he astings enter • access to hospice care: t expanding ......robert a. burt is alexander m. bickel...

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• Access to Hospice Care: Expanding Boundaries, Overcoming BarriersBy Bruce Jennings, True Tyndes, Carol D’Onofrio, andMary Ann Baily

A SPECIAL REPORT PUBLISHED WITH THE MARCH-APRIL2003 HASTINGS CENTER REPORT

This document looks at issues of social justice, access,and public policy in hospice and palliative care. As itexamines the issues from the perspectives of social jus-tice and fairness, it also recommends ways in which thedefinition of hospice can be expanded to include moreAmericans for a longer period of time than simply thedays or months shortly before death.

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On the cover:At Night, © Deidre Scherer 2000, from the series Surrounded by Family and Friends, 36 x 48 inches, fabric and thread Photo: Jeff Baird

The Hastings Center addresses fundamental ethical issuesin the areas of health, medicine, and the environment asthey affect individuals, communities, and societies. With asmall staff of senior researchers at the Center and drawingupon an internationally renowned group of over 100 electedFellows for their expertise, The Hastings Center pursuesinterdisciplinary research and education that includes boththeory and practice. Founded in 1969 by philosopher DanielCallahan and psychoanalyst Willard Gaylin, The HastingsCenter is the oldest independent, nonpartisan, interdiscipli-nary research institute of its kind in the world. From its ear-liest days The Hastings Center has understood that themoral problems arising from rapid advances in medicine andbiology are set within a broad intellectual and social context.The Center’s collaborations with policymakers, in the privateas well as the public sphere, assist them in analyzing the ethi-cal dimensions of their work.

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ABOUTTHE HASTINGS CENTER

A HASTINGS CENTERSPECIAL REPORT

WHY HAS IT BEEN SO DIFFICULT?

Adrienne Asch

Robert A. Burt

Daniel Callahan

Nancy Neveloff Dubler

Kathleen M. Foley

Bernard J. Hammes

Susan E. Hickman

Bruce Jennings

Sandra H. Johnson

Joanne Lynn

Alan Meisel

Alvin H. Moss

Thomas H. Murray

Susan W.Tolle

IMPROVINGEnd of Life Care

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Contributors

Edited by Bruce Jennings,Gregory E. Kaebnick, andThomas H. Murray

ILLUSTRATION CREDITS

Deidre Scherer's fabric and thread images on aging have appeared inmany exhibitions throughout the United States and the world. Sheis also the recipient of a Fine Arts Fellowship from the Open SocietyInstitute's Project on Death in America. For more information, visitwww.dscherer.com.

The Robert Pope Foundation was established in 1992 to continuethe significant work started by Robert Pope before his death fromcancer at age 35. A talented artist, he completed a large body ofwork showing the cancer experience from the patient’s perspective.Since his death, this collection of paintings has been shown in 91cities worldwide, including medical clinics such as the Mount SinaiMedical Clinic in New York and the Mayo Clinic in Rochester,Minn. The Robert Pope Foundation also promotes educational,artistic, and health-related programs. For more information, visitwww.robertpopefoundation.org.

�� Adrienne Asch is the newly-appointed Edward and Robin Milstein Professor ofBioethics of Yeshiva University-Wurzweiler School of Social Work. In addition to heryears of writing and teaching in bioethics at Wellesley College and Boston University,she brings policy experience through her work with the New Jersey Commission onLegal and Ethical Problems in the Delivery of Health Care, where she worked onissues of protecting vulnerable patients, determination of death, and health care deci-sion-making at the end of life.

�� Robert A. Burt is Alexander M. Bickel Professor of Law at Yale University. Herecently wrote Death Is That Man Taking Names: Intersections of American Medicine,Law, and Culture (University of California Press, 2002). From 1993 to 2003, he servedon the Advisory Board of the Project on Death in America, Open Society Institute, andfrom 1995 to 1997 was a member of the Institute of Medicine Committee on Careat the End of Life.

�� Daniel Callahan, Director of the International Program at The HastingsCenter, has worked with Center research projects on death since its beginning in1969. He is also the author of The Troubled Dream of Life: In Search of a PeacefulDeath (Georgetown, 2000; second edition).

�� Nancy Neveloff Dubler is the director of the Division of Bioethics,Department of Epidemiology and Population Health, Montefiore Medical Center, andprofessor of epidemiology and population health at the Albert Einstein College ofMedicine. She also directs the Bioethics Consultation Service at Montefiore MedicalCenter (founded in 1978) as a support for analysis of difficult clinical cases present-ing ethical issues in the health care setting, using mediation as its process. She iscodirector of the certificate program in bioethics and the medical humanities, conduct-ed jointly by Montefiore Medical Center/Albert Einstein College of Medicine withCardozo Law School of Yeshiva University. Her most recent book is Bioethics Mediation:A Guide to Shaping Shared Solutions, with Carol Liebman (United Hospital Fund,2004).

�� Kathleen M. Foley is an attending neurologist in the Pain and PalliativeCare Service at Memorial Sloan-Kettering Cancer Center. She teaches neurology, neuro-science, and clinical pharmacology at Weill Medical College of Cornell University andholds the Chair of the Society of Memorial Sloan-Kettering Cancer Center in PainResearch. As an expert consultant to the World Health Organization Cancer andPalliative Care Unit and as past director of a WHO Collaborating Center at MemorialSloan Kettering Cancer Center, she chaired three expert committees, resulting in thepublication of three WHO monographs: Cancer Pain Relief (1986), Cancer Pain Reliefand Palliative Care (1990) and Cancer Pain and Palliative Care in Children (1996).

�� Bernard Hammes serves as the director of medical humanities atGundersen Lutheran Medical Foundation and Medical Center. Dr. Hammes has publishednumerous articles on end of life planning, and several private foundations have fund-ed his work. He led the development of the advance care planning programRespecting Choices and is a member of the National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm Task Force.

�� Susan Hickman is on faculty at the School of Nursing and School ofMedicine at Oregon Health & Science University (OHSU), where she researches ethicalissues at the end of life and in the conduct of research. She is also a senior scholarin the OHSU Center for Ethics in Health Care. She is a consultant to the OregonPOLST Task Force and a serves on the National POLST Paradigm Task Force.

�� Bruce Jennings is senior research scholar at The Hastings Center and also

teaches at the Yale University School of Public Health. He served as associate directorof a project that produced the widely cited and influential Guidelines on theTermination of Life-Sustaining Treatment and the Care of the Dying (The HastingsCenter, 1987). He is also cofounder of Decisions Near the End of Life, an educationaland institutional change program on end of life care that has been used in over twohundred hospitals in thirty states. He has served on the boards of directors of boththe National Hospice and Palliative Care Organization and the Hospice and PalliativeCare Association of New York State and has written widely on ethical issues in end oflife, hospice, and palliative care.

�� Sandra H. Johnson holds the Tenet Endowed Chair in Health Care Law andEthics at the School of Law and the Center for Health Care Ethics at Saint LouisUniversity, as well as faculty appointments as professor of law in internal medicine atthe University’s School of Medicine and professor of health care administration at theSchool of Public Health. She directs the Mayday Project on Legal and RegulatoryIssues in Pain Relief at the American Society of Law, Medicine & Ethics and coau-thored Health Law – Cases, Materials and Problems (Thomson West, 1987; now in itsfifth ed.).

�� Joanne Lynn is a geriatrician and researcher who has focused upon seriouschronic illness and the end of life. She is senior natural scientist at the RANDCorporation in Arlington, VA.

�� Alan Meisel is professor of law, Dickie, McCamey & Chilcote Professor ofBioethics, and director of the Center for Bioethics and Health Law at the Universityof Pittsburgh. He served on the President’s Commission for the Study of Ethical Issuesin Medicine and Biomedical and Behavioral Research and participated in the author-ship of its report, Deciding to Forego Life-Sustaining Treatment. He is the principalauthor of the legal treatise, “The Right to Die: The Law of End-of-LifeDecisionmaking.”

�� Alvin Moss is a professor of medicine and the director of the Center forHealth Ethics and Law at the Robert C. Byrd Health Sciences Center of West VirginiaUniversity. He also serves as executive director of the West Virginia Center for End-of-Life Care which oversees the West Virginia POST (Physician Orders for Scope ofTreatment) Program. He has published numerous articles on end of life care—partic-ularly relating to dialysis patients—and has been awarded foundation grants to sup-port research and public outreach on end of life care. Dr. Moss is a member of theNational POLST Paradigm Task Force.

