View
213
Download
0
Category
Preview:
Citation preview
Leah RogneSusana Lauraine McCune
Editors
9 780826 110213
ISBN 978-0-8261-1021-3
11 W. 42nd StreetNew York, NY 10036-8002 www.springerpub.com
While advance directives hold a great deal of promise for ensuring self-determina-tion and quality of life near its end, the majority of Americans face life-threaten-
ing illness without having completed advance care planning. The growing availability of sophisticated life-support technology only increases the likelihood of anguished decision making, if not planned for in advance.
This volume brings together scholars and practitioners from a variety of disciplines to explore the barriers to advance care planning and share helpful strategies to facilitate meaningful conversations among patients, families, and health care providers to promote better outcomes at the end of life.
The text recounts the history of advance directives, chronicling the evolution of an approach that initially focused on completing forms, to one that now emphasizes more comprehensive strategies for planning for dying and death. It discusses how to overcome barriers to effective advance care planning and how to improve the effi cacy of surrogate decision making; and details public health, legal, and comprehensive community plan-ning approaches to change how our current society deals with dying, death, and end-of-life care.
Authors include palliative care physicians, nurses, social workers, grief counselors, educa-tors, lawyers, psychologists, sociologists, and medical ethicists. A wide range of contacts and additional resources are provided.
Key Features:• Introduces a multidisciplinary, communications approach to advance care
planning• Addresses strategies to reform advance care planning• Presents case studies illustrating the importance, benefi ts, and challenges of
advance care planning• Features successful initiatives in advance care planning and new directions that
shift community practice related to dying, death, and end-of-life care• Includes the contributions of physicians, grief counselors, medical ethicists, social
workers, psychologists, lawyers, nurses, educators, and others
Leah Rogne, PhD, Susana Lauraine McCune, MA, CTEditors
ADVANCE CARE
PLANNINGCommunicating
About Matters of
Life and Death
Communicating About Matters of Life and DeathADVANCE CARE PLANNING
AD
VA
NC
E CA
RE PLA
NN
ING
RogneM
cCune
© Springer Publishing Company, LLC.
Advance Care Planning
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd iRogne_10213_PTR_CH00_09-07-13_i-xvi.indd i 7/9/2013 7:41:21 AM7/9/2013 7:41:21 AM
© Springer Publishing Company, LLC.
Leah Rogne, PhD, is a professor of sociology at Minnesota State University, Mankato,
where she teaches courses in aging, death and dying, and human services. She is the
coordinator of Minnesota State’s Applied Sociology program and former interim
director of its Gerontology Program and Center on Aging. She is the coeditor of
Social Insurance and Social Justice: Social Security, Medicare, and the Campaign Against Entitlements (2009).
Susana Lauraine McCune, MA, CT, is a doctoral student of clinical psychology at
Antioch University Seattle, specializing in health psychology and art therapy. She
has served as a hospice volunteer and employee. She is a member of the Washington
State Psychological Association End-of-Life Special Interest Group. She brings an
interdisciplinary perspective to education, research, and support for professional
caregivers as they facilitate advance care planning and provide end-of-life care. Her
published works include Living Beyond the Other (2012) and Engaging A/r/tography to Reveal Countertransference: Enhancing Self-Awareness in Caregiving Professionals.
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd iiRogne_10213_PTR_CH00_09-07-13_i-xvi.indd ii 7/9/2013 7:41:21 AM7/9/2013 7:41:21 AM
© Springer Publishing Company, LLC.
Advance Care Planning
Communicating About Matters of Life and Death
Leah Rogne, PhDSusana Lauraine McCune, MA, CT
Editors
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd iiiRogne_10213_PTR_CH00_09-07-13_i-xvi.indd iii 7/9/2013 7:41:21 AM7/9/2013 7:41:21 AM
© Springer Publishing Company, LLC.
Copyright © 2014 Springer Publishing Company, LLC
All rights reserved.
