Gastroenterol Clin N Am 35 (2006) 1–21

GASTROENTEROLOGY CLINICSOF NORTH AMERICA

Palliative Care: A PromisingPhilosophical Frameworkfor Gastroenterology

Geoffrey P. Dunn, MDDepartment of Surgery and Palliative Care Consultation Service, Hamot Medical Center,2050 South Shore Drive, Erie, PA 16505, USA

The decade of the 1990s witnessed the introduction of comprehensive andsystematic palliative care in hospital and outpatient settings in NorthAmerica. Palliative care is defined as interdisciplinary care that aims to re-

lieve suffering and improve the quality of life (QOL) for patients who have ad-vanced illness and their families. It can be offered as the sole aim of care orsimultaneously with all other medical treatment. The recognition for the needto this approach reflects a fundamental shift in priorities within the cultureof medicine. It was presaged by the widespread and growing popularity ofhome-based hospice care introduced in the mid 1970s. Public awareness ofend-of-life issues was further enhanced by judicial decisions that ruled on an in-dividual’s right to deny medical treatment [1], the debate on physician-assistedsuicide, and adverse experiences with end-of-life care [2] that contrasted sosharply with progress in other venues of medical care.

Despite this reversal of what seemed to be a conspiracy of silence aboutdeath and dying in a highly materialistic culture, ambivalence remains aboutthe role of palliative care in medical treatment. The length of stay in Medi-care-certified hospices averages approximately 20 days of a defined benefit pe-riod of 6 months, despite increasing acceptance by physicians and consistentlyfavorable experiences of patients and families [3]; and the notion of death asa natural and potentially positive experience in life’s trajectory is only hintedat in a recent policy statement by the National Cancer Institute (NCI), whosestated goal is ‘‘to eliminate suffering and death due to cancer by 2015’’ [4]. De-spite this, evidence is accumulating that what patients and their families want isconsistent with the primary aims of palliative care. In a study [5] of 475 familiesmembers within 2 years of a loss, concerns that mattered included honoring thedeceased’s wishes, assistance and support in the home, honesty and directnessin communication, continuous access to services, privacy, practical and

E-mail address: gpdunn1@earthlink.net

0889-8553/06/$ – see front matter ª 2006 Elsevier Inc. All rights reserved.doi:10.1016/j.gtc.2005.12.012 gastro.theclinics.com

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personal care assistance, and to be remembered through ongoing contact afterthe death. Despite the proliferation of palliative and hospice care programs, pa-tients still give eloquent testimony [6] about their fear of being abandoned bytheir treating physicians when their disease has progressed to the point at whichno further treatment can be given.

During this interval of 20 years, much has happened to establish palliativecare as a health philosophy that will enrich the practice of gastroenterology,and conversely, developments in gastroenterology have already improved pal-liative care. Several recent concepts from the field of gastroenterology such as‘‘the second brain’’ [7] and ‘‘intestinal failure’’ [8] fit well within the conceptualframework of palliative care. This type of synergy will ultimately encourage theapplication of this philosophy to a much broader spectrum of patients thanthose who are deemed to be at ‘‘end of life.’’ This broader spectrum of carecan be described as palliative gastroenterology.

HISTORIC BACKGROUNDThe term ‘‘palliative care,’’ introduced by Canadian surgeon Balfour Mount,comes from the Latin pallium, meaning ‘‘cloak’’ or ‘‘cover,’’ in the sense of usingone to restore dignity and comfort in a situation in which the underlying dis-ease process cannot be altered. Balfour used this description of the hospice con-cept when he introduced it to the Royal Victoria Hospital, an acute caremultispecialty hospital in Montreal. Mount can be credited as the salient pio-neer of hospice care in North America as well as being one of the first to bringhospice services into an acute care hospital.

The origins of palliative care as now understood in many countries aroundthe world are seen most clearly in the long and productive career of the late Dr.Cicely Saunders [9]. She is acknowledged generally as the founder of the mod-ern hospice movement [9] and mentor to many of the pioneers of palliativecare, such as Mount. Dr. Saunders was blessed with robust health, intelligence,a good education, and fate—all for which she more than paid thanks. Like somany notable contributors to the welfare of society, Saunders’ career path be-gan inauspiciously. She was born to a well to do family and studied politics,philosophy, and economics at Oxford University until World War II, whenshe felt called to care for the ill and wounded as a nurse. She competed trainingas a nurse, and after the war, she encountered her index patient, Tasma, a Pol-ish refugee who suffered from advanced malignancy. Her encounter with himtriggered her life-long work, which ultimately developed a framework of carethat now daily restores dignity and comfort to thousands of dying patients.

The clinical foundation of her work was her demonstration that terminally illpatients suffering from cancer pain enjoyed improved quality of life with sched-uled dosing of morphine. This foundation was based on careful observationsand meticulous record keeping during the late 1950s. Now, a half century later,this innovation is still percolating slowly through the medical system, despitethe documented efficacy and safety of the practice. It is the patients, families,and health care workers who harbor exaggerated or misplaced fears of

3PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

addiction and respiratory depression and a reluctance to acknowledge pro-gressing illness that account partially for this hesitant acceptance.

Saunders’ other seminal contributions to palliative care include her model of‘‘total pain’’ (discussed below) and the opening of St. Christopher’s Hospice in1967, which has served as an institutional model of patient care, teaching, andresearch. St. Christopher’s Hospice was the institutional expression of Saun-ders’ strong belief that the science of hospice and palliative medicine is matchedby the importance of psychologic and spiritual care. Her efforts led to the earlyassimilation of hospice care into the health care systems of Great Britain andIreland [10]. By 1987, palliative medicine had become recognized as a medicalspecialty by the Royal Academy of Medicine. To paraphrase her fellow coun-tryman, Winston Churchill, it would be hard to find another individual in thefield of medicine whose personal contributions have had so wide and profoundan impact on the care of so many.

By the end of the 1970s, hospice was rapidly establishing itself in the UnitedStates mostly as an outpatient-based service that offered an alternative to whatmany believed was an increasingly burdensome, overly medicalized, and insti-tutionalized way of dying. In 1982, the Tax Equity and Fiscal ResponsibilityAct established the Medicare Hospice Benefit (1983) less than 10 years afterthe establishment of the first hospice program in the United States. This legis-lative achievement was a response to popular pressure not an initiative fromany medical institution. The grass roots initiative and the lay appeal of hospicein its earlier days may have led to its isolation from mainstream medicine dur-ing the 1980s, a period in which there was scant reference to the concept inmedical textbooks or in medical school and residency training.

