Hands On/Hands Off: Why Health Care Professionals Depend on Families but Keep Them at Arm's Length

Hands On/Hands Off: Why Health Care Professionals Depend on Families but Keep Them at Arm’s Length

Carol Levine, Connie Zuckerman

Kelekian: (Giving pivian] a piece of paper) Here is the consent form. . . . Is there a family member you want me to explain this to? Vivian (Signing): That won’t be necessary. Kelekian: (Taking back the paper) Good. . . .

From “Wit” by Margaret Edson (1999)’

n the theater the fictional Dr. Kelekian’s relief that he does not have to talk to family members about his I patient’s cancer treatment draws uneasy laughter from

the audience. Doctors, patients, and family members alike recognize the situation, even if hearing it so baldly expressed discomfits them.

Why do physicians and other health care professionals, including lawyers and bioethicists, so often view families as “trouble”? And why do families so often see medical professionals as uncaring and uncommunicative? Presum- ably everyone wants the same goal-recovery or the best possible outcome for the patient. And yet trouble clearly exists. We do not see the problem as one of “dysfunctional families” or “callous doctors,” although there are undoubtedly many of each. Rather, we see the problem as deriving from fundamentally different views of the patient’s identity and from the special, sometimes conflicting roles that both professionals and family members play in the patient’s care. Increasingly, the structure and practices of the health care system is forcing these should-be partners into adversarial positions.

This article first presents commonly held, mostly negative views of the patient’s family members in medicine and bioethics. Potential sources of conflict are described in the following section. The article then outlines the reasons fami-

Journal oflaw, Medicine &Ethics, 28 (2000): 5-18. 0 2000 by the American Society of Law, Medicine & Ethics.

lies are essential to the modern health care delivery system. The next section suggests several roles that kin play, which may be seen as positive or negative, depending on the actor and the audience. Finally, there are several recommendations for partnerships in care and decision malung that respect the interests of patient and family, as well as the ethical obligations of clinicians. The main thesis of this article is that a system that requires ever greater direct and indirect participation from families must change the negative presumption that families equal trouble to one that acknowl- edges family interests in decision making and care delivery and treats families as partners in caregiving.

Negative views of the patient’s family in medicine and bioethics Before the rise of medical institutions the women in a family provided almost all care for their sick relatives at home, with the doctor a reassuring, but often powerless, presence. The rise of hospitals in the nineteenth century gave doctors authority and power, and diminished the family’s role. At the beginning of the twentieth century, when middle-class citizens believed that hospitals were suitable only for the dying poor, a New York hospital superintendent declared, “It can be put down as one of the advantages of a hospital that the relatives and friends do not take care of the patient. . . . It is much better for them [patients] not to be under the care of any one who is over-concerned for them.”2 At the end of the twentieth century, when hospitals are cutting short the stays of the diminishing numbers who gain admission, a physician complained to an interviewer, “Fami- lies are very emotional . . . they don’t understand what’s going 011.”~

Despite the vast changes that took place in medical care over the past century, these two quotations suggest a

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common theme. Whether family members are described as “over-concerned” or “very emotional,” the statements imply that patient care is better when professionals are in charge and that family members’ ties to a sick relative are impediments to good care or decision making. Negative views of families are common, even in nursing, the traditional bastion of family advocacy. A nurse writes: “When asked to name their most common problem in dealing with [patients from] non-Anglo ethnic groups, most nurses re- spond, ‘Their fa mi lie^.'''^ Another nursing team notes that nurses reply to a question about why they do not include family members in their practice with statements like: “If I talk to family members I won’t have time to complete my nursing responsibilities” or “It’s not my job to talk with families; that’s for social workers and psychologists.”*

There are deeply rooted reasons for conventional atti- tudes that overlook or denigrate the role of family members in patient care and decision making. In both medical practice and bioethics as developed in the United States, the individual patient is the primary, if not sole, focus of concern. Historical codes of ethics emphasize the physician’s duty to the patient. Philosopher Robert Veatch observed: “The naditional professional ethics of physicians places great emphasis on the virtue of benevolence and the physician’s responsibility to serve the patient. The tradition honors the individuality of the physician-patient relationship, professional secrecy, and the physician’s duty to promote the patient’s welfare.” In this relationship, Veatch noted, tradi- tionally the physician determines “which action will best further both the physician’s and the patient’s intere~t.”~

Modern medical ethics emerged in the 1960s and 1970s as a radical challenge to the status quo of physician domi- nance. In opposition to paternalism, the “doctor knows best” ideology prevalent at the time, bioethicists stressed that the competent patient has rights as an autonomous moral agent to make decisions about his or her own health care. The dominant question was “Who decides?” And for bioethics in general, at least before the advent of managed care, the answer was: “The patient.”

The emphasis on patient autonomy is seen in a rich literature on informed consent, the right to refuse treatment, human subjects research, and death and dying. As courts and legislatures have become increasingly involved in decision making, a complex body of law and precedent concerning patients’ rights to autonomous decision making has developed.’ Although medicine and bioethics di- verged over the relative weight given to beneficence (pro- moting patient welfare) and autonomy, both disciplines saw the patient primarily as an individual separated and distinct from a social context. In this view, in bioethics as in medicine, there has been a strong tendency to view families as necessary but often suspect and distracting entities. A typical view is the one expressed by philosopher William Ruddick in 1980: “A family’s welfare does not compete

with, let alone overrule, a patient’s welfare in a physician’s deliberation.”*

Moreover, in its formative years, bioethics focused almost exclusively on dramatic, termination-of-treatment cases, or on issues around high-technology care, rather than on chronic conditions, which affect the patient and family in significant ways over long periods of time. The often- partial successes of acute care medicine and “half-way tech- nologies,’’ as well as the health care needs of an aging population, have created an increased need for chronic care. Acute care medicine and a bioethics focused on individual autonomy pushed family issues aside in a way that is not so easy to do in cases of chronic and long-term care.

The parallel development of modern bioethics and trends in health care law have tended to focus on difficult decisions at the end of life, and moreover, on an intellec- tual analysis of both the decision-making process and the decision itself. While specialists in both bioethics and the law support an individual’s right to make “foolish” decisions, even decisions that lead to death, they clearly prefer “rational” decisions, that is, ones whose arguments can be clearly articulated in terms of a risk-benefit calculus and whose underlying values are consonant with mainstream culture. The autonomy framework, as it is typically expressed in bioethics, is wary of the often unexpressed and “subjective” emotive and relational aspects of the patient’s life. The ideal decision process seems to proceed in a rar- efied world of the intellect, unencumbered with the com- plications of culture, religion, personal history, or beliefs and unpopulated with relatives, friends, or others with whom the patient has shared years of both good and bad experiences. These factors are sometimes lumped together under the rubric of “values,” giving them a nodding recognition but implicitly giving them less importance because they are so difficult to define and measure.

In the landmark study, “Making Health Care Deci- sions,” the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Re- search summed up the importance of including families in decision making: “Beyond making the family feel more useful and aiding professional-patient communication, family involvement seems to be therapeutically desirable. . . .’’9

Families influence an individual’s decision to seek health care, to adhere to a medical regimen, and to affect the outcome, the Commission noted. Moreover, any particular individual’s illness has an effect on the whole family. The Commission stated, “In some ways, therefore, the family may be viewed as the unit of care, which means it needs to be involved in medical decisionmaking because the effects of decisions about any one member will affect the entire family.”

What the Commission gave in one paragraph it took away in the next. “Families are not always cooperative units. They may interfere, pressure, misinterpret, and mis-

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inform. What is in the patient’s best interest may not be congruent with the interests of all other family members.” Finally, the Commission asserted that the involvement of any “outsiders”-even family members-depends on the patient’s agreement.’O While not disagreeing with this conclusion, we note its ambivalence toward families. Appar- ently, it is good to involve families, but only “good” families ought to be involved.