No part of this publication may be reproduced, stored in a retrieval system, or transmitted
in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise,
without the prior permission of Springer Publishing Company, LLC, or authorization through
payment of the appropriate fees to the Copyright Clearance Center, Inc., 222 Rosewood Drive,
Danvers, MA 01923, 978-750-8400, fax 978-646-8600, info@copyright.com or on the Web at
www.copyright.com.
Springer Publishing Company, LLC
11 West 42nd Street
New York, NY 10036
www.springerpub.com
Acquisitions Editor: Sheri W. Sussman
Production Editor: Dana Bigelow
Composition: Newgen Imaging
ISBN: 978-0-8261-1021-3
e-book ISBN: 978-0-8261-1022-0
13 14 15 16 17 / 5 4 3 2 1
The author and the publisher of this Work have made every effort to use sources believed to be
reliable to provide information that is accurate and compatible with the standards generally
accepted at the time of publication. The author and publisher shall not be liable for any special,
consequential, or exemplary damages resulting, in whole or in part, from the readers’ use of,
or reliance on, the information contained in this book. The publisher has no responsibility for
the persistence or accuracy of URLs for external or third-party Internet websites referred to in
this publication and does not guarantee that any content on such websites is, or will remain,
accurate or appropriate.
Library of Congress Cataloging-in-Publication Data
CIP data is available from the Library of Congress.
Special discounts on bulk quantities of our books are available to corporations, profes-
sional associations, pharmaceutical companies, health care organizations, and other quali-
fying groups. If you are interested in a custom book, including chapters from more than
one of our titles, we can provide that service as well.
For details, please contact:
Special Sales Department, Springer Publishing Company, LLC
11 West 42nd Street, 15th Floor, New York, NY 10036-8002
Phone: 877-687-7476 or 212-431-4370; Fax: 212-941-7842
E-mail: sales@springerpub.com
Printed in the United States of America by Maple Press.
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd ivRogne_10213_PTR_CH00_09-07-13_i-xvi.indd iv 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Contents
Contributors ixPreface xiiiAcknowledgments xv
1. Introduction: A Matter of Life and Death 1Leah Rogne and Susana Lauraine McCune
PART I: ADVANCE CARE PLANNING: PROMISE AND CHALLENGE
Introduction 7Susana Lauraine McCune
2. Planning for End-of-Life Care: Where Are We and
How Did We Get Here? 11Susana Lauraine McCune and Leah Rogne
3. Advance Care Planning: Focus on Communication and
Care Planning Rather Than on Building the Perfect Form 33Ana Tuya Fulton and Joan M. Teno
4. Barriers to Advance Care Planning: A Sociological Perspective 45John Ryan and Jill Harrison
5. Advance Medical Care Planning: The Legal Environment 59Marshall B. Kapp
6. Advance Care Planning and the Problem of Overtreatment 75Nancy S. Jecker
v
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd vRogne_10213_PTR_CH00_09-07-13_i-xvi.indd v 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
vi Contents
7. Religion, Spirituality, and Culture in Advance Care Planning 89Beverly Lunsford
PART II: BEST PRACTICES FOR COMMUNICATING ABOUT END-OF-LIFE CARE
Introduction 105Susana Lauraine McCune
8. It Ain’t Easy: Making Life and Death Decisions Before
the Crisis 109Stu Farber and Annalu Farber
9. Advance Care Planning: Considerations for Practice With
Older Adults 123Kathy Black
10. Worlds of Connection: Applying an Interdisciplinary Relational
Model of Care© to Communication About End of Life 139Susana Lauraine McCune
11. Conversations That Matter: Stories and Mobiles 155Ben Wolfe
12. Advance Care Planning and Nursing Home Residents and Families:
Lessons Inspired by TV Game Shows 169Mercedes Bern-Klug, Jane Dohrmann, and Patrick A. Dolan Jr.
