WHAT’S THE POINT? Clinical Reflections on Care that Seems Futile For Charles McKhann MD What’s the Point? Clinical Reflections on Care that Seems Futile Edited by: David H. Smith, Charles McKhann, Christiana Peppard, Thomas Duffy and Stanley Rosenbaum 1. Introduction David H. Smith 2. Clinical Observations by Physicians a. Death early and fast i. Newborn and Pediatric Mark Mercurio and John Seashore ii. ER John Schriver and Karen Restifo b. Death after a major struggle i. ICU Mark Siegel, Stanley Rosenbaum and Heidi Frankel ii. Dialysis Robert Reilly iii. Transplantation Amy Friedman, Marc Lorber and David Cronin iv. Oncology David Fischer and Dennis Cooper c. Death in the last act i. Nursing home Margaret Drickamer ii. Hospice W. Scott Long and Fred Flatow 3. At the Bedside a. Nurses Linda Pellico and Annette Milliron b. Chaplains Margaret Lewis and Christiana Peppard 4. Perspectives a. Promoting Authentic Hope Jennifer Beste b. Law Stephen Latham c. Money Attilio Granata 5. Religion a. Judaism Rabbi Michael Whitman b. Catholicism Margaret A. Farley and Jennifer Beste c. Protestantism David Tolley d. Islam Nour Ahkras Case Study Thomas Duffy with Commentaries Robert Burt, Mark Mercurio, Constance Donovan, James Swan-Tuite Contributors Nour Akhras, M.D., Pediatric Resident, University of Illinois Medical Center Jennifer Beste, Ph.D., Assistant Professor of Theology (Christian Ethics), Xavier University Robert A. Burt, J.D., Bickel Professor of Law, Yale University School of Law Dennis Cooper, M.D., Professor of Medicine (Oncology) and Associate Professor of Surgery, Yale University School of Medicine David C. Cronin, M.D., Ph.D., Department of Surgery (Transplantation), Yale-New Haven Hospital Constance Donovan, A.P.R.N., M.S.N., Adult Oncology Nurse Specialist,Yale-New Haven Hospital; Associate Clinical Professor at Yale School of Nursing. Margaret A. Drickamer, M.D., Associate Professor of Medicine (Geriatrics), Yale University School of Medicine Thomas P. Duffy, M.D., Professor of Internal Medicine (Hematology) and Director of the Program for the Humanities in Medicine, Yale University School of Medicine Margaret A. Farley, Ph.D., Gilbert L. Stark Professor of Christian Ethics, Yale University Divinity School David S. Fischer, M.D., Clinical Professor of Medicine (Oncology), Yale Cancer Center and Yale University School of Medicine Frederick A. Flatow, M.D., Assistant Clinical Professor of Medicine, Yale University School of Medicine; Staff Physician, Connecticut Hospice Heidi L. Frankel, M.D., Associate Professor of Surgery (Trauma), Surgical Critical Care, Yale University School of Medicine Amy L. Friedman, M.D., Associate Professor of Surgery (Transplantation), Yale University School of Medicine Attilio V. Granata, M.D., M.B.A., Associate Clinical Professor of Internal Medicine, Yale University School of Medicine Stephen R. Latham, J.D., Ph.D., Professor of Law and Director, Center for Health Law and Policy, Quinnipiac University School of Law Margaret Lewis, M.Div., Director, Department of Religious Ministries, and Co-Chair of the Ethics Committee, Yale-New Haven Hospital W. Scott Long, M.D., Assistant Clinical Professor of Medicine, Yale University School of Medicine; Staff Physician, Connecticut Hospice Marc Lorber, M.D., Professor of Surgery (Transplantation) and Pathology, Yale University School of Medicine; Section Chief, Surgery (Transplantation), Yale-New Haven Hospital Charles F. McKhann, M.D., (deceased) Professor of Surgery (Oncology) Emeritus, Yale University School of Medicine Mark R. Mercurio, M.D., Associate Clinical Professor of Pediatrics, Yale University School of Medicine; Director, Neonatal Intensive Care Unit, Lawrence and Memorial Hospital Annette Milliron, R.N., Yale-New Haven Hospital; Candidate in Psychiatric and Mental Health Nursing, Yale University School of Nursing Linda Honan Pellico, R.N., M.S.N., Ph.D., Medical Surgical Nursing Coordinator, Yale- New Haven Hospital; Lecturer, Yale University School of Nursing Christiana Z. Peppard, M.A.R., Editor and Research Associate, Interdisciplinary Center for Bioethics, and Ph.D. student, Department of Religious Studies, Yale University Robert Reily, M.D., Associate Professor of Nephrology, Yale University School of Medicine (after July, will be Fredric L. Coe Professor of Nephrolithiasis Research, University of Texas Southwestern Medical Center) Karen Restifo, M.D., Assistant Clinical Professor (Surgery), Section of Emergency Medicine, Yale University School of Medicine Stanley H. Rosenbaum, M.D., Professor of Anesthesiology, Internal Medicine and Surgery, Yale University School of Medicine John A. Schriver, M.D., Associate Professor of Surgery and Internal Medicine, Yale University School of Medicine; Section Chief, Emergency