Many individual clinicians (physicians, nurses, social workers, therapists, and others) and bioethicists (philoso- phers, lawyers, clergy, social scientists, and others) are sensitive to family concerns and interests and appreciate the limits of individual autonomy as a dominant model for care decisions. Some clinicians find their attempts to engage and support families in a meaningful way thwarted by or- ganizational requirements, lack of time and reimbursement, and, increasingly, administrative and regulatory oversight that seeks to contain costs and detect fraud in public programs. For example, the federal program Operation Trust, ongoing since 1995, investigates fraud in Medicare-certi- fied hospices to uncover cases in which patients are inap- propriately referred, that is, they have a longer life expect- ancy than the allotted six months. In addition to detecting actual fraud, such efforts discourage referrals to a service delivery system whose mission explicitly includes the interests of families in the plan of care.

Some care services (for example, palliative care) and special grant-funded projects have included family members in a positive way; and some medical specialties (for example, family practice and pediatrics) explicitly assert their concern with the health and well-being of the whole family, not just the patient. In the past few years several bioethicists have begun to explore the complexities of family relationships in medical decision making and to advocate, to various degrees, consideration of family interests.”

Nevertheless, negative views of families’ involvement in patient care are a prominent theme in the professional literature, lore, and practice. Some of these views are thoughtful philosophical analyses that lay out cogent concerns about giving families a significant role in decision making. Ezekiel Emanuel presents the case against family involvement in end-of-life decision making succinctly:

In many cases what is considered “the family” is strained. The closest relatives may be nieces or neph- ews who live far away. . . and may not have discussed issues of terminating care. . . . Not only might individual family members inaccurately predict a patient’s wishes, there are often disagreements among family members about what types of treatment the patient would have wanted. . . . Incompetent patients may also create oppressive financial, emotional, and time burdens; costs for home nursing care or a nursing home may be draining vital family resources; the fam-

ily may find caring for or visits to the patient physi- cally and emotionally exhausting. That these conflicts may distort the family’s choices of care is clear; what is less clear is how often and whether we can detect these conflicts and protect against them. Fi- nally. . . by the very nature of a right of privacy, no one but the person himself can exercise that right [to terminate treatment].

Emanuel situates the family in his larger philosophical framework. He believes that “to the degree we find the family an important public institution worthy of political recognition and protection, we deviate from the tenets of liberal political philosophy.” Only appeals to conceptions of the good life, transcending matters of justice and rights of privacy, ought to determine standards of justifiable ter- minations of treatment, he asserts. In his view community rather than family ought to be the paramount social institution.12

Closely argued, conceptually complex presentations of the pros and cons of family involvement in life-or-death decision making are the philosophical backdrop against which most health care dramas are played out. In the real world of health care delivery, such arguments are seldom referenced. Families are at best tolerated or sometimes accommodated, at worst patronized or labeled as barriers to good patient care. Hospital administrators consider families, like labor relations and risk avoidance, difficult “man- agement” problems. Clinicians find families frustrating. In a series of 42 interviews with legal counsel and clinical staff about end-of-life care in New York City hospitals, one of us (C.Z.) noted: “When asked what kinds of end of life care situations were the most problematic and why, virtually all respondents immediately focused on the same factor: families. More specifically, lack of consensus or agreement involving family members was reported to be the leading source of problem^."'^

These views parallel those in the broader society. Fami- lies are widely believed to be disintegrating; the label of “dysfunctional” is freely attached to families with many different characteristics, only a few of which represent true dysfunction. A recent conference on “excellence in end-of- life care,” for example, listed “dealing with dysfunctional families” as an “advanced topic. ” Disintegrating and dysfunctional families do exist, and they undoubtedly compli- cate a patient’s medical care. Although families should not be idealized or romanticized, this dark view is only one part of the spectrum. Many families, perhaps most, con- tinue to function reasonably well in extremely difficult circumstances, and care for one another as best they can in times of illness or death. They receive little recognition and no incentives. Often the families who are singled out for attention are unusual in some respect. They may be heroic families whose resources or sacrifices become the

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standard against which other, less perfect families are measured. Or they may be the “dysfunctional” families whose horrendous misdeeds become legendary in medical circles. Finally, they may be among the few families whose challenges enter the courtrooms, whose names become itali- cized in case law, and who enter the vocabulary of law and medicine as precedents rather than real people.

Potential sources of conflict What are the sources of negative presumptions about families? Confusion about who counts as “family” is a funda- mental starting point. Families today involve complex, sometimes nontraditional relationships. Families may be divorced, blended, adoptive, immigrant, multigenerational, extended, gay and lesbian, fictive, or any combination of the above. Clinicians looking for legal “next of kin” or a single decision maker may be baffled by elusive and sometimes conflicted relationships among all the people who lay claim to being “family.” For the purposes of this article, we use a broad but not unlimited definition of “family”: “Fam- ily members are those who by birth, adoption, marriage, or declared commitment share deep, personal connections and are mutually entitled to receive and obligated to provide support of various kinds, to the extent possible, especially in times of need.”14

Another potential source of conflict is related to non- Western reliance on family decision making, sometimes to a degree that would be unacceptable legally or ethically in the U.S. context. Examples include family decisions to with- hold treatment for moderately impaired newborns, to with- hold a diagnosis of cancer, or to enroll a family member in a clinical trial without the person’s consent. Other sources are explicit in the literature; probably most derive from experience in training and mentoring. Teaching naturally focuses on “interesting” cases and problem solving. If hard cases make bad law, then it is equally true that cases involving “bad” families make bad medical practice. The various sources for negative views of families reinforce each other.

Medical professionals see families under stress, often in crisis. According to family physician Richard Waltman, “anxious, and sometimes, difficult families” are an “inevitable part of the package when treating patients, especially elderly ones.” Yet, he continued, ‘At no time during medical school, internship, residency, or fellowship are we taught how to ease relatives’ fears, or to keep kinsmen at arm’s length while we’re trying to do right by the patient.” Is A survey of levels of family involvement by resident and attending family physicians supports this view Residents asked about family issues with individual patients or spoke directly to family members in less than half (41 percent) of 76 interviews. Planned family conferences or emotional support of family members seldom occurred. In their one- on-one teaching consultations with residents, attending

physicians asked about families in only 6 percent of the cases. And these are family physicians! l6

Physicians have no training in understanding family dynamics in general or the range of “normal” or typical family reactions to illness. In practice they may know little about a particular family’s life outside the medical arena. There are few models against which to evaluate a particular family’s reaction or behavior. If the model most readily available is the highly rational, largely objective one of medical case presentations or bioethical argument, then almost all family reactions will seem “emotional” or “aberrant.” Similarly, if all families are measured against the heroic few who stoically take on extraordinary responsibilities, then almost all families will fall short. There have been several recent efforts to analyze the different elements of family relationships that are affected by serious illness and to train medical professionals to initiate preventive interventions that encourage family adaptation and support.” Models that recognize as normal the profound emotional and functional impact on families when one member is seriously ill are still, however, largely unknown by nonspecialist practitioners.

Professionals value technical and medical expertise, their own and that of their colleagues. Families have expertise, too, but it is not the sort that professionals recognize or particularly value. Families are experts about their relative; often this expertise is highly technical and acquired over years from the necessity of providing care. Most often, though, the expertise is highly individualized-the person’s place in the family, history of relationships, likes and dislikes, lovable characteristics and annoying habits. To be sure, families may overlook or misunderstand some key elements of their loved one’s identity, but they bring a more complex and complete view of the patient than is usually found in a clinical description. The value of this expertise is not always clear, even to families themselves.

Families represent a challenge to the power and authority of professionals and institutions; their role as watchdogs and agents of quality control is especially threatening. As physicians feel their traditional authority being under- mined by managers, ethicists, regulators, courts, and others, they may view families’ attempts to influence care as particularly egregious. In some cases, the family’s viewpoint or decision is rejected not because it is venal or self- serving or because the patient’s best interests lie elsewhere, but simply because it challenges the doctor’s or hospital’s authority and policies. In other cases, clinicians accede too quickly to family pressures, because they do not want to engage in prolonged discussion.

In hospitals and other inpatient settings families upset institutional routines and authority in ways that patients do not. Patients may be difficult but by becoming patients they have handed over some of their freedom and a good deal of their identity to the medical care system. Their

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options to complain and make changes are usually limited. Families, however, are mobile; they can identify and find officials to whom they can bring their concerns and com- plaints; they have strength in numbers; unlike the sick, they are not subject to the vulnerabilities of patienthood, although they are vulnerable in other ways.

Some institutional policies and restrictions are clearly justified by their purpose and requirements for safety and infection control. Others, however, are less clearly medical in nature and more designed to control outsiders. From their beginnings in the Middle Ages as creations of the mili- tary and the Church, hospitals have had a tradition of strict enforcement of rules and deference to authority. Families move unknowingly into situations where the rules are unwritten and where enforcement is often strict and unfor- giving; they find out that they have blundered only when they are rebuked for having done so.

Families are not perfectly cohesive entities; among the various members, there are always some hidden or overt tensions. In the alien environment of a hospital and under the stress of illness, these tensions sometimes erupt. Longstanding but suppressed differences may emerge; new alliances may be forged; forgiveness and closure may be achieved. While this may be interesting material for psy- chotherapy or literature, clinicians find it unnerving and distracting. Rather than acknowledging the family’s dis- tress, clinicians tend to distance themselves from the family and from the emotionally charged atmosphere. Particu- larly when a family member is dying, families seek solace from each other, from friends and community, and also from the medical staff. Physicians in particular do not see a role for themselves when they can no longer offer benefi- cial treatment to the patient. Perhaps to avoid the families’ grief, or to spend their time on other patients whom they can help, or simply to write off a “failure,” they drift out of the picture. Family members invariably (and correctly) see this as abandonment.

Professionals are trained to keep their emotions under check; they may feel particularly close to some patients but their professional stance does not permit open expression of these feelings. Watching family members with no such constraints may be painful, embarrassing, or threatening. Sometimes an attitude of cynicism or contempt masks the confusion.

Another source of conflict is that professionals fear litigation from angry or disgruntled family members. They may shield information or prevent family members from observing direct care lest something go wrong in the family member’s presence. Although there can be no guarantees against lawsuits, studies have shown clearly that litigation is less, not more likely when communication is direct and honest.l8

Finally, all these potential sources of conflict are ampli- fied when the family comes from a different religious, cul-

tural, or ethnic background from the dominant one among providers. Often providers themselves come from different backgrounds. If families and professionals do not speak the same language metaphorically, consider how much more difficult is communication when literally they do not speak the same language! As the United States has become more diverse, and as families with very different values and traditions have come into contact with the health care system, the tensions between families and professionals have surely increased.

Families and health care: systems in change Paradoxically, the same health care system that distrusts and devalues families could not exist without them. Most health care in the U.S. is not delivered in hospitals or doctors’ offices but in homes, and not by trained professionals but by untrained family member^.'^ About 25 million Ameri- cans provide long-term care for elderly, disabled, or seriously ill relatives or friends. These “family caregivers” provided $196 billion worth of unpaid labor in 1997.20 A recent study of terminally ill patients found that family members, mainly women, provide the bulk of care for dying patients, with little help from paid caregivers or volun- teem2’ The cost “containment” that has been a hallmark of the recent trend toward managed care is to a large degree cost shifting from third-party payers and employers to individuals and families.

In each of three broad ways of loolung at families in health care, recent trends are bringing families to a more prominent position:

1. As implementer or provider of care (either directly or in a managerial capacity);

2. As part of the unit of care; 3. As surrogate decision maker. After the Clinton Administration’s health care reform

proposal failed, health care reorganization rapidly changed basic economic, professional, and institutional arrange- ments. The main features are familiar elements of a market economy: growth of large corporate entities, including complex networks and alliances; increased competition; transformation of the nonprofit sector into for-profit entities; cost-cutting to offer attractive prices to large purchasers; shareholder return on investment as a major goal; and opportunities for entrepreneurship in services and products.

While many of these high-level corporate maneuverings are only dimly understood by ordinary patients and families, they have had a powerful impact on how health care is delivered and paid for. Hospital stays, as noted, are shorter than ever. In the period 1980 to 1995, economist Uwe Reinhardt reports, both total admissions per thousand and average length of stay declined by about 20 percent. Data through 1997 data show the same percentage. The result is a decline in inpatient days per thousand of 40 percemu

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Insurers are cutting back on the number of hospital days they will pay for even in an approved hospitalization, if no tests or procedures are performed on weekends or other days. More surgeries and other procedures are performed on an outpatient basis. High-technology home care com- panies have created a vast market for their products, and some procedures that would have been done only in hospitals just a few years ago are now commonly performed in the outpatient setting or even at home. High-tech home care is big business: the market grew from $4 billion in 1987 to $22 billion in 1994. One component alone, home infusion therapy, grew from less than $1 billion in 1987 to $3.3 billion in 1993.23

The impact on families of this transformation in the health care delivery system is profound, although not yet documented statistically. Suzanne Gordon observes, “When studies suggest that reducing length of stay saves money, costs incurred by family caregivers are almost never fac- tored into cost-benefit analyses.”24 When patients are discharged after short hospital stays, family members are expected to do post-operative wound care, chemotherapy infusions, respirator monitoring, and other tasks usually performed in hospitals by trained staff. Family members are not considered “too emotional” to do this work when it saves money for payers and providers. Perhaps to explain away this paradox, health care professionals often downplay, even trivialize the degree of technical skill re- quired. Anne Billingsley, a cardiac surgeon, sends her ad- mittedly “terrified” elderly bypass patients home a few days after surgery. “It’s just babysitting,” she says, “helping them walk up and down the hall a few times. Their wives can do that for them at home.”2s In defending outpatient mastectomies (now increasingly banned by state legislatures), physician Steven Baker says that oral medications “usually” control pain and that “family members can be trained to change wound dressings and empty the drainage pouch.” Such care “empowers” women, he claims.26 Do families feel empowered by their responsibilities? The experience of one cancer patient’s wife is probably illustrative: ‘X half- day training for the family [far more than most families get] is not going to compensate for a trained nurse observing the patient’s appearance and behavior for signs and symptoms most of us would never recognize. . . . When my husband was sent home after cancer surgery, he was in pain, worried and sleepless. . , . I hadn’t the first idea how to nurse him-years of experience with financial accounting standards and tax laws were not

Even within hospitals, staff cutbacks in nursing and nurses’ aides have put more responsibility on family members. In 1996 the Institute of Medicine reported that the proportion of registered nurses to other nursing staff declined in many hospitals from 76 to 100 percent to 52 to 79 percent.28 Less well trained aides are replacing nurses, and even housekeepers and security guards or escorts are

now being asked to provide some patient care.29 Small wonder that patients complain about hospital care. A recent American Hospital Association survey of nearly 37,000 people recently discharged from hospitals found that nearly one third of the patients felt that they were discharged before they were ready; 30 percent said that they were not alerted to danger signals. Over 22 percent felt that there were problems in involving family and friends.)O

Family participation in chronic care and long-term care is especially critical to the health care system. Over 90 percent of chronically disabled elderly people who require assistance receive informal care from family, friends, or neigh- bors; two thirds of the disabled elderly rely exclusively on informal help.’’ The number of informal caregivers in the United States has been variously estimated as between 7 and 23 million:2 depending on the age range, sample crite- ria, and the definition of caregiving. By the year 2020, up to 14 million elderly people will need long-term care- double the current number.33 And while most of the recipi- ents of informal care are elderly, about a third are under the age of 60.)4 At the same time, more and more women, the traditional family caregivers, are employed part- or full- time. The network of potential family caregivers is shrink- ing because of smaller family size and geographic mobil- ity.35

More compassionate and humane forms of health care delivery for terminally ill patients also depend on family involvement. Hospice is the best-known example; but to receive in-home hospice services, the most prevalent form of service delivery, there must be an available and willing primary informal caregiver. Philosophically hospice is pre- mised on the involvement of family as primary caregivers with professional assistance to supplement this care. In- patient hospice care is less dependent on a primary caregiver, but it is extremely limited in time and availability. A review of data on patients receiving hospice care in 1996 reported that 90 percent of the 59,000 current hospice patients and 393,000 discharges (80 percent deceased) had a primary caregiver who was, in three quarters of the cases, a relative who shared the same re~ idence .~~

