Why is it, a man asked, that Americans seem to enjoy their terminal illnesses so much?

That was the startling question posed during a recent videoconference for On Our Own Terms: Dying in America, a four-part public television series that will air nationwide September 10-13, 2000. The series was produced by Bill and Judith Davidson Moyers, who recently granted an interview to Second Opinion.

The respondent, the Rev. Wayne Muller, replied that dying is the first sabbatical most Americans ever get: "Everyone is so busy and moving so quickly that terminal illness has become . . . the only time when people are given enough permission to slow down and attend to matters of the heart that might not be attended to otherwise."

At this point, said Judith, "You could hear a murmur of recognition spreading throughout the videoconference; it rang so true to everybody."

In an era in which death has been declared "a series of preventable diseases," a lot of energy has been expended to make the experience of end of life go away. Dying is an affront to the American spirit of invincibility, and so the issue is often greeted by silence and denial. "Americans don't do dying well," Bill observed. "If something is not going to happen, why talk about it?"

The conspiracy of silence is pervasive. Many people, it seems, rely on the mind-reading powers of family and friends to intuit the care they want at the end of life. While working on the series, Judith informally asked people whether they had spoken with their doctors about their wishes. She discovered that most had had no conversations at all with their doctors, minister, or family members-the very few people who should be at the top of the list. Bill underscored this point by recalling "a survey last year that showed that Americans were more likely to talk to their children about safe sex and drugs than to their terminally ill parents about choices in care. One out of four Americans over age forty-five said they wouldn't bring up issues related to their parents' death, even if the parent had a terminal illness and less than six months to live. In fact, all the research shows that Americans expect their loved ones to carry out their wishes about end-of-life care, but have not made their wishes known. One out of two Americans say they would rely on family and friends to carry out their wishes, but 75% have never taken the time to make clear how they wish to be cared for."

It wasn't always this way. Death used to be a familiar and ever-present reality, a natural part of life. And most people got a good look at it up close, because dying took place at home. The dying person, surrounded by family and friends, might even be joined in bed by children and grandchildren who had gathered for the occasion. The corpse was laid out in the front parlor, where visitors were received, or fellow church members took turns keeping vigil at the funeral home.

But when the On Our Own Terms team began work on the series, Judith said, an informal poll of the younger staffers revealed that not one of them had ever witnessed someone's dying, or even seen a dead body. These days the home is the place where death is least likely to take place, with 80% of us dying in a hospital or other institution-this, despite an equal percentage of people who say they want to die at home. Americans, Bill observed, don't mind death when it comes to us on the big screen, in an action film, for example. But we don't want to face it up close.

And we don't have to. Now, as undertaker and poet Thomas Lynch says, we can make death disappear-the body, the casket, the funeral, the burial-with a credit card.

In spite of this culture of denial, death and dying and all the difficult issues related to it are beginning to engage our attention. This burgeoning movement is led by the baby boom generation, for whom end-of-life issues have edged out retirement as their chief concern. Boomers know they can't avoid death, but they want to shape the circumstances of their own dying.

The goal of On Our Terms is to get end-of-life issues out in the open and give people a new vocabulary for talking about them, said Bill. His wife agreed: "Our goal on this series and any other difficult series that we've done, such as Close to Home, which was our series on addiction, is to get this subject on the table. And to say, you can talk about this. . . . And what happens, inevitably, is that we open the floodgates. People are dying-no pun intended-to talk about it."

Among those who have seen a preview of the series, a common response has been to exchange personal stories about death. These connections have laid the groundwork for a wide-ranging discussion about death and dying in America, a conversation facilitated by the intensive outreach effort accompanying the series. Because, as Bill observed, Americans "are not organized to make dying a community reality," local outreach efforts will assess the state of end-of-life care in their own communities and develop and implement collaborative plans for change (see www.thirteen.org/onourownterms for details).

One area where change is urgently needed, and the one on which On Our Own Terms focuses, is medical care of the dying. A survey of the 126 medical schools in the United States found that only five include end-of-life care as a part of the curriculum. "What's been neglected is the medical aspect of dying," Bill said. "How can we do that better?" Some doctors say they have never been taught about how to care for dying people: it's the great taboo subject.

Breaking the taboo requires that physicians talk openly about death, among themselves and with patients and families. One of the most compelling episodes in the series follows a physician who takes the time to educate a family about what is going to happen to their dying relative. Judith recounted the scene: "Dr. Sean Morrison does something for us that I believe is a first on television and a first in most people's experience. He sits around a table with the family of Joyce Kerr, out in New Jersey. She's left Mt. Sinai and she's gone home to die. Her grown-up daughters are caring for her, and her husband. And hospice has come. As it turns out, it was the last day of her life. Dr. Morrison is there, and he sits with the family around the breakfast table and describes what death looks like and sounds like. Then he answers questions about what to do. Now most of us have never heard this. The way he presents it, it's so nonthreatening. It's so acceptable." The scene is emotionally powerful, coming, even to the viewer, as a near-palpable relief. Why, then, must this fundamental information, this care and compassion, be so terribly rare?