Only in the late 1990s, following the study to understand prognoses andpreferences for outcomes and risks of treatments (SUPPORT) in 1995 [2],the American Board of Internal Medicine’s publication Caring for the Dying in1996 [11], and the inauguration of the American Medical Association’s Educa-tion of Physicians on End-of-Life Care (EPEC) curriculum in 1999 [12], did theconcept of hospice and palliative care assume an established role across the con-tinuum of medicine in the United States. In 1996 the American Board of Inter-nal Medicine published its education resource document Caring for the Dying,specifically for the use of program directors and faculty of residency and sub-specialty training. In 1997, the Institute of Medicine issued its report ApproachingDeath: Improving Care at the End of Life [13]. This report concluded that sufferingfrom serious pain and other burdensome symptoms in many dying patients haspersisted despite the availability of effective treatments. A much-needed rem-edy for this state of affairs followed in 1999 with the inauguration of the Amer-ican Medical Association’s sponsorship of the Education for Physicians on Endof Life Care (EPEC) project funded by the Robert Wood Johnson Foundation.Since its initiation in 1999, EPEC has been used to train approximately 1000physicians, including surgeons, to become instructors of other physicians andallied health care workers on the principles and practices of compassionateand competent palliative and end-of-life care. During the late 1990s,

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philanthropic foundations funded a variety of initiatives that brought the con-cept of palliative care to the care of selected disease populations (eg, end-stagerenal disease [14]) and specializations (surgery [15]). The concepts of palliativecare are beginning to be taught in medical schools [16] and postgraduate cur-ricula [17]. The number of articles specifically addressing palliative care inthe general medical literature has increased markedly since the time of theSUPPORT in 1995.

Kathleen Foley [18], a neurologist and preeminent exponent of pain manage-ment and palliative care, observed, ‘‘It is innately human to comfort and pro-vide care to those suffering from cancer, particularly those close to death. Yetwhat seems self-evident at an individual, personal level has, by and large, notguided policy at the level of institutions in this country’’ [18]. Despite thisgloomy assessment, there are indications of change at the institutional level,one of which is reflected in a consensus report co-authored by Dr. Foley. In1999, a consensus on principles for guiding care at the end of life was endorsedby 17 medical organizations and specializations [19]. As of 2002, the AmericanBoard of Surgery identified palliative care as a domain of expected competencefor candidates seeking certification. The American College of Surgeons has is-sued two statements of principles on care at the end of life and palliative care[20,21], in addition to forming a task force for the palliative care education ofsurgeons [16].

BASIC PRINCIPLES AND MODELS OF SUFFERINGMuch of what is emerging in the practice and philosophy of palliative care hasbeen strongly influenced by several models of suffering, which is the immediatetarget of palliative treatment. Complicating this orientation is the belief in somecultures of the positive and redemptive value of suffering. Although the willing-ness and ability to relieve suffering comprise the initial orientation of palliativecaring, equally important affirmative qualities have been identified, such as therestoration and development of an individual’s social, psychologic, and spiri-tual function.

The recognition and relief of suffering are the primary aims of palliative care.Several models of suffering have influenced the philosophy and practice of pal-liative care. The foremost model was that of Victor Frankl [22], a concentrationcamp survivor who was a psychiatrist at the time of his captivity. His experi-ence in captivity led ultimately to the development of logotherapy, a form ofexistential analysis.

Frankl’s account of his experiences [22] bears witness that survival is relatedto the capacity to make sense of suffering, to give suffering a sense of meaning.This is the existential crisis that can be observed in one form or another in allpatients encountered in palliative care. Frankl’s belief describes a basic assump-tion of palliative care: that there must be a purpose to suffering and dying if onebelieves there is any purpose to existence itself and that choosing one’s attitudein these situations is one freedom that cannot be taken away under anycircumstances.

5PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

Frankl’s experience addressed the relationship between suffering and exis-tential issues. Since then, several models of suffering proposed by physicianshave made palliative care a more clinically specific construct. In the early1980s, anticipating the subsequent decades of social and legal debate about au-tonomy and relief of suffering at end-of-life, Cassell pointed out in a landmarkarticle that physicians tend to deconstruct suffering to its physical dimensionwhile ignoring the psychologic and spiritual pain that accompanies dying.This approach not only fails to relieve suffering but actually compounds it [23].

Cassell [24] defined suffering as arising from the threat to the integrity(wholeness) of the person. He pointed out that ‘‘bodies do not suffer, only per-sons do.’’ Persons are unique and experience disease differently. A person suf-fers when the intactness of his or her persona (integrity) is threatened. Theelements of an individual’s persona include the individual’s past, present,and future, social role, private life, and a transcendent (spiritual) dimension.It is the presence of the person’s transcendent dimension that permits the sep-aration of death from failure. In Cassell’s framework, suffering is not relieveduntil the threat to personhood has passed or is diminished.

The degree of suffering in Cassell’s and others’ model correlates with the de-gree of existential threat. According to these models, the intactness of person-hood, not the body, is the barometer of health. This conceptual frameworkresonates with the current popular interest in ‘‘holistic’’ health care and‘‘treating the whole person.’’ Although the public seems genuinely interestedin the holistic model of health care and supports a multimillion-dollar marketfor ‘‘alternative’’ medicine, the public also is an avid (and generally contented)consumer of health care organized according to the biophysical model. Mac-Donald [25] points out that the public never fully accepted the biophysicalmodel of cancer because to most nonphysicians of all cultures cancer has al-ways been regarded as an illness with social, psychologic, and spiritual conno-tations. The biophysical model addresses physical threats to well being or reliesheavily on derivatives of it, such as pharmacology to address nonphysical prob-lems. Shifting the goal of care from controlling disease to ameliorating sufferingwill inevitably present our society with the same task of introspection that hasbeen asked of physicians and surgeons, to allow them to see ‘‘the wholeperson.’’

Dame Cicely Saunders’ model of ‘‘total pain’’ [26] outlines four cardinal di-mensions of pain (physical, socioeconomic, psychologic, and spiritual) that con-tribute to suffering. Her theory brings a sharper clinical focus to Cassell’smodel of suffering by dissecting out specific areas in which threats to person-hood may lurk. It was more than coincidence that Saunders had previous pro-fessional experience as a nurse, social worker, and physician prior to herdescription of total pain. The models of Saunders and Cassell could be seenrespectively as the anatomy and physiology of palliative care. Brody [27] hasdescribed suffering as the anguish felt by the individual as his life, a uniquestory, is fragmented, preventing its completion and transformation into a tran-scendent legacy. As the end of life draws nearer, the greater is the potential

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anguish. The implication for the physician is that patients who have progres-sive, life-limiting illness may be more likely to seek guidance in fixing their‘‘broken stories’’ than fixing their broken bodies.

