At least nine new books about death and dying have been released in 2019. Exploring various aspects of the previously stigmatized–now apparently “hot”–subject, this seems like a significant increase, but I count approximately the same number in 2018 and also in 2017. As I review these new titles, I look for these markers, among others: how do the authors address the controversial subject Aid in Dying? Some do not deal with it at all, a disappointing and somewhat surprising situation for well-meaning guidebooks that purport to offer a variety of resources. Everyone wants a peaceful, painless exit, so how do authors justify not mentioning this option?
Aroop Mangalik’s Dealing with Doctors, Denial and Death (2019) deals directly with the topic. The retired oncologist and ethicist distinguishes between “hastening death by passive methods” and “hastening death by active means.” The former category includes stopping liquids or food, known as Voluntary Stopping of Eating and Drinking (VSED) [also written as Voluntarily Stopping Eating and Drinking]; refusing feeding tubes, intravenous fluids and dialysis; and receiving heavy doses of morphine. More active means include what has been called Medical Aid in Dying or Physician Assisted Death, currently legal in only a handful of states, and other modes which Mangalik refers to obliquely, using the neutral term Aid in Dying (AiD). He is careful to disambiguate euthanasia, by stating “If the patient takes the drug voluntarily, it is not euthanasia.”
Mangalik concludes: “The benefits and harms of, acceptance of or opposition to AiD are major topics of discussion and disagreement. Concerned laypeople, health professionals, religious organizations and politicians all participate in the debate, and many have strong opinions on the subject. Most of [Dealing with Doctors, Denial and Death covers] topics that describe how you can make the best decisions for yourselves.” He goes on to invoke the ethical framework of four parameters — Autonomy, Beneficence, Non-malfeasance, Justice – to evaluate options.
Even more detailed is Lew Cohen’s A Dignified Ending: Taking Control Over How We Die, in which the psychiatrist and palliative medicine researcher chronicles the Right-To-Die movement, its movers & shakers (including Derek Humphry, Jack Kevorkian, Faye Girsh), historical figures who have hastened their own death (including Hercules, Sigmund Freud, and Charlotte Perkins Gilman), contemporary case studies, and a detailed and nuanced history of Final Exit Network. Cohen’s even-handed history is a most welcome addition to the literature.
An early title which recently came to my attention is Doris Portwood’s Common Sense Suicide: The Final Right, originally published in 1978. While some of her information is out-of-date, much of her material is amazingly on target (disappointingly so considering that it was written over 40 years ago).
Some current titles investigate the “brokenness” of the current American medical system, some focus on practical, spiritual, or emotional support, some on the legal/medical aspects, while others are more concerned with grief and loss after the fact. All of these add to the ever-expanding “canon”:
• Blainey, Amanda. Do Death: For a life better lived (2019)
This practical guide by a social activist and hospice worker invites readers to accept death as a natural part of life, to think about what really matters, and to live more consciously.
• Butler, Katy. The Art of Dying Well: A Practical Guide to a Good End of Life (2019)
Inspired by a popular self-help book called Ars Moriendi, or The Art of Dying, written in Latin by an unnamed Catholic monk in the mid-1400s, which taught people how to navigate the trials of the deathbed, using simple rituals of repentance, reassurance, and letting go.
• Cochran, Deanna. Accompanying the Dying: Practical, Heart-Centered Wisdom for End-of-Life Doulas and Health Care Advocates (2019)
The newly emerging role of the “end-of-life doula,” a nonmedical role providing practical, emotional, and spiritual support to the dying and their families, can be a powerful solution to the looming crisis in health care as baby boomers and their elders age and die.
• Cohen, Lewis M. A Dignified Ending: Taking Control Over How We Die (2019)
A psychiatrist and palliative medicine researcher reveals a self-determination movement that empowers people to shape the timing and circumstances of their deaths, decriminalizes laws threatening those who help them, and passes assisted dying legislation.
• DeLeo, Kirsten. Present through the End: A Caring Companion’s Guide for Accompanying the Dying (2019)
Based on decades of experience caring for the dying and years teaching contemplative care around the world, this Buddhist teacher/counselor shares down-to-earth advice and offers short, simple tools to help handle our emotions, deal with difficult relationships, talk about spiritual matters, practice self-care, listen fully, and more.
• Lee, Barbara Coombs. Finish Strong: Putting Your Priorities First at Life’s End (2019)
A former nurse, physician assistant and attorney and a leading advocate for end-of-life options in her role as president of Compassion & Choices, offers astute, critical, clarifying stories, facts and dialogue to help prepare for one’s end of life with purpose, grace and dignity.
• Mangalik, Aroop. Dealing with Doctors, Denial, and Death (2019)
The retired oncologist and ethicist explains some of the influences that may prompt physicians to recommend futile treatments for patients facing serious illnesses for which the path to wellness is unclear and describes specific ways of obtaining information to get a clear idea of all available options.
• Miller, BJ, and Shoshana Berger. A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death (2019)
A hospice physician and an experienced caregiver/journalist offer a detailed action plan for approaching the end of life to help readers feel more in control of an experience that so often seems anything but controllable.
• Morhaim, Dan. The Better End: Surviving (and Dying) on Your Own Terms in Today’s Modern Medical World (2019)
A practicing physician and Maryland state legislator guides readers through the medical and legal maze of end-of-life care.
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Jim Van Buskirk is a former librarian and currently works as a book group facilitator, writer, editor, public speaker, exhibit curator, and collections manager. He frequently presents at the Jewish Community Center of San Francisco, the San Francisco Public Library, and other locations on topics related to Jewish, film, and/or queer history. He has been co-hosting Death Cafes since 2015, and volunteers as a Regional Coordinator for FEN.
Thanks, Jim, for compiling such a helpful list. Thanks, Lamar, for making it available through the GDS Blog. Happy Holidays to you both and to everyone who learns so much from the weekly posts.
Dr. Mangalik’s book was published in 2017.