In hospice and palliative care settings the family is considered not only a provider of care but also a recipient of care. A typical statement of this philosophy is: “The family and patient are a unit of treatment. The support team should try to develop good communication with the family to be able to offer help respectfully and tactfully throughout the different phases of the illne~s.”~’ In the view of one team of palliative care specialists, “Palliative care needs to include both the patient and family because the needs of the family may exceed those of the patient.”38 Another study “vali- dated the theory that in the care of the terminally ill patient, family members should be considered as pseudo-patients in and of themselves with vital attendant needs.”39 What exactly it means to “treat the family as a unit” is still

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evolving.40 In the context of palliative care or hospice, it mostly means emotional support, respite from caregiving responsibilities, and instruction on comfort care for the patient, and bereavement follow-up. Follow-up is particularly important for surviving family members and loved ones, since studies suggest a correlation between bereavement and negative physical and mental health effects.41

These are a few of the pragmatic and prudential reasons that families should be drawn more directly into a partnership, rather than a confrontation, with medical professionals and institutions. An even more basic reason is respect for the patient’s self-defined identity as well as autonomy: most individuals have some deeply meaningful relationships with others who, by traditional definitions or by choice and commitment, count as “family.” These are, in Raphael Cohen-Almagor’s evocative phrase, “the patient’s ‘beloved people.”’42 Considering the patient isolated from the social network that helps define his or her core identity fails to respect a complete and complex sense of person- hood.

Roles of kin: whose patient is it, anyway? Although the literature and the courts focus on conflict in life-and-death cases, most encounters between families and the health care system occur in a much more prosaic fash- ion. Even when the patient’s condition enters a terminal phase, what is unknown is not so much what is going to happen but rather when and how it will unfold. The family’s role as surrogate decision maker is only one of its many potential roles.

Kin as Critics and Advocate In his classic study of mental institutions, sociologist Erving Goffman noted the role of “kin as critics” or “watchdogs.” Goffman observed: “Kin as critics present a special problem because, while inmates can be educated about the price they will pay for making demands on their own behalf, relations receive less tutoring in this regard and rush in with requests for inmates that inmates would blush to make for them~elves.”~~ While mental institutions undoubtedly have changed since the 1950s (there are certainly fewer of them), and even the word “inmate” sounds archaic, Goffman’s observation remains cogent. Families watch out for their relative in a hospital or nursing home; as unofficial agents of quality control, they often criticize individual staff or institution policies. Families who have dealt with chronic illness are particularly likely to be careful monitors of medications and procedures because they are intimately familiar with the specifics of the patient’s care. Family members perceive this vigilance as both necessary and emotionally

As “critics” or “quality control agents,” families are likely to request or demand attention and assistance

that they feel is important for the patient but that may be inconvenient for staff or outside their perceived job definitions.

Families can also be advocates for the patient, seeking access to consultants, services, or changes in procedure that they feel will benefit the patient. Kin can also be advocates for themselves, although this is often difficult to accom- plish. Kin can be spokesmen for the patient and the family, expressing views and concerns that the patient may have difficulty in articulating. Kin can act as intermediaries between clinicians and the patient, seeking information and relaying it to the patient in ways the patient can understand. It is true that kin may sometimes, deliberately or inadvertently, shape this information in ways that clinicians do not intend or add their own (mis)interpretation. Some- times family members will inadvertently or covertly under- mine the regimen. But on the whole kin want to support the medical recommendations and encourage adherence to diet, exercise, medications, and the like. Clinicians find this a useful and desirable role for kin.

Kin are “first responders” to patient symptoms and needs. Of course, some patients are their own best advocates and critics of the system; their families play a subsid- iary role in supporting their efforts. But for many patients, especially those who are seriously ill or who have cognitive impairments, the family is the primary buffer between them and the health care system.

Kin as Providers of Direct Care When the patient is at home, kin are the most common providers of direct care. Even in long-term care settings, such as nursing homes or rehabilitation settings, however, families may be expected to provide considerable amounts of hands-on care and services, such as laundry and feeding. If they do not visit regularly or play this role satisfactorily, staff may make disparaging remarks about their loyalty to the patient.4s Even extraordinarily faithful family members may occasionally miss a day or week because of illness or other demands; then staff may feel overburdened or re- sentful because they now have to perform tasks that families usually manage. The resident who is usually patiently spoon-fed by a family member may receive only hurried assistance or none at all when that person is absent. Un- touched trays are returned to the kitchen without a glance.

When this happens, the family moves from its,direa- care into its advocacy role. The conflict is particularly acute between families and health care aides, low-paid workers who provide most of the direct care to often difficult-to- manage residents. Nancy Foner’s ethnographic study of a nursing home, very sympathetic to the aides’ worlung conditions, found that “the common view among aides is that patients’ relatives interfere and make life more difficult for them.”46 Foner relates:

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This view is summed up well in a conversation I had with Ms. Price, an aide with four patients in her section who had family visitors who came virtually ev- ery day. When I commented at lunch on the number of family visitors in her section, she assumed I was sympathizing with her and said, with enormous appreciation, ‘Thank you. You see the problems I have.”’

From the families’ perspective, according to Foner, the great- est difficulties occurred in dealing with aides, some of whom, they felt, failed to take good care of their relative and treated family members as intruders.

Kin as Witnesses Kin can also play a role as “witnesses,” not in the legal sense but in the spiritual sense of accompanying a relative through the journey of illness and death and preserving the story of what happened for others in the family. For the competent but ill and hospitalized patient, the family is the link to an identity beyond the illness, to life outside the hospital, and to a world in which one makes choices about daily living without the constraint of institutional rules or parameters. Families try to make life in the hospital as “homelike” as possible. Despite some recent attempts to improve their amenities, hospitals still make patients and families conform to an often baffling and seemingly irratio- nal system that seems intent on separating patients from their families rather than sustaining their relationships.

Physician and writer Rita Charon eloquently describes the hospital world:

To outsiders, hospitals are dream sequences where alien languages and customs are used, where rules that apply everywhere else are suspended, where human interchange is replaced by a peculiar set of commands: take off your clothes, hold your breath, don’t move. The boundaries that customarily exist between public and private or between acceptable and taboo break down. . . . Visitors are thrown by the awful smells, the sights of wounded people, the sounds that should be private. . . . Disease is the signifier on this island; no healthy visitor can feel at eases4’

In this stark confrontation of worldviews, what families are expected to do and how they are expected to behave depends on one’s perspective. The same simple actions- visiting, bringing gifts of food, requesting assistance-can be seen either as signs of caring or as intrusive and bother- some. Addressing physicians, Charon asks:

Haven’t we all sat behind a desk at the nurses’ station when a family member approaches tentatively, asks softly, ‘Where can I get a blanket for my father, my


12

father is cold?’ In the middle of writing a note or paginb an intern, we wave the son or daughter away vaguely, toward someone else who might have the time to escort the person to the linen closet. We suspect that there might not be an extra blanket there at al1.48

Families generally act in what they see as their proper role: monitoring patient care to obtain the best possible outcome and protecting the patient’s interests and welfare. In so doing they often come into conflict with professional or institutiobal norms of what staff considers “good behavior” on the part of families. “Good” families, from the staff viewpoint, observe all rules, visit only in appointed hours, wait patiently, come in small groups, assist the staff when requested, and are cheerful and unobtrusive. An unwritten etiquette requires selflessness and self-control on the part of families in the face of often harsh realities of pain, suffering, and grief. Families that demonstrably express their anguish, displeasure, or confusion are often described as “acting out.”

