"I’ve never done this before," says Joyce Kerr, her voice betraying only a slight waver. She is talking with her doctor about dying. A strong and dignified woman in her 60s, Kerr has decided to stop treatment for ovarian cancer and is preparing to leave the hospital for the final time to die at home with her family. Her doctor, a specialist in end-of-life care, reassures her that there is no "right" way to die.
What Kerr seeks—and what studies show most of us desire—is a death free of pain, at home, surrounded by loved ones, receiving support and respect. By these criteria, Kerr does end up with a good death. However, as things stand now in the United States, too many of us and those we love will not be so fortunate (even if we are spared sudden death). Why?
Veteran journalist Bill Moyers takes up this question and offers hope for change in a four-part PBS documentary series, "On Our Own Terms: Moyers on Dying in America" (premieres September 12; check your local listings). This program gives intimate and gripping glimpses of the final days of Joyce Kerr and others, free of sentimentality or sensationalism. Woven throughout is an accessible primer on the ethical, personal, financial, and bureaucratic struggles that the dying and their families face, as well as examples of innovative efforts to better care for all involved at the end of life.
Episode 1, "Living With Dying," shows several people doing just that. Their stories introduce some of the major challenges to a "good" death: the scarcity of medical training and resources directed toward end of life care, inadequate or nonexistent health insurance, and the common fear or denial of death that postpones needed planning and engagement.
To "palliate" means to comfort—experts in the palliative care field emphasize that this means physical, emotional, spiritual, and social care for both the dying and those around them. Episode 2, "A Different Kind of Care," shows the palliative care concept in action at Mt. Sinai Hospital in New York and in an Indianapolis program for the medically underserved.
In Episode 3, "A Death of One’s Own," Moyers takes the "right to die" debate far away from simplistic slogans about choice or sin. He sensitively follows two terminally ill people (one with ALS, one with terminal cancer) who wish to control when they die, capturing the ambiguities inherent in being immersed in immense suffering, love, and inevitable loss. The final episode, "A Time To Change," profiles the stunning, inspiring work of Balm of Gilead—an in-hospital hospice/palliative care program for the working poor and uninsured in Birmingham, Alabama—and the related at-home hospice program that also serves the poorest, most vulnerable families in the area.
THERE ARE SOME common, negative trends in dying in America. End of life care is rarely taught in medical schools, even though, as the director of one palliative care program puts it, "taking care of dying people isn’t the same as doing nothing." Pioneering doctors are making the treatment of pain, especially for the dying, steadily more sophisticated, but such palliative methods are not yet universally used or accepted.
The scandalous state of health care coverage and availability in the United States adds financial devastation, confusing bureaucratic barriers, and woefully inadequate care to the already substantial burdens borne by the dying and their families. The middle class is far from immune, but the impact on the working poor and the destitute is almost unimaginably harsh. Jumping through the necessary hoops to get government health coverage for the terminally ill can easily take more time than they have. Even when insurance is available, it rarely covers the type of daily personal assistance a dying person needs. Many people give up jobs, and lose all assets, to take care of a sick spouse or parent.
There is hope, however. "On Our Own Terms" makes clear that there are achievable policy changes that could ease access to appropriate end-of-life care. And as some very committed health professionals deepen their professions’ understanding of proper care for the dying, an educated public can begin to demand that those they love receive that care.
This series reminds us that every day, near and far, the quiet drama of living with dying is under way—the struggles with pain, the caregivers’ sacrifices, the lonely vigils, the difficult choices, the good-byes. Death’s suffering can’t be eliminated. But it is within our power as individuals and as a society to comfort and support one another through the passage of dying much better than we do now. "On Our Own Terms" delivers both the information and the inspiration to take up this challenge.
JULIE POLTER is associate editor of Sojourners. An extensive effort to improve care for the dying and their families is affiliated with "On Our Own Terms." For more information, see www.thirteen.org/onourownterms.
On Our Own Terms. Moyers, Bill. PBS, 09/01/00.