by Anita Hannig
Sourcebooks (May 3, 2022)
Books about medical aid in dying are beginning to appear with frequency. It’s as if everyone now--doctors and patients alike--has recognized that we can’t keep pretending that we don’t die.
Anita Hannig is a cultural anthropologist at Brandeis University where she teaches classes on the cultural dimensions of medicine and the end of life.
She spent five years in Oregon and Washington meeting families in living rooms and hospital suites, listening to proceedings in courtrooms and at public hearings, and visiting state archives. For eight months, she worked as a hospice volunteer and accompanied patients during the final weeks of their lives. What she learned is in this book, and will be of value to everyone working to craft MAiD laws in states where they are not yet authorized and in states to improve the laws they already have. Especially helpful will be “Restrictive Laws” (Chapter 3) in which she describes the spectrum of questions lawyers, physicians, and activists had to consider when they drafted Oregon’s law in the 1990s.
From the start, euthanasia was a sticky point, supported by those who wanted to help dying persons who cannot swallow, and opposed by those who felt it unacceptably required a physician directly to end a life. “What is the moral difference?” one advocate argued, “between writing a prescription and injecting a needle?” The debate is no less intense today.
Hannig questions whether the laws enacted in America, intended to reduce unnecessary suffering, have sometimes had the opposite effect. “Every year,” she writes, “hundreds of eligible patients who apply for an assisted death are so close to the end of their life, they die during the mandated waiting period that kicks in after their first oral request. Many wade through the dense bureaucracy of these laws while their energy and health are fast declining. Patients with open-ended degenerative diseases, like Parkinson’s or ALS, cannot qualify unless they are within imminent reach of their death. And those at risk of losing their ability to self-administer the lethal medication worry constantly that they might miss the precious window when they are able to take the drugs.”
Hannig confronts the question many are now asking, of whether Western medicine has gone too far in keeping us alive. Zack, the son of one of the patients she followed, said of his father that he was being kept alive years past when he would have naturally died. “If he stopped all the pills that keep him going and had his pacemaker removed, he would be gone within a week. That’s no different than saying, ‘I’m going to speed it along by taking something to do it.’ The end result is the same.”
Finding a way to bring consensus among lawmakers is what has to happen, Hannig writes, and she discusses the range of questions that will have to be answered. How do we deal with the Catholic health system? How do we change restrictive laws to allow greater access and at the same time not foster abuse? How do we change the bureaucratic maze that is overwhelming, and resolve the difficulty for doctors whose professional ethos tells them to preserve and possibly extend life, while on the other hand, teaches that they have a basic duty to relieve suffering? Not all doctors recognize existential suffering. Dame Cicely Saunders, founder of the first modern hospice in London in 1967, coined the term “total pain” to describe it, noting that existential suffering can be just as agonizing as physical pain.
Hannig writes movingly of how medical aid in dying can soften grief. It allows time for reconciliation with loved ones. “Assisted dying,” she writes, “is much larger than swallowing a lethal dose of medication: it changes how we live, how we die, and how we envision our future…It introduces new possibilities for human beings to direct the end of their lives…(and) to think about how they want to leave things with their loved ones, repair relationships, and plan for a personalized departure… Loved ones didn’t feel as blindsided.”
The Day I Die is a worthwhile addition to the canon of books now being written about medical aid in dying. It is an especially interesting read side-by-side with Stefanie Green, MD’s book on MAiD in Canada, This is Assisted Dying.
Review by Susan Gillotti, 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: