A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death provides a compass for navigating the process of dying in the United States. The book was co-authored by Dr. BJ Miller, a palliative care and hospice physician, and Shoshana Berger, a freelance writer and senior director at IDEO, a global design company. Berger’s experience with her father’s slow and excruciating passage toward death augments the book.
The authors believed that having someone from both inside and outside the medical profession telling this story would lend a better perspective on the subject. They stated that they wrote this book “to help make dying something we can get to know a little better.”
Miller became a doctor largely due to his experience of a near fatal accident in which he was electrocuted and lost both legs below the knee and half an arm. At the age of 20, Miller learned firsthand about the struggles and humiliation experienced, and the patience required, when one is rendered suddenly and completely vulnerable and dependent on others to accomplish every task. This experience changed the course of his life and thus began his “formal relationship with death.” According to Miller, “I got close enough to see something of death and to come back from the ledge, only to realize that it’s in and around us all the time.”
Berger’s father was only 73 when he began exhibiting signs of dementia. He spent the next 5 years in and out of hospitals, sometimes bedbound. At the end, his wife was reluctant to request hospice care because she thought that such a request meant giving up. Berger despaired because her father had not planned for his death. She wished that he had been able to show his family how to give him the death he wanted.
The authors wrote the guide for a broad audience, including those who have received a serious medical diagnosis, and their caregivers and friends. It also includes elders, whose slow and often sad decline wrings the hearts, minds, and pocketbooks of loving spouses and families. The guide is extremely well organized and extensively researched yet quite accessible.
Three themes are explored throughout the book’s 24 chapters: First, people are entitled to control their own lives and determine the parameters under which they die. Second, people need information to do this well, and knowledge is power. And finally, help is out there. The authors recommend that people learn to ask for help, even before they think they need it.
The guide is organized into five sections: Planning Ahead, Dealing With Illness, Help Along the Way, When Death Is Near, and After. The guide is as pragmatic as its title promises. In the first section, Miller and Berger encourage patients not to “leave a mess” but instead to take the opportunity to set their own houses in order, whether those houses be emotional, spiritual, or financial. The authors then outline critical paperwork, with discussion ranging from advance directives to the differences between wills and trusts. The authors present an extremely helpful explanation of the distinctions between palliative care and hospice care services. Since Miller is himself a palliative care and hospice physician, his perspective and insights are an invaluable resource for the elder law practitioner.
The chapters focusing on life and death in a hospital setting lend clarity to what often appears to be a chaotic world. The authors cover everything from what to expect from admission to an emergency room to transfer to the intensive care unit and what to expect during what can become an interminable hospital stay. Berger and Miller take pains to outline who the players are and explain the hierarchy in a hospital setting, clarifying, for example, the distinction between the roles of the hospital physician and primary care physician. They admit that doctors themselves often cannot identify the appropriate family member with whom to communicate. The authors suggest that readers learn how to talk to doctors. “Ask three questions, not ten. And make sure they’re written down."
We as elder law attorneys are counselors to families that often are mired in hospital settings. The authors inform readers that they can ask for a quiet room for a dying patient or request that blood not be drawn during the night so that the patient can get a better night’s rest. Miller and Berman, while sympathetic to the desire of most patients to die at home, also make a point of stating that “[d]ying in the hospital isn’t a failure, even if it was [the patient’s] hope to die at home.” They explain that hospital staff really do care about patients’ loved ones and can often provide the best support at the end. According to the authors, “[T]hese [medical facilities] are … filled with people who care deeply about [patients’] care and who have the skills to help [their loved ones] now.”
The final chapters of the book detail the dying process. The requirements for physician-assisted dying are addressed, on a state-by-state basis, as well as the importance of do not resuscitate (DNR) orders. Berger and Miller state that 83.3 percent of doctors indicate that they would choose a DNR order for themselves. But the authors warn, “Unless [the patient] or [the] doctor specify otherwise, the default is Full Code.”
A great deal of attention is given to the caregiver’s needs, feelings, exhaustion, and mourning throughout the book. In one telling description, the authors describe the final hospital bedside vigil, when the caregiver is exhausted but does not want to leave the room for fear of missing “the end.” They emphasize the caregiver’s need, even then, for self-care, warning that otherwise “these final hours will become an unremarkable blur.” They advise readers: “When you step away, tell your loved one you’re doing so, perhaps with a kiss; tell him it’s okay if he needs to go, that you will understand. Know that he may be gone when you return. It may need to happen this way, which makes leaving the bedside a loving gesture.”
The book describes in detail the funeral process and its options, outlining costs and giving clear directions on topics such as how to write a death notice and how to give a eulogy (see Chapter 22, “How a Eulogy Can Go Wrong”). Interestingly, the authors point out that although close to 50 percent of Americans now opt for cremation over burial, it turns out that cremation is not the best option environmentally. According to the authors, “The green prize goes to natural burial,” also known as “green burial.” This method places the body in the ground without any chemicals to enable it to undergo natural decomposition.
A helpful and extremely thorough list of available resources, along with an excellent bibliography, conclude the guide.
I believe that Berger and Miller succeeded in countering the cultural premise that dying means failure. They instead offer a different perspective: Death is part of life and never far removed from it. “Next to birth, death is one of our most profound experiences — shouldn’t we talk about it, prepare for it, use what it can teach us about how to live?” I recommend this book to our clients, their families, and anyone who wishes to be a better elder law attorney.