A more recent and positive conceptualization of suffering and end of life isByock’s [28] view that dying is a natural phase of life consisting of a seriesof developmental tasks (see Appendix), with abundant opportunity for reward-ing personal growth reminiscent of Erik H. Erikson’s [29] theory of develop-ment in which the individual grows as a result of resolving a series ofconflicts normally encountered in life. Byock’s four developmental tasks ofthe dying [28] include:

� Renew a sense of personhood and meaning� Bring closure to personal and community relationships� Bring closure to worldly affairs� Accept the finality of life and the transcendent

Byock’s framework was one of a number from this era that illustrates whatpreviously had seemed so counterintuitive; dying could be conceived as the lastphase of a succession of periods in life, each with its own characteristics ofhealth [28]. The wide spectrum of these developmental tasks suggests thatthe applicability of this model reaches much farther back in the trajectory ofan individual’s life than its very last phases. This is particularly importantfor those living with chronic illnesses punctuated by life-threatening exacerba-tions, which, if survived, can initiate an irreversible and prolonged decline.

PALLIATIVE CARE: OLD HUMANITIES AND NEW SCIENCEAll of the models of suffering suggest that a purely biophysical approach to itsrelief would be a much too limited construct, frustrating to the patient as well asthe clinician, unless the patient’s difficulty is an uncomplicated, reversible,physical problem such as a hemorrhoid or nonpathologic fracture. Is it a coin-cidence that the palliative model of care has arisen at the end of a century dur-ing which insights in theoretical physics of the first two decades subsequentlyfound their expression in the natural sciences and then the social and appliedsciences? As an analogy, Newtonian physics provided a workable scientificframework for almost all observable, everyday phenomena sufficient to landa man on the moon. However, the Newtonian framework was inadequate toexplain phenomena on a subatomic and galactic scale. The extremes of birthingand dying and the extremes of the deeply personal and the broadly social thatare encountered in the world of clinical medicine also demand a different guid-ance than the reductive, compartmentalized, and mechanistic approach thatmay, nonetheless, solve many problems in daily practice.

In addition to the social, psychologic, and spiritual arguments favoring pal-liative care, there are economic reasons to consider substituting a physicalmodel (disease-directed therapy) with a palliative model of care earlier thanin the last 2 months of life. In an increasingly aging population, 28% of allMedicare costs are incurred in the last 2 years of life, of which half is spent

7PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

during the last 2 months of life [30]. The SUPPORT study [2] yields abundantdata to show that seriously ill hospitalized patients in the last 6 months of life, inaddition to never getting better, were frequently undertreated for pain and theirpreferences for care were often unknown or even ignored. The average lengthof stay in hospice during this time was 48 days, during which a third diedwithin 7 days. The difference between the total Medicare expenditures duringthe last 2 years of life, the increasingly shorter stay in hospice, and the inci-dence of failed symptom control identified in SUPPORT paints a picturethat cries out for a model somewhere between traditional hospice care and cu-rative care.

The association of hospice with palliative care has stigmatized palliative carefor many health care professionals and laypersons who believe that palliativecare is simply a semantic twist on ‘‘hospice,’’ which they may already haveoversimplified as only ‘‘preparation for death.’’ In some cases, advocates forhospice care also have indulged in this oversimplification. Hospice care canbe classified as a subset of palliative care for patients in the last phases of ill-ness. The physical model of medicine practiced in our death-denying culturehas so equated physical death with failure that any acceptance of death asan appropriate outcome of care will be exceedingly difficult. Kass [31] summa-rizes the limitations of the biophysical model with the following counsel: ‘‘Ifmedicine takes aim at death prevention, rather than at health and relief of suf-fering, if it regards every death as premature, as a failure of today’s medicine—but avoidable by tomorrow’s—then it is tacitly asserting that its true goal isbodily immortality.. . .Physicians should try to keep their eyes on the mainbusiness, restoring and correcting what can be corrected and restored, alwaysacknowledging that death will and must come, that health is a mortal good,and that as embodied beings we are fragile beings that must stop sooner orlater, medicine or no medicine’’[31]. It will be some time before leading popu-lar magazines are ready to publish a list of the ‘‘100 Best Hospitals to Die In,’’despite the fact that the majority of individuals dying natural deaths do so inthe hospital setting!

A review of the historical evolution of hospice to palliative care demonstratesthat both of these philosophies, instead of narrowly focusing on the loss of life,have evolved as forms of social, psychologic, and spiritual health rehabilitationand growth that can occur in the face of ongoing physical decline. Doyle andcolleagues [32] summarize this by asserting that ‘‘palliative medicine is con-cerned with three things: the quality of life, the value of life, and the meaningof life.’’ Seen in this light, it is existence, not death, that is the focus of palliativecare.

DELIVERY MODELS OF PALLIATIVE CAREThere are currently two delivery models of palliative care in the United Statesmedical system: palliative care consultation and hospice services with or with-out the Medicare Hospice Benefit. Palliative care consultation in hospitals andoutpatient settings has became increasingly available since the late 1990s

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because of increasing interest in improved end-of-life care and the favorable im-pact on patient care made by hospice programs in this country since its intro-duction in the late 1970s.

Palliative care and hospice care share the following features: both provideactive total care of patients whose disease is not responsive to curative therapy.Their treatment goal is the best possible quality of life for the patient and familythrough the relief of pain and other distressing symptoms, the provision ofa support system to help patients live as actively as possible, and the provisionof support to the patient’s family during the illness and into bereavement. Pal-liative care can be given concurrently with all other appropriate medical care. Ahospice program provides palliative care for terminally ill patients and theirfamilies. All hospice programs are palliative care programs, but palliativecare is not limited to terminally ill patients.

A recent survey [33] has shown that in-hospital palliative care programs inthe United States have proliferated rapidly since 2000, numbering approxi-mately 1,027 (25% of hospitals) in 2003. These programs were defined bythe American Hospital Association in its annual survey as the provision of spe-cialized medical care, drugs, or therapies for the management of acute orchronic pain and the control of symptoms, which are administered by speciallytrained physicians and other clinicians, and support services, such as counsel-ing on advanced directives, spiritual care, and social services, to patients whohave advanced disease and their families. Palliative care programs meetingthis definition were more likely to be offered in larger hospitals, teaching andveterans hospitals, and hospitals designated as American College of Surgeons’Commission on Cancer-approved cancer hospitals. Hospitals owning theirown hospice programs and Catholic-affiliated hospitals were also more likelyto report having a palliative care program.

In some cases ‘‘palliative care’’ describes programs that specialize primarilyin pain management or ethics consultation but do not necessarily offer thefull continuum of specialty services (eg, bereavement counseling and pastoralcare) offered in Medicare-certified hospice programs.

