The Dying Person

Today, we have three major pathways to death: People die suddenly, without warning; they steadily decline after being diagnosed with a fatal disease; and, most often, they battle an ultimately fatal, chronic condition for a prolonged time. Before modern medicine people died quickly and everyone had hands-on experience with death. Then, during most of the twentieth century, medical science relocated dying to hospitals, and people avoided talking or thinking about death.

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In recent decades, Western attitudes have changed. Doctors now openly discuss potentially fatal diagnoses, and society has health-care alternatives devoted to easing people’s passage to death. We also urge everyone to discuss their end-of-life preferences, although talking about death is still forbidden in some cultural groups.

Elisabeth Kübler-Ross, in her stage theory of dying proposed that people pass through denial, anger, bargaining, depression, and acceptance when they learn they have a fatal disease. However, we cannot take this landmark theory as the final truth. Not every person wants to talk about impending death. Sometimes it may be best not to be totally honest about a loved one’s dire prognosis. Most important, terminally ill people feel many different emotions—especially hope. Rather than emotionally approaching death in “stages,” patients may experience a state called middle knowledge both knowing and not fully comprehending their fate. Even in the face of accepting death, dying people still have life goals.

Biblical accounts showcase the defining qualities of good deaths: It’s best to die at peace after a long life, surrounded by our loved ones. Specifically, people want to die relatively free of pain and anxiety, feel in control of how they die, and end their lives feeling close to their attachment figures. Believing that we have fulfilled our purpose in living and appreciating that death is part of the universal human cycle of life is also important in accepting death.

Our culture has clear conceptions about normal mourning. After an initial period spent absorbed with their loss, we expect people to recover emotionally after about a year. When mourners still show intense symptoms after this time, they can now be diagnosed with a controversial mental health condition called persistent complex bereavement-related disorder or prolonged grief. However, prolonged grief may be normal when parents face that off-time event, the death of a child. In this worst-case example of a bad death, it helps to openly discuss dying (if that child knows he or she is terminally ill) and say goodbye to one’s son or daughter. Keeping the child alive in spirit helps mute the pain. Transforming the death into a redemption sequence allows grieving adults to restore a sense of life as predictable and fair.

A classic study of dying trajectories showed that because dying doesn’t proceed according to a “schedule” but medical personnel assume it does, the way hospitals manage death leaves much to be desired. Communication problems among patients, families, and medical personnel, along with the fact that medical technologies can extend life beyond the time the body “wants” to die, increase the potential for undignified hospital deaths. Interventions to provide better palliative care include: (1) offering end-of-life care instruction to health-care personnel; (2) establishing hospital-based palliative-care services; and (3) removing the scene of dying from hospitals to the hospice.

The U.S. hospice movement offers backup services that allow families to let their loved ones spend their final months dying naturally, at home. Family caregivers can expect different trajectories to death depending on the person’s illness. They confront scary issues relating to pain control. Difficulties relating to labeling patients as dying and simple lack of awareness are other hurdles to hospice care. Home deaths may not be the best choice if attachment-related issues such as not burdening loved ones matter most to people facing a fatal disease.

Advance directives—the living will and durable power of attorney for health care filled out by the individual in health, and the Do Not Resuscitate (DNR) and Do Not Hospitalize (DNH) orders, filled out by surrogates when the person is mentally impaired—provide information about whether to use heroic measures when individuals cannot make their treatment wishes known. The best advance directive is the durable power of attorney, in which a person gives a specific family member decision-making power to decide on end-of life care.

With active euthanasia and physician-assisted suicide physicians move beyond passive euthanasia (withdrawing treatments) to actively promote the deaths of seriously ill people who want to end their lives. Paramount among the objections to legalizing active euthanasia is the idea that we may open the door to killing people who don’t really want to die.

A related issue is age-based rationing of care whether to hold off on using expensive death-defying technologies with people who are old-old. At this moment, age-based rationing of care is poised to move center stage in Western nations, as the massive baby boom cohort enters their elderly years. The timeless message of this chapter—and the book—is that love (or, in developmental science terminology, our attachments) is at the core of human life.