13. Watch Over Me©: Therapeutic Conversations in
Advanced Dementia 187Cory Ingram
14. On Writing One’s Own Advance Directive 209Joe Jack Davis
PART III: IMPLEMENTING ADVANCE CARE PLANNING: MODEL PROGRAMS
Introduction 219Leah Rogne
15. Respecting Choices®: An Evidence-Based Advance Care Planning
Program With Proven Success and Replication 223Linda A. Briggs
16. The Take Charge Partnership “Just Talk(s) About It”:
A Model for Sustained Grassroots Activism 243Margaret L. Stubbs, Jolene Formaini, Cynthia Pearson, and Dena Jean Sutermaster
17. The Coalition for Compassionate Care of California 257Judy Citko
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd viRogne_10213_PTR_CH00_09-07-13_i-xvi.indd vi 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Contents vii
18. Passion, Persistence, and Pennies 273Cari Borenko Hoffman
PART IV: SYSTEMS LEVEL CHANGE: CHARTING A NEW PATH FOR DYING,
DEATH, AND END-OF-LIFE CARE
Introduction 289Leah Rogne
19. Does the Nation’s Survival Depend on a
New End-of-Life Conversation? 293Helen Stanton Chapple and Katherine Irene Pettus
20. Inspiring Improvement and Leading Change in
End-of-Life Care 309Ben Lobo
21. Advance Care Planning as a Public Health Issue 333Allan Kellehear
PART V: RESOURCES
Selected Resources on Advance Care Planning and
End-of-Life Care 347Leah Rogne and Susana Lauraine McCune
Index 371
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd viiRogne_10213_PTR_CH00_09-07-13_i-xvi.indd vii 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Contributors
Mercedes Bern-Klug, PhD, MSW
Associate Professor
University of Iowa School of Social Work
Director, Aging Studies Program
John A. Hartford Geriatric Social Work
Faculty Scholar
Iowa City, Iowa
Kathy Black, PhD, MPH, MAQ, MSG
Hartford Geriatric Social Work Faculty
Scholar
Professor
Social Work and Gerontology
College of Arts and Sciences
University of South Florida at Sarasota-
Manatee
Sarasota, Florida
Linda A. Briggs, MS, MA, RN
Associate Director
Respecting Choices and Ethics Consultant
Gundersen Health System
La Crosse, Wisconsin
Judy Citko, JD
Executive Director
Coalition for Compassionate Care of
California
Sacramento, California
Joe Jack Davis, MD
Retired General Surgeon
Bremerton, Washington
Jane Dohrmann, LISW, ACHP-SW
Director, Honoring Your Wishes
Iowa City Hospice
Iowa City, Iowa
Patrick A. Dolan Jr., PhD
Lecturer
Department of Rhetoric
University of Iowa
Iowa City, Iowa
Annalu Farber MBA, MATS
Consultant
Tyler Associates
Tacoma, Washington
Stu Farber, MD
Professor
Department of Family Medicine
University of Washington School of
Medicine
Director
Palliative Care Service
University of Washington Medical Center
Seattle, Washington ix
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd ixRogne_10213_PTR_CH00_09-07-13_i-xvi.indd ix 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
x Contributors
Jolene Formaini, RN, MA, CT
Educator/Consultant on Issues of
Dying, Death and Bereavement
Healing Hearts Grief Education and
Support Services
Kittanning, Pennsylvania
Ana Tuya Fulton, MD, FACP
Chief of Internal Medicine, Butler
Hospital
Assistant Professor of Medicine
Division of Geriatrics
Warren Alpert Medical School of
Medicine Brown University
Providence, Rhode Island
Jill Harrison, PhD
Research Consultation Specialist
Planetree, a Non-Profi t Dedicated to
Patient-Centered Care
Derby, Connecticut
Cari Borenko Hoffmann, BA,
BSW, RSW
Project Implementation Coordinator
Fraser Health
Surrey, British Columbia
Canada
Cory Ingram, MD
Assistant Professor of Family and
Palliative Medicine
Mayo Clinic, College of Medicine
Medical Director, Palliative Medicine
Mayo Clinic Health System
Mankato, Minnesota
Nancy S. Jecker, PhD
Professor
Department of Bioethics and
Humanities
University of Washington School of
Medicine
Seattle, Washington
Marshall B. Kapp, JD, MPH
Director and Professor
Center for Innovative Collaboration in
Medicine and Law
Florida State University
Tallahassee, Florida
Allan Kellehear, PhD, AcSS
Professor of Community Health
Mental Health, Social Work, and
Inter-professional Learning
Middlesex University
London, United Kingdom
Dr. Ben Lobo, FRCP (UK)
Executive Medical Director
Derbyshire Community Health Services
NHS Trust
United Kingdom
Beverly Lunsford, PhD, RN, CNS-BC