Such families, in a typical medical view, must be “handled.” Sociologists Barney G. Glaser and Anselm L. Strauss observed:

If kinsmen appear at the bedside of a dying relative during last days, their presence can pose severe problems for the medical and nursing personnel, and may actually interfere with the efficient care of patients. Problems tend to center around four issues: the family needs to be prepared for the forthcoming death; they may need to be persuaded to delegate responsibility for the dying person to the hospital; they may require coaching in proper modes of behavior while at the hospital; and they may need to be helped in their grieving, either for their own sake or for the sake of preventing disruption of ward activity.49

This view, although expressed thirty years ago, is still current. “Offending” families who want to visit too often, or noisy families who grieve too loudly, or who are too “fussy” must be reprimanded, taught the rules, and if necessary, barred from the patient’s room. While there certainly must be a balance between the rights of the family to express its grief and concern in traditional or personally meaningful ways and the rights of the other patients and staff, treating kin at such a momentous event in their collective history as though they are misbehaving children may encourage the very behavior it seeks to prevent. Glaser and Strauss and other authors as well note that this “problem” of “overexpressiveness” is particularly acute when the family is from a lower class or non-Anglo background. The “etiquette” of dying in hospitals apparently allows only taste- fully controlled and discreet expressions of grief. Yet in

The journal of Law, Medicine &Ethics

some family traditions, failing to mourn in expressive (read: loud and prolonged) ways would indicate lack of love and respect for the dead relative.

In the literal sense of “witness,” institutional requirements about the presence of family members in critical care units or at procedures like cardiopulmonary resuscitation (CPR) become barriers. I n desire to play this role faith- fully and not to abandon the patient because of queasiness, but staff often see them as interlopers. (Until the 1970s fathers were similarly barred from delivery rooms.) The traditional view that families must be prevented from wit- nessing CPR, either because it will be too upsetting for them or that it may lead to litigation, is being challenged, especially by nurses and chaplains. Dezra J. Eichhorn and colleagues believe that the movement toward family presence supports “nursing’s moral imperative to preserve the whole- ness, integrity, and dignity of the family unit from birth to death.” They offer guidelines for practice that stress staff support of family members before, during, and after CPR.’O I n can also be seen as interlopers in a relational sense, by intruding on the physician-patient relationship when, for example, they request that information about prognosis be withheld from patients.

At the extremes of the spectrum of roles for kin, some families see their role as watchdogs and protectors of the patient; they play an active, even aggressive role in all aspects of patient care and decision making. Some clinicians, at the other extreme, expect the family to play a passive role until cued to take a more active role but only to ensure that the patient follows doctor’s orders. Kin are expected to assist when asked but not take over, to support the patient emotionally but not to express their own emotions, to think only of the patient and never of themselves. With such different unstated but deeply ingrained perspectives, it is not surprising that simple actions or omissions often lead to serious conflicts.

Kin as Decision Makers Families’ role as surrogate decision makers in life-support or other treatments decisions for incompetent patients has been thoroughly analyzed and supported in recent years, although surrogates are often unclear about their appropri- ate role and how to make their decision count.’l Some studies have shown that family members do not always know the precise wishes of their relatives, although no other group comes any closer in judging what the patient would have wanted in a particular s i t u a t i ~ n . ~ ~ One study, which involved paired interviews of patients and surrogates discuss- ing three hypothetical clinical scenarios, found that surrogates on average made correct predictions two-thirds of the time. Having spoken with the patient about end-of-life issues increased the likelihood of concurrent views, but patients’ beliefs that they would live longer than ten years,

or the surrogate’s participation in religious services decreased the odds.’3 Clinicians, as already noted, complain about disagreement among family members about a decision. It is seldom noted that there is often disagreement among members of a medical team. By the time they have resolved their differences or acceded to one viewpoint, they present a united front to the family. The family sometimes mirrors the same uncertainty that was expressed by some members of the medical team. But the family is expected to speak immediately with one voice, without the benefit of the prior discussion. They need time to absorb the information and to consider the options.54

Families are coming to the attention of hospital administrators, lawyers, and courts in another way: through the increased attention to “medical futility” cases. These are cases in which someone, usually a family member, challenges a medical team’s recommendation to discontinue treatment. Such cases typically involve removal of a respirator or the creation of a “Do Not Resuscitate” order. Al- though such cases were not unknown in earlier eras, physicians and administrators are increasingly considering the need to contain costs and conserve resources that might be used for other patients.ss Some family challenges might have been avoided with better communication and attention to family belief systems; some are resolved with discussion over a few days; others drag on as positions become entrenched; a few cases end up in the courts, either before or after the patient has died.56 Law professor Allan Meisel calls these cases “reverse right-to-die’’ cases and pre- dicts that they are “likely to occupy as much, if not more, judicial effort in the coming years as conventional right-to- die cases have in the last two decades unless legislation cuts it ~hort .”~’

When the patient is or has become incompetent, the bioethics literature focuses on surrogate decision makers, and the strengths and weaknesses of current standards for making surrogate decisions (“best interests” or “substituted judgment”). Patients typically choose family members to serve as surrogates,S8and there are good reasons to locate this moral authority initially with family members.” Sur- rogates are expected to act in accordance with the patient’s prior wishes, if known, or in the best interests of the patient. The interests of any individual family member, or of the family as an entity, do not count; indeed, they are typically excluded from the process. Philosopher Dan Brock argues that “it should be the failure to give due weight to the patient’s needs, not the mere presence of conflicting interests, that disqualifies the surrogate.” Acknowledging that “due weight” can be hard to define in specific cases, Brock concludes that failure to secure the “best possible” care should not disqualify the family members; rather, it should be “only the failure reasonably to serve the extraordinary needs of an incompetent person, in a manner com- patible with the equitable treatment of other family mem-

13


bers.”60 Yet an all-or-nothing standard, rather than Brock‘s more complex formulation, is common.

As long as the family agrees with medical advice, har- mony prevails. When the family disagrees, conflict replaces comity. As long as the conflict is confined to the patient’s prior wishes or religious beliefs or other views, and as long as the decision is “reasonable,” that is, one that can be justified on rational grounds, many clinicians and bioethicists encourage or tolerate family members” participation and respect their decisions. Not always, however, as the long line of lawsuits pitting families against doctors and hospitals on termination of treatment attest. In one well-known case, Patricia Brophy encountered a ”furious” doctor and a “cold shoulder” from hospital staff when she initiated court proceedings after the hospital refused to consider her request to remove tube feedings from her husband Paul who had been in a persistent vegetative state for more than two years. In reaching her decision, she had the support of her large, deeply religious Catholic family and her priest. None of this counted to the hospital or doctors.61

When faced with a decision about end-of life care, a common presumption among clinicians and ethicists is that family members will act out of motives of unabashed self- interest. The litany of burdens that the patient’s illness brings to a family weighs so heavily in a calculus constructed by an “uninvolved” person that it may seem inevitable that family members would opt for ending their burden. Yet some family members, even those who have made many sacrifices, will ignore self-interest, or the interests of other relatives. Having invested so much in the ill person’s life and care, they are unwilling to give up hope. At the least, a neutral stance toward a particular family ought to be the starting point for any decision-making process.

Sometimes “objective” medical recommendations are based on implicit values that the patient and family may not share. These values may include a low tolerance for mental deficits, physical handicaps, or dependency.62 Or they may include a belief that life must be prolonged under all circumstances, that suffering is ennobling, or that people with some diseases, such as AIDS, are unworthy of care. The underlying values held by professionals are seldom sub- jected to the same scrutiny as those of families.

When family members raise considerations of their own interests or those of other individuals, such as children, their views are even more likely to be considered irrelevant or even deleterious. They may be excluded from the process because they are unable to be ”objective” or because they are “too emotional.” There are of course some cases in which greed or malevolence may be at the root of family members’ views. For the most part, however, their considerations reflect the reality of their lives; how will this decision affect each of them and all of them? In their own decision making, most competent patients consider the impact of their decisions not only on themselves but also

on those closest to then1.6~ In the SUPPORT study, Ken- neth Covinsky and colleagues interviewed over 3,000 patients and found that economic hardship on the family was associated with preferences for comfort care over life-ex- tending care. However, economic hardship did not influence patient-surrogate disagreements about the goal of care.@ It is reasonable to expect that many family members will weigh the same elements in their thinking. The clinician’s role is to ensure that the medical facts are communicated clearly and fairly, to ensure that the patient’s explicit advance directives are honored, and to protect the patient from clear cases of abuse, whether that might come from failing to treat or continuing treatment. Although clinicians are not well equipped to take on the daunting task of being the arbiter of family relationships, they are sometimes drawn into these tangled webs. At such times outside evaluation and guidance are important.

