In a Caring Congregation, Great Comfort for the Dying
By Bill Broadway
Four months ago, a doctor told Joan Dannettell she had three weeks to live.
Her first thought was that she couldn't bear to tell her husband, Ralph. The next was of the two books she had wanted to write: for her grandchildren, an alphabet book based on Bible verses; for the family archives, a personal history of Christmases past.
And the house. "It was a mess. The drawers were a mess," Dannettell, a retired reading teacher, said last week at her home in McLean. The house was clean and neat, and her husband sat next to her on the sofa as she told of her plans to teach her youngest granddaughter to read before fall.
"That's what I've asked of God," she said, "to give me this summer."
Although she's dying of breast cancer, Dannettell, 67, just might get her wish. She no longer needs an oxygen mask to breathe. Her voice and appetite have returned, and her swollen arm is back to normal size. "I can wear my rings again," she said.
Such improvement is what many patients dream of, what some might call a "miracle" toward the end of a terminal illness.
But Dannettell, joyous in her renewed physical and spiritual strength, is realistic about the prognosis. "I have no illusions," she said of the cancer that was first diagnosed 13 years ago and has spread to her bones, lungs and liver.
The journey has been painful, and Dannettell credits many people with helping her thus far.
Her husband, a retired Navy pilot, is first on her list, but she also derives strength from letters and phone calls from family and friends in 14 states and from visits by a chaplain, nurse and social worker from the Hospice of Northern Virginia.
Most important, the Dannettells said, they have received substantial support from the congregation of Columbia Baptist Church in Falls Church, where they have been members for 27 years.
"There's been such an outpouring of love from the people in the church," she said. "Three have been here nearly every week, a nd one comes every other day." Others have called or written notes or prayed for her through a "prayer chain."
But Dannettell's experience is the exception, say ethicists and faith-based caregivers. They are concerned that religious institutions don't do enough to help educate members about end-of-life options or to comfort them through the last days of their lives.
"How often I hear: 'My father went to church his whole life. He was a leader in the church and very much a member. But he got old and sick, and when he most needed someone to visit, to give Communion, we had to beg the church to show up,' " said Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University.
Many churches and synagogues aren't aware of dying members' conditions, according to the Rev. Ronald H. Sunderland, co-creator of the Foundation for Interfaith Research and Ministry in Houston, which trains lay teams to assist dying patients in their homes.
As for guiding parishioners through the layers of ethical and legal decisions involved in the end of life, churches "aren't doing squat," said David H. Smith, director of the Poynter Center for the Study of Ethics and American Institutions at Indiana University.
A notable exception, Smith said, is a program administered by the Committee on Medical Ethics of the Episcopal Diocese of Washington. Commissioned in 1990, the committee organizes programs to educate parishioners on such topics as genetic testing, health costs, assisted suicide and the use of "advance directives." Advance directives include the conferring of medical power of attorney and the use of living wills to prevent doctors from prolonging life by "extraordinary means."
In December, the committee published a report on the moral issues of assisted suicide and euthanasia, presenting Christian arguments on both sides. Smith called it "the best serious statement on a biomedical ethics issue by an American religious community that I have seen in 20 years."
But for the most part, religious organizations are guilty of "a terrible failure to instruct their own," according to Andrew Lustig, an ethicist with the Institute of Religion in Houston.
Part of the reason is society's general aversion to discussing death, part of it is an abdication of responsibility on the part of mainline religious leaders to secular proponents of "death with dignity," Smith said. Despite a "tremendous reform movement in death and dying in the last quarter-century, people still are not dying in circumstances they would like," he said.
Perhaps nothing has contributed more to religion's overall negligence than its obsession, along with the rest of American society's, with debating physician-assisted suicide, ethicists and health care specialists said.
On Thursday, the U.S. Supreme Court unanimously upheld laws in New York and Washington states that make it a crime for doctors to give life-ending drugs to mentally competent but terminally ill patients. At issue was whether dying people have the right to ask to die in the same way they have the right to refuse artificial life-support treatment.
The ruling means that states will continue to make their own decisions on the legality of assisted suicide. In 1994, Oregon became the only state to legalize assisted suicide, but legal challenges have prevented the law from going into effect. The state legislature has decided to put the issue before Oregon voters again in November.