Multiple reviews [34–38] have documented improved pain and nonpainsymptom management, improved patient and family satisfaction, reduced crit-ical care unit and hospital stay, decreased in-hospital deaths, and significant costreductions. Despite this record, many programs have relied heavily on philan-thropic donations, grants, cost sharing, and genuine volunteerism by medicallytrained and laypersons.

The criteria for palliative care referral can be generated automatically (ie,any patient staying in an intensive care setting over a defined period of timeand any patient with a Karnofsky status of less than 50) or by clinical judge-ment for any given patient (indications for palliative care consultation are listedin Box 1). Some hospitals have designated units for palliative care, whereasothers use a consultative model with or without a designated unit. A highrate of implementation of recommendations from palliative care teams hasbeen noted [39].

9PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

For any individual whose treatment is palliative and no longer life-prolong-ing, hospice referral from the hospital or outpatient setting should be consid-ered for any individual with a physician-certified prognosis of less than 6months if the disease pursues its usual course. Any terminal diagnosis is appro-priate (Box 2 lists primary hospice services). A common mistaken belief is thata do-not-resuscitate (DNR) order is required for enrollment into a hospice

Box 1: Indications for palliative care consultation

� Patient has an illness typified by progressive deterioration and worsening symp-toms, often ending fatally.

� Patient has limiting or threatening conditions with declining functional status ormental or cognitive function.

� Suboptimal control of pain or other distressing symptoms.� Patient and family would benefit from clarification of goals and plan of care or

resolution of ethical dilemmas.� Patient or surrogate declines further invasive or curative procedures, preferring

comfort-oriented symptom management only.� Patients on medical, surgical, or critical care units who are expected to die im-

minently or shortly following hospital discharge.� Bereavement support of hospital workers, particularly after the death of

a colleague.

Courtesy of Robert A. Milch, MD, Buffalo, NY.

Box 2: Primary hospice services

� Physical symptom control, such as pain, nausea, dyspnea, and other symptoms� HHA services, such as bathing, dressing, and feeding� Psychosocial counseling for patient and family� Spiritual support for patient and family� Completion of advance directives, wills, and funeral planning� Volunteers� Bereavement services� All drugs related to terminal illness� All durable medical equipment� Therapies such as occupational, physical, nutritional, musica, and massagea

� Other services as approved in plan of care: radiation, surgery, chemotherapya,TPNa, transfusiona, and intravenous hydrationa

aVaries per program.Courtesy of Robert A. Milch, MD, Buffalo, NY.

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program. A DNR requirement is forbidden by Medicare-certified programs be-cause of concerns about coercion and conflict of interest. The presence ofa DNR order has been used mistakenly as a marker for other preferences aboutend of life care [40]. As a practical matter, most patients or surrogates who havehad appropriate counseling prior to the election of hospice care are ready toauthorize a DNR order. Another inaccurate belief about hospice is the degreeof therapeutic nihilism exercised during hospice care, such as the refusal to ini-tiate intravenous (IV) therapy. No treatments are excluded automatically fromconsideration as long as the criterion for a treatment rests on its ability toachieve the symptom control, regardless of its impact on the underlying diseaseprocess. Depending on the resources and size of the hospice program, serviceswill vary and may include the options of IV and total parenteral nutrition(TPN) therapy, chemotherapeutic agents, transfusion, invasive proceduressuch as gastrointestinal tract stenting, video-assisted thoracoscopy, and openfixation of pathologic fractures. The Medicare-certified hospice team is man-dated to include a physician medical director, skilled nursing, a social worker,a pastoral care worker, home health aides, volunteers, and a bereavement pro-gram. Box 3 lists Medicare hospice benefits.

Although the gastroenterologist may not be in a position to make a referralto palliative care or hospice services, his or her interest and support for theseinterventions on behalf of a patient will be appreciated deeply by the patientand family, especially if the relationship has been a positive and trusting one.

QUALITY OF LIFE MEASUREMENT: THE NEW METRICOF SUCCESSIn any serious illness, questions relating to the impact of medical care on sur-vival and the nature of survival cannot avoid touching on the hopes, fears, andother existential considerations of the individual. These subjective elementsshape the individual’s evaluation of the QOL. Because of the importance of

Box 3: Medicare hospice benefit

� Patient elects hospice benefit for terminal illness, signs off Medicare A (hospital)� Primary physician may remain as primary, bills Part B for services� Consultants (eg, medical oncologist or surgeon) bill hospice directly� Patient is recertified as eligible for hospice at the beginning of each benefit

period� Benefit periods of 90 days (first benefit period)/90 days (second benefit

period)/60 days (each subsequent benefit period) indefinitely, with unlimitedlength of stay as long as the prognosis continues to meet the Medicare criterionof 6 months or less survival

� Patient may revoke hospice benefit at any time

Courtesy of Robert A. Milch, MD, Buffalo, NY.

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the patient’s perceptions in connecting the outer world intervention with theinner reality of the individual, the concepts of palliative care and QOL, al-though not synonymous, are inseparable. Strong arguments have been made[41] for the scientific reliability of QOL measurement that should reassure skep-tics in the medical community that QOL outcomes measurement does not rep-resent a ‘‘soft’’ standard but the ultimate challenge to scientific ability, insight,and compassion. QOL is the endpoint when measuring outcomes in palliativecare.

The twin goals of palliative care, symptom control and promotion of qualityof life, are not measured adequately by the traditional oncologic outcome mea-surements of mortality and morbidity. Because the patient report is the ‘‘goldstandard’’ for measuring the efficacy of palliative intervention, a new science ofQOL measurement with psychometric validation is developing rapidly to fillthis vacuum (see Rosenfeld elsewhere in this issue).

PALLIATIVE CARE AND GASTROENTEROLOGIC ILLNESS:A PERFECT MATCH?Considering the variety of chronic, life-limiting, and highly morbid illnesses en-countered in gastroenterologic practice, one wonders how gastroenterology‘‘slipped by’’ the effect palliative care has made on other specializations [42],which include neurology, nephrology, and surgery. Increased survival fromnongastrointestinal comorbidities such as congestive heart failure and dementiawill undoubtedly expand the pool of patients appropriate for palliative care pre-senting to the gastroenterologist.

Table 1 [43–51] contains a selection of disease or clinical scenarios likely tobe seen by a gastroenterologist, in which the application of the palliative caremodel would seem appropriate, although as yet untested. Many other entitiesthat are not necessarily imminently lethal (morbid obesity and irritable bowelsyndrome) could be added to the list as well.