Assistant Professor, School of Nursing
George Washington University
Director
GW Center for Aging, Health and
Humanities
Director
The Washington DC Area Geriatric
Education Center Consortium
Washington, DC
Susana Lauraine McCune, MA, CT
Doctoral Student
Antioch University Seattle
Seattle, Washington
Cynthia Pearson, BA
Author and Caregiver
Founding Member and Board Secretary
Take Charge of Your Life Partnership
Co-Project Director of “Just Talk About It“
Pittsburgh, Pennsylvania
Katherine Irene Pettus, PhD
Political Science and International
Relations
University of Pécs
Pécs, Hungary
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xRogne_10213_PTR_CH00_09-07-13_i-xvi.indd x 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Contributors xi
Leah Rogne, PhD
Professor
Department of Sociology and
Corrections
Minnesota State University, Mankato
Mankato, Minnesota
John Ryan, PhD
Professor and Chair
Department of Sociology
Virginia Polytechnic Institute and State
University
Blacksburg, Virginia
Helen Stanton Chapple, PhD, RN,
MA, MSN, CT
Nurse Ethicist, Assistant Professor
Center for Health Policy and Ethics,
School of Nursing
Creighton University
Omaha, Nebraska
Margaret L. Stubbs, PhD
Professor
Department of Psychology
Chatham University
Pittsburgh, Pennsylvania
Dena Jean Sutermaster, RN, MSN,
CHPN
Director of Education Products
Hospice and Palliative Nurses
Association
Pittsburgh, Pennsylvania
Joan M. Teno, MD, MS
Professor of Health Services, Policy
and Practice
Professor of Medicine
Associate Director of the Center for
Gerontology and Health Care
Research
Warren Alpert Medical School of Brown
University
Providence, Rhode Island
Ben Wolfe, MEd, LICSW
Former Program Manager/Grief
Therapist
Essentia Health–St. Mary’s Medical
Center’s Grief Support Services
Adjunct Instructor
University of Minnesota, Duluth School
of Medicine
Duluth, Minnesota
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xiRogne_10213_PTR_CH00_09-07-13_i-xvi.indd xi 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Preface
This book is intended to help facilitate meaningful communication and
effective decision making about medical care at end of life (EOL). With
an aging population and rapidly expanding life-saving technologies that
transform how we deal with life-threatening illness at any age or stage of
life, concerns about how we want to live at the end of our days become
more and more crucial for a growing number of people in our communi-
ties. However, research on EOL decision making shows that people have
diffi culty both asking and answering important questions about EOL care
for themselves and for their loved ones. Many people are overwhelmed by
the complexity of the health care system and do not know that they have
the right to decide what kind of care they would like to have when they are
critically ill or how to indicate their desires to their health care providers.
Advance directives (ADs) (living wills and health care proxies) have
received great attention in recent decades as tools for providing for self-
determination and quality of life near the EOL. Yet, despite years of enthu-
siastic advocacy by major health care organizations, they have not been as
widely used as hoped. Due to complexities involved in making and docu-
menting EOL care choices, lack of understanding of how they should docu-
ment their choices, and discomfort about talking about dying, a majority
of Americans face life-threatening illness without having a plan in place.
Also, due to communication problems among patients, families, and health
care providers and lack of awareness of how advance care planning (ACP)
can best be done, people who have planned ahead and have ADs in place
often do not get the care they had hoped for during the dying process.
Furthermore, it has become more and more apparent that the focus on
xiii
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xiiiRogne_10213_PTR_CH00_09-07-13_i-xvi.indd xiii 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
xiv Preface
autonomy and self-determination at the expense of any other ethical prin-
ciples or human motivations may not take into consideration the variety of
ways that people approach, with their loved ones, the profound and com-
plicated challenges presented as we face our mortality.