Recommendations: toward an ethic of accommodation As more responsibilities and burdens shift to informal caregivers, there is an urgent need for family-sensitive policies and practices. Working with families means developing an ethic of negotiation and accommodation, a balanc- ing that has been suggested for long-term care and home care but has received little recognition in the broader settings of health care delivery.65 Given the common histories that support shared values and reciprocal obligations between patients and family members, an ethic that recog- nizes the varying roles and interests, and works toward negotiation and accommodation where interests compete or diverge, will provide a strong foundation on which to build solid partnerships among clinicians, patients, and families.

Patients have both interests and preferences. Interests include essential aspects of health, well-being, and functioning. Where these basic interests are at stake, the physician’s obligation is to respect patient choices. On the other hand, patient preferences include value-laden choices about the way in which these aspects of life are maintained or provided: for example, whether a daughter should give up her job and move an ailing parent into her home, or whether the parent can stay in his or her own home with paid help. In this context, family members’ well-being and vital interests also come into play. There is no simple for- mula to establish primacy of interests. Other professionals, such as social workers, family therapists, or clergy are often helpful in clarifying options and negotiating an acceptable arrangement. As a first step, physicians should explore with their patients how involved they want family members be in care and decision making, and should explore with families their own expectations.

Caregivers in a series of focus groups conducted by the United Hospital Fund said that what they need most is un-

14

The]oumal of Law, Medicine &Ethics

demandable and timely information; better preparation and training for both the technical and emotional aspects of their role; compassionate recognition of their anxiety, suffering, and hard work; guidance on defining their roles and responsibilities in patient care and decision making; and support for setting fair limits to their sacrifices.66 We suggest that these needs can be better met by practitioners, administrators, instructors, and others through three main avenues: education and skills acquisition; establishing partnerships with families; and regular dialogue and communication.

Institutions should support clinicians by taking families seriously and by developing family-centered policies and practices. Some models already exist in pediatric hospitals where parents are encouraged to accompany a child to all procedures and are provided a place to stay overnight, Other programs involve more liberal visiting hours and regular family meetings when a patient is in an ICU. Some family medicine programs take genograms and include this information in the patient’s chart. Such policies signal to staff that they should be interacting with the family. Still, clinicians are on the front lines in dealing with families, and are the most important instruments of change.

Education and skills acquisition Building an understanding of family dynamics and illness into educational materials and seminars can enhance both partnership building and ongoing communication. When family members who have had experiences with illness speak at training sessions on AIDS or cancer, for example, the impact can be powerful. It is also useful to elicit feedback from family members after a crisis has pa~sed.~’ In another exercise, clinical staff can be asked to describe their own experiences as family members when a loved one was ill. In many cases professionals entered the health care field because of an experience with a relative’s illness.

Part of the educational process should be instilling a greater appreciation of the changing structure of families and the variety of ways in which people form meaningful commitments. In some cases this means exploring deep- seated feelings about, for example, homosexual partnerships, unmarried couples, mixed-race marriages, and other nontraditional relationships. Another aspect of education is learning about the beliefs, traditions, and heritage of the major cultural and ethnic groups in a community.68 In some cultures patients expect doctors to communicate directly with their families and for particular family members to be responsible for decision making. At the same time, it is important not to stereotype all families from a particular group. Cultural norms should be discussed but not assumed. Many influences, such as class, length of resi- dence in the U.S., acculturation, education, and personal choice may modify cultural identities. Gender stereotypes

can also influence how staff react to family members, for example, “Women are the caregivers;” “Men don’t cry.”

Families need education as well. Hospitals now have extensive pre-admission materials for patients; this could be supplemented with family-focused materials, including information about how families can be most helpful to the patient, visiting hours, how to identify various staff, and what to expect in terms of their direct or indirect participation in the patient’s care. Written and audiovisual materials should be used to support, not substitute for, ongoing discussion. Staff can try to put themselves in the family’s place in order to identify and change current institutional rules that seem meaningless or unnecessarily rigid.

Establishing partnerships It is important to introduce and practice shared responsibility among patients, clinicians, and families. This is especially important in decisions that involve the direct participation of, and burdens on, the family. To be successful, such a partnership must at a minimum establish certain ground rules. Partnerships are not friendships, nor is the division of responsibility always equal. Partnerships should be dy- namic and responsive to changing needs and situations. In planning for hospital discharge, physicians should ensure that family members who take on significant home care responsibilities are provided with ongoing training, consul- tation, and practical as well as emotional support.

Communication Communication is probably the single most important aspect of working with patients and their families.69 Commu- nication involves active listening as well as talking, and also requires patience. Does the family understand the severity of the patient’s condition? How have they dealt with the diagnosis and prognosis? What are families’ expressed concerns? What questions lie just below the surface? How can mixed messages be avoided? How can information be con- veyed consistently and clearly? In one study of family members of patients without advance directives whose death followed a stay in the intensive care unit and withdrawal of treatment, families found it helpful when physicians and nurses encouraged advance planning, communicated with them in a timely way, clarified the family’s role, facilitated a family consensus, and accommodated the family’s grief. On the negative side, families felt excluded or more burdened when discussions about treatment withdrawal were post- poned, withdrawal was delayed once scheduled, one person was given the full burden of decision making, and when the physician withdrew from the family or defined the death as a failure.’O

Confidentiality and truth-telling present particularly thorny challenges to communication. Cases in which pro-

15

fessionals’ standards of confidentiality conflict with those of patients and families are not easy to resolve, but they can usually be negotiated to an acceptable compromise.

Along with learning communication skills, acquiring techniques to minimize conflict is essential.’l Often an angry confrontation or sullen indifference on the part of clinical staff leads to even more aggressive and unpleasant behavior by family members. Instilling courtesy and understanding, as well as tactful ways of responding to upset families, should be part of training all staff who have direct contact with patients and families.

Conclusion A system that saves or prolongs lives only to cast patients

and families into the abyss of fragmented chronic care and into financial and emotional ruin, while at the same time criticizing them for being “too emotional,” is unjust. Many families will make enormous sacrifices, but martyrdom is not a good basis for health care policy or practice. The patient’s care is jeopardized; the caregiver’s own health is at risk; professionals are frustrated; and the health care system is burdened by greater costs.

Our recommendations focus on human relationships, not technology. In our technology driven, efficiency ori- ented health care system, the simplest interventions are often the hardest to initiate. To implement these recommendations will require staff training at all levels-in some cases, retraining-and the most precious of resources: time. Lest this time be considered wasted, it is important to weigh against this investment the time already spent in fruitless and frustrating confrontations with aggrieved and uncooperative family members. A health care system that depends so heavily on the direct and indirect patient care and man- agement provided by family members should involve them as partners rather than define them as problems.

Acknowledgments A short version of this essay appeared as “The Trouble with Families: Toward an Ethics of Accommodation” in the An- nals ofZnternalMedicine 130 (January 18,1999):148-152.

Many individuals gave us advice and comments on various iterations of this essay: we particularly want to thank Phyllis Brooks, Nancy Neveloff Dubler, Alan Fleischman, David Gould, and Mark Siegler for their in- sights and direction.

References 1. M. Edson, Wit (New York: Faber and Faber, 1999): at

11. 2. “New York Hospitals,” New York Emes, Dec. 3 1, 1900,

at 12; quoted in D. Rosner, A Once Charitable Enterprise: Hospi-


16

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3. C. Zuckerman, EndofLife Care and Hospital Legal Coun- sel: Current Involvement and Opportunities for the Future. (New York: Milbank Memorial Fund and United Hospital Fund, 1999): at 8.

4. G. Galanti, Caring for Patients fiom Different Cultures: Case Studies from American Hospitals, 2nd Edition. (Philadel- phia: University of Pennsylvania Press, 1997): at 55.

