Can you name the only country in Europe that permits foreigners to receive assisted suicide? Is the right to decide when we want to die a human rights issue? Would you want the availability of a “Peaceful Pill” that would provide a reliable, pain-free death at a time of your choosing? Are you aware that there is a “Terminal Right To Know End-of-Life Option Act” in California, which says you have a legal right to information from your doctor about hospice, palliative care, refusal of life-prolonging treatments and the choice to refuse food and water to hasten death?
If, like me, you did not know the answers to any of these questions and are passionately concerned with end-of-life issues—either because of aging parents or because, like most of us, you want “a good death”— then this is the book for you.
Final Acts is a collection of personal stories (Part 1) and informative essays (Part 11), compiled and edited by Nan Bauer-Maglin (formerly a professor of English at Manhattan Community College, CUNY) and a professional colleague, Donna Perry. It tells you everything you ever wanted to know—and more—about the range of ways Americans expect to die vs. the reality of how they die, and informs you about the ethical, religious and cultural beliefs that affect our end-of-life choices. (Click to read an interview with Nan Bauer-Maglin).
You will recognize yourself, your friends, your family and your moral dilemmas in the personal stories written by caregivers (most of whom are women), as well as by physicians, social workers and other professionals with whom they interact in the so-called health “system.” Every point of view is presented—from those who believe in the right to assisted suicide to those who do not—and both “good” and “bad” deaths are described.
Questions are posed to which there are no right or wrong answers, including whether or not to accede to a husband’s wish to do everything to keep him going when doing so will only bring him more pain. Paradoxes are presented in all their starkness, such as the reality that the caregiver is fighting for a good death, while the patient is fighting to live. Families are often divided. Grim financial realities are front and center. During the last year of Susan Perlstein’s mother’s life, for example, the medical costs to the family came to $100,000. (Without the last-minute financial aid of a relative, her mother would have been moved from her assisted living home to a public, Medicaid-supported facility). Perlstein, who has spent her entire working life “dedicated to improving the quality of life for older people,” and who was her mother’s caregiver, asks herself whether “the last three years were an act of love and kindness or a waste of time and resources.”
There is a smidgen of humor, as well. June Bingham, dying of metastasized cancer, cheerfully notes that, “I can eat anything I want and still lose weight.”
Final Acts does not push any agenda, but makes you reflect, long and hard, about many of the assumptions you may have held. For example, while hospice and palliative care—at their best—can provide exactly the kind of good death for both patient and family that we all wish for, at their worst, in the hands of an understaffed hospital or bottom-line focused health system, it can result in horrific unintended consequences. Two tales in this book make that very clear.
Though we are all in some state of denial about our mortality, Final Acts provides extremely valuable information we will need as we face ill health and decline, or as we go about our caregiving tasks. Did you know, for example, that refusing food and water is, in many cases, a painless way to go? I did not. Has it ever occurred to you that “internalized ageism,” deeply affects the late-life choices we, our families, and the health system make? Frankly, it hadn’t. But if we lived in a culture that venerated old age and the wisdom of elders, it’s clear that the context in which we think about aging would be different. And the social options provided for housing and caring for the elderly, would be different. As things now stand, few doctors or nurses are trained in gerontology or geriatrics, despite the tsunami of older Americans about to break upon our shores. And with two-job households, families can no longer provide the home care that once could be counted on for parents and grandparents. Culturally, politically and medically, we are a nation in denial.
On a more personal level, loved ones do the best they can and pass on their hard-won wisdom, such as the value of a mother and daughter “sharing stories” when packing up for a move to an assisted-living facility. Or the insight that the choices made about, say, suicide, involve not just an ill person, but the family.
Overall, when it comes to dealing with the array of medical and social institutions involved with death and dying, information truly is power. And yet, if there is one profound lesson to be learned from Final Acts, it is that most of us are woefully uninformed and unprepared to make wise end-of-life choices. Therefore, it behooves each of us to fully educate ourselves about our options so that, as Bauer-Maglin and Perry write, we learn how to dance with death “as a full partner, with dignity, without letting it lead your every move.“
A good place to begin that education is by reading this book, then beginning a conversation with friends, family, health providers and oneself, that is long overdue.
Final Acts: Death, Dying and the Choices We Make. Edited by Nan Bauer-Maglin and Donna Perry. Rutgers University Press. 326 pages. $23.95
Eleanor Foa Dienstag, one of the first female speechwriters on Wall Street, won a variety of awards as chief speechwriter for the CEO of a major financial-services company. Since starting her own corporate communications business, she’s written for a variety of CEOs and senior executives in the travel, publishing, banking, beverage, fashion, retail and hospitality industries. She particularly enjoys working with female executives. She also lectures on the art of speechwriting to public relations professionals. For an overview of her work, go to: www.eleanorfoa.com