U.Va. center stresses patient comfort and dignity in the final stages of life

By Anne Bromley

Jackson Smith

Dr. Carlos Gomez, medical director of the Center for Hospice and Palliative Care, talks with a patient. The center's aim is relieving suffering and making dying better for the patient.

Speaking quietly, the nurse updates the rest of the health care team. After describing the patients' conditions -- all six have terminal illnesses, some are close to death -- she adds her personal observation about their emotional state, the state of their soul even.

"This woman looks frightened. When I go in, she's lying there with her eyes closed, but whenever she sees the hospital staff, she seems frightened. She may need some spiritual support," says nurse Brenda Welch.

The meeting was typical for medical rounds at U.Va.'s Center for Hospice and Palliative Care, located in University Hospital.

The team consists of Dr. Carlos Gomez, the center's medical director since it opened in 1995; another nurse, Karen Boyle; social worker Bonnie Stewart; a research assistant and a respiratory therapist. Although the center is small, with only six private rooms, it has helped about 2,000 patients in those five years.

The U.Va. Center for Hospice and Palliative Care When faced with a terminal illness, many patients want to make the remaining days of life as comfortable and dignified as possible. At this point, medical treatment cannot improve the disease, and a special kind of care is needed. • Care that focuses on relieving pain and discomfort. • Care that addresses the feelings and issues that arise when a loved one is dying. • Care that is specially tailored to each patient's and family's needs and beliefs. We recognize dying as part of the normal process of living. Our program affirms life and neither hastens nor postpones death. We're working together to provide compassionate care in the last stage of life. For information, call 982-0555.

"Gomez has emerged as a national leader in palliative care. He includes the spiritual dimensions," says David Cattell-Gordon, director of community relations for the U.Va. Cancer Center, of which the hospice center is part.

Gomez, who recently appeared in a segment of Bill Moyers' PBS special on dying in America, "On Our Own Terms," says that he is interested in all of the questions that surround the dying process.

"What constitutes a good death? What language do people use from the cultural and religious beliefs they bring?" he asks.

He is part of a growing, but still small, group of medical personnel who are embracing care of the dying -- with honesty and with, Gomez says, "whatever it takes."

Addressing and managing pain is a big component. It might seem a simple equation that if someone is suffering, you start by employing the arsenal of drugs that researchers and companies have developed. But that is not something doctors have been trained to do, Gomez admits. It's one of the things he's working to change for those with terminal illnesses.

U.Va. residents now must go through a rotation on this unit. "The difference is night and day in their being comfortable with pain management, with death and dying," says Boyle.

The discomfort with the dying process is partly a cultural problem. "Americans, and hence physicians, act as if death were an option," Gomez says. "They're trained to treat every problem as if it's fixable."

For everyone, he says, it's important to talk with your family ahead of time and while you're healthy about your wishes for care at the end of your life. His group would like to establish a transition house for individuals near death whose care is too complicated for families at home but not as acute as intensive care. It would also be an alternative to nursing homes.

"The facility would be part respite, part residential," and staffed by professionals who could give a high level of care, Boyle says. "The community would do well to have free-standing houses for patients where family members could come at any time," she says. "It breaks your heart to send someone out to a nursing home."

"We all die in our own unique way, as we have lived in a unique way," says Cattell-Gordon. "The patient and family drive what support is needed."

Sometimes there's no family to go home to. Family members can't get time off work, or they live hundreds of miles away.

Palliative care is not just about the last few days of life. It can continue for a few years. "People come in and out for symptom management,² Gomez explains. "I like to say that hospice and palliative care is not about dying; it's about living well until you die."

The center has made all the difference in the lives of John Daniel Scott and his wife, Anya. She was appalled by the care -- or lack thereof -- that her husband, who has throat and tongue cancer, was receiving elsewhere, and a friend told her about Dr. Gomez and the center.

"He was in so much pain. He hadn't eaten in almost eight months," Anya Scott says. Her husband got an appointment at U.Va. within a day of her first call and was admitted to the palliative care unit about 24 hours later. In only a few days, his pain was under control and he was able to eat solid food again. The couple, who have a young child, recently even went on a vacation.

"When you're in the kind of pain Dan has been in," she says, "everything is affected -- it's emotional. You lose faith, hope. ... We were afraid Dan's death would be horrible. Now he's more relaxed, because he's in great hands.

The U.Va. center is committed to exploring medical options and taking advantage of the medical expertise close-at-hand.

The patient's primary doctor stays on the medical team. Not only does Gomez call on the specialists in the Pain Management Center, he can find out about clinical trials and see if his patients are eligible.

"We are rich in human resources here at U.Va.," Gomez points out. The University, for example, is building an impressive team of bioethics specialists. Before the TV series, U.Va. sponsored a town meeting to discuss barriers to -- and opportunities for -- support and dignity in end-of-life care, with Gomez and Cattell-Gordon on the panel. They were joined by Jonathan Moreno, director of U.Va.'s Center for Biomedical Ethics; Cindy Westley, a nurse who is community care manager at the U.Va. Health System; and Susan Goins-Eplee, director of patient support services at the Cancer Center, who appeared with Gomez in the Moyers special talking with medical students. She is also U.Va.'s chaplain.

The center staff acknowledges that that their work is not easy. But every morning they have a chance to discuss cases, and that helps. They also go to the memorial services.

"I think keeping in your feelings is unhealthy," Gomez says. "Some people just wrap themselves around your heart, and you can't help but be affected."

Nevertheless, staff turnover is low, according to Cattell-Gordon.

"People stay working here because it's hopeful." They feel they're making a difference in people's lives. It's a special privilege to be invited into one of the most intimate times of people's lives, he said.