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

By Fran Smith and Sheila Himmel

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, through gripping stories of real patients, families, and doctors, as well as the corporate giants that increasingly own the market. 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.

• Language: English
• Publisher: Simon & Schuster
• Release date: Oct 28, 2013
• ISBN: 9781936740604

Fran Smith

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.

Reviews for Changing the Way We Die

[loraineo_8 · Rating: 4 out of 5 stars]

I was somewhat familiar with hospice .. but I learned quite a lot of new information. My mother died this past year after 9 years of alzheimer's. My sister, one friend and I cared for her. Toward the end some friends asked us when we were calling hospice.. I wasn't sure when we were 'suppose' to call them. We had not taken her to a dr in over 2 years, no need, no pain , no issues to talk to a dr about.. She just gradually got weaker and died in her own bed after not eating/drinking about 8 days before. I feel we (and she)were ready for her death and not sure if anything would have been different with hospice. I do understand many deaths are so different than hers and I can completely understand the benefits of hospice . This book was very informative. Well written.

[copperkid_1 · Rating: 4 out of 5 stars]

From the outset of "Changing The Way We Die" I talked to people about it and recommended it as with great personal relief I was so thankful for this subject to be presented in such a forthright manner. I do believe this book will be very successful as it is a clear exposition on the choices people can make to be better prepared for their end-of-life experience, and it is relayed via real and personal experiences. The history of hospice care is interesting and revealing giving overviews on the different types of hospice programs available today and how people can be aware of the options that might not be explained to them when they most need to know them. Probably depending on a person's timely need to know, this may or may not be a page-turner, but at any level it is an excellent guide.

[liz.mabry · Rating: 3 out of 5 stars]

I received this book for free as part of LibraryThing's Early Reviewer program; this review is not affected by this fact.I'm not sure "enjoyed" is a good word for this book, since it's definitely not an easy read - but it is worth reading and I'm glad I did. I appreciated the use of different families' stories, although some were heartbreaking and really hit home, having experienced the death of my grandfather-in-law in a less than ideal way. The information on the origins and original goals of hospice was fascinating, and led me to search out other information (there's a fascinating documentary about Bethesda Hospice produced by the BBC that I highly recommend, if you can find it). I've been encouraged to start/continue conversations with my wife, parents, and in-laws about what we really want to happen as time goes on. Not easy, but necessary.

[jec27 · Rating: 4 out of 5 stars]

A comprehensive overview of hospice care, including its history and the impact of government regulation (Medicare, Medicaid) as well as positive and negative consequences of big business involvement in the field. For anyone concerned about easing emotional and physical pains, the real life stories from the perspectives of family members of actual patients offer the most compelling reasons for making hospice care an option for self or loved ones facing death. The authors' apparent support for the ACA may or may not be warranted depending on the law's ultimate political fate.

[dallenbaugh_1 · Rating: 4 out of 5 stars]

The authors introduce us to the growing hospice movement by stating that "Hospice is not a place but a philosophy about living, dying, and dignity, and a set of practices to ease suffering." They also state that "Hospice is the most successful segment of the health care system, in family satisfaction and cost effectiveness, yet it is widely feared and misunderstood." They have divided their book into four main sections. The first part introduces us to the concept of hospice and why it often makes sense as a choice for the terminally ill, how it began with stiff opposition from the standard medical community, and how it offers hope to those who can no longer be cured, but who want to continue living as well as possible and to die with dignity and with positive support for their own wishes as to how to manage their final days.The second and third parts introduce us to the patients who have benefited from their stay in hospice care and to the surviving families who have benefited by the continued involvement from hospice in helping them handle their grief.Finally, the last part deals with the new directions happening in the hospice movement where not for profit groups often have been taken over by for profit corporations where the standard of care is sometimes subsumed by the need to cut costs for the "bottom line" and thus make more money for their shareholders.The authors for the most part gave a balanced view of the hospice movement emphasizing its strengths, and noting its detractors, and were not afraid to mention times when the movement failed its patients. The patients' and families' stories gave the most convincing reasons to consider hospice while the history of the takeover by large corporations could have been shortened and in some ways made one doubt the ability of hospice in the future to carry out its stated goals of compassionate and complete care for the dying at the end of life

[kmt01_1 · Rating: 5 out of 5 stars]

I think anyone caring for an aged loved one or a loved one who has an illness that will probably result in death should read this book. I did not know much about the hospice movement before reading it, but now, after reading it, I have a whole new understanding and appreciation of this important movement. The authors have presented, with many compelling and interesting stories as well as great, sound research and investigation, a very good primer on what hospice care provides its history and its future. I liked the approach of the authors took throughout the book, as well as the way they brought home the true meaning of the hospice movement and its impact on our society. I was particularly interested in the fact that the movement involves the whole family, not just the patient involved and that the movement advocates palliative care as the only real way to go. I know I would prefer this. This book can hopefully shift attitudes and ideas people have about end of life care for themselves or for loved ones, because I think it is a necessary shift, based on what I am seeing around me. Yes, the basic, overall subject of death can be depressing, but it is one we all must begin to think about sooner or later. Having this book as a reference can definitely help in the decision-making process. I think anyone who wants to explore this subject further, or who wants a basic understanding and/or understanding of what hospice is all about should read this book. In addition, medical professionals and social workers who deal with these issues should definitely read this book, as it can provide great information and fill in any gaps they may have. I received this from Goodreads to read and review.

