Improving Care When There Is No Cure
During his career as "Doctor Death," Jack Kevorkian focused attention on a traditionally neglected issue: end-of-life care. Terminally ill patients were choosing suicide over prolonged and painful deaths. They obviously believed they had only those two choices.
But there is another one. Patients do have the option of "dying well," says Patricia Murphy, PhD, RN, grief therapist at UMDNJ-University Hospital (UH). Murphy and her husband David M. Price, MDiv, PhD, assistant professor of medical ethics at UMDNJ-New Jersey Medical School, have dedicated their careers to improving end-of-life care. As an intensive care nurse for many years, Murphy witnessed death often. "I knew we could and must do it better," she says. "Nobody deserves to die alone with Jerry Springer on in the background."
The couple recently received a $99,000 grant from the Healthcare Foundation of New Jersey to implement the Project on End-of-Life Improved Care in Newark (PELICAN) at UH. "Most people, given the choice, would prefer to die at home. Yet roughly 63 percent die in a hospital," says Murphy. "In Newark the number is the highest in the country, at 78 percent. We hope to have an impact on those who die here in subsequent years."
Price points out that physicians who ignore pain in patients who are nearing death don't do it consciously or with malice. "Medicine is organized by biosystems," he explains, "and pain doesn't fit in anywhere. Pain is what the patient says it is. Physicians would be confident if they could measure pain with a machine." The project's goals are two-fold: to educate healthcare professionals who work with dying patients, and to provide services at UH for terminally ill adults and their families. Murphy and her five-member team, which includes Price, are teaching the American Medical Association's new Education for Physicians on End-of-Life Care (EPEC) curriculum to attending physicians and residents in the departments of medicine and surgery, and to medical, surgical, trauma, and intensive care nurses. The focus is on enhancing skills in communication, ethical decision making, palliative care, psychosocial support and symptoms management. Other team members supported by the grant are Joyce Davidson, MS, a specialist in psychosocial and spiritual care, and Aloysius Cuyjet, MD, MPH, a cardiologist and critical care specialist.
"We're putting major emphasis on pain management," Murphy says. "A dying patient doesn't have to suffer, especially since there is no ceiling on the amount of morphine he or she can be given." Another topic given special attention is the termination of life support. Most patients and/or their families don't know their legal rights, Murphy explains. Can they request the respirator be unplugged? Is a feeding tube ethically required? Exactly how much weight does a living will carry? How should a physician answer a family member who asks, "Are you 100 percent sure she won't get better?"
Already in place, the free consultation service can be requested by anyone who knows the patient. "We'll help facilitate those hard conversations, for instance, or maybe arrange for visits by young children," says Price. "We may set up a massage, simply sit and listen, or hold a patient's hand. Whatever the person wants or needs, we'll try to help." The team, on call 24 hours a day, seven days a week, often utilizes other professionals at UH. Experts on AIDS, substance abuse, and pain management, to name just a few, are being called upon for their expertise.
Part of the grant will be used to buy music CDs, relaxation tapes, books on tape, tape players and other supplies to make the last days and hours of life more pleasant. Murphy says her dream is to have a special unit for the terminally ill.
"We could put curtains on the windows of each room, keep the lights low, play music, and allow loved ones to stay around the clock. But this is a good start. We can't keep people from dying, but we can make the time before they die less stressful and more meaningful - for them and their families."