by Barbara Coombs Lee (Author), Haider Warraich M.D. (Foreword) Littleton, CO: Compassion & Choices (December 14, 2018)
Barbara Coombs Lee has spent her life on the front lines as a nurse, lawyer and health policy reformer. She has seen death in every setting: on the streets of Harlem, during night shifts in nursing homes, in intensive care and coronary care and while riding with EMTs. She also has a law degree, earned after twenty years as a nurse. As CEO of Compassion & Choices, the national organization working to expand our options at the end of life, she has written a strong and powerful book telling us, the consumer, what we can do to make sure we die the way we want to.
Coombs Lee writes that, as Americans, we seem to have a desperate desire to obscure death’s inevitability. Physicians, well intended, often don’t want to tell us everything. All doctors, however, know that treatment plans will eventually “fail.” We will die. The question is, do we want to die in the grip of heroic efforts to keep us alive, no matter what the cost, or do we want to die gently? She quotes Gallup and Harris surveys that show that 69 to 74 percent of people now believe that the terminally ill should have agency over how their lives will end.
To that end, Barbara provides the reader with an arsenal of helpful information. She defines the components of advance directives, telling us how we can specify what we want during the stages of dementia. She discusses assisted living facility (ALF) riders that will assure our freedom of choice if that is our final home. She discusses sectarian healthcare directives and hospital visitation rights for unmarried couples. She devotes an entire chapter to “Overtreatment and Diminishing Returns” guiding the reader in identifying the important questions to ask a doctor. “What exactly is the success rate of this treatment?” and “How do you define success?” are two important ones. She invites us to think about what matters most to us in life. Do we love to read more than anything else? If the answer is yes, we need to know if a proposed treatment is going to give us blurred vision. Would we want it?
Coombs Lee credits the growing number of jurisdictions allowing medical assistance in dying (MAID) with an emerging national willingness to talk about this way of ending our lives. Twenty percent of the U.S. population now lives where it is allowed (Washington, Oregon, California, Hawaii, Montana, Colorado, Vermont and Washington, D. C.). She shares with us the story of Brittany Maynard, who moved to Oregon and achieved the death she wanted.
Barbara Coombs Lee tells us that creating change in all of America will take work. She takes on without flinching the hold some religions have on us by insisting on life at all costs. “Why,” she asks, “in a pluralistic nation, should some people be entitled to live their religious beliefs and others be required to live and die according to beliefs they do not share?” She makes an impassioned plea for all of us to become activists for our own agency at the end of life. We can do it. All we need is to develop our muscle when it comes to talking with our doctors, and making them feel comfortable with the questions we ask. Many doctors do not really understand what it is that the patient wants, or think that they know best.
My husband had a brain tumor and used Vermont’s Act 39 to choose the day he would die. He wanted the spiritual experience of being fully present when he took his next journey. He did not want to be in a coma as a result of palliative sedation. It was not easy to navigate with his health care providers, because he was the first patient in his medical practice to ask for it. I wish he and I had had Coomb Lee’s book while this was happening, because it would have been helpful in framing the questions we needed to ask. My copy of Finish Strong is on the bookshelf next to Atul Gawande’s Being Mortal. Buy it not only for yourself, but for your children and grandchildren (and your parents and grandparents). The desire to die gently, without distress for our loved ones, should be something we can talk about easily with friends, family, and physicians.
Susan Gillotti, PCV Advisory Committee Member