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 nightshifts 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 former 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 what we can do to make sure we die the way we want to.
Her message is clear: to die the way we hope to die, we have to take actions now. We cannot leave it to chance.
Physicians, Lee writes, often don’t want to tell us everything. They have been taught to maintain lives. Technological advances in medicine encourage them to do this. Unless we tell them what we do not want, we may die in the grip of heroic efforts to keep us alive. 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, and “just because we can prolong life” doesn’t mean we should.
To that end, Lee’s book provides an arsenal of helpful information. She defines advance directives and includes a chapter devoted exclusively to 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?
There are a growing number of states in America where medical aid in dying (MAID) is legal. Passing this legislation in all of America will take work. Lee offers examples of opposition to these laws and ways to tackle them. She takes on without flinching the hold some religions have on us by insisting on prolonging 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 us to become activists for our own agency at the end of life. Many doctors do not really understand what it is that the patient wants or think that they know best. It is up to us, she says, to develop our muscle when it comes to talking with our doctors, and making them feel comfortable with the questions we 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.
Review by Susan Gillotti, PCV Board Member