Rogne 10213 [email protected] - Nexcess CDNlghttp.48653.nexcesscdn.net/80223CF/springer-static/media/sample... · hile advance directives hold a great deal of promise for ensuring

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

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RogneM

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© Springer Publishing Company, LLC.

Advance Care Planning

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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.

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Advance Care Planning

Communicating About Matters of Life and Death

Leah Rogne, PhDSusana Lauraine McCune, MA, CT

Editors

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Copyright © 2014 Springer Publishing Company, LLC

All rights reserved.

No part of this publication may be reproduced, stored in a retrieval system, or transmitted

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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

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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

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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

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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

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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

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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


Dena Jean Sutermaster, RN, MSN,

CHPN

Director of Education Products

Hospice and Palliative Nurses

Association


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

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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

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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.


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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

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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.

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1

Introduction: A Matter of Life and Death

chapter 1


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 . . . .

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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



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,



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



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.

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