[jennifer35k · Rating: 5 out of 5 stars]

At this point in my life I have been facing some major decisions and most are very difficult. Many have to do with my elderly grandmother that is suffering from the disease known as Alzheimer's. It has destroyed both her mind and her spirit and has left a shell of a being that we hardly recognize. At this moment in time we are in the process of preparing her for hospice. In desperation I have sought out information from my local library, since my other relatives are deceased. I never thought that I would have to make end of life decisions for a grandparent at the age of 35. This book has been a tremendous help for me and has allowed me to ask questions of both the home health nurse and hospice nurse. It has brought comfort in the idea that I know that my grandmother will be given an opportunity to transition with dignity. I support the concept that elders should be allowed to pass away in their home if possible. If you have a loved one that is entering the hospice program than this book is a must read. There is so much stress involved when it comes to the end of stage life, that it really helps to have some extra advice on the side. Death does not have to be scary for either the family or the person transitioning. I highly recommend this book to both caregivers and family members.

[bevfuller · Rating: 4 out of 5 stars]

"Changing The Way We Die" is a great book! We need more care and compassion for the people who are preparing to leave this life. Everyone should read this book.

[bobbieharv · Rating: 3 out of 5 stars]

I've been a hospice volunteer for over ten years, and so I was pleased to receive this book, and interested to read it. However, I was a little confused by the structure and couldn't quite figure out what it was trying to accomplish. I know it was supposed to be an introduction to hospice for people who may have been unfamiliar with it, but it seemed too random, too unstructured, too digressive and crowded with examples to have succeeded in this goal. For example, I would have expected Part Four, "The Providers," to give an overview of the members of a typical hospice team, giving the responsibilities of each member and perhaps followed by some case history examples. Instead, the first chapter heading is "The gift of grace," where we jump from two patients who thought they didn't want spiritual care, to Cicely Saunders, founder of hospice; to a very short (less than a page) digression about volunteers; back to spirituality and chaplains; to Dignity Therapy and some initially resistant patients; and finally back to spirituality and prayer. Perhaps that whole chapter was supposed to be about spiritual providers; as the next short chapter, "A new course for doctors," was about hospice doctors. But then the next chapter, "Dying for dollars," is about for-profit hospices - so I guess my assumption about what was meant by providers was wrong. This review is similar to the book: digressive, littered with specific examples that don't really address what I'm trying to say. As is evident, I was left with a jumbled mind.

[snash_44 · Rating: 4 out of 5 stars]

The book tried to cover a massive topic with examples. As such, the book was appropriately human and personal but it left me wondering how different the message would have been with different examples. Despite that, it made me think and dispelled various misconceptions I had about hospices so it fulfilled its goal perfectly.

[cissa_5 · Rating: 5 out of 5 stars]

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.

[mkboylan · Rating: 5 out of 5 stars]

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.  These are addressed from the patients' perspective and experience as well as the family's, with hospice workers to clarify choices and options and help smooth family disagreements. Hospice means the end to curative care and the movement to palliative care, which can be difficult to face and for families to reach agreement about.The survivors are offered extensive support during and after the death of the patient, for a minimum of a year, depending on the program.The last section of the book, about providers, was very interesting to me.  It traces the growth of hospice from the work of individual, usually voluntary workers, to its current state as big corporate business.  When one particular hospice worker came to believe that the movement could not survive financially without more support, he first worked to develop rules and regs for the industry, and then pushed for legislation for medicare to cover hospice care.  When that passed and it became evident a LARGE amount of money was about to become available, investors and corporations became interested in getting their piece of the hospice pie and companies like VITAS were formed.  It is the largest one today (and the one that provides services for my mother).  Of course there has also been a field day for the attorneys and more than  one lawsuit has been filed against VITAS and other providers.I found the financial aspects of hospice and medicare to be VERY interesting especially because I recently saw an article in the press about hospice care "draining large sums of money from medicare".  After reading this book I don't believe that to be the case.  There are many aspects of finances that come into play and are examined by Smith and Hillel, who cite their sources.  It appears that hospice care actually costs less than not having hospice care.  Interestingly, patients who use hospice early enough actually live longer by 37 days.  Medicare is no longer paying for curative treatment and there are typically no more long, painful, expensive and repeated trips to the hospital.  This is probably clear to anyone who has ever received a hospital bill.  In my mom's case, she was repeatedly falling and every unobserved fall in her facility meant a trip to the ER due to their regulations.  She did not need ER treatment and the experience was frustrating to everyone involved,  from the responding emergency personnel who were by then on a first name basis with her, to the ER personnel and docs, not to mention my mom who hated it.  Now if she falls (several safety measures have been put in place) rather than a 911 call, her facility calls hospice and the nurse comes out and assesses her and she gets to stay at her place.  There is a lot more to the financial piece and the story is well told by the authors and makes interesting reading.  It is a quick course in how medical care and philosophy become institutionalized.  Hospice is considered by many to be the most successful part of the U.S. health care system and many wonder why we can't extend some hospice policies to the rest of the system.This book was a five star read for me, to my surprise.  I also found it hopeful and encouraging.  We may not have control over our deaths, but hospice can give us more choices as to how we live out our remaining time.This review is from an Advanced Reading Copy I received from the publisher.