PittsburghPittsburgh, Pa.

Susan MillerBrown University Medical SchoolProvidence, R.I.

True RyndesNational Hospice Work GroupSan Diego, Calif.

Charles SabatinoAmerican Bar AssociationWashington, D.C.

J. Donald SchumacherNational Hospice and Palliative Care

OrganizationAlexandria, Va.(current President/CEO)

Mildred SolomonCenter for Applied EthicsEducation Development Center, Inc.Newton, Mass.

John M. StanleyLawrence UniversityAppleton, Wis.

Daniel P. SulmasySaint Vincent’s Hospital & Medical CenterNew York, N.Y.

Donato J. TramutoProtocare SciencesSanta Monica, Calif.

Laurie ZolothSan Francisco State UniversitySan Francisco, Calif.

Task Force Members Organizational affiliations for identification purposes only; affiliations current as of 2002.

T H E. . . . . . . . . . . . . . .

HASTINGS. . . . . . . . . . . . . . .

C E N T E RGARRISON, NEW YORK

10524-5555

On the cover:Knowing How, ©Diedre Scherer, 1994, 17”x20”, fabric and thread Photo: Jeff Baird

Aprofessional coalition of hospice pioneers, executives,consultants, and researchers, The National Hospice

Work Group (NHWG) is committed to increasing access tothe palliative competencies of hospice care. For more than25 years many of its members have made significant localand national contributions to the care of patients facing life-threatening illnesses, regardless of diagnosis. Through issuesanalysis, advocacy, best practice exchange, research and edu-cation, they continue advancing a valued philosophy of carefor people affected by the profound effects of aging, disabil-ity and disease.

The twenty-five NHWG members are located across theUnited States. Those members with hospice programs servefrom 100 to over 2500 patients per day in rural and urbancommunities, suburbs and inner cities. Blending traditionaland alternative (or complementary) therapies, their pro-grams have developed a valuable track record in respondingto the human and medical consequences of serious illness. Inaddition to developing expertise in pain and symptom man-agement, they have pioneered an approach to care thatresponds to patients’ and families’ emotional and spiritualneeds, whether the patient is at home, the hospital or nurs-ing home.

In addition to traditional hospice services, many NHWGorganizations offer palliative treatment services and provideconsultation and education through affiliations with localhospitals, colleges and universities. Members believe that thelessons learned in traditional hospice care will help themdeliver humane service earlier in the course of treatment, aspersons wrestle with complex personal and clinical decisionsassociated with eventually fatal disease.

The Hastings Center addresses fundamental ethical issuesin the areas of health, medicine, and the environment as

they affect individuals, communities, and societies. With asmall staff of senior researchers at the Center and drawingupon an internationally renowned group of over 100 elect-ed Fellows for their expertise, The Hastings Center pursuesinterdisciplinary research and education that includes boththeory and practice. Founded in 1969 by philosopherDaniel Callahan and psychoanalyst Willard Gaylin, TheHastings Center is the oldest independent, nonpartisan,interdisciplinary research institute of its kind in the world.From its earliest days The Hastings Center has understoodthat the moral problems arising from rapid advances inmedicine and biology are set within a broad intellectual andsocial context. The Center’s collaborations with policy-makers, in the private as well as the public sphere, assistthem in analyzing the ethical dimensions of their work.

ABOUT

THE NATIONAL HOSPICE WORK GROUP

ORDER INFORMATION

For copies of this or other Hastings Center ReportSpecial Supplements, write or call: Membership DepartmentThe Hastings Center21 Malcolm Gordon RoadGarrison, NY 10524-5555(845) 424-4040(845) 424-4545 fax; [email protected] www.thehastingscenter.org.

ABOUT

THE HASTINGS CENTER

Documents

Access to Hospice Care: Expanding Boundaries, Overcoming Barriers