Changing the Way We Die: Compassionate End of Life Care and The Hospice Movement

by Fran Smith, Sheila Himmel, Joan Halifax (Foreword by)

Overview

There’s a quiet revolution happening in the way we die. More than 1.5 million Americans a year die in hospice care—nearly 44 percent of all deaths—and a vast industry has sprung up to meet the growing demand. Once viewed as a New Age indulgence, hospice is now a $14 billion business and one of the most successful segments in health care. Changing the Way We Die, by award-winning journalists Fran Smith and Sheila Himmel, is the first book to take a broad, penetrating look at the hospice landscape.

Changing the Way We Die is a vital resource for anyone who wants to be prepared to face life’s most challenging and universal event. You will learn:

— Hospice use is soaring, yet most people come too late to get the full benefits.
— With the age tsunami, it becomes even more critical for families and patients to choose end-of-life care wisely.
— Hospice at its best is much more than a way to relieve the suffering of dying. It is a way to live.

Winner of the 2014 Independent Publisher Award Silver Medal in Aging/Death & Dying

Product Details

ISBN-13:	9781936740512
Publisher:	Cleis Press
Publication date:	11/19/2013
Pages:	288
Product dimensions:	5.50(w) x 8.20(h) x 0.80(d)

About the Author

Fran Smith is a writer, editor, writing coach, and communications consultant. Her work has appeared in O, The Oprah Magazine; Redbook; Salon; Good Housekeeping; Prevention; Health; the Los Angeles Times; USA Today and dozens of other publications and websites. She has won many awards for medical reporting, health care investigations, and feature writing, and shared a Pulitzer Prize as a reporter at the San Jose Mercury News. Fran co-authored the first reporters’ guidebook published by the Association of Health Care Journalists, and she is a frequent speaker on the power of storytelling, health care writing, and effective communications. A history buff, she is also the author of Breaking Ground: The Daring Women of the YWCA of the Santa Clara Valley, 1905 – 2005. (YWCA: 2005). She lives in New York.

Sheila Himmel is a Psychology Today blogger and co-author of Hungry: A Mother and Daughter Fight Anorexia (Penguin, 2009). She is a contributor to Restoring Our Bodies, Reclaiming Our Lives: Guidance and Reflections on Recovery from Eating Disorders (April 2011). Sheila writes for publications ranging from the New York Times to Eating Well to IEEE Spectrum: The Magazine of Technology Insiders. Her work has appeared in USA Today, the Washington Post, the Robb Report, M Magazine, and the online magazine Obit.

As a restaurant critic of the San Jose Mercury News, Sheila won a James Beard Foundation Award for feature writing. She won awards from the Association of Food Journalists and the Associated Press News Editors Association, and uncovered fraud at a prominent Silicon Valley restaurant, revealing its longtime substitution of pork for veal. She lives in the San Francisco Bay Area.

Activist, anthropologist, author, caregiver, ecologist, LSD researcher, teacher, and Zen Buddhism priest — Joan Halifax is many things to many people. Yet they all seem to agree that no matter what role she plays, Halifax is consistently courageous and compassionate. Halifax runs the Upaya Zen Center in New Mexico, a Zen Peacemaker community she opened in 1990 after founding and leading the Ojai Foundation in California for ten years. Her practice focuses on socially engaged Buddhism, which aims to alleviate suffering through meditation, interfaith cooperation, and social service.

As director of the Project on Being With Dying, Halifax has helped caregivers cope with death and dying for more than three decades. Her book Being With Dying helps clergy, community activists, medical professionals, social workers and spiritual seekers remove fear from the end of life. Halifax is a distinguished invited scholar of the U.S. Library of Congress and the only woman and Buddhist on the Tony Blair Foundation’s Advisory Council. She resides in Santa Fe, New Mexico.

Read an Excerpt

Chapter 1

What Do You Want to Do with the Rest of Your Life?

ALL ALONG, doctors differed on Rusty Hammer’s prognosis. One told his wife, Pamela, “If he lasts five years, he’ll be lucky.” Another kept reassuring Rusty, “You never know. You’re doing fine. Just get more rest.”
He did last five years, and Pamela will always wonder whether the treatment was worth the torment.
Rusty was diagnosed with acute myelogenous leukemia, a rare and aggressive blood cancer. By the time he died, on Monday, Jan. 28, 2008, he had taken more than 250 medications, received more than 350 blood transfusions, had a stem cell transplant, and spent nearly 600 nights in six different hospitals. He developed severe diabetes and osteoporosis, heart and lung failure. He needed an oxygen tank to breathe and a shunt in his brain to relieve the pain. Visiting the doctor took all day, with the wheelchair, the drive, managing a hospital bed on the other end. It left them both exhausted, and hopeless that their family’s suffering would ever end.
But hospice care brought them comfort and calm. In the last six months of his life, Rusty enjoyed the company of family and friends. He explored his religious heritage. He wrote a book, and in a strange way he also became the author of his own experience — a person again, not a medical record number or an object to be handed from one specialist to another for yet another blast of debilitating treatment. The hospice team listened to him. Pamela found herself becoming a better listener, too.
This was not how Rusty thought of hospice when a friend first suggested it. He did not imagine an opportunity to reclaim his life, let alone do something new or grow. He thought of hospice as a place you go to die, and he was appalled.