In each of the diseases listed, the salient physical symptoms or distressingsigns (eg, bleeding) are listed as possible entry points for more global interven-tion. The success of total pain management is predicated on treating the mostcompelling symptom first, usually a physical one. The ultimate, more impor-tant existential issues related to closure, purpose in life, and connection beyondthe self are addressed more thoroughly if the immediate distractions of physicaldiscomfort are well controlled. Any of the symptoms listed can be seen as thefirst opportunity to begin the process during which the physician will help theindividual and family to hope for the best and plan for the worst.

WHERE DOES THE GASTROENTEROLOGIST FIT INTOTHE CONTINUUM OF PALLIATIVE CARE?The association of death with failure, culpability, or loss of control poses a po-tential psychologic barrier to the successful incorporation of a palliative philos-ophy into the clinical practice of gastroenterology, as it has for other medicaldisciplines. Other barriers to successful palliative care include denial or fear

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Table 1Selected clinical problems appropriate for palliative gastroenterology

Disease or syndrome Common GI tract symptoms Palliative care implications

Advanced GI cancer Anorexia/cachexia, bleeding,dysphagia, fistula, nausea,pain, vomiting

Interdisciplinary managementrequired for management ofmalignant GI tract obstruction(surgery, pharmacotherapy,stenting)

Total parenteral nutrition of noestablished benefit for improvedsurvival or quality of life inpatients with advancedgastrointestinal malignancy [43]

Counseling for limited prognosis,goal framing, and prospectivecare planning

Liver tumors, primaryand metastatic

Anorexia/cachexia, ascites,bleeding, fever, nausea,vomiting, pain

High symptom burden requiringinterdisciplinary management inthe setting of limited prognosisand often late in a previouslyexisting chronic illness (cirrhosis,previously diagnosednonhepatic malignancy)

Chemotherapy Altered liver function, bleeding,constipation, diarrhea, emesis,fatigue, nausea, neutropenicenterocolitis, pancreatitis (eg,vinca alkaloids), stomatitis

Nausea and vomiting are themost distressing side effects ofchemotherapy [44]

Poor symptom control anddiminished quality of life canadversely affect hope andcompliance with chemotherapyregimen resulting in decreasedsurvival [45]

Severe complications may requirediscontinuation of disease-directed therapy and considerhospice referral.

Neurologic andmyopathic disease

Aspiration, cachexia,constipation, diarrhea,dysphagia

Significant number of patientspredictably die from swallowingdysfunction as a result ofneurodegenerative diseases(amotrophic lateralizingsclerosis, Parkinson’s disease)and some forms of musculardystrophy, usually afterplacement of a gastrostomyfeeding tube.

Benefit of gastrostomy tubefeeding not established inpatients with advanceddementia [46]

13PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

Table 1(continued)

Disease or syndrome Common GI tract symptoms Palliative care implications

Chronic pancreatitis Diabetes, diarrhea, malnutrition,pain, weight loss

Complicated long-term painmanagement, often withopioids. Questions ofphysical dependence versustrue addiction and invasivepain management techniquesincluding surgery needto be addressed usingan interdisciplinaryapproach

High impact of illness onpsychosocial functioning,especially when related toalcoholism

Liver failure Ascites, bleeding, cachexia,encephalopathy, jaundice

Significant psychologic,socioeconomic, and spiritualdistress associated with causesof liver failure (ethanol abuse,IV drug abuse)

For Childs ‘‘C,’’ prognosis islimited to months,making hospice referral anoption

Good control of symptoms mayup-grade functional statusallowing more latitude fortherapies

Palliative care consultation mayfacilitate process of livertransplantation [47]

Intestinal failure Depression, diarrhea, fatigue,nutritional support,complications, weight loss

Scant literature in reported QOLoutcomes for patientseceiving home parenteralnutrition for malignant disease,one study for benign diseasereported loss of friends,employment, and depressionin 66% of families surveyed[48]

Multiple losses stemming fromloss of bowel autonomy: lossof normal eating patterns andindependence, fear of lossof socioeconomic status,loss of bowel functioncontrol.

(continued on next page)

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of death, lack of training in the techniques of communication and symptomcontrol, and, in some cases, indifference. Another potential barrier to the inclu-sion of a comprehensive philosophy of palliation in the framework of medicineis deeply rooted prejudice directed against the ‘‘soft’’ behavioral and social sci-ences (not to mention the humanities), which are deemed ‘‘less valid’’ than thephysical sciences. In the face of these barriers, it would represent a substantialleap for a gastroenterologist to accept palliation as an affirmative process ofameliorating suffering that takes an equal if not greater priority to the intentto cure.

Perhaps gastroenterologists can be inspired to accept the construct of pallia-tive care by the recent progress of their professional cousins, the surgeons! InOctober 2003, the American College of Surgeons’ Task Force on Professional-ism published the American College of Surgeons’ Code of Professional Conduct[52]. In its commentary, the Task Force wrote, "We singled out terminally illpatients as worthy of specific mention. Most surgeons are uncomfortablewith death; it is an outcome that might be equate with defeat. Many surgeonsare also uncomfortable with the transition from curative to palliative care. Ef-fective palliation at these difficult times obligates sensitive discussion with pa-tients and their families. Surgeons must accept a pivotal role in facilitatingthis therapeutic transition, for both patients and the healthcare team’’ [53].

Table 1(continued)

Disease or syndrome Common GI tract symptoms Palliative care implications

Inflammatory boweldisease

Anorexia, rectal bleeding,diarrhea, body image, fistula,growth retardation, malaise,malnutrition, nausea, surgicalcomplications, pain, vomiting,weight loss

QOL outcomes are increasinglymeasured in clinical trials

Patients frequently resort toalternative and unconventionaltherapies [49] and are morelikely to with increasingduration of disease [50]. Thiscan be a manifestation of lowlevel of trust or poor symptomcontrol.

Occasional patient will have theadditional burden ofIBD-associated malignancy.

Psychosocial impact of diseaseaffects health care utilization[51]

Interdisciplinary model ofpalliative care is patientcentered and specific, helpfulfor selecting among invasiveintervention alternatives.

Abbreviations: GI, gastrointestinal; IBD, inflammatory bowel disease.

15PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

Palliative gastroenterology, similar to surgical palliative care, is more a mat-ter of rediscovery or renaming much of the daily experience most gastroenterol-ogists have with patients suffering from advanced and critical illness than theassimilation of radically new concepts. The pragmatic temperament of those phy-sicians who perform procedures facilitates their endorsement of any new tech-nique or concept that effectively yields results, in this case, the relief ofsuffering. There is a wide spectrum of opportunity for the gastroenterologist toparticipate in palliative care, depending on his or her time, abilities, and degreeof interest. Deciding ‘‘how involved should I be in the palliative care of a patient?’’is a personal one, but at the very least the gastroenterologist should be aware ofthe indications for referral and be willing to facilitate referral to the appropriateindividuals or agencies in a timely and supportive manner. Years of faithful ser-vice by a physician can be quickly forgotten by a patient and family if there is foot-dragging by the physician about an appropriate hospice or palliative care referral.There are several levels of involvement in palliative care beyond the primarylevel of engagement expected of all physicians (Box 4).

EDUCATIONAL RESOURCESThe palliative care movement in the United States during the late 1990s andearly 2000s has been catalyzed by the availability of several well-designed andcontinuously updated Web sites, among which is the End of Life/PalliativeEducation Resource Center (EPERC) Web site (www.eperc.mcw.edu). Thepurpose of EPERC is to share educational resource material among the com-munity of health professional educators involved in palliative care education.The site offers ‘‘Fast Facts,’’ which consists of one-page peer-reviewed out-lines of key information on important end-of-life clinical topics for end-of-life educators and clinicians, down-loadable educational materials, suggestedarticles, and links to clinical and educational resource centers. The Centerfor Advance Palliative Care (CAPC) has a useful Web site (www.capc.org)for surgeons who may be involved in organizing hospital-based palliativecare programs. The CAPC, an initiative supported by the Robert WoodJohnson Foundation and assisted by the Mount Sinai School of Medicinein New York, provides health care professionals with the tools, training,and technical assistance necessary to start and sustain successful palliativecare programs in hospitals and other health care settings. Through its Website, the CAPC provides management training seminars, audio conferences,and other offerings, and a core curriculum for programs in planning andearly stages of development. The CAPC also provides information on palli-ative care to hospitals, clinicians, policymakers, payers, and researchers.Other Web sites and organizations of interest include the National Hospiceand Palliative Care Organization (www.nhpco.org), the Robert Wood John-son Office of Promoting Excellence in End-of-Life Care (www.promotingex-cellence.org), and the American Academy of Hospice and Palliative Medicine(www.aahpm.org).

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CERTIFICATION IN PALLIATIVE AND HOSPICE CAREFor gastroenterologists who wish to pursue palliative care in more depth, ei-ther as a primary focus of practice or as an adjunct to their primary special-ization, the option off pursuing certification by the American Board ofHospice and Palliative Medicine (ABHPM) has been available since 1996.Candidates are required to hold an American Board of Medical Specialties(ABMS)-approved primary Board Certification, certified status for at least 2years in a primary medical specialty, have had 2 years’ practice experiencebeyond residency or fellowship, 2 years’ experience of interdisciplinaryteam work with a hospice or palliative care program, physician and nonphy-sician professional references, and evidence of direct participation in the careof at least fifty terminally ill patients [54]. The ABHPM is not yet affiliatedwith the American Board of Medical Specialties, although an application tothe ABMS to recognize palliative medicine as a subspecialty has been sub-mitted by the American Board of Internal Medicine, and a decision regarding

Box 4: Levels of the gastroenterologist’s involvement in palliativecare

Level 1: the gastroenterologist

Is familiar with basic principles of palliative care as endorsed by specialty orga-nizations and examining boards and has met palliative and end-of-life care CMErequirements where mandated (eg, California).

Is competent in the management of acute and uncomplicated chronic pain, majornonpain symptoms, and the communication of bad news.

Can recognize the syndrome of imminent demise.

Refers appropriately to palliative care and hospice services.

Level 2 (level 1 plus. . .): the gastroenterologist

Participates in palliative care indirectly or directly by participation in ethics, pa-tient care, critical care, and pharmacy committees.

Promotes interest in palliative care by inviting grand rounds speakers, supportseducational initiatives, and supports palliative care consultants and services.

Level 3 (level 1 plus. . .): the gastroenterologist

Active or retired, participates in hospice or palliative care interdisciplinary teams,as either paid staff or a volunteer.

Is certified by the American Academy of Hospice and Palliative Medicine (orAmerican Board of Medical Specialties when available).

Level 4 (level 1 plus. . .): the gastroenterologist

Is active in the practice of gastroenterology, the primary focus of which is pallia-tive care education, research, or direct patient care (eg, palliative gastroenterol-ogy specialist).

17PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

the application will be made in September 2006. To date, approximately 1900physicians have been certified by the ABHPM, including specialists in familymedicine, geriatrics, radiation oncology, surgery, anesthesia, psychiatry, andgastroenterology, among others. If palliative medicine becomes an ABMS-accredited subspecialty, after the initial period of ‘‘grandfathering,’’ onlyindividuals who have completed an Accreditation Council for Graduate Med-ical Education-accredited fellowship in Hospice and Palliative Medicine willbe able to sit for the certifying examination. Currently, there are 17 ac-credited palliative medicine fellowships in the United States [55]. Informationabout the ABHPM and the status of ABMS specialty certification in hospiceand palliative care can be obtained at www.abhpm.org.

FUTURE OF PALLIATIVE GASTROENTEROLOGYThe future of palliative care research lies in the consensus of physicians andtheir leadership that the concept of palliative care is valid and essential to allpractitioners. The conversion of rapidly fatal illnesses to chronic illnesses inan already aging population should provide some impetus to the acceptanceof functional and QOL outcomes as equally valid as survival and disease-free intervals. The existing barriers to this acceptance are formidable and in-clude economic and political obstacles such as access to research funding.Only 0.9% of the 1999 NCI budget went to palliative and hospice care re-search [56], despite the fact that a significant number of those diagnosedwith cancer will succumb to it, still have it, or have permanent sequelae ofits treatment at the time of death. The concept of palliative gastroenterologyis still too new to identify research funding for nononcologic illnesses suchas inflammatory bowel disease or liver failure. Other barriers include theunique ethical concerns related to research in a highly vulnerable populationand little collaborative experience between gastroenterologists and palliativecare professionals.

SUMMARYMartin Adson, a surgeon, completes the Introduction to the book Liver Metas-tases: Biology, Diagnosis, and Treatment [57] with an eloquent moral charge to allphysicians and surgeons that summarizes the reason, the method, and the re-ward for the palliation of suffering caused by metastatic cancer. His words ap-ply to all other incurable conditions and those treating them:

‘‘The common denominators of all metastatic cancers are pain, fear, and lossand the common denominator of involved physicians is concern. Neither theseterrifying components of cancer nor the efforts of defenders can be measuredor controlled scientifically, but disregard of this reciprocal relationship by phy-sicians and surgeons is a denial of moral obligation. Abandonment in the con-text of medical practice is a form of spiritual malpractice. There is no specificformula for the relationship required when science is found wanting, but palli-ation of suffering of this kind must begin with acknowledgement. This

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involves. . .a capacity for affection and willingness to share one’s importanceand strength with the person whose importance is threatened by the cancerthat you have been trained to treat.’’