�� Thomas H. Murray is in his second tour of duty at The Hastings Center,this time as President (earlier, he was a research associate at the Center). He has alongstanding interest in how families face moral challenges. His most recent book isThe Cultures of Caregiving: Conflict and Common Ground among Families, HealthProfessionals, and Policy Makers (Johns Hopkins, 2004), edited with Carol Levine. Otherbooks include The Worth of a Child; Healthcare Ethics and Human Values (Universityof California, 1996); and the Encyclopedia of Ethical, Legal, and Policy Issues inBiotechnology (Wiley, 2000), edited with Maxwell J. Mehlman.

�� Susan Tolle is a professor of general internal medicine and geriatrics atOregon Health & Science University (OHSU) as well as cofounder and director of theUniversity’s Center for Ethics in Health Care and Cornelia Hayes Stevens Chair. Dr.Tolle has participated in two National Institutes of Health studies and has been prin-ciple investigator on thirty-nine foundation grants focused on end of life care, withcontinuous funding for two decades. She serves on the Oregon POLST Task Force andthe National POLST Paradigm Task Force.

Authors

Table of Contents

2Preface • Bruce Jennings

5Death:“The Distinguished Thing” • Daniel Callahan

9The End of Autonomy • Robert A. Burt

14Living Long in Fragile Health: The New Demographics Shape End of Life Care • Joanne Lynn

19Conflict and Consensus at the End of Life • Nancy Neveloff Dubler

26Hope for the Future: Achieving the Original Intent of Advance Directives

Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss, and Susan W. Tolle

31Recognizing Death while Affirming Life:

Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life? • Adrienne Asch

37Making Room for Dying: End of Life Care in Nursing Homes • Sandra H. Johnson

42The Past and Future of Palliative Care • Kathleen M. Foley

47The Role of Litigation in End of Life Care: A Reappraisal • Alan Meisel

52The Quest to Reform End of Life Care: Rethinking Assumptions and Setting New Directions

Thomas H. Murray and Bruce Jennings

58Selected References

60End of Life Care Resources

S2 November-December 2005/HASTINGS CENTER REPORT

Preface

A t the time of the Karen Ann Quinlan case in1975, the law and ethics of forgoing life-sustain-ing treatment were terra incognita. By 1990, theNancy Beth Cruzan case, the federal Patient Self-Deter-mination Act, and court rulings and statutes in all fiftystates had created a widely accepted framework for deci-sion-making near the end of life. Establishing this frame-work is one of the great accomplishments in bioethics.

Or so goes one common story. Expanded a little, thestory goes like this: Thirty years ago, awareness began togrow that the experience of dying (for the individual, forthe family, and often for health caregivers) was often ahorror. Sentiment began to grow behind a movement toimprove end of life care, and this reform movement wasbased on the belief that the horror of death was avoidablebecause it does not reside in dying or death per se, but ina poorly managed dying. What needed to be done, the re-formers saw, was to look death in the face and wrest con-trol over dying from doctors and hospitals, with theirpowerful but mindless drugs and machines—virtual loosecannons that could be as burdensome for some as theywere beneficial to others. If lack of control, the technolog-ical imperative, and unrelieved pain and suffering arewhat make dying fearful, then the key to improving endof life care is twofold: First, we should enlist the law toempower persons to dictate the terms of their own med-ical care at the end of life (via constitutional rights andlegally authorized advance directives). Second, we shouldenlist medicine to improve its skill at treating pain andsuffering (financing for hospice and professional educa-tion in palliative care). If we could do these two things(the reformers hoped and believed), ordinary people andtheir families—the intended beneficiaries of all thiswork—would embrace the reforms with open arms, insiston making their own medical decisions at life’s end, andcomplete advance directives. By 1990, although work re-mained to be done to bring this agenda to fruition, theagenda itself, at least, was settled.

This story is partly true, and some of the reformers’ vi-sion has been realized. Today people have much more

control of their medical care at the end of life, the tech-nological imperative has been bridled to some extent, andpalliative care is taken more seriously in the medical main-stream. Over 700,000 people who die each year receivehospice services for at least a short period of time beforedeath; and roughly three-quarters of all deaths in hospitalsnow come after some explicit decision has been made toforgo the use of some type of potentially life-prolongingintervention. Many people are fortunate enough to diewith pain kept to a minimum, surrounded by the peoplethey love, in a setting attentive to their spiritual, emotion-al, and physical needs. That is progress.

But while the story is partly true, it is altogether toofacile and simplistic. What progress has been made is nowin danger of being undone. The framework of principlesfor legitimate decision-making at the end of life built bythe courts, the legislatures, and in the professional andethical literature has not been embraced—indeed, it hasbeen rejected, at least in large part—by increasingly pow-erful and vocal minorities; and political support for thisframework, as well as its intellectual justification, seems tobe eroding. This is a critical problem. It points to flaws inboth our concepts and our institutions. Important as-sumptions—about autonomy, quality of life, trust, familydynamics, and the motivations of professionals andlaypeople—need to be rethought. Our systems of deci-sion-making and care delivery near the end of life need tobe redesigned.

The topic of end of life care came into its own duringthe 1990s. The decade began with the Cruzan case, theSupreme Court’s first landmark ruling on end of life care,in which the Court affirmed the constitutional right torefuse life-sustaining medical treatment. This was quicklyfollowed by passage of the federal Patient Self-Determina-tion Act, and of durable power of attorney for health carestatutes in many states, all stressing the importance ofconsidering each person’s preferences about end of lifecare in advance. Public education efforts to encourage theuse of advance directives sprang up nationwide.

In the mid-1990s, the Study to Understand Prognosesand Preferences for Outcomes and Risks of Treatments(SUPPORT) rigorously documented the alarming extentto which aggressive life-prolonging measures were still

Bruce Jennings, “Preface,’” Improving End of Life Care: Why Has It Been SoDifficult? Hastings Center Report Special Report 35, no. 6 (2005), S2-S4.

S3SPECIAL REPORT/ Improving End of Life Care: Why Has It Been So Difficult?

being used in situations where they were either medicallyfutile, unwanted by patients and families, or both. Evenconcerted efforts to improve communication betweenphysicians and dying patients did not stem the technolog-ical momentum of life-prolonging treatments in thecountry’s major medical centers. Moreover, a large pro-portion of families reported that the patient had spent thelast two or three days of life in severe, unrelieved pain. Aprecursor to this supplement, Dying Well in the Hospital:The Lessons of SUPPORT, which was published in theHastings Center Report exactly ten years ago, contains athorough discussion of this important research.

Growing fears of losing control of care at the end oflife, of becoming dependent on machines, of being anemotional and financial burden to one’s family, and ofsuffering due to inadequate treatment of pain and othersymptoms—all these fears and more led to a growinggrassroots movement in the late 1990s to legalize “physi-cian assisted suicide” (PAS), or what some prefer to call“physician aid in dying.” The situation was dramatized bythe public defiance of the law by Dr. Jack Kevorkian, thecontroversial Oregon referendum that legalized PAS inthat state, and the Federal Appeals Court rulings in theSecond and Ninth Circuits that temporarily struck downexisting state laws against PAS before the Supreme Courtoverturned those appellate rulings in 1997. But while itrefused to strike down existing state laws prohibiting PAS,the Court also decided not to interfere with the Oregonlaw permitting it, and it left the constitutional door opento other states to change their laws on PAS as they saw fit.Controversy over PAS in Oregon still continues, however,as federal officials in the Bush administration have soughtto undermine it through regulatory sanctions againstphysicians. Meanwhile, referenda to legalize PAS havefailed at the ballot box in some other states. Dr. Kevorkianis currently serving a prison sentence.

Even as these controversies monopolized most mediaattention, a less contentious but arguably more significantlong-term educational and institutional effort was underway, led by several groups seeking to improve end of lifecare and to address the concerns of the general public.Chief among them was hospice, which first appeared inthe United States in the 1970s but which became morewidely known and utilized in the 1990s. Efforts by hospi-tals and community groups to educate consumers con-cerning the use of advance directives also became wide-spread. Some educational programs have been aimed athealth care professionals, whose formal training had oftennot included death and dying or palliative care. Amongthese programs is “Decisions Near the End of Life,” creat-ed by the Education Development Center and The Hast-ings Center with support from the W.K. Kellogg Founda-tion and used by approximately two hundred hospitals inthirty states. Other educational programs focused on con-

sumers and communities were sponsored by groups suchas the American Association of Retired Persons and vari-ous state-based coalitions and consortia, including the so-called community health decisions groups.

