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Changing the Way We Die: Compassionate End of Life Care and The Hospice Movement Paperback – November 19, 2013

4.7 out of 5 stars 31 customer reviews

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Editorial Reviews

From Booklist

“Nobody wants to die badly.” With that opening line, cowriters Smith and Himmel proceed to persuasively explain why no one should ever have to. Hospice is a philosophy and program that maximizes the quality of remaining life by delivering compassionate care with a holistic approach. Its focus is on easing suffering. In addition to medical and nursing services, hospice provides assistance with practical needs, counseling, and bereavement services. Volunteers play a huge role. Over 400,000 individuals volunteer at more than 5,000 hospice programs in the United States. Hospice has grown into a $14 billion industry. Medicare, Medicaid, and many private health-insurance plans cover hospice services for individuals whose life expectancy is six months or less. Many people still wait too long to enroll. The history of the hospice mission and its evolution in America are well summarized. Smith and Himmel provide inspiring stories about patients, families, physicians, and the entire hospice experience. When the time comes, most Americans prefer to die at home, devoid of pain and surrounded by loved ones. As this book reveals, hospice can help. --Tony Miksanek

Review

"America avoids death. From our obsession with youth to our heroic medical model, death is often viewed as giving up. Yet despite a culture of denial, the hospice movement, which helps families face the last stage of life with intention, compassion, and respect, has continually grown since 1963. Free of the often torturous medical attempts to cure old age or terminal illness, hospice offers palliative home care and seeks to restore control and dignity to the dying while providing support and respite to their loved ones. Health-care writers and activists Smith and Himmel chronicle the hospice movement and share stories of the dying and their caregivers, illuminating the benefits of this model. Also delineated are the issues associated with the encroachment of for-profit hospice—Wall Street knowing a Medicare bonanza when it sees one. By explaining the hospice alternative to the more common hospital death, the authors ask us to consider our own deaths and how we will go about making decisions when end of life is not just inevitable but imminent. They propose that hospice offers choice, freedom from pain and suffering, and perhaps even joy during those last days. This book belongs in every public and health-care library in America."
Library Journal, Starred Review

"Changing the Way We Die offers a bracing introduction to hospice at a time when an aging nation needs to consider alternatives to expensive and often inhumane traditional medical practices."
Bloomberg Businessweek

"There are few terms related to aging that cause as much discomfort as “hospice care.” Perhaps be- cause of this uneasiness with the topic and, by relation, our own mortality,
many put off end-of-life care until they are too sick to get the most out of the services it provides. Fran Smith and Sheila Himmel acknowledge these common feelings but hope that their book, Changing the Way We Die, will “lift hospice out of the shadows” of fear and misunderstanding."
–Health Affairs

Changing The Way We Die is different from other end-of-life books in that its case studies are of real people — not composites — and that it sets the hospice movement in context, addressing its history and development in America."
San Francisco Examiner

"Practical advice for those facing end-of-life decisions."
—The Catholic Voice Oakland

"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."
New Consciousness Review

"Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement should be required reading for physicians, nurses, and anyone else—professional or volunteer—who provides care to those who are dying."
ForeWord Reviews

"With abundant personal stories, information and discussion, Smith and Himmel present a sweeping look at what hospice means to patients, caregivers, communities, and to the changing face of health care in our nation."
Light of Consciousness

"This book is a vital and uplifting resource for people facing life's most challenging moments."
—Richard Brendan

“Nobody wants to die badly.” With that opening line, cowriters Smith and Himmel proceed to persuasively explain why no one should ever have to. … Smith and Himmel provide inspiring stories about patients, families, physicians, and the entire hospice experience.
—Booklist

"Two excellent journalists write about the history and the modern ways of the hospice movement."
—Regarding Arts

"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

"As one of the first volunteers with the San Francisco Hospice, as someone who speaks at hospice conferences on a regular basis, and, as someone whose wife died when there was no hospice care, I know about the hospice arena. I also know that this book is a gem in that world. With information about the hospice movement and personal heartwarming stories from providers, patients and their families, this insightful book will convince you that hospice is not about giving up but about getting the best, most compassionate care. A must-read for anyone dealing with end-of-life issues.–
Allen Klein, MA, CSP, author of Learning to Laugh When You Feel Like Crying: Embracing Life After LossInspiration for a Lifetime

"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
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Product Details

