Tough decisions not getting easier

A growing concern among medical caregivers

Despite the growing need for patient information on end-of-life decision making, provider compliance with advance directives still is not uniform. In some cases, hospitals neglect to provide patients with advance directives at all, while in others, physicians refuse to abide by them.

Although the reasons for noncompliance may range from personal to political to religious reservations, some experts on geriatric care point to the traditional view within the medical establishment that adheres to a literal interpretation of the Hippocratic oath. In other words, "do no harm" often is translated into "heal at all costs."

"Physicians look at dying like a failure," says Ruth McCorkle, PhD, FAAN, RN, professor of oncology nursing and director of the Center for Advancing Care in Serious Illnesses at the University of Pennsylvania in Philadelphia. Since their priority lies in treating people, when the inevitability of dying dawns, their attitude changes, she says. There is no longer a connectedness to the patient, often not even to the illness.

But as Dr. McCorkle sees it, it is precisely this connectedness - to the family, the caregiver, and to the decision for his therapy - that makes the inevitable process of dying less traumatic.

A pioneer in end-of-life decisions

Bernard Hammes, director of medical humanities at the Gundersen Lutheran Medical Center in LaCross, WI, agrees. "Here at Gundersen Medical Center, we consider the patient's informed consent and the involvement of the patient's family and physician simply good patient care," he says. It's a team approach that alleviates much of the stress involved in planning for end-of-life decisions.

The 4,500-employee Lutheran facility has teamed up with the smaller Catholic Franciscan Skemp Medical Center in LaCross to offer a comprehensive program on end-of-life decision planning. The staff of both centers, trained to inform and assist patients and their families in making use of the available options, include nurses, social workers, and hospital chaplains. Physicians are encouraged to take part in the program, Hammes says. However, once a patient has issued an advance directive, the treating physician is required to abide by it.

At Gundersen, an information package called "Respecting Your Choices" offers patients and families a comprehensive approach to implementing advance directives. (For details, see box, p. 80.)

The Congressional Patient Self-Determination Act of 1991 was designed to inform patients of advance directives during prolonged hospital stays and assure that medical caregivers respect their wishes and instructions regarding life- prolonging therapy.

Since passage of the law, numerous organizations have sprung up all over the country lobbying for changes and disseminating information on end-of-life planning tailored to every state, creed, and personal need. Last Acts, a nonprofit organization headed by former First Lady Rosalynn Carter, endorses a bill that encourages hospitals to help terminally ill patients die at home.

Another nonprofit organization, Choice in Dying, that bills itself as "the inventor of living wills in 1967," offers numerous publications on its Web site. Some of those explain both federal and state laws that govern the use of advance directives and the patient's right to execute them.

Obviously, end-of-life decisions must be discussed and agreed on by both the patient's family and the medical caregivers, especially the treating physicians. Yet, Steven Miles, MD, associate professor of medicine at the Center for Bioethics at the University of Minnesota in Minneapolis, sees a great need for training doctors to get involved with patients and their families who are facing these issues. "Physicians have been taught to keep their distance," he says. "Their [medical] training, together with our cultural views on death and dying, make them aloof to the most trenchant human experiences."

A general internist by training, he felt a personal commitment to expand his expertise to geriatric medicine 20 years ago. Despite a growing awareness of the special medical, social, and ethical needs of the nation's aging population, elderly patients are being neglected and undertreated, he says. Patients still are subject to poor pain control, poor depression management, and a great deal of overmedication. Often, not even their basic requirements for nutrition, shelter, and hygiene are met, let alone their emotional needs, he adds.

McCorkle agrees that society must focus more on the growing demands of elderly care, which require a different medical and ethical approach. "Dying is as individual as giving birth. Just as some woman have a harder labor than others, some people die harder than others," she says. Instructing all caregivers - including physicians - in the process of dying and focusing on alleviating the patient's pain, fear, and anger will make it easier on all concerned.

Though many nursing departments at universities, hospitals, and hospices offer lectures, short courses, and workshops on end-of-life counseling, the greatest numbers of attendees are nurses, social workers, and chaplains, says McCorkle. She bemoans the fact that few physicians make use of them.

Physicians left out of the loop

According to Joseph Auslander, MD, director of the division of geriatric studies in the school of medicine at Emory University in Atlanta, "The school trains physicians in general geriatric medicine. Geriatric care is only a part of the curriculum." Specifics, such as counseling on end-of-life decisions and advance directives for medical instructions are left to nurses, social workers, hospital administrators, and chaplains.

Arthur Derse, MD, JD, associate director for medical and legal affairs at the Medical College of Wisconsin's Center for the Study of Bioethics in Milwaukee, says end-of-life preparations have to begin with the family physician. He says such efforts should be directed not just to the elderly, but to all patients, and they should be specific about what to do, when, and by whom.

Discussions on end-of-life decisions and techniques on how to communicate them to patients and their families are part of the medical training, and they are compulsory for all second-year medical students at the school. However, Derse is well aware of the fact that the Wisconsin legislation was supported by the medical and religious community. That may give outsiders a "skewed" view on the subject, he feels, since physicians, hospital administrators, and directors of medical and nursing schools in other states may subscribe to a different school of thought.

But according to Doris Kittle, RN, who works in geriatric nursing, community education, and information referral at the assisted-living community at Wesley Woods Geriatric Center in Atlanta, "People are only now beginning to understand the problem."

Until recently, geriatric care specialists took a "scatter approach" to medical and social care, Kittle explains. With funding from a variety of sources - including a major grant from the Robert Wood Johnson Foundation - a nonprofit organization called Georgia Health Decisions is importing the Wisconsin experiment to the peach state.

Georgia Health Decisions has been asked to initiate a pilot program to educate the health care community and the public on end-of-life decisions. Development of the program will be statewide and include city, county, and private health systems, including Wesley Woods and Promina- managed Piedmont Hospital in Atlanta.

According to executive director Beverly A. Tyler, the target date to initiate the program is Sept. 1, 1998. Hoping to expand the program from the first seven communities over the entire state, Tyler plans a major media campaign, distribution of posters and displays, workshops for medical caregivers, and resource kits for hospitals, clinics, and libraries.