The health care professions themselves have also paidgrowing attention to improving the standard of practicein pain management and palliative care. A landmark In-stitute of Medicine study, Approaching Death, proposedimprovements in the quality of palliative care. As the essayin this collection by Kathleen Foley reminds us, specialistsin this area have long argued that basic medical educationand general skill and knowledge within medicine are notsufficient to meet patient needs; pain has been systemati-cally and persistently undertreated in mainstream Ameri-can health care. New curricula for medical and nursingeducation have been developed and implemented; amajor educational program of the American Medical As-sociation, known as EPEC, trains physicians throughoutthe country in order to encourage better advance careplanning with patients and palliative care skills, and theAmerican Nurse’s Association offers a parallel programcalled ELNEC. Other more specialized educational pro-grams have followed suit, such as EPEC-O, sponsored bythe American Society of Clinical Oncology for oncolo-gists, and APPEAL, sponsored by the Institute to ImproveEnd of Life Care for African Americans. In addition, CorePrincipals of Palliative Care have been adopted by nine-teen national professional organizations to include in theirteaching programs. The Veterans’ Healthcare Administra-tion has developed palliative care teams and leaders, mak-ing palliative care integral into its health care system. Andthe Center to Advance Palliative Care, based at MountSinai Medical Center in New York City, provides consul-tation and support for health care facilities seeking to es-tablish palliative care consultation services throughout thecountry.

Finally, in the past fifteen years, many private founda-tions and grassroots groups have pressed for improve-ments in end of life care. Among the foundations notablefor their efforts on end of life care are the Open SocietyInstitute (through its Project on Death in America), theNathan Cummings Foundation, the Mayday Fund, theNational Hospice Foundation, the Hospice Foundationof America, and the Arthur Vining Davis Foundations, toname just a few. The Robert Wood Johnson Foundation,funder of the SUPPORT study, has been a leader in thiseffort. The Last Acts Partnership, a nationwide coalitionof groups working on many fronts during the 1990s, wascreated under its auspices, as was the successor to LastActs, an initiative called Caring Connections, organizedby the National Hospice and Palliative Care Organiza-tion. The Robert Wood Johnson Foundation also fundedseveral programs on innovative partnerships betweenproviders and community groups, and numerous state-


based initiatives to reform laws and regulations and to im-prove end of life care. At the grassroots level, new organi-zations have been formed, such as Americans for BetterCare of the Dying.

With all that has been accomplished, major challengesremain. The essays in this supplement explore the concep-tual and systemic flaws in end of life care reform since themid-1970s. They also offer suggestions about how tobridge the gap between, on the one hand, the legal andethical framework now widely but not universally em-braced, and, on the other, the real world of decision-mak-ing and care on the ground. Much of the conceptual reex-amination has to do with concerns about the concept ofautonomy, the dynamics of families, and the factors ofrace, class, and ethnicity (see the papers by Callahan, Burt,Dubler, Hickman and colleagues, and Meisel). Some ofthe papers consider possible systemic reforms that wouldlessen the weight placed on explicit, tragic individualtreatment decisions. One possible reform is to design sys-tems of care to satisfy the noncontroversial needs of peo-ple whose trajectories toward death follow one of the sev-eral well-known patterns (Lynn). Another is to developbetter continuity of care across a longer period of time be-fore death (Lynn, Foley). Essential to any further progressin end of life care reform is improved understanding andcommunication—between the hospice and palliative carecommunities and mainstream hospital-based medicine(Foley), between long-term care facilities and professionals

(Johnson), and between disability advocates and patient’srights advocates who now find themselves unnecessarily atodds over fundamental issues such as quality of life andthe adequacy of long-term care services (Asch). The con-cluding essay (Murray and Jennings) brings togethermany of the themes identified in the other papers and for-mulates lessons and recommendations that will help endof life care build on its successes while avoiding the repe-tition of past mistakes.

This supplement was made possible by funding fromthe Robert Wood Johnson Foundation, and we gratefullyacknowledge their support and their continuing leader-ship in improving end of life care for all Americans. Wealso appreciate the collegiality and cooperation of the au-thors who contributed to this collection and of the manypeople who worked with us to develop and produce thissupplement, including Michelle Larkin of the RobertWood Johnson Foundation, Nancy Reller and JaniceLynch Schuster of Sojourn Communications, and Hast-ings Center editorial staff Gregory Kaebnick, Nora Porter,and Joyce Griffin. Hastings Center staff members StacySanders and Ann Mellor also provided valuable assistance.In addition to the authors, several individuals attended anadvisory meeting to review the issues and to plan this sup-plement, including Christine Mitchell, Julis Landwirth,Jonathan Moser, David Tolle, Scott Long, and Todd Cote.

—Bruce Jennings


Death: “The Distinguished Thing”

b y D A N I E L C A L L A H A N

F aced with his imminent death, Henry James is re-ported to have said, “So it has come at last, thedistinguished thing.” Distinguished? That seemsan odd term to use, but James was a master at choosingthe right word, and he may have seen better than most ofus what death is all about. My dictionary defines “distin-guished” as “having an air of distinction, dignity, or emi-nence.” Yet there is dissent from that judgment. The latetheologian Paul Ramsey contended that there could beno death with dignity. Death is too profound a blow toour selfhood, to everything good about our existence.James or Ramsey?

For at least forty years now—Ramsey notwithstand-ing—a massive effort has been under way to bring aboutdeath with dignity. The leading techniques have been theuse of advance directives, hospice and palliative care, andimproved end of life education for physicians, nurses,and other health care workers. As the Hastings Center Re-port 1995 special supplement on the SUPPORT studyindicated, that effort achieved only a mixed success; adecade later, this report describes progress since then, butpoints to the long road for creating real and lasting im-provement.

There has always been some ambiguity in that effort.James and Ramsey, for instance, seem to be talking aboutthe meaning and place of death in human life, not aboutwhat kind of care is desirable at the end of life. Ramseywas no opponent of those efforts to improve end of lifecare. He objected to the sentimentalizing of death: even

the best end of life care could not sugarcoat death’s fun-damental offense. Was he right? Unless it is possible towork out some reasonably satisfactory answer to thatquestion, my guess is that the care of the dying will re-main seriously hamstrung. I sometimes get the impressionthat recent efforts to improve that care are managing,perhaps inadvertently, to evade dealing with death itself,focusing instead on palliative techniques and strategies.

I want to get at the core question here—that of theappropriate relationship between the care of the dyingand our stance toward death itself—by proposing somehistorical ways these two issues have either been blendedor separated.

My point of departure is the premodern era, mostplausibly described in the French historian PhilippeAriès’s fine 1977 book The Hour of Death. He detailed“the persistence of an attitude toward death that re-mained unchanged for thousands of years, an attitudethat expressed a naïve acceptance of destiny and nature.”He called that “the tame death” and showed how it wasaccompanied by practices at the end of life that stresseddeath’s public impact—the loss to the community of anindividual’s life, underscored by rituals of mourning thatmade the same point. How people died and the meaningof death were inextricably blended.

Though Ariès specified no particular time at whichthat long era ended, I believe it wound down in the1950s and 1960s. By then postwar medical progress,rapidly enriched with lifesaving drugs and technologies,was in full flower and eagerly embraced. Medicine couldfinally do something about death, and doctors werequick to take up the new arms in a new cause, that of ag-gressively fighting to save lives, now a plausible effort.

Daniel Callahan, “Death: ‘The Distinguished Thing,’” Improving End ofLife Care: Why Has It Been So Difficult? Hastings Center Report Special Re-port 35, no. 6 (2005), S5-S8.

No quarter was to be given. I recall in the 1960s arguingwith physicians, educated in the postwar years, who toldme that they had a moral duty to save life at all costs. Thequality of life, the actual prognosis, or the pain induced byzealous treatment were all but irrelevant. The technologicalimperative to use every possible means to save life was com-bined with the sanctity of life principle in what seemed theperfect marriage of medicine and morality.

Then came the backlash, beginning in the late 1960s.Often bitter complaints about useless but painful treat-ments, about abandonment at the end of life, and aboutdeath in a cocoon of tubes and monitors, began to turnthe tide.

These complaints led to reform efforts that focused onmeans to improve end of life care. What was left out ofthese efforts was a coming to grips with the meaning andplace of death. What Aries had called a “naïve acceptanceof destiny and nature” was put to one side—but nothing,seemingly, was put in its place.

That gap was soon filled. President Nixon in 1970 de-clared war on cancer and the National Institute of Healthwas soon on a roll. Gradually, almost imperceptibly, thereemerged what I think of as the great schism in medicine.On one side was palliative care, seeking to bring back intoclinical practice the relief of pain and suffering as one ofthe highest goals of medicine. That kind of care, as initial-ly understood, required that both doctor and patient ac-cept death as an unavoidable part of life. On the otherside was an ever-expansive medical research drive, thesworn and well-financed enemy of death and illness ofevery stripe. That research drive is the implacable foe of anold-fashioned, anachronistic fatalism which held, as fixedhuman wisdom, that many bodily miseries, but especiallydeath, just have to be endured. Death is now not to be ac-cepted, but eliminated.

