Moyers Examines ‘the Trip of a Lifetime’ on His ‘Terms’

In the remarkable new four-part PBS series, “On Our Terms: Moyers on Dying,” Emmy Award-winning journalist Bill Moyers visits with several terminally ill people, their families and caregivers who share their intimate feelings about death and dying.

Among those Moyers features are Bill Bartholome, who chose to forgo chemotherapy and radiation after being diagnosed with esophageal cancer and learning he had just six months to live. And there is Jim Witcher’s story. A veterinarian and horse breeder in the last stages of the progressive neuromuscular disease, ALS, Witcher’s struggle is looked at alongside that of his wife, Susie, who accepts her role as caregiver despite the toll on her emotionally and physically.

Moyers, who has been responsible for such acclaimed PBS productions as “Moyers on Addition: Close to Home,” “Healing and the Mind” and “The Language of Life with Bill Moyers,” recently discussed “On Our Own Terms” by phone from his New York office.

Question: Set the stage for us as you began to film “On Our Own Terms” and what led you to tackle this subject.

Answer: On the very first day of my filming for this series . . . I was in San Francisco filming with Frank Ostaseski at the Zen Buddhist hospice [he founded]. I took a call during a tape break and they said my mother had died. It wasn’t unexpected. It took my mother three hard years to die. I made a lot of mistakes in those three years. Here I was a world-traveled, experienced, knowledgeable man but I didn’t know enough about the breakthroughs in palliative care--comfort care. I mistook the inscrutability of doctors for wisdom and I failed to challenge them even though they were not providing her with enough comfort care. I didn’t learn enough about hospice until it was almost too late.

I vowed that hopefully the series would help other people to avoid my mistakes. I wanted to show Americans the difference good care makes and how much we owe good caregivers.

Q: Why don’t Americans want to talk about death?

A: That’s the key question and there are several answers. Death is un-American. We Americans don’t like the idea of limits, and the ultimate limit is death. Talking about death means confronting limits and we simply don’t want to do that. In fact, in our research we came across a survey that [said] Americans are more likely to talk to their children about safe sex and drugs than to their terminally ill parents about their choices in care. One out of four Americans in that particular survey said they wouldn’t bring up issues related to their parents’ death even if the parent had a terminal illness and had six months to live.

Q: We’re putting our heads in the sand.

A: Exactly. We are in denial. All the research shows that Americans expect their loved ones to carry out their wishes about end-of-life care. But they haven’t made their wishes clearly known. We did a lot of research before we ever decided to do the series and in one survey, one out of two folks said they would rely on family and friends to carry out their wishes, but 75% have never taken the time to articulate clearly how they wish to be cared for. It is astonishing when you think about it. None of us would take the trip of our lifetimes to Europe, Asia or Africa without preparing for it. We would do everything to get ready for that trip of the lifetime; well this is the trip of a lifetime and we don’t prepare for it.

When I was growing up death was a family, social and religious event. The only memory I have of my grandfather was when I was 5 and he died at the age of 64. All I remember is his corpse there in the parlor in the little house in Hugo, Okla., where they lived. The family prepared the body, carried the body to the burial site, dug the grave and the family laid his body into that grave. All of us had some experience 50 years ago with a death in the family and we were exposed to caring for the dying. My wife’s grandmother died at home. That was common in those days. But now we have hired death out.

Also, the mobility of American life has separated families. Many adults even into their middle age may never have lived near or cared for someone who is dying. The most common images of death in America are those presented by the news media, the entertainment media, which tend to focus on the sensational, the violent or the sentimental--death that is distant, impersonal with no familiar context.

Q: Did you find that doctors don’t know how to handle death?

A: The American Medical Assn. found that only five out of 126 medical schools had distinct required courses on death and dying. While I was reporting this series I interviewed a dozen medical residents who came through seven years of medical courses without having a single course in end-of-life care. So doctors are not prepared to deal with this either.

There was a very important survey not long ago. It said what [people] most fear is reaching the end of their lives hooked up to machines. They don’t want to die in the hospital or nursing home if they can help it. They want a natural death in familiar surroundings with people they love around them. They want some choice and control over the circumstances and they don’t want to die in pain. They want pain control tailored to their particular wishes and needs.

That is not what people get. Four out of five people die in a hospital or in a nursing home or some other institution outside of the home, and that is not what people say they want.

Q: Do you foresee changes in our attitudes about death and dying?

A: There are two powerful dynamics at work in what I think is a coming revolution in caring for the dying. One is palliative care; the other is hospice. In the broadcast in the second episode you’ll meet some teams of palliative care physicians and nurses who do it right. They are finding ways to comfort people who cannot be cured. What was astonishing to me as a journalist in reporting this story is that we have made so much progress in pain management and so few people benefit from it.

Q: The dying people you profile all seemed remarkable individuals and remarkably brave.

A: They were unbelievably magnanimous in letting us into their lives at this most vulnerable time. Why did they do it? I think they did it in the belief that their stories would help all of us live in the light of death. And also because there is this deep-seated desire to have a witness to death. Several people said if we wanted to record their death we could, but we didn’t because I think there are some places the camera shouldn’t go, some intimacies journalists shouldn’t violate.

* “On Our Own Terms: Moyers on Dying” airs Sunday-Wednesday, 9 p.m., on KCET and KVCR. Companion Web sites are https://www.pbs.org/onourterms and https://www.thirteen.org/onourownterms.