Although many national religious bodies have passed resolutions or constitutional amendments opposing assisted suicide (the Unitarian Universalist Association is the only major denomination to support its legalization), studies show that up to three-fourths of parishioners of various faiths support active euthanasia or assisted suicide, said Courtney S. Campbell, professor of ethics at Oregon State University.
"There is a clear disconnect between what's being taught by the hierarchy and what people in the pews are thinking," he said.
That gap exists, Campbell said, because people of faith share the same anxieties about dying as everyone else: that they will experience great pain and that medical technology will prolong their agony beyond hope of recovery.
What they often don't know, he said, and what religious leaders have an opportunity to tell them, is that the art of pain control is advancing rapidly and that the proper use of advance directives can ensure a limit on medical care.
"Facing death is not all bad," said Christina Puchalski, a physician at George Washington University Hospital who helped develop the GWU medical school's courses on the effect of spirituality in healing, the first such required courses in the nation.
"The biggest misconception in our society is that dying is miserable," Puchalski said. "It doesn't have to be. You don't have to be [kept alive by] a ventilator [respirator]. You don't have to experience pain."
Puchalski calls assisted suicide "another American quick-fix approach," not unlike using drugs or alcohol to forget one's problems, she said.
"The best death is with people who are spiritually guided not just by a minister but by physicians, social workers, family and friends," Puchalski said. "You don't have to shoot them up with something. You can hold their hand."
The Rev. Jeanne Brenneis, a chaplain and director of the Center for Bioethics at the Hospice of Northern Virginia, said it is important from a religious perspective to recognize the difference between pain and suffering when facing end-of-life decisions.
"Pain is physical, a response to nerve stimulation [caused by] tissue damage," Brenneis said. "Pain can be the cause of suffering, but all suffering is not caused by pain, and not all pain can lead to suffering. Suffering is a perceived threat to your existence" and can be caused by "immense grief or bereavement, such as the loss of a child" or the fear of abandonment at the end of life by friends, family, religious community or even God.
Some terminally ill patients believe that suffering "brings spiritual awareness and draws them closer to God," while a few think God is punishing them for some sin, Brenneis said. Others get "very angry" and say: "God doesn't love me. God has abandoned me. If He were with me, I wouldn't be suffering."
Still others focus on a tortured relationship with a friend or family member and the commandment to "be reconciled to thy brother" (Matthew 5:24). In one recent case, a dying woman was visited by a sister she had not spoken to for more than 40 years. They talked and discovered that the thing they had argued over was untrue. Their reconciliation was "a great gift to the one who lived on," Brenneis said.
Most patients she has encountered believe in some form of an afterlife, whether a Christian Heaven or Buddhist oneness with the universe, Brenneis said.
And most have some form of spirituality, whether Jewish, Muslim, Hindu or New Age.
That's where the religious community comes in, to reinforce the patient's beliefs and provide support through prayers, meals and other gestures of kindness, she said.
But the community must know that the person is in need, said Sunderland, of the Interfaith Ministry, which trains two-person volunteer teams to help care for at-home AIDS, Alzheimer's and dementia patients. He prefers to recruit teams from a church or synagogue where the patient is a member.
The religious community might be unaware of the person's condition through oversight, but sometimes the family hides the person's deteriorating condition, he said. "It's sort of a secret no one talked about."
The Dannettells did not allow fellow church members to overlook what was happening to Joan. Although they stopped attending church two years ago (Joan Dannettell was embarrassed about losing her hair during chemotherapy treatments), they kept in touch with friends and "called in" the prayer committee when her health declined precipitously last December. On Christmas cards, she told family and friends that the cancer was worse and requested their thoughts and prayers.
Never once, even on that "blackest day" when she was told of her limited future, did Dannettell consider asking for medication to end it all. For those who do, she said, "I would hope they would do what we did: pray, read the Bible and get all of your friends involved."
She has begun writing her Christmas remembrances and collecting verses for her grandchildren's alphabet book, such as A for "All have sinned and come short of the glory of God." Soon the Dannettells will attend worship services again, sitting in the balcony at first.
"I'm still a little self-conscious," she said.
© Copyright 1997 The Washington Post Company