There is no easy way to reconcile these two faces ofmedicine. The research push treats death as a contingent,accidental event that can be done away with, one diseaseat a time. Research advocates can hardly contain their en-thusiasm for the great possibilities that lie ahead. Thinkonly of the campaign for stem cell research, with itspromissory note of cures for heart disease, Alzheimer’s,Parkinson’s, diabetes—just about everything except ath-lete’s foot.

That kind of zeal spills over into clinical practice.Force-fed by research turned into technology and under-girded by medical education and clinical acculturation,good medicine saves lives. It does not give up. It refuses tonegotiate with death. Why should anyone accept, at leastin principle, a death that researchers believe will somedaybe cured—any more than AIDS should be toleratedwhen, someday, a vaccine will work? In the meantime, in-novative technologies can provide a few more days, weeks,

maybe months of life, than was possible even a few yearsago. Every physician has his miracle story. Go for it!

I once asked a visibly dying friend, someone who hadtaught medical ethics for thirty years, why he had agreedto one more round of chemotherapy for his recurrentpancreatic cancer, leaving his mouth so full of sores hecould speak only with great pain. “They talked me intoit,” he said. His oncologist probably talked himself into itas well. Death came quickly after that, the treatment use-less. But how else to proceed, the true believer might ask,to gain the progress that is possible? If that chemotherapytrial failed, the next one may succeed; or at least the oneafter that one.

But is there an inconsistency in helping someone diewell when death is on its way while simultaneously seek-ing a cure that will benefit future patients dying from thesame disease? There is no logical inconsistency, narrowlyunderstood, but there is a powerful psychological clash. Itpits the value of accepting death when a particular deathis unavoidable against rejecting death as a matter of prin-ciple for a research-ambitious medicine.

� � �

I t may well be that still another stage is beginning toappear. If the “naïve acceptance of destiny and na-ture” has been put to one side—for a time, with noother clear view of death to put in its place—such a viewmay now be coming into focus. It might be called the De-nial of Death II, to invoke Ernest Becker’s 1970s bookThe Denial of Death. By that phrase I mean not a refusalto look death in the face, to hide it away, which was Beck-er’s point, but to incrementally whittle away at its sup-posed inevitability, and to return to the treatment aggres-siveness of the 1950s and 1960s.

Part of this new stage is motivated by the research im-perative, which is steadily gaining ground, and part by acombination of other influences, each of them more in-cremental than decisive in nature but, taken together,strong in their aggregate force. Let me give some examplesof those influences, each of which drives a wedge betweenthe care of the dying and the place of death in life. My ev-idence is, on the whole, anecdotal, and the items I notemay not be all that telling; but this is what I see and hear.

The advanced edges of the palliative care movement, Ihave been told, have quietly been dropping the notionthat its patients must have accepted death if it is to suc-ceed in caring for them; it seems to be embracing a cau-tious neutrality on that point. At the same time, a newcompromise with death has been proposed in some terri-tory between acceptance and rejection: the teaming up,



for instance, of an oncologist and a palliative care special-ist to treat a terminally ill patient who teeters on the bor-derline between hope for life and acceptance of death.

Those (like myself ) who are ready to accept death asbiologically inevitable are being labeled either “mortalists”or “apologists.” Some of us have sunk pretty low, I sup-pose. In this climate, abetted by industry marketing andmedia hype of one breakthrough after another, should webe surprised that physicians complain about inflated pa-tient expectations, or that many patients or their familieswant aggressive treatment without limits when faced withdeath? Should we be surprised that some consider thedeath of Terri Schiavo, defined as simply disabled andthus not beyond the reach of medical care, as nothing lessthan murder? Religious conservatives and disability advo-cates often now team up to call into question the motivesof those seeking an acquiescence in death, attributing it tomoral insensitivity, to a denigration of those with dimin-ished capacities, or to a crude desire to cut costs by elimi-nating the expensively burdensome. They are adding anew instability to an already complicated situation.

I do not mean to suggest that end of life care is bur-dened simply by medicine’s profound ambivalence aboutdeath, intensified by a public that shares some of that am-bivalence. No doubt advance directives have never had theimpact hoped for because most people resist facing up totheir eventual death (even the preparation of ordinarywills is widely neglected). Education and publicity canmake a dent in the otherwise poor figures (less than 25percent have advance directives by most accounts), butthe fact that most deaths are not seen up close and occurfor the most part in old age does not push the reality ofdeath in one’s face the way it once did. If you don’t wantto think about it, there are lots of ways to look in other di-rections.

No less important, it seems, is what I call the multiplevariable problem. Just as health care reform in the UnitedStates is stymied by a large number of competing interestsand a plethora of subversive variables, end of life care hasits own excess of variables. Even with the best will in theworld and advance directives (or surrogates) in place,much can go wrong: disagreements between doctor andpatient, doctor and doctor, family and patient, family and

doctor, hospital and medical cultures (some favorable andsome cool to advance directives), and so on.

The Schiavo case illustrates the point. Had she or hadshe not clearly stated her desires? Who had her best inter-ests at heart, her husband or her parents? Even if recoverywas unlikely was it at least possible, and might some fur-ther treatments have made a difference? We all have ouranswers to those questions, but the point is that it was nothard to pick a fight. There are many cases that do not riseto the sad and unseemly level of the Schiavo fight. Manypeople will conclude that it is vitally important to haveclear advance directives or a dependable surrogate, whileothers, unwisely and unhappily, seem to have concludedthat there is some kind of plot afoot to do in patients in apersistent vegetative state or with other disabilities. Thereis no such plot (though surely some insensitivity here andthere), but advance directives do not guarantee you willget what you want, only that they may increase the likeli-hood you will.

� � �

T he question left hanging is: How should medicineand its practitioners think about death and locateit in the human life cycle? There is no doubt thatthe nature of dying has changed and no less doubt thatmedicine has been encouraged to grab death by the throatand not to let go—even as our biology one way or anoth-er continues to conspire to bring us down. I believe PaulRamsey was profoundly wrong in holding that there canbe no death with dignity. The weakest sense of dignity inthe context of dying focuses on the loss of control, that oflife’s trajectory leading irreversibly downhill, the bodyfalling apart, marked by incontinence, pain, humiliation,dependence upon others for our very existence. One ceas-es to be the person one once was and wanted to be, witha new physical (if not necessarily psychological) identitytaking its place, not one to be admired or to be proud of.

I call that “dignity” in the weak sense, not becausephysical identity is unimportant but because, as many sur-vivors of genocide, starvation, death camps, and severedisability have shown, there is more to a human life than

Forces on the scientific side that treat death as the great enemy, not to

be tolerated, and on the ideological side, seeing snares and

delusions in end of life care, are creating new obstacles to caring for

the dying. If we are not careful, we could reverse the progress made to

improve end of life care thus far.


the state of the body. The serious sense of a loss of digni-ty I understand to be the supposed ultimate insult thatdeath brings to life, which was what Ramsey had in mind:I live, therefore I am.

I have never understood why someone should feel thatway. Surely from the viewpoint of species welfare, death isno evil. It is a condition of constant species renewal(though I grant that species vitality does not do much forme as an individual). But death does not seem to me to bean evil if it comes at the end of a long life, one marked bya completion, or near it, of those aims that mark a fulllife. It is no accident that weeping is ordinarily absent atthe funeral of an elderly person. Almost all of us know oldpeople who, while still enjoying life, profess themselvesready to die and seem to mean it. It is hard to see indig-nity in a death marked by that acceptance. Of coursethere are many others, not yet old, not yet with a full lifebehind them, who will be ambivalent, and some will notwant to give up, at least not at once. Advance directivescan have an important place for them; and when they areready to go, palliative care will usually be needed. Onecan only hope they will die in the hands of physicians andnurses who will understand their plight and their needs.

Considerable progress has been made during the pastthree decades in improving the care of the dying. Butthere remain some old obstacles, familiar from the start,and some that are not many years old. Physicians unwill-ing to give up and indifferent to patient desires are stillwith us, just as soon-to-be patients resistant to advance di-rectives are still with us. There is unfinished work here tobe done. Forces on the scientific side that treat death asthe great enemy, not to be tolerated, and on the ideologi-cal side, seeing snares and delusions in end of life care,create the new obstacles.

How our society responds to those two forces willmake a great deal of difference; if we are not careful, wecould reverse the progress made to improve end of lifecare thus far. In the end, we die, and it is not an evil thatour biology has made it so. We can and will argue aboutthe timing and the details, about acceptable and unac-ceptable deaths. That is right and proper. Difficult deci-sions will never run out. But if we hedge our bets aboutthe inevitability of death, waffling and dreaming—a freshscience-driven embrace of the denial of death—then weare likely to face worse lives and, when it comes, worsedeaths.