Families and doctors aren't the only ones unprepared to deal with dying. The clergy are also "woefully unprepared for confronting the end of life," said Bill. Like clinicians, added Judith, "clergy have said to us that they have almost no preparation" for ministering to the dying and their families. But some congregations see a gap they can fill: taking care of the caregivers, offering respite care and group support for families.

Pain control is a crucial aspect of end-of-life care, and one that worries many people, since studies show that many terminally ill people die in pain. "Once we deal with the pain, then we can deal with suffering," said Bill. Pain control and palliation, have generally not been done well in American medicine. While the series zeroes in on this failing, it also highlights a number of innovations in palliative care and efforts to provide this care to all members of society, including the poor and the uninsured.

Much of the discussion about end-of-life issues in this country has, in the last few years, been driven by the debate about physician-assisted suicide.. The series takes up this issue in a powerful segment that showcases the stories of two dying people. One lives in Oregon, where physician-assisted suicide is legal; the other, in Louisiana, where it is not. The painful realities, dilemmas, and options-or lack of options-confronting dying people are illustrated here with unflinching clarity. The series does not take a position on the issue, and Judith reiterated that advocacy isn't a goal: "We're not expert here. The experts were the people who are dying, and their caregivers."

The experiential expertise and compassion of the caregivers are indeed extraordinary. Viewers will likely have a number of reactions to the Herculean labors of physicians, nurses, hospice volunteers, siblings, children, and spouses of these dying people. On the one hand, their resourcefulness and selflessness is both astonishing and admirable; on the other, a sophisticated health-care system that is so ill-equipped, or so unwilling, to attend to the needs of the dying is cause for despair. The needs of the dying are often overwhelming: pain control, symptom management, insurance coverage for hospice care, medications, and home care, specially equipped vehicles, and respite care for their families, whose burdens are enormous. It's all on display here, including the ambivalence of caregivers, who, wrecked by the physical, emotional, and economic strains of their tasks, may understandably come to tire of the drama in which they play second fiddle to the star of the show. Further, as Bill observed, "The people in the audience sometimes begin to regret the length of the play." Then they feel guilt over the regret. But in the end, it is these people who have to pick up the pieces and go on living. "The suffering," said Judith, "is not just on the part of the person who is dying."

Besides these large issues, the importance of small, concrete steps is emphasized-for example, the designation of a durable power of attorney for health care decisions. "It may not necessarily be your spouse or your child, because you may want to spare them," Judith said. "Someone said to us that the hard thing is asking, and the hardest thing is accepting when you are asked."

Despite that the fundamental questions of most dying people are existential ones-why me? why now?-the series deals only incidentally with religious and spiritual concerns at the end of life. Part of the difficulty in addressing these issues is the increasing variety of religious experience in this country, Bill explained. "We're entering a new religious landscape in America, and away from a homogenous, male-oriented, culturally conservative, European Protestant heritage… Faith is such a subjective [experience]-we didn't know how, in a limited series, to deal with it in a way that would be universal in its accessibility."

Another difficulty was the reluctance among the clergy to have a camera crew following them around as they ministered to the dying person, added Judith. "Asking a clergy person to allow us to accompany him or her on visits to the terminally ill is asking too much. We needed to find another way." While the series lays bare some of the most intimate moments in the lives of dying people and their families, spiritual issues add yet another layer of complexity, one that still lies partly hidden.

For many people, too, physical suffering may obscure existential concerns. "Several of our physicians and nurses speak to this issue," Judith said. "In most cases, your symptoms are not going to be treated unless you are lucky enough to be in a palliative care unit or in a hospice situation where they know how to treat symptoms instead of trying to rescue you. Once you get a comfort level established, then the dying person is likely to start wanting to deal with spiritual issues and other issues, such as family relationships. They will say, for example, 'I need to talk to my son; we've been estranged for years.'"

Bill summed up by saying: "I'm not sure there is a good death, but there are easier ones." In many creative ways a whole host of people are trying to make the end of life easier. They are trying to provide better care for the dying, educate clinicians, support families, and bring about change, in individual cases, in their own communities, and nationally. The suffering shown in this series is surpassed only by these extraordinary works of compassion, care that must, as a moral and ethical imperative, become perfectly ordinary-and not only in America.