Court Ruling Highlights a Burden of Faith
By Bill Broadway
Ethicists and caregivers opposed to assisted suicide heard an echo and a challenge in the Supreme Court's ruling last week that terminally ill patients have no general constitutional right to ask a doctor to help them die.
"The State has an interest in preventing suicide, and in studying, identifying and treating its causes," Chief Justice William H. Rehnquist wrote in upholding Washington state's ban on prescribing lethal medication. "Research indicates . . . that many people who request assisted suicide withdraw that request if their depression and pain are treated."
With those words, echoing anti-suicide arguments in numerous friend-of-the-court briefs, the court shifted the focus in the "right to die" debate from an individual's rights to "community obligation in the care of the dying, religions in particular," said Philip Boyle, senior vice president at the Park Ridge Center for the Study of Health, Faith and Ethics in Chicago.
The challenge for the religious community is to take a larger role in end-of-life discussions, he said.
Boyle, a former Dominican priest, said that does not mean engaging in a "protracted conflict" over assisted suicide the court's ruling allows states to legalize the practice. Rather, he said, the religious community should provide assistance at a grass-roots level by educating members on specific states' laws about living wills and other legal issues, as well as offering community support throughout an illness or crisis.
Health care practitioners say the toughest decisions faced by terminally ill patients and their families involve the use of life-sustaining equipment such as a respirator or dialysis machine; the use of feeding tubes and intravenous hydration; and the use of pain medication that might hasten death.
Such decisions are "spiritually related" because they deal with the end of life, said the Rev. Jeanne Brenneis, director of the Center for Ethics at the Hospice of Northern Virginia and ordained minister in the Christian Church (Disciples of Christ) and in the United Church of Christ.
"Secular" caregivers also recognize the spiritual dimension of death. "I'm not a particularly religious person, but when the end comes, the business of my relationships with family and other people, what I bring to the world and take from the world needs to be resolved," said Karen Kaplan, executive director of New York-based Choice in Dying.
Choice in Dying, which among other services monitors legislative action and offers an 800 number to help people resolve end-of-life conflicts, evolved from the organization that pioneered the living will 30 years ago. The group is neutral on the issue of assisted suicide.
In a living will, a person gives advance instructions on how far physicians can take treatment in the event of an accident or serious illness. The second type of advance directive, the "durable power of attorney," appoints a proxy to make decisions after a patient is no longer able to do so.
Kaplan emphasized that advance directives are not always about "turning off care." Some people want a "full-court press" by the hospital, she said. "Somebody might say, 'If I get hit by a truck and there's a chance to fix me up and get me on my feet again, I want to do it.' "
Since implementation of the federal Patient Self-Determination Act in 1991, hospitals and nursing homes have been required to inform patients of their right to sign an advance directive and to have it noted on their chart if they have one. But advance directives are often ignored by the doctor or the family, Kaplan said.
Among 922 "crisis calls" to Choice in Dying received during a recent 30-month period, three-fourths involved a dispute between a patient or family member and the health provider over life-sustaining treatment, she said.
Most involved artificial nutrition and hydration. In 75 percent of the calls, the patient had signed a formal advance directive.
In some cases, the physician insisted on using a feeding tube when the family or the patient through an advance directive had asked that death be allowed to take its natural course, Kaplan said. In other cases, the family insisted on the feeding tube and artificial hydration when the doctor said there was no use.
Doctors often ignore advance directives if the family insists on going against the patient's wishes, because "they will be alive to sue and the patient will not," Kaplan said. She noted, however, that physicians who "act in good faith" regarding an advance directive are protected from lawsuits and that she knows of no case in which a family sued and won because the doctor followed an advance directive.
Most disagreements can be headed off by a person's communicating his or her wishes before an accident or the onset of illness, Kaplan said. Her rule, which she made her two sons follow, is that a person should write advance directives as soon as he or she is old enough to drive.
However awkward it may be, she said, families should discuss each other's wishes about medical treatment so that doctors and other team members can be told at the beginning of a crisis. A patient found to have a terminal illness needs to discuss such issues as pain medication, artificial life support and artificial feeding and hydration. If the doctor is unable to comply with the patient's wishes, the patient should change doctors, she said.
"There should be no surprises" and no feelings of guilt when the time comes to make a decision, she said.
Clarifying and carrying out a patient's wishes are where members of the clergy can be particularly helpful, especially if a family is unsure whether its choices are "moral," Boyle said.
The religious community also needs to be there for those who will survive, he said. Family members often are "frightened beyond belief, afraid to deal with the murky, horrible things. . . . Good pastoral counseling helps people sort out what's going on in their minds."
Courtney S. Campbell, an ethicist at Oregon State University, said the responsibility ultimately falls on the individual to find out about laws, insurance and the financial aspects of health care.
But "religious communities can be the focus of moral discourse," establishing Sunday school programs and public forums at which people can discuss issues of concern, said Campbell, a member of the Church of Jesus Christ of Latter-day Saints. It is time for a "reawakening to profound value commitments that [churches and synagogues] haven't paid attention to until recent events," he said.
From a practical standpoint, the religious community "can provide greater witness and religious ministry to dying patients," visiting fellow congregants in hospitals and nursing homes so they don't feel abandoned.
That would be a true "community of compassion," he said.
GUIDANCE ON END-OF-LIFE DECISIONS
Materials on end-of-life decision-making increasingly are being developed and distributed by national denominational offices. Information also is available through hospices, health departments, doctors' offices and some hospitals and managed-care facilities.
Publications consulted for this series include:
"Assisted Suicide and Euthanasia: Christian Moral Perspectives" (1-800-877-0012, $8.95, plus $3.50 shipping) and "Before You Need Them: Advance Directives for Health Care, Living Wills and Durable Powers of Attorney" (1-800-543-1813, $1.60, plus $1.90 shipping). Both by the Committee on Medical Ethics of the Episcopal Diocese of Washington.
"Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient," by Hank Dunn, Hospice of Northern Virginia (A&A Publishers, P.O. Box 1098, Herndon, Va. 20172, $3, plus 4.5 percent tax for Virginia residents).
Choice in Dying's "End-of-Life Decisions" series, including "Cardiopulmonary Resuscitation, Do-Not-Resuscitate Orders" and "Artificial Nutrition and Hydration" (1-800-989-9455, $3.50 to $5.95 each).
Karen Kaplan, executive director of Choice in Dying, offers these suggestions for advance directives:
Anyone old enough to drive should prepare an advance directive.
Prepare one of each type, a living will and a durable power of attorney. If you choose only one, the power of attorney is more important because it ensures that a personal advocate can represent your wishes to the health care team.
State laws vary, so if you spend long periods in a second location, such as a vacation home, you should have forms for both states. However, many adjoining jurisdictions, including Maryland, Virginia and the District of Columbia, have similar laws and accept one another's directives. In some states, being pregnant nullifies advance directives.
A standard living will instructs doctors to use no "extraordinary means" to keep a person alive. Getting into specifics, such as whether you want artificial nutrition and hydration and painkilling medication, takes the burden of those decisions off your family.
Don't just write down your wishes. Talk them out with everyone who might be involved: family, friends, agent, doctor, pastor or rabbi. There should be no question what your wishes are.
Put the original forms in a safe, accessible place and pass copies around. You or your agent should give copies to a hospital or nursing home upon admission. Although current laws do not require it, ask that your directives be placed in your medical chart.
Advance directive forms for individual states can be downloaded from Choice in Dying's home page, http://www.choices.org.
© Copyright 1997 The Washington Post Company