A ttention to end of life care in contemporarybioethics took its initial impetus from the NewJersey Supreme Court’s Karen Quinlan decisionin 1976, and from this very beginning, there has been adisconnect between theory and reality. In authorizingventilator removal from Ms. Quinlan, who was in a per-sistent vegetative state, the court relied on the principleof respect for autonomous choice. It gave no weight tothe wishes of Quinlan’s parents or her physicians; theonly person with any legally recognizable claim was Ms.Quinlan herself. But she was in no position to make anydecisions about continued use of the respirator. Beforethe incident that left her in a persistent vegetative state,she had never expressed any wishes about how she shouldbe cared for if she became ventilator-dependent, and af-terwards she was incompetent and had no prospect ofever regaining competence.

The court quickly bypassed the central problem in ap-plying the autonomy ideal to her by positing that if shehad been competent, she would have had a right tochoose withdrawal, that she should not lose this right“merely” because she was now incompetent, and that herfather could exercise this right for her, so long as he actedon the basis of what he believed to be her wishes ratherthan on his own view of her best interests. From its mod-ern origins in the Quinlan case, then, the autonomyframework for conceptualizing end of life decision-mak-ing has had a distinctly artificial cast of mind. It is onlythirty years after Quinlan, however, that we can nowclearly see what should have been evident from the be-

ginning: the autonomy framework in the context of endof life decision-making simply doesn’t fit the facts.

This is not to deny that protecting patient autonomyin end of life care, as in all medical treatment and re-search, is an important principle. Nor is it to deny thatdisregard for patient choice has been a longstanding andunjustifiable feature of medical treatment and research.But the facts are that applying the autonomy frameworkin end of life decision-making has had little practical ef-fect and much fictitious posturing. Efforts to persuadepeople to create and implement advance directives toprotect their autonomy if they should become incompe-tent have essentially failed. The fictive character of thesedirectives is revealed with special clarity in the laws ofsome thirty-nine states providing that where an incom-petent person has not specified a health care proxy in ad-vance, the state will make that choice itself on thepremise that most people would want what the statewants for them—that is, spouse first, adult children sec-ond, and so forth.

The explanation for the failure of the advance direc-tive movement emerged with considerable force in theearly 1990s, with the empirical findings of the Study toUnderstand Prognoses and Preferences for Outcomesand Risks of Treatments (SUPPORT). This study testedthe most extensive, rigorous effort that had ever beentried to assist terminally and critically ill patients andtheir families in making informed choices about end oflife care. Notwithstanding the magnitude of this efforttoward promoting choice, it produced no effective re-sults. The SUPPORT data instead revealed—in findingsthat have been subsequently confirmed in other set-tings—that most patients and their families did not wantto make decisions about their end of life care. Though

The End of Autonomy

b y R O B E RT A . B U RT

Robert A. Burt, “The End of Autonomy,” Improving End of Life Care: WhyHas It Been So Difficult? Hastings Center Report Special Report 35, no. 6(2005): S9-S13.


most patients in the study were persuaded to fill out ad-vance directives, a substantial portion of these patientsand their families ignored their prior directives as deathdrew near. They simply did not want to talk about the re-ality that they were facing death; and most medical pro-fessionals returned the favor with equal reluctance to talkabout dying.

Two Responses

There are two ways to respond to this consistently con-firmed reality. One way—the dominant way for thepast thirty years—has been to redouble efforts to promotepatient and family choice-making. The second is to turnour attention away from the autonomous choice frame-work in thinking about end of life decision-making. Ithink we would be best advised to take this second way—not to override autonomous choice, but to remove thisvalue from the center of attention and to recast our think-ing about end of life care to promote different, thoughnot necessarily inconsistent, goals.

One lesson I draw from our failed efforts to promoteindividual end of life care choice-making is that this pur-suit, besides having limited potential for practical effect inindividual lives and deaths, also carries substantial socialdangers: it is likely to yield abuses as bad as, and even di-rectly similar to, the abuses of physician authoritarianismthat the autonomy framework was intended to correct.The crucial impetus for the modern embrace of the au-tonomy framework for terminally ill patients was mistrustof physicians, based on a belief that they regularly disre-garded the wishes and interests of their dying patients bypursuing aggressive, painful therapies with no realisticpossibility of success, by withholding effective pain reliefgenerally, and by abandoning their patients when deathbecame patently unavoidable. The equivalent dangers inthe autonomy framework arise from the practical reluc-tance of most people to exercise choice.

People are reluctant to exercise choice in end of lifematters because of cognitive difficulties that inescapablyafflict everyone in contemplating the reality of death. Pro-ponents of the autonomy framework during the past thir-ty years have not ignored these difficulties; instead, theyhave inveighed against them. According to their preach-ing, we should end our “denial of death” and view itrather as a “natural part of life,” to be accepted in the sameway that we accept any inevitable biological given (assome say death once was seen in some prior golden age ormay still be seen in some other contemporary culture).

But we avoid acknowledging this biological inevitabil-ity not simply from fear of death but from a cognitivedrag on our ability to comprehend death. We may parrotthe language of rational choice in comparing our fearsabout death with our fears about continued life in the face

of illness or disability, and we may enact a convincing ap-pearance of autonomous choice in contemplating death.But it is very difficult, at the core of our thinking, to con-vince ourselves that death is rationally comprehensible.Death is more than a future condition with uncertainbenefits and detriments. It is more than the absence oflife. It is the absence, the intrinsic contradiction, of mean-ingfulness. The very concept of the choice-making self,the construct on which the autonomy principle dependsfor its coherence, is radically unsettled—even made in-comprehensible—by the actual, imminent approach ofdeath.

A more conventional view is that some people may beafflicted with this inability to comprehend death, butsome—perhaps many or even most—are not, and thetask in applying the autonomy principle is to deviseguidelines for distinguishing those who are and those whoare not “competent” to exercise rational choice. But thedifficulties in drawing this distinction are so profoundand the consequences of our inevitable failure so gravethat we should not put this differentiating enterprise atthe center of our practices about end of life care.

The most convincing explanation for the medicalabuses inflicted by the health care system on dying pa-tients is physicians’ and others’ sense of the “wrongness” ofdeath. The incomprehensibility of death readily translatesinto a conviction that death is a kind of grammaticalerror, a misfit in a world that can be rationally compre-hended. In the medical lexicon, death is understood as anerror to be corrected, opposed, negated. Displacing clini-cians and blaming their commitment to rational masteryover death does not, however, cure the problem posed bydeath’s incomprehensibility. Death’s status as a grammati-cal error leads not only to medical triumphalism and theabuse of dying patients, but also to a conviction thatdeath is “wrong” morally. Even if one can comprehend,intellectually, that some things are worse than death andthat morally condemning a biological inevitability is non-sensical, nonetheless a persistent undertow pulls continu-ously in the opposite direction. This moral ambivalencetoward death might be consciously denied. And somepeople may be more capable than others of rigidly main-taining this denial into the maw of death itself. But formost people, successful resistance to this moralized under-standing is akin to success in refusing to think about ele-phants in response to a command that you must not—whatever you do, you must not—think about elephants.

The consequences of thinking forbidden thoughtsabout the moral wrongness of death are fraught with dan-ger. If death is a moral wrong and you cannot avoiddying—indeed, if you actively embrace dying—then itfollows that somebody must be punished for wrongdoing.Physicians could, of course, punish their dying patientsfor this transgression, and when they held a central


choice-making role, they did. But though they are now re-moved from that role, the impulse to blame has not van-ished; it has simply changed structure. As the choice be-longs to the individual, the punishment will be individu-ally self-inflicted. The precise content of this punishmentvaries—perhaps patients’ insistence on aggressive andpainful, though patently futile treatments, perhaps theirrefusal to request effective pain relief, perhaps their em-brace of premature death. But in all such cases, the abusepreviously inflicted by physicians on dying patients willreappear, for the same underlying reasons, as abuse inflict-ed by dying patients on themselves. The ironic conse-quence of the autonomy principle—that decisions aboutdeath are the legitimate prerogative of no one but thedying person—is that blame, too, will attach only to thedying person, and will be attached by the dying person tohimself.

The abuse of dying patients—either self-inflicted or ia-trogenic—is not inevitable, however. It is only ambiva-lence about death—some lurking, ineradicable sense of itswrongfulness, juxtaposed against all rational argumentsfor its inevitability and even preferability—that is in-evitable. The impetus for turning this ambivalence towardabuse is denial—not “denial of death,” in the convention-al sense of that cultural construct, but denial of thewrongness of death. Death’s wrongness, like the expresslyforbidden thought of an elephant, cannot be entirely re-pressed; and if it is banished from consciousness by a sin-gle-minded insistence that death is “good” or “dignified”or “accepted,” the unconsciously buried sense of wrong-ness and guilt accompanying death will push toward ex-pression in action. This is the dynamic by which an unac-knowledged sense of wrongdoing and guilt expresses itselfby wrongful action that implicitly invites condemnation,even as the action is explicitly enshrined in protestationsof righteous conduct.

