In September, PBS will air On Our Own Terms: Moyers on Dying, a four-part series that focuses on the controversial issue of how our society caresand does not carefor people at the end of life. Produced by veteran broadcast journalists Bill Moyers and Judith Davidson Moyers, the landmark programculled from nearly 300 hours of raw footage shot over a three-year perioddocuments the last months, days, and hours of more than a dozen men and women and their struggle to balance medical intervention with comfort and dignity at this final threshold.
"There is a growing realization that something has gone wrong and that the time has come to fix it," Bill Moyers says, referring to our culture's habit of making the quality of death a lower priority than the quality of life. The series is the first of its kind to bring the camera into this intimate milieu and to explore the dilemmas, humor, and victories of the dying, as well as of their families and caregivers. Far from presenting a morbid picture, the husband-and-wife team, well known for their risky, soul-searching work on television, reveal the human face of mortality and press a central, critical question: What constitutes a dignified death? "How do we build a system," Bill Moyers asks, "that will help us tackle the social, financial, spiritual, and physical challenges of dying so that we can have confidence that our experience of it will be on our terms and will reflect the values we hold most dear?"
I sat down with the couple in their New York office this spring to explore this question, and to find out how this intense assignment affected their personal lives and beliefs.
MM: Did this program's harrowing subject matter cause you any worries beforehand?
Bill: No, although if I'd known how difficult it would be to do justice to these stories, we might not have done it. Getting close to these people and honoring their sensitivity, their vulnerability, and the delicacy of their situation were the biggest concerns we had. It was a challenge to find people who would agree to do this, whose families would agree. Sometimes we would begin filming and then they would be gone in a couple of days.
MM: You don't see anyone die onscreen. Was that a conscious decision?
Bill: We decided that even if someone welcomed us to film their death, we would not. There are some places the camera shouldn't be.
MM: Was it ever too close for comfort for the two of you?
Judith: In the beginning, we worried about our production crews. We thought that maybe we should have some therapy sessions for everybody who was dealing with these dying people day in and day out. We followed some people for ten months or more; you get very attached to them. One day one of the cameramen told me he felt like the Angel of Death. But before it was over, everybody on the crew felt that this had been an amazing experience, and a triumphant story to be a part of.
MM: What prompted you to tackle the subject of death and dying at this particular time?
Bill: Observation and intuition. Two years ago our own son talked for the first time about trying to imagine a world without us in it. Now that the Baby Boomers are becoming the "sandwich generation," caught between adult children and elderly parents, and have woken up to the fact that the death rate has remained unchangedone per personthey're paying attention. The second reason was the AIDS epidemic in the early '80sthat brought death into all our lives and taught us a lot about the necessity of caring.
In 1900, the average age of death was 46. In those days, death came relatively quickly. Today, the average age is 78 and death tends to come slowly, by chronic and progressive means. Because we're living longer and better, death and end-of-life care have been pushed aside as a cultural priority.
In recent years, we've started to realize that we are not taking care of our dying. As children, growing up in the South, we were present for all the deaths in our family. When our grandparents died, we were there in the room, probably sitting up on the bed. We were very connected.
MM: And you consider our current disconnection from dying and death a loss for our culture?
Judith: Yes. Over the years, Bill and I realized that we were never present for deaths anymore. Even funerals seemed disconnected from death! You're rarely invited to funerals these daysinstead you have memorial services three months later. You're told, "Don't send flowers, don't call, there won't be a wake," and so on. The attitude is, let's just get this behind us.
It began to strike me as odd that people were not including death as a part of life in the same way that they include birth. Fifty years ago, women began to say, "What a shame, I don't remember the birth of my first child. They had me so knocked out, I wasn't there and neither was the father." Childbirth was turned into an ailment rather than a natural thing; it was controlled by doctors and hospitals. With the natural-birth movement, that has changed. The death and dying movement is next.
Bill: The year before we did this series, a big study was published on this issue. One chapter began with Goethe's last words: "Mehr licht!" ["More light!"] We need more light on the subject of dying. Not a single resident physician I interviewed for this program had been given a substantial course on end-of-life care in medical school. Insurance companies and the government are spending a huge amount of money on end-of-life care, but unfortunately most of it is spent in the last 30 days. Instead of putting you in an ICU for 30 days where you can't speak and your family can't be with you, maybe you would like to stay home at a much lower cost and have nice meals brought in by a hospice person.