  • Paperback: 288 pages
  • Publisher: Viva Editions; 1 edition (November 19, 2013)
  • Language: English
  • ISBN-10: 1936740516
  • ISBN-13: 978-1936740512
  • Product Dimensions: 0.8 x 5.5 x 8.2 inches
  • Shipping Weight: 10.4 ounces (View shipping rates and policies)
  • Average Customer Review: 4.7 out of 5 stars  See all reviews (31 customer reviews)
  • Amazon Best Sellers Rank: #506,418 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Paperback
When Smith and Himmel lost their fathers around the same time, one of them had a good experience and one not so much.  They decided to do some research on hospice, and attempt to find out just how successful hospice care is.  This is a comprehensive look at hospice from four perspectives, first examining the philosophy and history of hospice care.  This section is followed by examining hospice from the experience of the patient, and then of the survivors.  Finally, the history and role of providers of hospice care is examined.  These four sections are told both factually, with resources listed, and illustrated also with personal stories and experiences, which makes for some very interesting reading.  You will read stories about marriages that come out of survivor groups, as well as medicare regulations.  A LOT of information is packed into this very readable 200 page book.  Although I have studied death and dying, it was years ago in college and I wanted an update because my mother is currently dealing with Parkinsons/Lewey-Body and has been in hospice care for five months, in an assisted living facility. When I first became aware of hospice it was mostly a volunteer non-profit service; I had no idea that medicare covers it today.

The most important aspect of hospice philosophy addressed is that the patient gets good palliative care and makes her own choices about how she wants to live the rest of her life.   We will all die, but we can make SOME choices, IF we do so early enough, about our deaths.  That is do we want to be in a hospital, a hospice setting, or at home.  How do we want to utilize pain meds, who do we want as visitors or to care for us physically, and, what kind of life-extending care do we want.
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I've heard of hospice care for a good many years now, but was never sure exactly what it meant. As someone nearing retirement myself, and with several aging family members, I was very glad to read this book and learn more, for my own sake and for theirs.

The book contains a solid history of hospice care, as well as information about what it generally does and does not do, and various accounts of people who it has helped. I think the things that struck me the most is that it tr5ies to include the entire family in the process, not just the "patient", AND that most hospices advocate strongly for palliative care; they are not concerned that someone with only weeks to live might get hooked on opiates and so would rather let them suffer. I know that would be a relief to me if I had a painful and fatal disease!

A small quibble: the structure of the book could have been more cohesively organized. In some chapters it veers from modern practice to history, to case study... and then veers around again. I found that awkward to read.

Still- it's a very valuable book that gives a clear look at the current and historical hospice movement, and what it means to individual people and families.

Note that I got an ARC of this book from VIVA Productions.
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Two fathers died; two daughters grieved — with unanswered questions. As former colleagues, they did what accomplished journalists do.They reported for two years and found answers in the stories of other daughters and sons and parents and spouses. After you read their book, you will encourage your father, your mother, your sibling, your child to read it and then talk about it. You will check out hospice availability in your area. You will throw away the boilerplate advance directive your lawyer attached to your will. You will write your own — a first draft, subject to revision.
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There are so many misconceptions surrounding hospice - this book clarifies in an easy to read, real life way. The time to make decisions about how we, each one of us, chooses to spend our final days is now. Fran Smith and Sheila Himmel have taken a topic that can be difficult to discuss and provides the tools we all need to make the right choices for ourselves, less the fear factor. It is written in a way that we each can relate. The stories are real, soulful and yes, even inspiring. Take the time to read this book now so you aren't in panic mode later. Learning today will save a lot of suffering and heartache later.
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Hospice and palliative care provides opportunities for end-of-life choices for the patient and their families/friends/other loved ones.

The life stories told in the book are a good reminder to enjoy your life and your family daily -- to appreciate each individual for their uniqueness. When assisting in caring for a loved one, provide the care with compassion; understanding the patients wants and desires. The Go Wish cards are mentioned briefly -- a great way for families to understand what is important for the patient. My wishes are to have an advocate that knows my values & priorities, to be free of pain, and to be free of anxiety.
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I'm not sure "choiceful," as on the cover, is a word. Sounds kind of Stephen Colbert-ish. But anyway, this book is great if you want to think about death. Well, nobody WANTS to think about death. That's kind of the point of why hospice care is desperately needed. But since you're going to die whether you want to think about it or not, you might as well read this book and find out how other people have gone about it. This book is well-written and contains both "hard" information and "soft" personal narrative.
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