Countervailing Schemes

The challenge for social regulation of end of life care isto identify the circumstances in which this maligndynamic is likely to take hold and to design countervail-ing schemes. Reliance on patient autonomy is not an ef-fective countervailing scheme, any more than the now-discredited reliance on physician autonomy for decidingwhether and when death should occur.

The following three proposals respond to this problem:

(1) No one should be socially authorized to engage inconduct that directly, purposefully, and unambiguouslyinflicts death, whether on another person or on oneself.

(2) Decisions that indirectly lead to death should beacted upon only after a consensus is reached amongmany people. No single individual should be sociallyauthorized to exercise exclusive control over decisionsthat might lead to death, whether that individual is thedying person, the attending physician, or a family mem-ber acting as health care proxy.

(3) As much as possible, end of life care should not de-pend on explicit decisions made at the bedside of a spe-cific dying person but rather should be implicitly dictat-ed by systems-wide decisions about available resources,personnel, and institutional settings—that is, by settingup default pathways that implicitly guide and even con-trol caretaking decisions in individual cases.

The rationale for the first proposal is that the direct,purposeful, and unambiguous infliction of death leavesno psychological space for acknowledged ambivalence.Whether the infliction is carried out on oneself or on oth-ers, it demands an unambivalent claim of rightness andrighteousness that is psychologically impossible and thusinvites self-contradictory expressive actions.

Our current regulations for end of life decision-makingdo offer psychological space for acknowledged ambiva-lence in various ways. The rules that permit withholdingor withdrawing life-sustaining care provide some comfort-ing assurance that these actions do not in themselves in-flict death because the underlying illness is the cause ofdeath. At the same time, the logical tenuousness of thisreasoning promotes conscious acknowledgment of am-bivalence—that is, of the close proximity of these actionsto wrongful conduct. (This protective dynamic is com-pellingly described by Miles Edwards and Susan Tolle inan article about removing a competent, conscious postpo-lio patient from a ventilator in response to his insistent re-quest. Although rationally convinced of the moral cor-rectness of this course, Drs. Edwards and Tolle reportednonetheless having a powerfully troubling sense of wrong-doing, of “purposeful killing.”1) The logical tenuousnessof the distinction between relieving pain and hasteningdeath in the high-dosage administration of opioids todying patients—the so-called “double effect” principle—has the same psychologically protective function, serving

Death’s wrongness cannot be entirely repressed; a buried sense of its

wrongness will push toward expression. The challenge for social

regulation of end of life care is to design countervailing schemes.


simultaneously as permission and a warning sign aboutdealing with death.

The protective function of these logically tenuous rulestends to erode over time, as their routine application dullseveryone’s sense of the close correspondence between per-mitted and forbidden conduct authorized by these rules.The clearest indication of this erosion is in the argumentsput forward by advocates for physician-assisted suicideand euthanasia. These advocates insist that withholding orwithdrawing life-sustaining treatment or applying thedouble effect principle is logically identical to purposeful,unambiguous infliction of death, and that this logicalidentity means that all these steps are morally equivalentand morally correct. These contemporary advocates fail tosee that, far from justifying this “next step” toward pur-poseful killing, the plausibility of their logical claimsabout existing practices should raise concerns that thesepractices have themselves lost their function as protectiveexpressions of ambivalence toward death.

Our guiding principle for social regulation should bethat the more comfortable clinicians and patients are withactions implicating death, the more socially dangerousthese actions become. Preserving these “illogical” lines be-tween accepting and hastening death—between physi-cian-assisted suicide and withholding or withdrawingtreatment or administering high-dosage opioids—is in theservice of promoting conscious awareness of moral dis-comfort. Eliminating this discomfort, as urged by advo-cates for physician-assisted suicide and euthanasia, is logi-cal but terribly wrong—and socially dangerous becausethe unconsciously buried conviction of wrongdoing ulti-mately will express itself in eruptions of blameworthyconduct.

Toward Shared Decision-Making

My second proposal, that social regulations should notdesignate any single individual to exercise exclusivecontrol over decisions that might lead to death, would re-quire a more radical departure from existing arrange-ments. Forged on the anvil of autonomous individualchoice, existing arrangements search relentlessly for a sin-gle designated decision-maker based on a clear-cut hierar-chy of authority. The desperate intensity of this search isrevealed by the state laws, noted above, that denominateproxy decision-makers even where an incompetent pa-tient has made no prior selection. In particular, this in-tense search is apparent in the provision of those laws re-garding multimember proxies, such as parents or childrenor siblings; many such laws specify that for this class ofproxies, majority vote shall prevail and, in the event of tievotes, the class is disqualified from decision-making au-thority. The implicit goal in these laws is not simply to

find some single decision-maker but to find an unam-biguous choice about life-sustaining treatment.

There is a practical imperative behind this goal becauseof the binary character of the decision to treat or not totreat. But honoring this imperative means suppressing theambivalence that is likely to accompany this decision. If itis more socially and psychologically protective to ac-knowledge and address this ambivalence in the course ofdecision-making, the better course would be to amplifythe opportunities for expression of differing views—thusforcing everyone’s ambivalence about death-dispensingdecisions toward visible acknowledgment. To accomplishthis goal, provision of life-sustaining treatment must bethe default option unless and until all of the affected par-ticipants (family members and clinicians) have come to aconsensus about withholding or withdrawing.

When the patient is competent and prepared to makea decisive choice, the autonomy principle does properlybestow hierarchically superior authority with the patient.But even in this clear-cut case, there are other, important-ly affected participants who should have some voice in thepatient’s ultimate decision—not a veto but a voice, achance to talk to the patient and address and amplify theambivalence that the decision-making patient himself islikely to feel but also likely to deny.

Beyond—or perhaps one should say, above—this psy-chological benefit of consultation, there is an ethical prin-ciple that demands this consultative process. The compe-tent patient may have the ethically highest priority in de-cision-making; but his or her decision to continue or dis-continue treatment has a powerful and lasting impact onfamily members and on health care clinicians. Yet theirstake in the decision is ignored when we fixate on the pa-tient’s autonomous choice. Their stake may ultimately de-serve less weight than the competent patient’s choice; butsome weight nonetheless is appropriate and can be re-spected by rules providing for some consultative process-es.

Perhaps these consultations should be mandatory in allcases. Perhaps some exception should be made where thepatient adamantly resists any consultation, but even herethe patient should be required to explain his refusal tosome third party. In this explanation, some degree of re-spect at least would be paid by the patient both to the pos-sibility that he is suppressing his own ambivalence abouthis decision and that others will be powerfully affected byhis decision and thus have some ethically mandated stakein it.

Where there is no competent patient or clear-cut ad-vance directive from the now-incompetent patient, theautonomy principle provides no ethical basis for givingpriority to any one among many plausibly affected parties.The practical imperative of making an unambiguouschoice among binary alternatives might justify some arbi-


trarily imposed hierarchy among potential decision-mak-ers. But this imposition should be postponed for a con-siderable time while the parties are forced, by their explic-itly shared decision-making authority, to collaborate withone another and to explore the possibilities of a genuineconsensus.

This extended consultative process cuts against thegrain of current medical practice. The process is time-con-suming and emotionally draining. Clinicians are not ade-quately compensated financially or psychologically forthese costs. They are, moreover, typically not trained toengage in these consultative processes. Extended consulta-tion with distressed family members in conflict with oneanother about treatment alternatives requires considerableemotional investment and resilience among clinicians. Itrequires, among other things, that clinicians confronttheir own discomfort and ambivalence about the death-dispensing decisions that are a regular part of their dailyroutine. The automatic, instantaneous designation of asingle decision-maker—whether it is the competent pa-tient or one family member among many to speak for theincompetent patient—permits clinicians to avoid thesearduous, complicated confrontations with conflictingfamily members and with conflicts within themselves.This is the path of least resistance—and the path of great-est individual and social danger toward routinized, unac-knowledged abuse.

My third proposal, that systems-wide default pathwaysshould self-consciously be constructed to implicitly guideand even dictate caretaking decisions in individual cases,derives from the same psychological premises as the otherproposals. Systems-wide decisions establish the contextand frequently dictate the content of individual bedsidedecisions on such matters as allocation of resources, locusof care (home versus hospital versus nursing home), andthe roles of professional and informal caretakers.

This is the lesson, for example, of the SUPPORT find-ing that the place of death (home versus institutional set-tings) did not depend on patient or family preferences.Rather, it correlated directly with the availability of insti-tutional beds—the more beds in any region, the morelikely that terminally ill patients in those regions woulddie in those beds. It is highly unlikely, however, that any-one involved in the systems-wide decision-making thatproduced more or fewer hospital beds acknowledged,even to themselves, that their decisions would have a di-rect effect on dying patients and would virtually dictatewhether these patients died at home or in hospital. Theimpact of these systems-wide choices on dying peoplewas, in an important sense, invisible to everyone—eventhough a moment’s clear thought would have made it vis-ible.