5. L.M.Wright and M. Leahy, “Maximizing Time, Minimiz- ing Suffering,” Journal of Family Nursing (August 1999): 259- 74.

6. R.M. Veatch, “Medical Codes and Oaths: History,” En- cyclopedia of Bioethics, vol. 3 (995): at 1426.

7. See, for example, such major court cases addressing end of life care as Cmzan v. Director, 497 U.S. 261, 110 S.Ct. 2841 (1990); In re Conroy, 98 N.J., 486 A.2d 1209 (1985); and In re Quinfan, 70 N.J. 10, 355 A.2d 647 (1976); for seminal cases addressing informed consent, see, for example, Canterbury v. Spence 464 F.2d 772 (D.C. Cir. 1972) and Cobbs v. Grant, 104 Cal. Rptr. 505,502 E2d 1 (1972); for major treatises addressing patient autonomy in health care decision making see, for example, President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions. (Washington: U.S. Government Printing Office, 1982); A. Meisel, The Right To Die (New York: John Wiley & Sons, Inc, 1989 and subsequent cumulative supplements); for a major federal legislative initiative to support patient autonomy, see The Patient Self-Determination Act (OBRA 1990): The Omni- bus Budget Reconciliation Act of 1990, Pub. L. 101-508, § 4206,4751 (OBRA), 42 U.S.C. $1395 cc(0 & 42 U.S.C. 91396 a (a) (Supp. 1991).

8. W. Ruddick, “Family Wishes and Patient Autonomy,” Hustings Center Report, 10, no. 5 , (1980): 21-22. Ruddick‘s later works take a much more family-centered approach. See, for example, “Transforming Homes and Hospitals,” in Bringing the Hos- pital Home: Ethical and Social Implications of High-Tech Home Care, J.D. Arras, ed. (Baltimore: Johns Hopkins University Press,

9. The President’s Commission for the Study of Ethical Prob- lems in Medicine and Biomedical and Behavioral Research, Mak- ing Health Care Decisions (Washington, DC, 1983): 127.

1995): 166-79.

10. Id. at 128. 11. H.L. Nelson and J.L. Nelson, The Patient in the Family:

An Ethics ofMedicine and Families (New York: Routledge, 1995); D. Brock, “What Is the Moral Authority of Family Members to Act as Surrogates for Incompetent Patients?” The Milbank Quar- terly, 74 (1996): 599-618; J. Hardwig, “IsThere a Duty to Die?” Hastings Center Report, 27, no. 2 (1997): 3 4 4 2 ; J. Hardwig, “What About the Family?” Hustings Center Report, 20, no.2 (1990): 5-10; J. Blustein, “The Family in Medical Decisionmaking,” Hustings Center Report, 23, no. 3 (1993):. 6- 13; N.S. Jecker, “Being a Burden on Others,” ]ournu1 of Clinical Ethics, 4, no. 1 (1993):16-20.

12. E.J. Emanuel, The Ends of Human Life: Medical Ethics in a Liberal Polity (Cambridge: Harvard University Press, 1991): at 56-57, 89. Despite his critique of the family as a social institution, Emanuel dedicated his book to his parents, “a contribution toward fulfilling the Fifth Commandment.” He is also principal investigator of a recent study of terminal illness that documents the essential role of family. See note 21.

13. Zuckerman, supra note 3. 14. C. Levine, “AIDS and Changing Definitions of Family,”

in D. Nelkin, D.2 Willis, and S.V Parris, A Disease of Society:

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Cultural 6 Institutional Responses to AIDS (New York: Cam- bridge University Press, 1991): at 48.

15. R.E. Waltman, “Turn Patients’ Next-of-Kin into Partners, Not Adversaries,” Medical Economics, August 11, 1997: 81-92.

16. M.K. Marvel and EK. Morphew, “Levels of Family In- volvement by Resident and Attending Physicians,” Family Medi- cine, 25, no. 1 (1993): 26-30.

17. J. Rolland, Families, Illness, and Disability: An Integra- tive Treatment Model (New York: Basic Books, 1994); J.M. Levitt, “The Conceptualization and Assessment of Family Dynamics in Terminal Care,” The Hospice Journal, 2, no. 4 (1986): 1-18.

18. See, for example, G.B. Hickson, et. al., “Obstetricians’ Prior Malpractice Experience and Patients’ Satisfaction with Care,” JM, 272, no. 20 (1994): 1583-1587; H.B. Beckman, et. al., “The Doctor-Patient Relationship and Malpractice: Lessons from Plaintiff Depositions,” Archives oflnternal Medicine,l54 (1994):

19. C. Hoffman, D. Rice, and H. Sung, “Persons with Chronic Conditions: Their Prevalence and Costs,” JAM4, 276, no. 18

20. I? Arno, C. Levine, and M.M. Memmott, “The Economic Value of Informal Caregiving,” Health Affairs 18, no.2 (1999):

21. E. Emanuel et al., “Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Termi- nally 111 Patients,” N. Engl. J. Med. 341 (1999): 956-63.

22. U. Reinhardt, “Sending More through Cost Control: Our Obsessive Quest to Gut the Hospital,” Health Affairs, no. 15 (1996): 146-54; American Hospital Association, Hospital Statis- tics, 1999 Edition (Chicago, 1999), Table I, p. 3.

23. I? Arno, K. Bonuck, and R. Padgug, “The Economic Im- pact of High-Tech Home Care,” in Arras, ed., Bringing the Hospi- tal Home, supra note 8, at 222.

24. S. Gordon, “The Impact of Managed Care on Female Caregivers in the Hospital and Home,” Joural of the American Medical Womens’ Association, 52, no.2 (1997): 76.

25. Quoted in G. Anders, “Who Pays Cost of Cut-Rate Heart Care?” Wall Street Journal, October 15, 1996: at B10.

26. “More HMOs Order Outpatient Mastectomies,” Wall Street Journal, Marketplace feature, November 6, 1996, at B1.

27. M. FitzPatrick, letter in series, “Cruel Medical Care is Good for Business,” Wall Street Journal, November 27, 1996, at A1 1.

28. Institute of Medicine, Nursing Staffin Hospitals and Nurs- ing Homes: Is It Adequate? Washington DC: National Academy Press, 1996, as cited in S. Gordon, Life Support: Three Nurses on the Front Lines (New York: Little Brown, 1997): at 265.

1365-70.

(1996): 1473-79.

182-88.

29. Id. 30. L. Lagnado, “Patients Give Hospitals Poor Score Card,”

Wall Street Journal, January 28, 1997, at B1. 31. I! Doty, et al., “Informal Caregiving,” in C. Evashwick,

ed., The Continuum of Long-Term Care: An Integrated Systems Approach (Albany, Ny: Delman Publishers, 1995): 125-41.

32. U.S. Census Bureau, Survey of Income and Program Par- ticipation, August 1997; N. Marks, “Caregiving Across the Lifespan: National Prevalence and Predictions,” Family Relations, no. 45 (1996): 27-36; National Alliance for Caregiving, Family Caregiving in the U.S.: Findings from a National Survey, June 1997; National Long-Term Care Surveys 1982, 1984, and 1989, as cited in K.G. Manton, L.S. Corder, and E. Stallard, “Estimates of Change in Chronic Disability and Institutional Incidence and Prevalence Rates in the U.S. Elderly Population from the 1982, 1984, and 1989 National Long-Term Care Survey,” The]ournals of Gerontology, 48, no. 4, (1993): S153-Sl66.

33. R. Stone, G.L. Cafferata, and J. Stangl, “Caregivers of the Frail Elderly: A National Profile,” The Gerontologist, 27, no.5 (1987): 616-26.

34. Marks, supra note 32. 35. Hoffman, et al., supra note 19. 36. B.J. Haupt and A. Jones, “The National Home and Hos-

pice Care Survey: 1996 Summary,” National Center for Health Statistics, Series 13, no. 141 (1999): 22.

37. Vi! Astudillo, et al., “How Can Relations Be Improved Between the Family and the Support Team During the Care of Terminally I11 Patients?” Support Care for Cancer, 3 (1995): at 72.

38. I. Higginson, A. Wade, and M. McCarthy, “Palliative Care: Views of Patients and Their Families,” British Medical Journal, 30 (1990): at 277.

39. L.J. Kristjanson, et al., “Family Members’ Perceptions of Palliative Cancer Care: Predictors of Family Functioning and Fam- ily Members’ Health,”]ournal ofPalliative Care, 12, no. 4 (1996): at 20.

