by Amy Bloom
Random House (March 8, 2022)
I am inclined to call this book a “page-turner”. But how can that be? It is a book about the author’s husband, Brian, who, by the time he is diagnosed with Alzheimer’s disease, is also told that the process of sinking into severe dementia will be rapid. This vibrant man in his 50s is determined to end his life while he still recognizes and can interact with his wife and those he loves.
However, he struggles to find an acceptable path to accomplish his goal. Even if Brian were to move to a state like Vermont, or any of the other nine states plus Washington, DC, where Medical Aid in Dying (MAID) is legal, he would not be likely to qualify. All states have specific requirements for a person to use the MAID process. They must be lucid and able to communicate to two doctors their wishes, as well as the rationale for ending their life, and they must be within six months of death. Most likely by the time Brian would be six months away from death, he would not be lucid or able to communicate clearly and dementia is not always recognized as a terminal illness.
At one point, when it seems there is no acceptable way for him to accomplish his goal, he considers using a gun. But that is an anathema to him, largely because of the negative impact such an act would have on the people he loves.
Amy Bloom is a professor of Creative Writing at Wesleyan University who has written several award-winning books on a variety of subjects. The topic of this book is obviously very personal, as she chronicles her husband’s slipping into Alzheimer’s. However, the book also puts this part of their story in the broader context of their marriage. It is a second marriage for both of them and she includes in the story the joys and challenges of blending two families. A real plus in reading the book is enjoying Bloom’s excellence as a writer.
While Amy Bloom and her husband did not live in Vermont, they also knew moving to one of the ten states or Washington, D.C. where MAID is available would not help them. She rightly says: “The right to die in America is about as meaningful as the right to eat or the right to decent housing; you’ve got the right, but that doesn’t mean you’re going to get the goods.” Brian understood this. Soon after he was diagnosed, he expressed interest in going to Switzerland to end his life. As the weeks and months went on, it began to look like the only viable option.
Amy contacted Dignitas in Zürich soon, and learned that this too, was a complicated process. Dignitas is a nonprofit organization offering accompanied medical aid in dying. As the author describes, “For the last twenty-two years, Dignitas has been the only place to go if you are an American who wants to die and if you are not certifiably terminally ill with no more than six months to live.” However, Switzerland has no interest in allowing depressed patients to take advantage of its “right to die” process. Doctors there want to be as certain as possible that anyone who uses the process is clear thinking, not depressed, and not being pressured by anyone. Bloom learned that Brian needed to provide various documentation, including a brain scan and a report from a psychiatrist. There were requirements that took weeks to satisfy, and 56-year-old Brian was losing agency quickly. He continued to have lucid periods, but the emotional contact with friends and family, including his wife, began to diminish.
Not surprisingly, the way people deal with the end of their lives, including those who do so on their own terms, is very individual. Brian did not want to discuss their plans with others, including most of their family. Virtually no one knew they were getting on a plane for Switzerland. But they got to Zürich, passed the Dignitas face-to-face exams, and then enjoyed a few days in the city that they had loved in previous visits, and went to some familiar places. Of course, it was different this time, but they both clearly felt these were among the best ways they could spend their last days and hours together. And then Brian ended his life under the supervision of Dignitas.
There are several incredibly sad parts of the book. But the author also conveys many happy and intimate moments as this couple thoughtfully negotiates Brian’s wish to end his life on his terms and in a way that is consistent with who he is. Ultimately, this book about a man’s decision to end his life with the support of his wife is not only sad, but uplifting.
Review by David Otto, PCV Board Member
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by Atul Gawande
Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.
Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
To Die Well: Your Right to Comfort, Calm, and Choice in the Last Days of Life
by Sidney Wanzer, M.D. and Joseph Glenmullen, M.D.
The information in To Die Well is both comforting and empowering. Knowing our rights to refuse treatment, as well as legal ways to bring about death if pain or distress cannot be alleviated, will spare us the frightening helplessness that can rob our last days of meaning and connection with others.
Drs. Sidney Wanzer and Joseph Glenmullen do not shy away from controversy. They make clear what patients should expect of their doctors, including the right to sufficient pain medication even if it shortens life. They distinguish between normal sadness and depression. They also explain the ways to hasten death that are legal and possible for anyone, and those that require a doctor's help.
A Good Death: Making the Most of Our Final Choices
by Sandra Martin
A Good Death is timely, engaging and inspiring. In taking on our ultimate human right, award-winning journalist Sandra Martin charts the history of the right to die movement here and abroad through the personal stories of brave campaigners like Sue Rodriguez, Brittany Maynard and Gloria Taylor. Martin weighs the evidence from permissive jurisdictions such as the Netherlands, Oregon, California, Switzerland and Quebec and portrays her own intellectual and emotional journey through the tangled legal, medical, religious and political documentation concerning terminal sedation, slippery slopes, and the sanctity of life.
Modern death has become a wrenching political dilemma, one that becomes more pressing as the population ages. A Good Death confronts our fears about dying, our struggle for meaning, and our dread of being trapped by voracious medical technology in a nightmare world that has abandoned caring in pursuit of curing, no matter the cost or the suffering to patients and their families.
A Good Death asks the tough question none of us can avoid: How do we want to die? The answer will change your life-and your death.
"Living Life Dying Death; A Guide to Healthy Conversations about Death and Dying"
by Jenifer Collins Taylor
While some see death and dying as taboo subjects, author Jennifer Collins Taylor, MSW approaches the topics with gentle, thought-provoking prose, demonstrating that openly discussing death and dying is as important to the living as it is to those who may be nearing their final breaths. Her book, Living Life Dying Death: A Guide to Healthy Conversations About Death and Dying to Inspire Life and Living, accomplishes its mission through reflective conversation starters that encompass topics such as compassion, dreams, fear, goodbye, gratitude, grief, honesty, hope, humor, joy, mystery, pain, patience, peacefulness, philosophy of life, relationships, spirituality and many more.
Most importantly, the book emphasizes that love is triumphant. In times of health readers are encouraged to reflect on, explore and express their beliefs on the very nature of life and living, death and dying. In times of health challenges the book can be used as a guide to initiate difficult conversations when faced with the possible decline and death of self, friend or loved one. In times of grief this book can be used to bring support and hope to the dynamic experience of grieving. Regardless of where readers are on the pathway from life to death, Living Life Dying Death should be readily available to guide, encourage and inspire healthy conversations about death, dying, grief and loss.
Living Life Dying Death calls readers to action, prompting them to find the courage and confidence to more openly discuss death, dying, grief and loss. This book stimulates the reader to embrace living well and encourages those approaching life's final journey to trade fear for love, comfort, forgiveness and a sense of awe. Courageous conversations about life and death allow the strength and beauty of the human spirit to shine.
Take Care of Dying---Get On with Living: End-of-life Planning that Works
by Theo Wells
The greatest gift you can give your family and friends is your carefully thought out plan for handling the unexpected events at the end of your life.
Here—all in one place—are the basic decisions you need to make as long as you’re living: