c. 1999 Religion News Service
UNDATED _ Many ethicists and clergy feel about assisted suicide advocate Dr. Jack Kevorkian as the Internal Revenue Service does about tax evaders. They believe his involvement in assisted suicide is illegal, unethical or, at best, misguided.
At the same time, however, they grudgingly acknowledge that Kevorkian, sentenced last month to 10 to 25 years in prison for giving a lethal injection to a man with Lou Gehrig’s disease, has not only raised the assisted suicide issue but also helped spotlight the equally important ethical question of how the nation cares for the terminally ill.
That’s all to the good, they say.”Kevorkian has raised to the forefront of public consciousness … end-of-life issues,”said M.C. Sullivan, chief operating officer of the Midwest Bioethics Center in Kansas City, Mo.”Unfortunately, the debate has been very polarized. The focus should be on improving end-of-life care. But people think the only options are either dying a miserable death _ in horrible pain _ or enlisting the aid of a Kevorkian.” Former first lady Rosalynn Carter, honorary chair of Last Acts _ a coalition of more than 300 organizations and individuals working to improve end-of-life care _ wrote in a recent USA Today opinion piece that the assisted suicide debate”has put in the public eye … people’s very real fears about dying: fears that the medical system will not respond to their pain and suffering, fears that no one will really listen to their needs and anxieties.” And according to Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health Sciences University in Portland,”The public (now) knows more about end-of-life issues because of the assisted suicide debate. The same thing has happened in medicine. Doctors are more likely to turn to options for pain management.” Tolle said the debate on assisted suicide”has been a wake-up call for doctors, family members and clergy. In the past we haven’t done the best possible job (of caring for terminally ill people).” But the good news, Sullivan said, is that most people don’t need to die agonizing deaths. In recent years, physicians, nurses and other health care professionals have begun providing palliative care to terminally ill patients.”Once a diagnosis of terminal illness has been made, there comes a moment when patients, working with their doctors, decide if they want their care to be redirected from aggressive, curative treatment to palliative or comfort care.” The hospice movement, which developed in this country in the 1970s, was the impetus behind the field of palliative care. Hospices don’t try to cure terminally ill patients; they help people to die in comfort in a non-hospital setting.”Palliative care addresses the suffering of the patient,”said Sullivan, who is a nurse, attorney and ethicist.”It involves pain management as well as helping people with the emotional, psychological, social and spiritual components of their suffering.” Dr. Gary Reiter, a palliative care specialist at Baystate Medical Center in Springfield, Mass., which recently received a $450,000 grant from the Robert Wood Johnson Foundation to improve end-of-life care for terminally ill kidney dialysis patients, said he is particularly concerned with helping people explore the meaning and spirituality of both their lives and their pending deaths.”If I just address their physical needs, I won’t be addressing their whole problem,”he said.”That means caring for their psychological, social and spiritual well-being.” He recalls a recent visit he made to an 82-year-old patient in a nursing home.”He was on dialysis and had gangrene in his right foot. He’d decided not to have it amputated. I didn’t come in and talk to him about how his foot felt _ did it hurt? Was it tingly? That wasn’t the most important initial stuff.”Instead, I talked to him for 30 to 40 minutes about what his life had been like. About what being in the service was like. About what his marriage and job were like. Stuff about who he really is. That was as important as talking to him about where the tingling was.” You can’t talk about dying without talking about religion, Reiter added.”Death is at the center of religion. Awareness of death gives meaning to people’s lives. When someone asks, `Why must I die?’ the next question is, `How shall I live?'” Ironically, few clergy have had training in providing spiritual care to people who are dying, said Kenneth J. Doka, a Lutheran minister and senior consultant for the Washington, D.C.-based Hospice Foundation of America.
The general public may be aware of this lack of training. According to a 1997 Gallup Poll, though 41 percent of the survey’s 1,200 respondents said they valued prayer at the end of life, only 36 percent would turn to clergy for counseling when they faced death. Over 80 percent said they’d look to their families for comfort, and 61 percent indicated they’d turn to their friends.
Doka, who is also a gerontology professor at the College of New Rochelle (N.Y.), said he was”not knocking seminaries. They have a limited amount of time to teach an infinite number of things. But they should look carefully at the work they’re doing on death and dying. Much of what’s being done isn’t terribly current or cutting edge.” Sandy Kuka, a parish nurse at Augustana Lutheran Church in Denver, says:”I think (dealing with end-of-life issues) is hard for clergy and health-care professionals. Many see death as a failure, rather than seeing dying as a part of the natural process of life.” Doka takes a different view.”Clergy aren’t any more afraid of death than anyone else,”he said.”It makes us confront our own mortality. If we have training, we do better than some physicians on this.” Providing spiritual comfort and counseling to someone who’s dying is a”human to human”encounter, said Bryan Austill, a United Methodist minister who chairs the spirituality task force of the Colorado Collaboration on End of Life Care. Often clergy, especially parish ministers, he said, are more comfortable caring for dying people who share their faith.”A pastor should listen to the other person’s story rather than impose answers. A clergy person should bring in resources and use rituals from the tradition of the dying person,”he said.
But spirituality shouldn’t become too compartmentalized, Austill warned.”Within our culture there’s been a shift toward incorporating spirituality into all aspects of life rather than separating it off from the rest of life. The worlds of science, faith and the law are coming together to address spiritual issues in end-of-life care.” Spurred on by the assisted-suicide debate, this fusion of spirituality and end-of-life care is gaining momentum across the country.
Aging With Dignity, a nonprofit group in Tallahassee, Fla., has unveiled a new living will called”Five Wishes”that asks people to describe what type of spiritual comfort they’d like at the time of their death.
The document, written in plain, reader-friendly English and reviewed by the American Bar Association, is legally valid in 33 states and the District of Columbia. It encourages people to talk about what they would most like not to discuss: what kind of care they want to receive at the end of their lives.”Five Wishes”asks people not only what type of medical treatment they’d want if they became terminally ill _ when or if they’d want life support systems turned off, for example _ but also what type of spiritual support they’d find helpful such as whether they want people to pray for them, hold their hand, or play a favorite piece of music for them when they’re dying.
The Hospice Foundation of America has released a series of audiotapes titled”Clergy to Clergy”to help clergy learn more about how to care for dying people and their families. The Midwest Bioethics Center will hold a Compassion Sabbath weekend in 2000 in which churches and synagogues will come together to worship and discuss ways of caring for terminally ill people and their families.
Last Acts, whose members included the American Medical Association and the American Cancer Society, has issued a”blueprint”calling on health-care providers and clergy to meet terminally ill people’s physical, emotional and spiritual needs.
Dr. Ira Byock, author of”Dying Well”and a Last Acts member, said at a news conference unveiling the blueprint that”as long as there is life, we can treat people with medically excellent care, but also tender loving care.”DEA END WOLFE
