Diane Meier, M.D., buys tall stacks of paperback editions of Tolstoy’s classic story, “The Death of Ivan Ilyich.” This she does so that the students, medical residents, and others whom she supervises can read this inspired account of a man who refuses to face the truth about his approaching death. She believes that this narrative can help awaken young doctors to end-of-life issues.
Dr. Meier, founder of the palliative care program at Mount Sinai Medical Center in New York City, takes a leading role in the second program of Bill Moyers’ public television series “On Our Own Terms.” This series, broadcast in Boston this week, champions what Moyers calls “a different kind of care” for people who cannot be cured of life-threatening disease.
In his famous novella centering on the dying Ivan Ilyitch, Tolstoy showed in stark detail how fatal illness devastates a man who is emotionally cut off from family and friends and from his own inner self. His pain, both physical and spiritual, is intense and he suffers a devastating crisis of belief. Only in his last moments, through the compassion of a young man servant, does Ivan discover his soul and see the darkness of his dying yield to light.
Health care pioneers such as Dr. Meier are shown in the Moyers series as leading the way toward a set of medical priorities different from those normal in the American health care system at large. They focus first on pain and work to control and relieve the suffering of their terminally ill patients. These physicians are trying to get their colleagues to recognize that pain is both debilitating and unnecessary.
Doctors are not the only ones who fail to see the importance of dealing with pain. Patients themselves often believe it undesirable to eliminate pain altogether. So do members of their families.
That’s the way it was with Matt Wilson, only 23 years old, who is shown dying at Mt. Sinai. His family fears that, if Matt’s pain is relieved, then he will lose his desire to fight for life.
Similarly, another patient, Harold Resnick, refuses pain medication at first because he is afraid that taking medication will be equivalent to resigning himself to death. Dr. Meier begins talking with these patients and their families so that they can see how relieving pain can help them cope better with their actual situation.
Watching these people wrestle with devastating illness is admittedly not easy. I have taken no pleasure in doing so, nor in writing about the Moyers series. However, I stand convinced that end-of-life issues have crucial importance for everyone. I return to these questions, despite the fearful emotions they stir in us, because I believe that dealing with the issues in advance can increase our chances of accomplishing vital human tasks before dying.
Joyce Kerr is another Mt. Sinai patient who is dying of cancer. She decides to leave the hospital so that she can die at home. There she will have support from hospice services and from family members. Her daughter, Nancy Akbari, reasons this way: “How many nights did she sit with me, it’s just nice to be able to try and give some of that back.”
Mrs. Kerr’s doctor, Sean Morrison, visits regularly and talks with her about her experience. He also helps family members by explaining, with much compassion, what they can expect at each stage of their mother’s dying.
To make this approach to care of the dying the usual way will require drastic changes in the American health care system. Physicians, nurses, and other medical team members must learn to practice medicine differently from the way they learned it in school. They have to recognize that attention to the patient is ultimately more important than attention to the disease. Thus talking and listening become vital approaches to patient care.
These pioneers must also deal with a health care system that has different priorities. Financial incentives often act as a barrier to appropriate care. A huge number of Americans lack health insurance to cover them in times of crisis. Regulations frequently act as barriers to people getting the kind of care they need.
But the health care reformers shown in the “On Our Own Terms” series are motivated by their conviction that the present system does not serve dying people decently. “I’ve seen too many people die in our intensive care unit in ways that you and I would never want to die,” a doctor tells Bill Moyers.
Palliative care – the relief and control of pain along with attention to the physical, emotional, psychological, and spiritual needs of dying patients – can make a vital difference in the way we die. Bill Moyers and his collaborators deserve credit for raising the issues unflinchingly and presenting, in real-life situations, professionals, patients and their families, who have the courage and wisdom to show how it can be done.
Richard Griffin