Table of Contents

Foreword Joan Halifax, Ph.D. xiii

Introduction xv

Part 1 The Choice 1

1 What Do You Want to Do with the Rest of Your Life? 3

2 Birth of a Movement 13

3 Cure Versus Care 33

Part 2 The Patients 49

4 Evelyn Landes: House Calls 51

5 Alice and Ying Wun: A Fragile Family Peace 63

6 Peter Serrell: Final Fast 73

7 Fred Holliday: Inside the Catch-22 of Hospice 83

Part 3 The Survivors

8 Up from the Abyss 97

9 Turning Points 109

Part 4 The Providers 119

10 The Gift of Grace 121

11 New Course for Doctors 135

12 Dying for Dollars 149

13 Cultural Revolutions 167

14 Not If, But When 177

Reflections 187

Acknowledgments 193

Notes 195

Index 217

About the Authors 225

Editorial Reviews

"As a former hospice volunteer, I am thrilled to recommend Changing the Way We Die. Finally there's a spotlight on a crucial conversation which has the potential to reduce the suffering of millions of people at the end of life. A must read for anyone with elderly parents as well as those who want to be choiceful about their own lives."
–MJ Ryan, author of Attitudes of Gratitude, The Power of Patience, This Year I Will....

"This beautiful book opens the lid on one of the most important treasures in our lives—how we can change the way we die. The book reminds us that we often can choose to enter the embrace of hospice, with its deep roots in the heart of compassionate care. Hospice in the United States has been a movement as well as a practice. Dedicated, sensitive professionals and volunteers bring love and care to those who are facing death, in their homes, hospital rooms, and freestanding hospices. The words of patients and hospice people that fill Changing the Way We Die reflect great wisdom and self-honesty."
–Joan Halifax, Ph.D, author of Being With Dying

Hospice is one of the truly humane innovations in our culture, and Changing the Way We Die not only shows why, it demonstrates the importance of treating death as part of the great mystery and privilege of being alive."
–From Sue Halpern, author, A Dog Walks into a Nursing Home

"There is nothing to be afraid of, within the pages of Changing the Way We Die, but there is a great deal to be learned. Using compelling stories about people from all walks of life, this book offers a preparatory primer for people contemplating the final chapter of life for themselves or their loved ones. It will also help those who struggle to understand the medical care that their loved ones received in their later days. And it provides a calm and persuasive case for greater compassion toward people who are seriously ill, and those who care for them. If you invest a few hours in reading this book, it will help you avoid months of suffering for people you love in the days to come.”
– Stephen P. Kiernan, author, Last Rites: Rescuing the End of Life From the Medical System

"My interest in the hospice concept began in 1978 and hospice has been my passion ever since. I watched and participated in its birth and have grown right along with its continued evolution. When I started reading Changing the Way We Die, Sheila and Fran had me from the introduction and I was riveted to the last page. The book is thoroughly researched and documented. It is a comprehensive look at the Hospice movement from its idealistic inception in the 70’s to today with its many challenges.
Changing the Way We Die is accurate and detailed. What lies upon its pages so needs to be said, examined and hopefully addressed. I highly recommend this read for anyone directly or indirectly involved with end of life issues. I guess that means everyone since all of us have to deal with end of life sometime, for ourselves or those we care about."
–Barbara Karnes, RN, author of The Hospice Blue Book

"For an experience that is universal, the act of dying remains one of the least discussed aspects of American life. Changing the Way We Die is a welcome addition to a growing body of work that documents the benefits of hospice care. Inspired by the very different deaths of their fathers, journalists Fran Smith and Sheila Himmel embarked on an investigation of what is now a $14 billion industry, interviewing patients, survivors and providers, and asking those at the doorstep of death: What do you want to do with the rest of your life? For even the frailest and sickest, there are choices. Enhancing the quality of life that remains is the principle of hospice, and this book is a valuable contribution toward the authors’ goal of lifting hospice out of the shadow."
–Eleanor Clift, author, Two Weeks of Life: A Memoir of Love, Death and Politics.

"Changing the Way We Die honors patients, their families, cultures, and values. Many misunderstood concerns about dying are addressed. Most of all, this book celebrates the end-of-life dignity to which every person is entitled. I highly recommend this enlightening resource that adds significant layers of practical knowledge to death journeys everyone will experience."
—Frances Shani Parker, Author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

"A wonderful book, full of captivating stories of peoples' lives. Fran Smith and Sheila Himmel tell the marvelous story of the history of hospice and rightly raise concerns about its destiny. As a clinician with almost 30 years of hospice and palliative care involvement, I urge readers to dig in, appreciate the writing, and learn from the lessons shared here."
–Perry G. Fine, MD, author, The Hospice Companion

"With almost four decades of steady growth since the first U.S. hospice program opened in New Haven, misconceptions still abound about this model of care designed to make life’s final chapter free of pain, peaceful and fulfilling. Patients, families and many clinicians still think it is a place where you go to die—and only after you have given up all hope for the quality of remaining life—instead of a highly skilled care team that comes to your home. The cost of those misconceptions is untold pain and suffering for patients receiving futile medical treatments in hospitals and ICUs, and the frequent complaint, “Why didn’t we know about hospice sooner?” Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement, a new book by journalists Fran Smith and Sheila Himmel, attempts to shed light on these murky misconceptions with lots of stories about real people. Starting with their own fathers’ deaths, one with hospice and one without, the authors make it clear that dying is usually messy, ambiguous and difficult. But that’s our birthright. They also show the ways that hospice can make the final chapter a time of poignant and meaningful farewells and wrap-ups.

They emphasize hospice as a way to live—not a failure but an inevitable passage—once we “acknowledge that dying is not ‘if’ but ‘when.’” Finally, they delve into the unfortunate current complexities of profit-driven hospice companies and government crackdowns on hospice profiteering—both of which make it harder for the terminally ill to get the right help at the right time. But armed with the information in this book, readers may be better equipped to make choices that could allow the richness of living at the end of life that hospice at its best can help to facilitate."
–Larry Beresford, medical journalist and author of The Hospice Handbook

From the Publisher