Featuring the voices of scholars and practitioners from a variety of dis-
ciplines, this volume provides a history of ADs and describes barriers to
effective ACP. Contributors share effective communication strategies that
address some of the shortcomings of a forms-completion approach to EOL
planning and show how a focus on facilitating meaningful conversations
between patients and their families and among patients, families, and their
health care providers can provide for better outcomes at the EOL. Authors
describe innovative regional or statewide initiatives for promoting effective
ACP and present some “big ideas” for how we as communities and as a
society could be charting a new course for how we deal with life-threat-
ening illness, dying, loss, and death. Those who are seeking guidance for
their own ACP or who want to be a part of initiatives to help communi-
ties address these important issues will fi nd a wide range of contacts and
resources.
At the heart, this project is intended to provide individuals with the
awareness of the need to plan ahead for their EOL and the tools to be effec-
tive in doing so, and to provide professionals with key strategies to be suc-
cessful in facilitating communication with patients and families. Too often,
after experiencing the death of a loved one, people will say “if I had only
known . . . ” or “if we had only talked . . . .” Meaningful conversations with
one another about what we value and what is important to us in life are the
basis for an effective ACP process. We hope that readers—professionals,
educators, and members of the general public—will fi nd the perspectives,
strategies, and tools (as well as the vision) the authors present in this vol-
ume to be helpful in providing a path to a dying process without regret.
Leah RogneSusana Lauraine McCune
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xivRogne_10213_PTR_CH00_09-07-13_i-xvi.indd xiv 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
Acknowledgments
I would like to thank the many elders I served as a nursing home social
worker for the wisdom they offered on how to live well until we die. I am
forever grateful to my mentor Michelle Matchie for introducing me to the
heart and soul of dying and for her many lessons about the meaning of life
and death. I would like to dedicate my work on this book to my parents,
Katherine and Leslie Rogne, who gave their children the gift of planning
well for their end of life.
—Leah Rogne
I would like to thank Mary Wieneke, PhD, and Philip Cushman, PhD, for
giving me the wind I needed to fi ll my sails when they sagged so I could
do what I believed needed to be done, even though at times on this journey
land was far from sight. I thank the hospice patients and families and the
grieving young people with whom I have been honored to work for their
courage and honesty. They continue to inspire me. I would like to dedicate
this book to my mother, Elizabeth Louise Hudson McCune, who gave me
the gift of understanding the necessity of preparing for dying and showed
me how to live and die courageously. My work on this book is dedicated
to her. I would like to express my deepest gratitude to Dr. Leah Rogne for
trusting me enough to embark on this project together and for mentoring
me as a budding editor and author. Thank you, Steve, for traveling with me
on this journey. Thank you, Dad, for believing in me.
—Susana Lauraine McCune
xv
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xvRogne_10213_PTR_CH00_09-07-13_i-xvi.indd xv 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
xvi Acknowledgments
In addition, we thank our editor, Sheri W. Sussman, and all the staff at
Springer Publishing Company for their encouragement and support in
making this project a reality. Most importantly we thank the authors who
contributed to this volume for their dedication to research and practice
on EOL care. Working with them has been a great pleasure, and we have
learned so much from them in the process.
Finally, in memory of those who have gone before, and for those who
will come after, we encourage you to communicate with loved ones and
professional caregivers about advance care planning. We encourage you to
communicate about matters of life and death.
Rogne_10213_PTR_CH00_09-07-13_i-xvi.indd xviRogne_10213_PTR_CH00_09-07-13_i-xvi.indd xvi 7/9/2013 7:41:22 AM7/9/2013 7:41:22 AM
© Springer Publishing Company, LLC.