40. In another context R. Macklin objects: “There is something vaguely disturbing about the idea of ‘treating the family.’ The notion of ‘treatment’ is ambiguous. It can mean ‘the perfor- mance of therapy,’ but it also has a nonmedical sense, meaning ‘dealing with‘ or ‘behaving toward.’ [In a case involving a criti- cally ill infant who was unlikely to survive the surgery the mother wanted] she criticized the medical team because “‘treating the family’ had assumed as much importance as treating the patient.” R, Macklin, Mortal Choices: Ethical Dilemmas in Modern Medi- cine (Boston: Houghton Mifflin, 1987): at 132.

41. R. Charlton and E. Dolman, “Bereavement: A Protocol for Primary Care,” British Journal of General Practice, 45, no. 397 (1995): 427-30; H.G. Prigerson, A.J. Bierhals, S.V Kasl, et al., “Traumatic Grief as a Risk Factor for Mental and Physical Morbidity,” American lournal of Psychiatry, 154, no. 5 (1997):

42. R. Cohen-Almagor, “Patients’ Right to Die in Dignity and the Role of their Beloved People,” Annual Review of Law and Ethics, Band 4, 1996, Berlin: Duncker & Humblot. Cohen- Almagor considers three U.S. court cases. In the Spring case, involving a family’s request to discontinue dialysis for Earl Spring, who in the court’s words was “heavily sedated to restrain his hos- tile impulses, uncooperative toward his arduous maintenance program, insensible of his family and his situation,” Cohen-Almagor concludes that “we should be cautious of incidents in which the best interests of the patient’s beloved people come at the expense of the best interests of the patient.” Acknowledging that the Spring family (wife and son) was close-knit and loved Earl Spring and appealed to the court “to keep their own sanity, their own lives,” Cohen-Almagor, like several other commentators on this case, concluded that the patient’s interest in a longer life was strong enough to outweigh any other interests.

43. E. Goffman, Asylums: Essays on the Social Situation o f Mental Patients and Other Inmates (Garden City, NY Anchor Books, 1961): at 76.

44. J M. Carr and J. I? Fogarty, “Families at the Bedside: An Ethnographic Study of Vigilance,” Journal o f Family Practice, 48 no.6 (1999): 433-38.

45. W.B. Bonnel, “Not Gone and Not Forgotten: A Spouse’s Experience of Late-Stage Alzheimer’s Disease,” Journal of Psy- chosocial Nursing, 34, no. 8 (1996): 24-27.

46. N. Foner, “Relatives as Trouble,” in The Culture oflong- Term Care, by H.N. Henderson and M.D. Vesperi (Westport, CT: Bergin & Garvey, 1995): at 172.

47. R. Charon, “Let Me Give a Listen to Your Heart,” in S. Gordon, I! Benner, and N. Nodding, eds., Caregiving: Readings

61 6-23.

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in Knowledge, Practice, Ethics, and Politics (Philadelphia: Univer- sity of Pennsylvania Press, 1996): at 294.

48. Id. at 288-89. 49. B.G. Glaser and A.L. Strauss, Zime for Dying (Chicago,

Aldine Publishing Company, 1968): at 151. 50. D.J. Eichhorn, T.A. Meyers, T.G. Mitchell, and C. E.

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51. N.N. Dubler, “The Doctor-Proxy Relationship: The Ne- glected Connection,” Kennedy Institute of Ethics Journal, 5 , no.

52. R.A. Pearlman, R.F. Uhlmann, and N.S. Jecker, “Spousal Understanding of Patient Quality of Life: Implications for Surro- gate Decisions,” Journal of Clinical Ethics, 3, no. 2 (1992): 114- 21; A.B. Seckler, D.E. Meier, M. Mulvihill, and B.E. Cammer- Paris, “Substituted Judgment: How Accurate Are Proxy Predic- tions?”Annals ofIntemalMedicine, 115 (1991): 289-94; T. Tom- linson, K. Howe, M. Norman, and D. Rossmiller, “An Empirical Study of Proxy Consent for Elderly Persons,’’ The Gerontologist, 30 (1990): 54-61; R.F. Uhlmann, R. A. Pearlman, and K.C. Cain, “Physicians and Spouses’ Predictions of Elderly Patients’ Treat- ment Preferences,” Journal of Gerontology, 43 (1988): 115-21; N.R. Zweibel and C. K. Cassel, “Treatment Choices at the End of Life: A Comparison of Decisions by Older Patients and their Phy- sician-Selected Proxies,” The Gerontologist, 29 (1989): 615-21.

53. D.P Sulmasy, PB. Terry, C.S. Weisman, et al., “The Accu- racy of Substituted Judgment in Patients with Terminal Diagnoses,” Annals of Internal Medicine, 128, no.8 (1998): 621-29.

54. L.F. Post, J. Blustein, and N.N. Dubler, ‘‘Introduction: The Doctor-Proxy Relationship: An Untapped Resource,” Jour- nal of Law, Medicine 6 Ethics, 27 (1998): 5-12.

55. A.M. Capron, “Foreword,” in M.B. Zucker and H.D. Zucker, eds., Medical Futility and the Evaluation of Life-Sustain- ing Interventions (Cambridge: Cambridge University Press, 1997): ix-xii.

56. W Prip and A. Moretti, “Medical Futility: A Legal Per- spective,” in Zucker and Zucker, eds. supra note 54: 136-54.

57. A.Meise1, The Right to Die, 2nd ed., vol. 2 (New York: John Wiley & Sons, 1995).

58. S.C. Hines, J.J. Cover, J.L. Holley, et al., “Dialysis Pa- tients’ Preferences for Family-Based Advance Care Planning,” An- nals of Internal Medicine, 130 (1999): 825-28.

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59. Brock, supra note 11: 599-618.

60. Id. at 612. 61. I! Brophy, “Death with Dignity?” in Zucker and Zucker,

supra, note 54: 15-23. 62. See, for example, J. Groopman, “The Last Deal,” The

New Yorker, September 8, 1997: 62-74. In his account of treating a cancer patient after an aggressive experimental regimen has ended in a relapse, and the patient is clearly dying, Groopman orders emergency CAT scans to see if the cancer is encroaching on the spinal cord. He says that it would be terrible for the patient to die “paralyzed and incontinent.” While this may be a common view, many people with spinal cord injuries live long and produc- tive lives even though paralyzed and incontinent.

63. PA. Singer, D.K. Martin, and M. Kelner, “Quality End- of-Life Care: Patients’ Perspectives,”]AMA, 281 (1999): 163-68.

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65. B. Collopy, N.N. Dubler, and C. Zuckerman, “Toward an Ethic of Accommodation,” Hastings Center Report, 20, no. 2, (1990); A.E. I? Dill, “The Ethics of Discharge Planning for Older Adults: An Ethnographic Analysis,” Social Science and Medicine, 41, no. 9 (1995): 1289-99.

66. C. Levine, Rough Crossings: Family Caregivers’ Odysseys through the Health Care System (New York: United Hospital Fund, 1998).

67. J. A. Jacobson, L.P Francis, M.P Battin, et al., “Dialogue to Action: Lessons Learned from Some Family Members of De- ceased Patients at an Interactive Program in Seven Utah Hospi- tals,”]ournal ofcknicaf Ethics, 8, no. 4 (1997): 359-71.

68. J.E. Carillo, A.R. Green, and J.R. Betancourt, “Cross- Cultural Primary Care: Patient-Based Approach,” Annals of In- ternal Medicine, 130 (1999): 829-34.

69. ED. Duffy, “Dialogue: The Core Clinical Skill.” Annals of Internal Medicine, 128, no. 2: 13941.

70. KP Tilden, S.R Tolle, M.J. Garland, and C.A.Nelson, “Decisions about Life-Sustaining Treatment: Impact of Physicians’ Behavior on the Family,” Archives of Internal Medicine, 155,110.6

71. N.N. Dubler and L.J. Marcus, Mediating Bioethical Dis- putes: A Practical Guide (New York: United Hospital Fund, April 1994); A. Alpers and B. Lo, “Avoiding Family Feuds: Responding to Surrogate Demands for Life-Sustaining Interventions,”]oumal of law , Medicine &Ethics, 27, no. 1 (1999): 74-80.

(1995): 633-38.

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Hands On/Hands Off: Why Health Care Professionals Depend on Families but Keep Them at Arm's Length