None of us want to die a death we deplore in a place we despise. In 1997, 87 percent of the American people told Gallup that they want to die in their homes rather than in a hospital, yet 80 percent die in health-care facilities. Medicare needs to rethink how its money is being spent. This is a hotly debated issue.
MM: Where do you stand on the issue of physician-assisted suicide?
Bill: I am not pleased with how television has treated the issue. We've allowed Dr. Kevorkian to frame the debate in the most simplistic way: Are you for or against? In fact, the question is not that simple. In Oregon, where residents have access to physician-assisted suicide, the dying are not necessarily eager to leave; they don't want to hurry out the door prematurely. The deeper issue is, How do we care for people at the end of their lives so that they don't fear being abandoned or taken advantage of? My own position is that a compassionate society would have a deep bias in favor of allowing patients to determine where, when, and how they die. But we have to provide safeguards, to make sure that they're not exploited in a vulnerable moment by avaricious relatives or indifferent doctors.
For one woman we interviewed in Oregon, it was an enormous psychological relief to know that this choice was available, if she reached a point that her pain became too excruciating or the burden on her family so onerous that hanging on was an insult to life. A man we spoke to, who had ALS and lived in another state, did not have that choice and suffered a great deal because of it.
MM: Self-determination and control seem crucial to end-of-life care. Most of the people you interviewed seemed less afraid of death than of the dying process itself, and specifically the challenge of pain.
Judith: You know that Woody Allen quote? "I'm not afraid to die, I just don't want to be there when it happens." What we discovered is that a lot of people do really want to be there when it happens.
Bill: Most of the people whom we talked to wanted to experience the experience, and did not want to be too drugged up. I think that is a mature position. An ordinary person understands that you can't avoid death. But it is how we leave that becomes the source of fear for us.
Judith: We have learned so much about pain and pain management that we once were not that aware of. This is a great country to be sick in but not a great country to have pain in. We have excellent high-tech medicine and if you can be cured, this is where you want to be. But if you're in a lot of pain that's never going to go away, it would be better to be in England, Germany, Japan, or any of the Scandinavian countries. It's not that we don't know how to control pain here, but medication is so highly regulated. How much medication you can have varies from state to state. Your doctor may not have the freedom to medicate you adequatelyhe might lose his license. So a lot of people die in needless pain. This needs to be addressed culturally as well as personally.
MM: Are you saying that all of us should be preparing ourselves now for the process of dying?
Bill: The primary purpose of this series is to help people get ready for the journey of death as they would prepare for any other trip. The most important thing you can do practically is to sign an advance directive. Assign a health-care proxy. I leave it to you to nurture your soul in the light of what you believe may follow death, but if you don't have an advance directive, getting there may be so painful that you won't be able to enjoy it. You will want to know about pain management, what medication you need, what you can ask for. Before my mother died at 91, I made a lot of mistakes, which I hope this series helps other people avoid.
Judith: There is such a thing as existential pain, tooand medication to help you deal with that.
MM: Do you mean such drugs as Prozac?
Judith: Yes. Even dying people can benefit from not being depressed. Not every doctor understands that.
MM: On the other hand, strange as it seems, I've personally encountered many people whose mental state actually improved after their doctors gave them a terminal diagnosis.
Judith: Absolutely. Several people told us that this was the best time of their life. One of the men on the program told us that it was not until he could come into contact with the "skeleton" that he was becoming that he began to realize how every day is so precious. He was given a diagnosis of six months, but he lived four years. He said, "If you are told that you will never see spring again, and you live to see spring, spring takes on a whole new life."
MM: It becomes miraculous.
Bill: No matter what we may lose, it is possible to respond to life with tenderness. I think that is the message of the show. It is uncanny to me how we can let the mundane realities of life so deaden and numb us. Just the wonder of being here is so much. I am not sure I would have come to that insight without having done this series.
MM: It seems paradoxical that a show about death can be so uplifting and life-affirming.
Judith: As one of the men we spoke to said, death is like sugar, the element that sweetens life and makes it finite and precious. Too many of us wait to take our sabbaticals, vacations, and so on, until we are terminally ill. We hope that people who are watching this program, regardless of how old they are, will take that to heart and start thinking, "Maybe I should start living in the light of death now before I get to the end."
Mark Matousek's latest book is The Boy He Left Behind: A Man's Search for His Lost Father.
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