Final Acts: Death, Dying, and the Choices We Make

Introduction

1 VVVVVVVVVVV Introduction “Dealing with death is a third rail issue in the United States. We don’t talk about death and dying as a societal problem, but it’s going to become more and more so.” —Dr. Joseph Messer to Studs Terkel, Will the Circle Be Unbroken? Reflections on Death, Rebirth, and Hunger for a Faith Most of us don’t want to think about death and dying. We know that someday we may have to be caretakers to the terminally or chronically ill, and we may have strong opinions about issues like suicide or aid in dying or the government ’s role in end-of-life decision making. But, generally, we choose to avoid what we consider a depressing subject. Feeling powerless to control our deaths, we shrug our shoulders, go on with our lives, and hope to die peacefully in our sleep of natural causes at ninety. The writers whose essays are gathered in Final Acts provide us with a reality check and wake-up call. For most of us, death won’t be quick. Although we may be lucky enough to reach ninety, we probably won’t die at home in our own beds. And, unless we do some advance planning, our deaths may be prolonged and/or painful. In addition, most of us (particularly women) will end up caring for elderly parents, relatives, friends, or partners before we die. And they won’t die in their sleep either. By demystifying the process, these writers deactivate death and dying as a “third rail issue” and demonstrate how the dying—and those who care for them—can make informed and loving end-of-life choices. And what can happen if they don’t. We hear from patients, caretakers, physicians, journalists, lawyers, social workers, educators, hospital administrators, academics, lawyers, psychologists , and a poet. There are ethicists, religious believers, and nonbelievers. They discuss intensely personal issues, like choosing or rejecting medical interventions, deciding among options for pain relief, calling or not calling 911, selecting the amount and type of end-of-life care (such as hospice or palliative care), accepting or challenging the wishes of loved ones, and, most importantly, deciding who should control the overall process. They consider broader questions, including: where we die (for example, home, hospital, nursing home, hospice); the role of doctors, technology, law, and the state; the personal and societal costs of death and dying; and the documents one should have in place (health proxy, do-not-resuscitate order, living will, and power of attorney). They discuss death from natural causes (slow or sudden), suicide, and aid in dying (which some offer as an alternative term for assisted suicide). Unlike previous books on death and dying, Final Acts isn’t designed to advance a cause or explore, in depth, a hot topic (suicide, aid in dying, the hospice movement, escalating end-of-life care costs, or the nursing home industry, for example). It examines these and other issues—from many perspectives —but the collection’s strength lies in its attempt to address broader questions: What characterizes the good or bad death? What role does individual agency or choice play at the end of life? What role do other factors— beliefs, customs, values, family situation, money, location, class, race, ethnicity, and gender—play? What final acts will smooth our passage or the passage of those we love? Final Acts begins a conversation long overdue. Death and dying, arguably the most private human experiences, are also public events. More than ever before, an individual’s dying directly involves others—not just family members, friends, neighbors, and coworkers, but also teams of medical professionals, like doctors, nurses, social workers, and hospice workers, as well as health aides and attendants. Medical facilities (hospitals , hospices, nursing homes) and health-care programs (Medicare, Medicaid, private health insurance) become involved, as do religious institutions , a multimillion-dollar funeral industry, and occasionally even politicians and the courts. So, while we may die alone, these days we die intimately connected. As journalist Stephen Kiernan points out in his essay in this collection, the American way of death has changed: today most people die gradually, from incremental illnesses, rather than from heart attacks or the fast-moving illnesses that killed earlier generations. Life expectancy has reached record highs: 80.7 years for women and 75.4 years for men, according to 2006 data THE EDITORS 2 from the National Center for Health...