1
Introduction: A Matter of Life and Death
chapter 1
Leah RogneSusana Lauraine McCune
The principle of respect for autonomy, captured in ideas of negative liberty and noninterference, has a particular appeal in the United States, which is founded on the belief that all people have the right to live as they choose. Autonomy is a formative notion on which U.S. culture and our system of health care is largely based. Such a preoccu-pation with autonomy obscures the fact that we ultimately lack control over aging, illness, disability, suffering, and death. To admit this lack of autonomy is to admit that the human condition is beyond our control; to relinquish autonomy is to acknowledge our deep vulnerability . . . .
Martha B. Holstein, Jennifer B. Parks,
and Mark H. Waymack, 2011, pp. 11–12
At the end of the day, an advance directive is just a piece of paper. But an effective program for advance care planning is an opportunity to help people grow, create meaning, and make their lives (and deaths) better.
Benjamin H. Levi and Michael J. Green, 2010, pp. 8–9
To advocate human conversation as the means to restore hope to the future is as simple as I can get. But I have seen there is no more power-ful way to initiate signifi cant change than to convene conversation . . . .
Rogne_10213_PTR_CH01_09-07-13_01-6.indd 1Rogne_10213_PTR_CH01_09-07-13_01-6.indd 1 7/9/2013 7:41:38 AM7/9/2013 7:41:38 AM
© Springer Publishing Company, LLC.
2 Chapter 1 Introduction: A Matter of Life and Death
It is always like this. Real change begins with the simple act of people talking about what they care about.
Margaret Wheatley, 2009, p. 22
PLANNING FOR ENDINGS
One of the most diffi cult, terrifying, and confusing moments of life is when
a life-threatening accident or illness strikes you or a loved one. Among the
most challenging aspects of these events is that people are faced with deci-
sions about accepting or foregoing, initiating or withdrawing aggressive
medical care. These options require complex decisions.
In the midst of such confusion, patients and their loved ones are not
only confronted with a life-threatening illness and complex decisions about
care; they are also forced to deal with a medical system that they often expe-
rience as unfamiliar and impersonal. At these times, a myriad of perspec-
tives and needs converge. Yet, if plans are not made in advance, patients,
their loved ones, advocates, and clinicians are forced to make decisions
about medical care quickly, under less-than-desirable circumstances.
The growing availability of sophisticated life-support technology only
increases the likelihood of such tough decision making. These evermore
regularly occurring situations call for Americans to face end-of-life (EOL)
decisions before an emergency—to acknowledge their mortality and begin
thinking about and planning for medical care through life and death in
advance. The optimal time to make these decisions is not during a crisis, as
these critical care choices can result in irrevocable consequences.
Our current conceptions in the United States about how health care is
given, along with the consequences of our lack of communicating about
considering medical care in advance, have implications not just for individ-
uals, but also for society as a whole. Due to these conditions, both individu-
als and communities bear the costs—both emotional and physical, as well
as fi nancial—of not planning in advance for the medical care one would
desire to receive at EOL.
THE PROMISE OF ADVANCE DIRECTIVES
Heralded as the Miranda warning for persons considering the EOL (Sloane,
1990), the Patient Self-Determination Act (PSDA) was passed by the U.S.
Congress in 1990 with high expectations for what many thought would be
a new day in which people would be able to exercise personal control of the
dying process.
The PSDA required hospitals and nursing homes to ask people at
the time of admission if they had advance directives (ADs) (a living will
Rogne_10213_PTR_CH01_09-07-13_01-6.indd 2Rogne_10213_PTR_CH01_09-07-13_01-6.indd 2 7/9/2013 7:41:38 AM7/9/2013 7:41:38 AM
© Springer Publishing Company, LLC.
Chapter 1 Introduction: A Matter of Life and Death 3
specifying which procedures or treatments they wanted or did not want at
EOL and a durable power of attorney for health care matters or proxy, in
which they would name someone to make decisions on their behalf if the
patient could no longer speak for himself/herself). The act requires admit-
ting personnel to provide forms for patients to fi ll out and document that
these procedures had been followed.
The hope was that completing living wills and appointing proxies would
lead to a better dying in which individuals’ preferences would be granted
in their fi nal days. Guided by a strong commitment to the ethical principle
of autonomy and the deeply held ideology of individualism so embedded
in U.S. culture (see, e.g., Chapple, 2010; Holstein, Parks, & Waymack, 2011;
Kaufman, 2005), ADs were seen as an extension of personal control on unto
death, after the individual could no longer speak for himself/herself.
