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Ambitious PBS series looks at improving the way we die


Woody Allen may have said it best. “I’m not afraid of dying, I just don’t want to be there when it happens.” That might be a widespread feeling, but most people remain fascinated by death.

It may be an element of life as old as the race, but our imaginations are never sated. Despite an immense body of literature on the subject, our interest remains great enough to support a constant stream of new books.

An ambitious new public television series by Bill Moyers is scheduled to air Sept. 10-13, 9-10:30 EDT each night. Titled “On Our Own Terms,” the series looks at all aspects of death. Context for the series: Organizations to deal with death and coalitions to discuss it are springing up all over the land.

Death isn’t something that just happens anymore. People now have choices, some of them stretching the limits of ethical consideration. Wound through all the questions is the thick thread of religious tradition and practice, often comforting not only in the traditional sense but also in helping to make sense of new possibilities surrounding death.

The public discussion hasn’t yet reached what author Malcolm Gladwell calls “the tipping point,” where ideas and messages spread like viruses, but even prime-time television is looking at dying in a new way. Death, or euphemistically “end of life,” has entered the spotlight as baby boomers enter senior citizen status.

With aging boomers expecting to live as much as 30 years longer than their grandparents, end of life angst has attained dinner table respectability. The other side of the issue is the role boomers are playing as caregivers to aging parents, who are often reluctant to talk about death.

Fr. Charles Meyer, an Episcopalian priest who is chaplain at St. David’s Medical Center in Austin, Texas, said the World War II generation had more social structures and “didn’t need to talk about a lot of stuff.” He said that one way to start the discussion with older people is by talking about one’s own wishes at the end of life and then saying, “What about you?”

Stepping out ahead of the crowd was Jim Towey, a boomer who was legal counsel for Mother Teresa. After working with her in caring for the dying in India, Towey put together Aging with Dignity, a nonprofit organization whose emphasis is on “improving care for those at end of life.”

Towey’s concern is for the uncertain future. “The minute the economy starts to sputter who’s going to get squeezed? The poor and the elderly. They always do.” He wanted to start the discussion well in advance.

Part of Towey’s motivation is his concern with society’s drift toward euthanasia. “I saw how much easier it would be to kill them than to care for them,” he said, referring to his experience in India. In his opinion, Third World countries care for their dying more humanely than developed ones.

“Here, people in pain are isolated and treated like objects,” Towey said.

A February Aging Today article states that two-thirds of the 2,805 Connecticut physicians surveyed confirmed that if physician assisted suicide were legalized, they would aid in a patient’s death. Not unexpectedly, the study also showed that a physician’s religion affects views on assisted suicide. Followers of Judaism, Catholicism, Lutheranism and Islam strongly condemn it.

One initiative of Aging with Dignity is Five Wishes, a menu of end of life choices that goes into detail about what an individual wants to happen at the moment of death and after. Moving a step beyond living wills, health care surrogate and do-not-resuscitate documents -- all efforts in helping medicine to know when to stop -- Five Wishes asks the person to determine things like “If anyone asks how I want to be remembered, please say the following about me.”

Experts in end of life care and the American Bar Association Commission of Legal Problems of the Elderly helped to write Five Wishes, which is accepted in 33 states. Another of the organization’s programs is educating the health care community.

Towey’s idea isn’t all that new. Ethical wills, in which people attempt to pass on their values to future generations, have been around since the 12th century. Ethical wills of antiquity, much like modern ones, contained burial instructions, blessings and discussions of personal and spiritual values. The first scriptural ethical will was recorded in Genesis 27:27, when Isaac mistakenly gives his blessing to son Jacob instead of Esau, the first-born.

Minnesota physician and home hospice director Barry Baines says a recent resurgence of interest in the practice reflects the desire of baby boomers, who may have done well materially, to also “pass on values and life lessons while alive.” Ethical wills, he writes, “reflect the voice of the heart,” and are a love letter to your family.

An expert on aging

Moyers, 59, said jokingly that he has acquired the credentials he needs for the upcoming Public Broadcasting Service miniseries.

“The very experience of time has made me an expert on aging,” he said. On a more serious note, Moyers points out that in the last 4,500 years of human existence 27 years were added to life expectancy, but an additional 30 years were added in just the last century. “Americans don’t like the limits that come with aging,” he said.

He compares the emergence of end of life issues to the woman’s movement that revolutionized maternal health care. “We learned to make arrival better; now we have to make dying better,” he said. He noted Americans see movies where “zillions are gunned down,” but are uncomfortable with individual deaths. He said the change came when people stopped dying at home where the family had a part in the caring. “Then we hired death out.”

Nancy W. Dickey, past president of the American Medical Association, agrees with Moyers. Addressing 300 health care professionals at an end of life conference, she said the key is recognizing “death isn’t the enemy.” She said America became a “death denying” society in the 1970s, when we devalued age and began to pursue eternal youth.

Meyer said, “The last place you want to be is in a hospital when you die!” As technology, medicine and treatment techniques increased during the last half of the last century, society began to believe they were required in every circumstance. The author of A Good Death: Challenges, Choices and Care Options says the ethical question to ask before heroic measures are instituted on a dying person is, “Are we restoring the patient to an acceptable quality of life?

“If not, get out of the way and allow a natural death to happen.”

Meyer said one problem is that health care staffs are uneducated about how people should die. As an example, he points out the spectacle of sick old people being rushed to emergency rooms just so they won’t die in nursing homes. He is a strong advocate of AND (Allow Natural Death) orders and says they should replace the legalistic DNR (Do Not Resuscitate) orders.

Physician and writer Ira Byock notes, “Dying is almost always hard, but it need not be horrible.” Palliative care -- efforts to keep patients as comfortable as possible while avoiding extraordinary measures to keep them alive -- strives to give opportunities for the individual and family to grow at this “poignant and often precious time of life.”

Focused on end of life care

Beyond the well-known and widely available hospice program -- a palliative care movement that began in the 1970s to tend to the dying in their homes -- new programs and organizations are rapidly emerging. Many focus on making physicians more comfortable with the dying patient and dispelling death as a medical failure. Out of 126 U.S. medical schools in 1998, only four required a course on death and dying

The Robert Wood Johnson Foundation has funded 23 community/state partnerships to involve citizens/patients in institutional and policy change for high quality end of life care. One of them, “Last Acts,” engages health professionals, religious leaders and the public to develop a common agenda on the topic. Teaching caregivers to be advocates for themselves and their aging parents is primary.

Another new organization, Americans for Integrity in Palliative Care, advocates for better health care for the dying and opposes euthanasia. Still another, Partnership for Caring, is developing a grass roots campaign to demand legislative initiatives for the dying, on a state and federal level.

Christina M. Puchalski, a physician, writes, “Spirituality is often the way dying people give meaning to their suffering.” Aging with Dignity’s Jim Towey echoes the thought: “The moment of death is holy, not a medical event.”

Even though they know better, people still think they’re going to live forever. Towey just wants them to be better prepared for that inevitable moment described by author Agatha Christie: “I live now on borrowed time, waiting in the anteroom for the summons that will inevitably come.”

The basic points of Five Wishes are:
  • The person I want to make care decisions for me when I can’t.
  • The kind of medical treatment I want or don’t want.
  • How comfortable I want to be.
  • How I want people to treat me.
  • What I want my loved ones to know.
Copies of Five Wishes may be purchased by contacting Aging with Dignity, P.O. Box 1661, Tallahassee FL 32302. Web site: www.agingwithdignity.org

National Catholic Reporter, August 25, 2000