The same phenomenon is found in the familiar exam-ple of the psychological difference between systems-widedecisions to withhold resources for improving coal minesafety and particularized decisions to withhold rescue re-sources from workers trapped in coal mine accidents. Inboth contexts, lives will clearly be lost by withholdingsafety and rescue resources and, moreover, the number oflost lives is precisely calculable. But in withholding expen-ditures for coal mine safety, the lives lost are statistical pro-jections; for trapped coal miners, impending deaths aremade real with specific names, faces, and families. Theethical costs and psychological dangers of withholding re-sources from rescue are therefore much greater than forwithholding preventive expenditures. Withholding rescueresources feels like inflicting death and is inevitably guilt-provoking, while withholding resources for preventivesafety measures feels like an impersonal policy decision, inwhich we may easily begin to calculate that death may besocially desirable given the costs of preventing it.2

In making decisions about the care of dying people, weshould take advantage of the psychologically protectiveimplications of systems-wide decision-making. As muchas possible, we should make systems-wide decisions inwhich, at the moment when the decisions are made, nospecific dying person is an acknowledged target.

The three proposals have one common theme: that thefocus of attention shifts away from individual choice-making autonomy in the social arrangements regardingend of life care. Because the autonomy focus has no sub-stantive content—because it is ostentatiously silent aboutwhether death is desirable or undesirable, but insists onlythat each individual should make this value choice forhimself—it has served the same psychological purposethat I have criticized throughout this essay, namely, todeny ambivalence about death—to deny that death canbe both attractive and repulsive at the same time, and todeny that decisions either to accept or to resist death aremore fraught with possibilities of abuse when this coreambivalence is suppressed rather than acknowledged in anopen and sustained way. Acknowledging this ambivalenceis difficult. These difficulties have given impetus to the re-lentless search for a single decision-maker regarding endof life care—whether that decision-maker was the attend-ing physician, under the old ethos of physician paternal-ism, or the individual patient, under the new ethos of in-dividual autonomy. We have seen enough by now toknow that the current path is not a reliable improvementover the old.

1. M.J. Edwards and S. W. Tolle, “Disconnecting a Ventilator atthe Request of a Patient Who Knows He Will Then Die: The Doc-tor’s Anguish,” Annals of Internal Medicine 117 (1992): 254-56.

2. For an extended, illuminating discussion of this proposition,see G. Calabresi and P. Bobbitt, Tragic Choices (New York: W. W.Norton, 1978).


Not long ago, people generally “got sick anddied”—all in one sentence and all in a few days orweeks. The end of life had religious, cultural, andcontractual significance, while paid health care servicesplayed only a small part. Now, most Americans will growold and accumulate diseases for a long time before dying.Our health care system will cleverly supplement thebody’s shortcomings, making it possible to live for years“in the valley of the shadow of death,” fearing not onlydeath but also all sorts of evil from the regular dysfunc-tions of our health care and social systems. In a sense, thegreat success of modern medicine has been to transformacute causes of death into chronic illnesses. Mostly, we donot spend much time or money on cures—these arequick and cheap when they are available at all. Instead,health care now involves substituting better chronic con-ditions and helping people to live with implacable ill-nesses, a few of which are stable and many of which areprogressive but not life-threatening. However, each of useventually lives with a set of conditions that are, taken to-gether, progressively worsening and eventually fatal.

This is a very different way of coming to the end oflife from that of “the old days,” when people died inchildbirth, of occupational hazards, of periodic epi-demics, and with the first heart attack. In 1897, SirWilliam Osler’s The Principles and Practice of Medicinenoted that the usual adult hospitalized with diabeteswould die within a month. Things have changed somuch that today we don’t really have the language, thecategories, and the stories to help us make sense of our

situation. One hears people say, “He’s not dying yet,” ofa person living with fatal lung cancer. Generally, thatmeans he’s not yet taking to bed, losing weight, and suf-fering from pain, as would be expected when dying is allthat he can do. But the category is used as if one is either“temporarily immortal”—which is the usual state ofhuman beings—or “dying,” in which case the person isof a different sort, having different obligations and rela-tionships. “The Dying” are expected to do little but wraplife up and go. But this dominant myth about dying doesnot fit many people. Many elderly people are inching to-ward oblivion with small losses every few weeks ormonths.

If our language does not accommodate the new reali-ty, it is not surprising that our shared social life has notyet taken up the challenge. No characters on eveningtelevision are cracking jokes while dealing with Grand-ma’s wandering and incontinence. No movies show theaccommodations needed to live with advanced emphyse-ma. As a patient once told me, “No one in the Bible diedlike this.” People find little guidance when they look toour ancient texts for comfort and advice on how to livewhile walking a tightrope of serious illness and frailty,propped up by modern medicine.

That lack of social understanding also shows in theconceptual apparatus we have used in trying to bring re-form to what happens in the last part of our lives. Re-markably, we have used the language of decision-makingand law more often than that of spiritual journey andpsychological meaning. In the 1970s, the issues wereframed as “the right to die” or “the right to choose.” Thework of the President’s Commission on Ethical Problemsin Medicine and Biomedical and Behavioral Researchmarks a transition to the language of “foregoing life-sus-

Living Long in Fragile Health:The New Demographics Shape End of Life Care

b y J O A N N E LY N N

Joanne Lynn, “Living Long in Fragile Health: The New DemographicsShape End of Life Care,” Improving End of Life Care: Why Has It Been SoDifficult? Hastings Center Report Special Report 35, no. 6 (2005): S14-S18.


taining treatment.” At that time, widespread reaction tothe suffering inflicted on patients by cancer treatmentsand to mainstream medicine’s inattention to physical painled to the only widely adopted change in health care de-livery in the last half of the twentieth century—hospiceprograms. Half of Americans use hospice at least brieflybefore dying. However, most of the time spent living withserious illnesses that will end in death is spent not in hos-pice care, but in the indistinct zone of “chronic illness”that has no specific care delivery system. Most of us aspireto “healthy aging,” but we should also ensure that we can“live well while very sick and dying.”

In this short essay, I will lay out the framework for apromising approach to reform. First, reformers must un-derstand some core facts about illness, aging, and disabili-ty, and the dysfunctions of the categories and languagethat we have inherited. Second, we should tailor servicedelivery arrangements to serve the three common trajecto-ries of service needs that people tend to follow in their lastphase of life. Third, we should strategize to build the po-litical base to insist upon rapid practical change, startingwith family caregivers.

Factors in the End of Life

In the recent past, a number of events have shaped thelast part of life. Oregon debated and eventually accept-ed a process that allows physicians to assist in some delib-erate suicides. Most hospitals, including all of the VeteransHealth System facilities, are beginning to offer palliativecare programs. New drugs and devices often add a little tothe time spent living with fatal conditions but also greatlyincrease costs. Families still provide most of the supportivecare without financial compensation, but the effects onfamily caregivers are becoming more obvious as theirnumbers, ages, and emotional and financial burdens in-crease.

One element that has influenced the course of reformsin care for the last part of life has been some data-driveninsights from the SUPPORT project. The Study to Un-derstand Prognoses and Preferences for Outcomes andRisks of Treatments, or SUPPORT, enrolled more than10,000 seriously ill patients in five hospitals from 1989 to1994. The project initially aimed to understand and im-prove decision-making for these patients through betterinformation about outcomes and better support for thosemaking decisions. Since SUPPORT enrolled people whohad one of nine serious illnesses, or were old and had anonelective admission, a great many patients died duringdata collection. While the population is not representativeand the data arose fifteen years ago, the SUPPORT pro-ject illuminated a number of facts that otherwise had beenoverlooked or had never before been substantiated. Forexample:

1. Many patients suffer substantially in the time beforedying.

2. The patients, their families, and their professionalcaregivers did not see adverse symptoms or aggressivetreatment as serious shortcomings of care.

3. Statistical models could accurately predict the likeli-hood of survival for two or for six months, both for in-dividual patients and for groups of patients.

4. Knowing reliable predictions concerning survival didnot affect patients, family members, physicians, or nurs-es: they continued to follow usual treatment patterns.

5. Prognoses remain ambiguous even very close todeath. For example, the median person dying of heartfailure today had a 50-50 chance yesterday to live an-other six months. Good care for the dying requires tak-ing care of many who will live for a long time with theirserious illnesses.

6. Counseling about the possible alternatives for careand encouraging decision-making that implemented pa-tient preferences among available options had no effectupon patterns of care.