APPENDIX: FAST FACT CONCEPT NO. 084: SWALLOWSTUDIES, TUBE FEEDING, AND THE DEATH SPIRALa

The reflex by families and doctors to provide nutrition for the patient who can-not swallow is overwhelming. It is now common practice for such patients toundergo a swallowing evaluation and, if the patient ‘‘fails,’’ to move forwardwith feeding tube placement (nasogastric, jejeunogastric). Data suggest thatplacement of feeding tubes has an in-hospital mortality of 15%–25%, andone-year mortality of 60%. Not surprisingly, predictors of early mortalityinclude: high age, CNS [central nervous system] pathology (CVA [cardiovascu-lar accident], dementia), cancer, except early stage head/neck cancer, disorien-tation, and low albumin. The clinical scenario, the tube feeding death spiral,typically goes like this:

1. Hospital admission for complication of ‘‘brain failure’’ or other predictableend organ failure due to primary illnesses (eg, urosepsis in setting of ad-vanced dementia)

2. Inability to swallow and/or direct evidence of aspiration and/or weightloss with little oral intake

3. Swallowing evaluation followed by a recommendation for nonoral feedingdue to either aspiration or inadequate intake

4. Feeding tube placed leading to increasing ‘‘agitation’’ leading to patient-removal or dislodgement of feeding tube

5. Re-insertion of feeding tube; hand and/or chest restraints placed6. Aspiration pneumonia7. Intravenous antibiotics and pulse oximetry8. Repeat of [steps] 4 through 6 one or more times9. Family conference

10. Death

Note: at [the Web author’s] institution, the finding of a dying patient witha feeding tube, restraints and pulse oximetry, is known as Weissman’s triad.Suggestions include:

1. Recognize that the inability to maintain nutrition through the oral route, in thesetting of a chronic life-limiting illness and declining function, is usuallya marker of the dying process. Discuss this with families as a means toa larger discussion of overall end of life goals.

2. Ensure that your colleagues are aware of the key data and recommendationson tube feedings (see below; also see Fast Fact no. 10: Tube Feed or NotTube Feed).

aAdapted from Weissman, DE. Swallow studies, tube feeding and the death spiral. Fast Fact and Concept no.85. 2003. End-of-Life Physician Education Resource Center [Web site]. Available at: www.eperc.mcw.edu.;with permission.

19PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

3. Ensure there is true informed consent prior to feeding tube insertion; familiesmust be given alternatives (eg, hand feeding, comfort measures) along withdiscussion of goals and prognosis.

4. Assist families by providing information and a clear recommendation for oragainst the use of a feeding tube. Families who decide against feeding tubeplacement can be expected to second-guess their decision and will needcontinued team support.

5. If a feeding tube is placed, establish clear goals (eg, improved function) andestablish a timeline for re-evaluation to determine if goals are being met (typ-ically 2–4 weeks).

BibliographyFinucane TE, et al. Tube feeding in patients with advanced dementia. J Gen Int Med 1999;282:

1365–9.Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:

1421–4.Cowen ME, et al. Survival estimates for patients with abnormal swallowing studies. JGIM

1997;12:88–94.Rabeneck L, et al. Long term outcomes of patients receiving percutaneous endoscopic gastro-

stomy tubes. JGIM 1996;11:287–93.Grant MD, et al. Gastrostomy placement and mortality among hospitalized Medicare beneficia-

ries. JAMA 1998;279:1973–6.

References[1] Cruzan v Director, Missouri Department of Health, 497 DS 261 (1990).[2] The SUPPORT Clinical Investigators. A controlled trial to improve care for seriously ill hospi-

talized patients: the study to understand prognoses and preferences for outcomes and risksof treatments (SUPPORT). JAMA 1995;274(20):1591–8.

[3] NHPCO data. Available at: www.hhpco.org/files/public/facts_figures_for2004data.pdf.Accessed January 21, 2006.

[4] von Eschenbach AC. Realistic goal: end suffering, death from cancer by 2015. USATodayJanuary 21, 2004;A15

[5] Hickman SE, Tolle S, Tilden V, et al. The Oregon report card: improving care of the dying.1999. Available at: www.ohsu.edu/ethics. Accessed January 21, 2006.

[6] Brody JE. A doctor’s duty, when death is inevitable. The New York Times; section E: August10, 2004. p. 7.

[7] Gershon MD. The second brain. New York: Harper Collins; 1998.[8] Nightingale J, editor. Intestinal failure. London: Greenwich Medical Media; 2001.

p. xxix–xxxx.[9] Saxon W. Cicely Saunders dies at 87; reshaped end-of-life care. New York Times; section A:

August 4, 2005. p. 17.[10] Schonwetter RS, editor. Hospice and palliative medicine: core curriculum and review sylla-

bus. Dubuque (IA): Kendall/Hunt Publishing Company; 1999. p. 9.[11] American Board of Internal Medicine Committee on Evaluation of Clinical Competence:

Caring for the dying: identification and promotion of physician competency. Philadelphia:American Board of Internal Medicine; 1996 [educational resource document].

[12] Emmanuel LL, von Gunten CF, Ferris FD, editors. The EPEC curriculum: education for physi-cians on end -of-life care. The EPEC project. 1999. Available at: www.EPEC.net. AccessedDecember 22, 2005.

[13] Field MJ, Cassel CK, editors. Approaching death: improving care at the end of life: report bythe Committee on Care at the End of Life. Washington (DC): National Academy Press;1997.

20 DUNN

[14] Moss AH, Campbell B, Cohen LM, et al. End Stage renal disease workgroup. Available at:www.promotingexcellence.org/esrd/indexv2.html. Accessed December 22, 2005.

[15] Surgeons’ Palliative Care Workgroup. Report to the field. J Am Coll Surg 2003;197(4):661–86.

[16] Billings JA, Block S. Palliative care in undergraduate medical education: status report andfuture directions. JAMA 1997;278(9):233–8.

[17] Weissman DE, Mullan PB, Ambuel B, et al. End-of-life curriculum reform: outcomes and im-pact in a follow-up study of internal medicine residency programs. J Palliat Med 2002;5(4):497–506.

[18] Foley KM. Preface. In: Foley KM, Gelband H, editors. Improving palliative care for cancer-summary and recommendations. Washington (DC): National Academy Press; 2001. p. ix.