By the mid-1990s the rosy glow only half a decade old had begun to dim,
and scholars and practitioners began to question whether this initiative had
had the results it had intended. The comprehensive intervention project
and research report, the Study to Understand Prognoses and Preferences
for Outcomes and Risks of Treatments (SUPPORT), found that the PSDA
had made little difference in whether patients’ preferences were upheld at
the time of death (Teno et al., 1997). Surgeon Tonelli (1996) argued that it
was “time to pull the plug” on living wills, as studies began to indicate
that the documents had not fulfi lled their promise and that dying patients
did not experience a better death for having completed them. Fagerlin and
Schneider (2004) asserted:
A crescendoing empirical literature and persistent clinical dis-
appointments reveal that the rewards of the campaign to pro-
mote living wills do not justify its costs. Nor can any degree of
tinkering ever make the living will an effective instrument of
social policy. (p. 30)
At the same time, Fagerlin and Schneider did not call for the elimination
of living wills. Living wills are appropriate, they said, for some patients;
persons who have a high need for control should be informed about liv-
ing wills and proxies. But the PSDA was bad policy, they argued, and we
should “abjure programs intended to cajole everyone into signing living
wills” (Fagerlin & Schneider, 2004, p. 39).
In an editorial in the prestigious Annals of Internal Medicine, Harvard
professor and physician Joan Teno said it was “time to move on,” citing
the empirical literature showing that having a living will had not reduced
hospital costs at EOL. Nevertheless, Teno stated she didn’t “mean to imply
that advance directives are unimportant” (Teno, 2004, p. 59).
Proxies, by which persons give someone else the legal authority to
make health care decisions for them if they cannot speak for themselves,
Rogne_10213_PTR_CH01_09-07-13_01-6.indd 3Rogne_10213_PTR_CH01_09-07-13_01-6.indd 3 7/9/2013 7:41:38 AM7/9/2013 7:41:38 AM
© Springer Publishing Company, LLC.
4 Chapter 1 Introduction: A Matter of Life and Death
have fared somewhat better. The body of research shows, however, that
too often the surrogates chosen by the individual either do not know they
have been given this responsibility, are poor predictors of what their family
member or friend would want, or refuse to act when diffi cult decisions are
required (Covinsky, Fuller, & Yaffe, 2000; Emanuel, 1995; Tonelli, 1996).
So, 20 years after the PDSA, where are we now and where are we going?
In the wake of strong concerns on the part of practitioners and schol-
ars about the effectiveness of ADs, conversations about EOL planning have
shifted from product to process (Hammes, 2003; Wenger, Shugarman, &
Wilkinson, 2008), from a focus on completion of documents to a focus on
ADs as tools to stimulate communication between patients and families and
their health care providers about EOL care. Advance care planning (ACP)
has come to be seen part of a comprehensive and ongoing approach to edu-
cate ourselves and our communities about dying and death and to provide
knowledge that can help us prepare ourselves, our families, and our society
for a better way to die.
ORGANIZATION OF THIS BOOK
This volume brings together scholars and practitioners from various
disciplines—social workers, sociologists, psychologists, physicians, ethi-
cists, political scientists, nurses, and others—to assess the current state of
efforts to plan in advance for dying and death and suggest paths toward a
more effective approach to death education and EOL care.
The essays in the book are organized into fi ve parts. Part I details the
history and current status of ADs and their use in EOL planning and care,
focusing on current challenges, including resistance to talking about death
and dying, legal and ethical issues, the problem of overtreatment, and the
cultural and spiritual considerations around EOL care. In Part II, authors
discuss a variety of innovative ways or best practices to facilitate meaning-
ful conversations about EOL, and Part III highlights successful initiatives in
ACP. Part IV presents some big picture ideas about the kind of ethical view,
leadership philosophy, and community development orientation it will
take to undertake the kind of cultural transformation necessary to create a
new way to deal with dying, death, loss, and care. Finally, Part V presents
selected resources on death and dying, ACP, and palliative care.
