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

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

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Published by The Hastings Center
This report contains 10 essays that present a synoptic overview of the most important developments in end-of-life decisionmaking and take stock of their successes or failures. The essays also provide ideas for a new strategy to improve care for the dying, and examples of ways to reevaluate and improve advance directives and surrogate decisionmaking.
This report contains 10 essays that present a synoptic overview of the most important developments in end-of-life decisionmaking and take stock of their successes or failures. The essays also provide ideas for a new strategy to improve care for the dying, and examples of ways to reevaluate and improve advance directives and surrogate decisionmaking.

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Published by: The Hastings Center on Feb 27, 2010
Copyright:Traditional Copyright: All rights reserved

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05/16/2012

 
A H
ASTINGS
C
ENTER
S
PECIAL
R
EPORT
WHY HAS IT BEEN SO DIFFICULT?
Adrienne AschRobert A.BurtDaniel CallahanNancy Neveloff DublerKathleen M.FoleyBernard J.HammesSusan E.HickmanBruce JenningsSandra H.Johnson Joanne LynnAlan MeiselAlvin H.MossThomas H.MurraySusan W.Tolle
IMPROVING
End of Life Care
Contributors
Edited by Bruce Jennings,Gregory E.Kaebnick,andThomas H.Murray
 
Adrienne Asch
is the newly-appointed Edward and Robin Milstein Professor of Bioethics 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 Peaceful Death 
(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 of Medicine.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 Relief and 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 of Medicine 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 alsoteaches at the Yale University School of Public Health.He served as associate directorof a project that produced the widely cited and influential
Guidelines on the Termination 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 of life,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 of Bioethics,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 of Treatment) 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 is
The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals, 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 in Biotechnology 
(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
2
Preface
Bruce Jennings 
5
Death:“The Distinguished Thing”
Daniel Callahan 
9
The End of Autonomy
Robert A. Burt 
14
Living Long in Fragile Health:
The New Demographics Shape End of Life Care
 Joanne Lynn 
19
Conflict and Consensus at the End of Life
Nancy Neveloff Dubler 
26
Hope for the Future:
 Achieving the Original Intent of Advance Directives
Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss, and Susan W. Tolle 
31
Recognizing Death while Affirming Life:
Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life? 
Adrienne Asch 
37
Making Room for Dying:
End of Life Care in Nursing Homes
Sandra H. Johnson 
42
The Past and Future of Palliative Care
Kathleen M. Foley 
47
The Role of Litigation in End of Life Care:
 A Reappraisal 
Alan Meisel 
52
The Quest to Reform End of Life Care:
Rethinking Assumptions and Setting New Directions
Thomas H. Murray and Bruce Jennings 
58
Selected References
60
End of Life Care Resources

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