7. The course of care is much more strongly associatedwith the service supply and habit patterns of the localcare system than with the particular preferences or prog-noses of the individual patient.

Several other facts also shape the possibilities for reforms.First, despite our cultural (and perhaps our universallyhuman) distaste for the fact of finitude, American societyis gradually learning to expect disability in old age and toaccept that serious illness and death are inevitable. Thirtyyears ago, hospital staff attempted resuscitation on nearlyevery person whose heart stopped. Now, only a small mi-nority of patients, mostly those with some real chance tobenefit, undergoes resuscitation. In a similar vein, theU.S. Preventive Services Task Force has started includingsome “upper limits” on the ages at which screening testsmake sense.

Second, the costs and burdens of care are highly con-centrated in the last years of life, especially when one ac-counts for long-term disability. One recent study foundthat, for those alive at age eighty-five, one-third of life-time health costs are still ahead.

Third, knowledge about the body has been organizedby disease and organ system, and claims about quality orcosts of care have been organized by program and setting(nursing home or intensive care unit, for example). Thosewho are very sick over a substantial time before death,


who routinely have more than one illness, and who needmany care settings challenge the care system design. In-stead of noticing only virtuoso medical interventions, so-ciety is beginning to value continuity and comprehensive-ness, or even just reliability. Nevertheless, initial contem-plation leaves one overwhelmed by the infinitely varyingarrays of physiological dysfunctions, personal preferences,family situations, and other aspects of a person’s circum-stances as they become ill “through to death.” Some havecontended that the proper course requires the care system(and the family and community) to discern and create thestrategies needed to support each patient’s individual situ-ation. At the least, this view contends that patients shouldget to choose from among available options and crafttheir own end of life. While this approach has substantialappeal, it entails remarkable inefficiency and quicklyreaches its limits when the services that would best serve aparticular patient could be available only if they served asubstantial number of patients in an area.

Trajectories of Decline

This conundrum leads to the very creative interface ofseeking opportunities for “mass customization,”which is how most successful product or service suppliersmatch their goods to the needs of important subsets oftheir potential markets. The reform agenda has focusedon crafting patient-centered care around each individualpatient or, in contrast, on altering major elements of theentire care system, such as payment policy or standardsfor care settings. Mass customization instead aims to de-fine manageable populations with similar needs and thenengineers services that match the size of that populationand its predictable needs. This endeavor has found its an-chor in the observation that most people follow some fair-ly stereotyped courses in those last months and years. Themost common three trajectories of care needs over timeare these:

1. Long maintenance of good function despite knownfatal illness, with a few weeks or months of rapid declineas the illness becomes overwhelming and leads to death.While many diagnoses can lead to this course, the major

cancers are the typical cause. Probably about 20 percentof Americans follow this course.

2. Slow decline in physical capacities punctuated by se-rious exacerbations, with death often coming rathersuddenly. If patients survive an episode, they may wellreturn home without much worsening of their everydaylimitations; but at some point, rescue attempts fail. Al-though many diagnoses can lead to this course, chronicheart failure and emphysema are the most common;about 25 percent of Americans follow this course.

3. Long-term dwindling of function, needing years ofpersonal care. Although half of this population has seri-ous cognitive failure as part of the disease course, halfmaintain cognitive function, at least when not stressedby illness. Dying often follows a physiological challengethat would have been a minor annoyance earlier inlife—influenza, urinary infection, pneumonia, or a bro-ken bone. Approximately 40 percent of Americans fol-low this course.

These three trajectories are roughly sequential in theages afflicted, with fatal cancers peaking around age sixty-five, fatal chronic organ system failures roughly a decadelater, and frailty and dementia afflicting mostly those wholive past their mid-eighties. As science and public healthmore reliably prevent or delay onset of cancer, emphyse-ma, and heart disease, the proportion of the populationfacing the third course will increase.

One can see how a society could build care arrange-ments around these three patterns, following the masscustomization approach. Those facing the first trajectoryneed excellent medical care during the long period ofgood function, meshed with supportive hospice care forfamily and patient during the period of rapid decline.Those living with the second trajectory benefit from dis-ease management to reduce the likelihood of exacerba-tions and to sustain all possible function, along with rapidintervention at the first sign of exacerbation (often in thehome rather than the hospital) and good advance careplanning directing the eventually overwhelming exacerba-tion. Those living with the third trajectory need support-ive care over many years, including assistance with the ac-

Society could build care arrangements around the major patterns of

decline and dying. For any population, one could estimate the care

needs and arrange to have them available at the right time. This

approach conceives of the challenge of end of life care as a problem of

system design.


tivities of daily living, housing, and comfort. The coreneed is to support family caregivers, although they alsoneed reliably paid aides and institutional care. For anypopulation, one could estimate the care needs and arrangeto have them available at the right time. Patients, families,and providers would still make small adjustments to fittheir capabilities and preferences, but the core arrange-ments for care would already be in place, rather thanbeing patched together for the first time around each pa-tient.

This conception of the challenge of care for the end oflife as a problem of system design reflects a very differentconcept from “refusing life-sustaining treatment.” Indeed,it is really quite different from imagining that the coreproblem is decision-making by patient and physician.Those remain important, but this approach does not as-sume that good care could arise from prudent choices byindividual doctors and patients. Rather, it starts from theclaim that the care system should be designed to serve thevast majority of patients “on autopilot.” That is, if no onemakes any particularly strong choices, still just about theright things will happen for patients because they are“built into the system” and are part of the expected pat-tern.

This is what happens now in obstetrics. Just a fewdecades ago, women had to advocate personally for theservices each wanted; now nearly everyone is well-servedby a care system that supports prepared labor, bondingwith the baby, breastfeeding, and other desirable goals.One way to think about the reforms needed in end of lifecare is to aim for a care system in which almost every pa-tient would get very close to what serves him or her andthe family well, without having to advocate for himself orherself.

The Shape of a Reform Agenda

One implication of the SUPPORT findings concern-ing prognostication and the model involving trajec-tories is that we cannot build workable care systems thatserve only those who will die quickly. Rather than theMedicare hospice program’s approach of conditioning tai-lored care to the near certainty of death within six months(and thus the median survival of just a few weeks), effec-tive restructuring of care will need to serve populationsthat include people who end up dying after some years, aswell as those who die soon. No strategy is available, for ex-ample, that would serve most who die of heart failurewithout including many who live with those services foryears. With most conditions, including heart failure, thetiming of death is just too unpredictable to enable goodservices to be conditioned upon reliable short-term pre-dictions of death.

Palliative care teams trying to achieve quality improve-ment often find the relevant population by asking whatwe have come to call the “surprise question.” Instead ofasking whether the person has a prognosis of some shortlimit (such as having a prognosis of six months, whichMedicare regulations require if a patient is to qualify forreimbursement of hospice benefits), the clinical team asks,“Is this person sick enough that it would be no surprisefor the person to die within the next six months, or ayear?” Whether one looks a few months ahead or a yearturns out not to matter much; at stake is whether the per-son is in a fragile enough condition that relatively minorworsening or intercurrent illnesses could spell the end oflife. Some of the patients identified by “the surprise ques-tion” will end up living for years in a fragile state, andsome will die soon, but all typically need the services thatare priorities in the last part of life: advance care planning,comfort measures, assistance for daily activities, familysupport, and so forth. Whether a particular person needsthis help for a few weeks or a few years, the social plan-ning requires arranging services that can stay with the per-son throughout.

Figure I.Three General Trajectories of Function and Well-Being

over Time in Eventually Fatal Chronic Illnesses


One might think that the concentration of sufferingand costs would have led to substantial investments inlearning how to serve people as they pass through that lastpart of life. However, investments of this sort have beenvery slow in coming. While the Soros Foundation’s Pro-ject on Death in America, the Robert Wood JohnsonFoundation, and others did invest during the last decadein building palliative care consultation in hospitals andgrassroots citizen action, very few substantial demonstra-tion projects have tested reformed care delivery, very littlebasic science research has targeted symptoms and disabili-ties, and few initiatives have started to alter the dysfunc-tional financial incentives that favor medical, surgical, andpharmacological interventions over reliability, continuity,and comprehensiveness.

I recently participated in a review of the state of the sci-ence underlying palliative care. The review was worded asoptimistically as possible, but the science was indefensiblyinadequate on virtually every issue, from measuring betterand worse outcomes of care to assessing the merits of stan-dard therapies. I came away feeling that this must havebeen the state of science regarding heart disease fifty yearsago—when most of the “science” was expert opinion andmuch of it was inadequate, even erroneous. In twentyyears, when the aging of the Baby Boomers doubles thenumber of people living with serious illness in the lastyears of life, society will have to focus on generating reli-able

he astings enter • access to hospice care: t expanding ......robert a. burt is alexander m. bickel...

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