By Elena Kadvany
What do you want to do with the rest of your life?
It's a question normally reserved for high school students or recent college graduates. But in "Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement," co-authors Fran Smith and Sheila Himmel maintain this is an invaluable question to ask those facing death.
The question is at the core of hospice, an alternative form of care for dying patients who likely otherwise would spend the rest of their lives in and out of a hospital, undergoing endless intensive treatments and draining their families' energy and resources.
Hospice care is a generally misunderstood concept, Smith and Himmel explain. It's not a place people go to die; most hospice care is actually provided in a patient's own home. It's also not — or at least, it shouldn't be — a last resort. If hospice care spans months instead of a few weeks or even days, patients themselves can decide how they want to spend the rest of their lives.
This book — which is one part history, one part personal testimony, one part journalism — is meant as a resource for families or anyone who will inevitably face end-of-life care decisions, Smith and Himmel said.
"We say the book is what you need to know before you need to know it," Smith said. "The time to think about the choices that you want to make for yourself (and) the time to communicate with your family about those choices is really before the crisis. There's such a difference for people who have thought about these things and discussed them and made their wishes known."
Smith and Himmel, both journalists who used to work together at the San Jose Mercury News (Smith now lives on the East Coast; Himmel lives in Palo Alto and is one of the Voice's freelance restaurant reviewers), personally experienced this difference. Both lost their fathers around the same time.
After a years-long, painful decline, Smith's father died in a hospital, without hospice care. He had "vanished long before he died," suffering from dementia and "almost complete physical incapacity," Smith writes.
Himmel's father also went through years of ambulance trips back and forth to the hospital toward the end of his life, but her family eventually opted for hospice care at the prompting of his nursing home. He was brought home, where, ever the socializer, Himmel said, he would receive friends and family who came to visit. His medications were simplified, and there was no more pressing to take him to occupational therapy.
"Immediately, the level of anxiety for the whole family really lifted because of all the services that hospice offers," Himmel said. "But the main thing was they can tell you what's normal and what to expect. And you can call them at any time. As opposed to Fran's experience, which was (that) nobody mentioned hospice to them."
"Even though for both of us it was a big loss and a very sad experience, in Sheila's case there was just a lot of support and a lot of understanding about what to expect," Smith said. "That, we really didn't have."
The book is divided into four sections: "The Choice," "The Patients," "The Survivors" and "The Providers." The beginning of the book is mostly history driven and the rest more personal with individual patients', families' and doctors' stories.
"We kept trying to put ourselves back into the mindset of a reader, of a family member who might need this book," Himmel said of the book's structure. "How would it make sense to read it? We tried to organize it so if you're not interested in history, skip it. Or if you're not interested in business, skip it. If you're not interested in personal stories, skip that.
"We also really tried to make it flow, but we also were aware that you don't have to sit down and read the whole thing in order or read every chapter either."
The first part dives into hospice's more recent history, which goes back to England in the late 1800s and early 1900s. Cicely Saunders — a social worker, physician and founding mother of the hospice movement — "believed that all decisions about care should be driven by the wishes of patients, not by the opinions of specialists or the convenience of nurses or the rules of hospitals, government health programs, or insurance companies," Smith and Himmel write.
Saunders also coined the term "total pain," or the concept that one's end-of-life pain is not exclusively physical, and care must be developed accordingly.
These ideas became the foundation for modern hospice care, which Smith and Himmel best define as "patient-directed end-of-life care."
The practice was introduced in America in the 1960s, after which it eventually morphed from a grassroots, not-for-profit movement into a multi-billion-dollar industry. A growing clash between the root philosophies of the hospice movement — compassion, holistic care, humanism, respect for patients — and dollar-sign-driven pragmatism have definitively shaped today's hospice offerings. That clash manifests in the roles that Medicare and insurance play in hospice. "Changing the Way We Die" explains that in detail, providing what is surely much-needed clarification for many families and patients.
The book's two middle sections focus on people Smith and Himmel interviewed, from a 39-year-old man with kidney cancer that spreads to much of his body to a 94-year-old man with an endless list of health issues who decides to forgo food and drink and essentially fast to death. There are also numerous stories about widowed spouses, bringing to light the impact different end-of-life care can have on family members as well as invaluable bereavement services offered through hospice.
In the vein of hospice's foundational values, these chapters start with the hospice-related part of each individual's story but then rewind and tell the story of who they are beyond their end-of-life experiences.
Both authors said when they set out to do the book, they decided they would only use people who would agree to full disclosure.
"A lot of books like this use pseudonyms or composites and we really didn't want to do that," Himmel said. "Being journalists, we wanted to make this book different in that people reading it would know that these are real people. We're not making them up. And these are real people like you who have struggles and they're not Mother Teresa or anybody holy; these are just regular people and this is how it worked for them."
Himmel and Smith said they didn't have trouble doing this; many people wanted to talk about their different experiences.
"As reporters, we're used to talking about experiences that were not good experiences but in this case, people really wanted to share what they knew and in large part wanted to do it because family members came out of hospice situations saying, 'I wish I had known about this sooner.' And they were really eager to pass along that knowledge."