[19] Cassel C, Foley K. Principles for care at the end of life: an emerging consensus among thespecialties of medicine. Report sponsored by the Milbank Memorial Fund. December 1999.Available at: http://www.milbank.org. Accessed December 22, 2005.

[20] American College of Surgeons. Principles guiding care at end of life. Bull Am Coll Surg1998;83:46.

[21] American College of Surgeons. Principles of palliative care. Bull Am Coll Surg 2005;90(8):34–5.

[22] Frankl VE. Man’s search for meaning. New York: Washington Square Press; 1985.[23] Cassell EJ. The nature of suffering and the goals of medicine. New Engl J Med

1982;306(11):639–45.[24] Cassell EJ. The nature of suffering and the goals of medicine. New York: Oxford University

Press; 1991. p. 33–4.[25] MacDonald N. Palliative medicine and modern cancer care. In: Doyle D, Hanks G,

Cherny NI, et al, editors. Oxford textbook of palliative medicine. 3rd edition. Oxford(UK): Oxford University Press; 2004. p. 24.

[26] Saunders CM. The challenge of terminal care. In: Symington T, Carter RL, editors. Scientificfoundations of oncology. London: Heinemann; 1976. p. 673–9.

[27] Brody H. My story is broken; can you help me fix it? medical ethics and joint construction ofnarrative. Lit Med 1994;13(1):79–92.

[28] Byock IR. The nature of suffering and the nature of opportunity at the end of life. Clin GeriatrMed 1996;12(2):237–52.

[29] Erikson EH. Identity and the life cycle. New York: WW Norton & Co, Inc.; 1980.p. 1–187.

[30] National Hospice Organization. Hospice fact sheet. Arlington (VA): National Hospice Or-ganization; 2001.

[31] Kass LR. Ethical dilemmas in the care of the ill. What is the patient’s good? JAMA 1980;244:1947.

[32] Doyle D, Hanks G, Cherny NI, et al, editors. Introduction. In: Doyle D, Hanks G, Cherny NI,et al, editors. Oxford textbook of palliative medicine. 3rd edition. Oxford (UK): Oxford Uni-versity Press; 2004. p. 4.

[33] Morrison SR, Maroney-Galin C, Kralovec PD, et al. The growth of palliative care programsin United States hospitals. J Palliat Med 2005;8(6):1127–34.

[34] Morrison S, Meier DE. Palliative care. N Engl J Med 2004;350:2582–90.[35] Elsayem A, Swint K, Fisch M, et al. Palliative care inpatient service in a comprehensive can-

cer center: clinical and financial outcomes. J Clin Oncol 2004;22:2008–14.[36] Meier DE. Palliative care in hospitals: making the case. New York: Center to Advance Pal-

liative Care; 2002.[37] Higginson IJ, Finlay IG, Goodwin DM, et al. Do hospital-based palliative teams improve

care for patients or families at the end of life? J Pain Symptom Manage 2002;23:96–106.

[38] Campbell ML, Guzman JA. Impact of a proactive approach to improve end-of-life care ina medical ICU. Chest 2003;123:266–71.

21PALLIATIVE CARE: A FRAMEWORK FOR GASTROENTEROLOGY

[39] Manfredi PL, Morrison RS, Morris J, et al. Palliative care consultations: how do they impactthe care of hospitalized patients? J Pain Symptom Manage 2000;20(3):166–73.

[40] Beach MC, Morrison RS. The effect of do-not-resuscitate orders on physician decision-making. J Am Geriatr Soc 2002;50:2057–61.

[41] Koller M, Nies C, Lorenz W. Quality of life issues in palliative surgery. In: Dunn GP,Johnson AG, editors. Surgical palliative care. Oxford (UK): Oxford University Press;2004. p. 94–111.

[42] Robert Wood Johnson Foundation, Office of Promoting Excellence in End-of-Life Care. Avail-able at: http://www.promotingexcellence.org/esrd/indexv2.html. Accessed December22, 2005.

[43] Jeejeebhoy KN. Parenteral nutrition in gastrointestinal disease. In: Irvine EJ, Hunt RH, edi-tors. Evidence-based gastroenterology. Hamilton (Ont, Canada): BC Decker Inc.; 2001.p. 358.

[44] Coates A, Abraham S, Kaye SB, et al. On the receiving end: patient perception of the side-effects of cancer chemotherapy. European Journal of Cancer and Clinical Oncology1983;19:203–8.

[45] Fischbach W. Side-effects of chemotherapy on the gastrointestinal tract: symptoms, gradeand classification. In: Staritz M, Adler G, Schmiegel W, et al, editors. Proceedings of theFalk Workshop, Oct. 11, 2002: side-effects of cancer chemotherapy on the gastrointestinaltract: physiology, prophylaxis, and therapy. Dordrecht (Netherlands): Kluwer AcademicPublishers; 2003.

[46] Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a re-view of the evidence. JAMA 1999;282(14):1365–70.

[47] Molmenti EP, Dunn GP. Transplantation and palliative care: the convergence of two seem-ingly opposite realities. Surg Clin North Am 2005;85:373–82.

[48] Smith C. Quality of life in long term total parenteral nutrition patients and their family care-givers. JPEN J Parenter Enteral Nutr 1993;17:501–6.

[49] Hilsden RJ, Verhoef MJ. Complementary medicine use by patients with inflammatory boweldisease. Am J Gastroenterol 1998;93:697–701.

[50] Moser G, Tillinger W, Sachs G, et al. Relationship between the use of unconventional ther-apies and disease-related concerns: a study of patients with inflammatory bowel disease.J Psychosom Res 1996;4:318–23.

[51] Turnbull GK, Vallis TM. Quality of life in inflammatory bowel disease: the interaction of dis-ease with psychosocial function. Am J Gastroenterol 1995;90:1450–4.

[52] American College of Surgeons Task Force on Professionalism. Code of professional con-duct. J Am Coll Surg 2003;197(4):603–4.

[53] American College of Surgeons Task Force on Professionalism. Professionalism in surgery.J Am Coll Surg 2003;197(4):605–8.

[54] American Board of Hospice and Palliative Medicine. Certification Eligibility Requirements2006. Available at: www.abhpm.org/gfxc_13.aspx. Accessed January 22, 2006.

[55] American Board of Hospice and Palliative Medicine [Web site]. Available at: www.abhpm.org. Accessed December 20, 2005.

[56] Foley KM. Improving palliative care for cancer- summary and recommendations. Washing-ton (DC): National Academy Press; 2001 [pamphlet].

[57] Garen OJ, Geraghty JG, Nagorney DM. Liver metastases: biology, diagnosis, and treat-ment. London: Springer-Verlag, Ltd; 1998. p. 1–5.