Medicine, Yale-New Haven Hospital John Seashore, M.D., Professor of Surgery and Pediatrics, Yale University School of Medicine Mark Siegel, M.D., Associate Professor of Internal Medicine (Pulmonary), Yale University School of Medicine; Section Chief, Medical Intensive Care Unit, Yale-New Haven Hospital David H. Smith, Ph.D., Director Yale Center for Bioethics; Senior Lecturer in Political Science Yale University James Swan Tuite, Ph.D., Visiting Professor in Philosophy and Religion, Bates College David Tolley, M.A.R., Editor and Research Associate, Interdisciplinary Center for Bioethics, Yale University; J.D. student, University of California, Berkeley Rabbi Michael Whitman, Adath Israel Poale Zedek Ozeroff Congregation What’s the Point? Clinical Reflections on Care that Seems Futile I. Introduction David H. Smith This collection of papers is about the awesome and painful decisions that often must be made when a life is nearing its end. The participants in these decisions include medical caregivers, family, and, when possible, patients themselves. Decision makers wonder whether further aggressive medical treatment is advisable; they think it may be futile or even harmful. Should the emphasis in care switch to providing comfort for the remainder of life, rather than continuing a struggle that cannot be won? That such a switch should be made has been conceded by almost everyone who has written about end of life care in the past forty years. Understandably, however, it is one thing to make this argument in a classroom or journal and another thing to act on it. We hope to describe the textures of decisions in seemingly pointless treatment in various care settings. Pointless, Futile and Inadvisable Treatments: Why Should We Care? The decision making issues in end of life care have been thoughtfully discussed in many ways in the past forty years. Some writers have stressed patient autonomy and the importance of deciding for oneself how one will die. But many people don’t want to take that responsibility, are unable to take it, or use it in ways that seem destructive to themselves, their families, and perhaps to other patients and citizens. For that reason approximately a decade ago a group of scholars attempted to specify and clarify a notion of medical futility to describe treatments that parties should not be free to choose, since their likelihood of curative success was miniscule. “Medical futility” became a new buzz word in the medical community, and debates raged over its proper definition and application. Inevitably, these debates were perceived as a morally misguided attempt to return power to physicians.1 We do not want to resurrect that debate. But we do contend that there are issues of substance at the end of life – of what care should be provided to persons as they are dying – that can not be reduced to questions of procedure, or medical politics, or of who should decide. In fact it is hard to expunge the language of “futility” from everyday speech, and hence from the decision making conversation and process. “Futility” was a word in ordinary conversation long before it began to be treated as a technical term, and no one disputes that some treatment choices may so inadvisable, so unlikely to produce a desired result, as to be futile in the sense of morally improper. We want to renew the discussion of when curative treatments should not be continued, bracketing as far as possible the question of who should choose. When is a treatment highly unlikely to be in the interest either of the patient or those with whom her life has been enmeshed? This question holds regardless of who makes the decision, because we assume that the right decision maker can make a wrong decision, or vice versa. Thus, while who makes the decision is an important question, arguably the first question, it is neither the only question nor the central concern of this book. Nor do we focus on primarily on rationing, a topic that is inevitably tied to discussions of futility. “Why do we waste the money on Aunt Edna when there are so many children needing basic care?” Rationing refers to decision making in situations of limited resources; we do not ignore the question. But our primary concern is with the 1 See, for example, Susan B. Rubin, When Doctors Say No (Indiana University Press) 1998. interests of patients themselves, and the ways in which pointless or futile treatments may run counter to those interests, however construed. We assume that is an undesirable outcome, whatever the larger community may conclude about rationing. We want to describe the extent to which difficulty and ambiguity persist when we try to set boundaries to what is, or is not, pointless. General normative statements about treatment that is “futile” often don’t fit with the