Bill Bartholome, is a pediatrician who has become terminally ill with cancer. Of his discovery that he is going to die, he says, “I experienced a kind of grief that I had never known.” Television cameras follow closely the saga of his decline and approaching death as Bill chooses to forgo curative treatment in favor of relief of pain.
Bill Bartholome is only one among dozens of people the viewer meets in Bill Moyers’ new public television series “A Death of One’s Own.” This four-part series is ready to air on Boston’s Channel 2, starting on Sunday evening, September 10 and running the next three nights from 9:30 to 10:30. (The programs will be repeated in early morning hours on Channel 44.)
With Bill Bartholome and offering him loving support during his ordeal is Pam, his fiancée. At this time, she follows through and marries Bill, much to his amazement. “I could not believe that she would do it,” he exclaims.
Living day by day with the knowledge that his death is approaching, transforms life for Bill. Agonizing as this realization certainly is, it makes him appreciate living as never before. Though he says “I am in contact with the skeleton that I am becoming,” he also witnesses to the arrival of another springtime as “an incredible miracle.”
It’s not how long you live that makes life valuable, Bill comes to see. When his death comes, some months after we first meet him, he has arrived at a certain level of peace. “Thanks for letting me care for you,” Pam told him then, knowing that he would no longer be able to argue against this sentiment of hers. At that point she was grieving for him, experiencing what writer and professional undertaker Thomas Lynch says by way of commentary, “Grieving is the tax on loving people – the intimate contract.”
These programs are not always easy to watch. As Moyers himself admits, “It’s not pretty, looking at a dying person.” My own emotions, as I went through preview tapes, ran the gamut from pity for others to fear for myself, with many stops between. Often my eyes watered as I saw what happens to many dying people, especially those who suffer added burdens of poverty and isolation.
It is hard to know whom to admire most. The patients who struggle to preserve dignity amid end-of-life crises certainly stir respect, among many other responses. But so do members of the health care staffs – physicians, nurses, aides, hospice workers, and others – who struggle to relieve pain and help patients die with some degree of peace.
Dying this way is denied to altogether too many Americans. Surveys show that most of us want to die at home. However, the stark reality is that four out of five of us actually die in hospitals or nursing homes. And, even worse, many of us die in pain that could and should be controlled and relieved. One of Bill Moyers’ prime reasons for creating this series is to change the American way of death.
Some of the doctors one meets in this series are trying to do this, while struggling against the force of the medical establishment and national priorities. The pioneering physicians shown here, along with their nurse collaborators and other professionals, display both deep sympathy with patients and their families, and, at the same time, passionate disapproval of the system under which they have to work.
A wonderfully compassionate nurse named Edwina Taylor says of her dying patients, “That’s the greatest gift you can give to a person, is to really listen.” Diane Meier, a physician who started the palliative care unit at Mount Sinai Medical Center in New York City, says of her nine years of medical training, “ I did not have a single lecture in pain management.”
Greg Gramelspacher, a doctor who works with poor people in Indianapolis, says, “I’ve seen too many people die in our intensive care unit in ways that you or I would never want to die.”
And Amos Baily, a youthful-looking, marvelously sympathetic doctor in Birmingham, Alabama, is trying to introduce palliative or comfort care, into the mainstream of medical practice there. “I saw bad things happening,” he comments, and I wanted to fix it.”
The first patient mentioned here, Bill Bartholome, said of one group of his care providers, “Dying without hospice is like having surgery without anesthesia.” As if in commentary, the founder of the Zen Hospice Center in San Francisco, Frank Ostaseski, says of hospice work, “We’ve been doing this with each other for hundreds of years – we’ve just forgotten.”
Bill Moyers thinks the time is ripe for radical change. If we are to improve the chances for a good death, citizens must act now. Moyers hopes that discussion groups all around the country will form to talk about the issues and to plan agendas for change.
This column can provide little more than an introduction a series rich in detail. More information is available at 800 962-2973. Related material can be found on the web at http://www.pbs.org/wnet/onourownterms/community/index.html.
Richard Griffin