Increasingly in the coming decades, the aging of the population in com-
bination with rapidly advancing medical technologies will force an unpar-
alleled number of people and their loved ones to make unprecedented
decisions about life and death in an age of simultaneously abundant tech-
nology, economic disparity, and strained resources. No forms or legal doc-
uments, no matter how carefully crafted, can automatically guarantee us
the death we want for ourselves or our loved ones. But we can prepare
Rogne_10213_PTR_CH01_09-07-13_01-6.indd 4Rogne_10213_PTR_CH01_09-07-13_01-6.indd 4 7/9/2013 7:41:39 AM7/9/2013 7:41:39 AM
© Springer Publishing Company, LLC.
Chapter 1 Introduction: A Matter of Life and Death 5
ourselves by having the courage to convene conversations about dying,
death, and loss within our families and communities and with our health
care practitioners, as well as by raising the awareness of the entire commu-
nity—of any age, any health status, in any venue—of the centrality of issues
related to death and caring for the dying as a universal human experience.
REFERENCES
Chapple, H. S. (2010). No place for dying: American hospitals and the ideology of rescue.
Walnut Creek, CA: Left Coast Press.
Covinsky, K. E., Fuller, J. D., & Yaffe, K. (2000). Communication and decision-
making in seriously ill patients: Findings of the SUPPORT Project. Journal of the American Geriatrics Society, 48(5), 187–193.
Emanuel, L. L. (1995). Advance directives: do they work? Journal of the American College of Cardiology, 25(1), 35–38.
Fagerlin, A., & Schneider, C. E. (2004). Enough: The failure of the living will. The Hastings Center Report, 34(2), 30–42.
Hammes, B. J. (2003). Update on respecting choices: Four years on. Innovations in End-of-Life Care, 5(2), 1–18.
Holstein, M. B., Parks, J. A., & Waymack, M. H. (2011). Ethics, aging, and society: The critical turn. New York, NY: Springer.
Kaufman, S. R. (2005). . . . and a time to die: How American hospitals shape the end of life.
Chicago, IL: University of Chicago Press.
Levi, B. H., & Green, M. J. (2010). Too soon to give up: Re-examining the value of
advance directives. The American Journal of Bioethics: AJOB, 10(4), 3–22.
Sloane, L. (1990, December 8). 91 law says failing patients must be told of their options.
New York Times. Retrieved from http://search.proquest.com.ezproxy.mnsu.edu/
docview/427916511/fulltext/13B5CAF3F3E78FCD134/1?accountid=12259
Teno, J. M. (2004). Advance directives: Time to move on. Annals of Internal Medicine, 141(2), 159–160.
Teno, J., Lynn, J., Wenger, N., Phillips, R. S., Murphy, D. P., Connors, A. F., Knaus, W. A.
(1997). Advance directives for seriously ill hospitalized patients: Effectiveness
with the patient self-determination act and the SUPPORT intervention. SUPPORT
Investigators. Study to Understand Prognoses and Preferences for Outcomes and
Risks of Treatment. Journal of the American Geriatrics Society, 45(4), 500–507.
Tonelli, M. R. (1996). Pulling the plug on living wills: A critical analysis of advance
directives. Chest, 110(3), 816–822.
Wenger, N. S., Shugarman, L. R., & Wilkinson, A. (2008). Advance directives and advance care planning: Report to Congress. RAND Corporation Report to U.S.
Department of Health and Human Services. Retrieved from aspe.hhs.gov/
daltcp/reports/2008/ADCongRpt-B.pdf
Wheatley, M. (2009). Turning to one another: Simple conversations to restore hope to the future. San Francisco, CA: Berrett-Koehler.
Rogne_10213_PTR_CH01_09-07-13_01-6.indd 5Rogne_10213_PTR_CH01_09-07-13_01-6.indd 5 7/9/2013 7:41:39 AM7/9/2013 7:41:39 AM
Recommended