Given a choice, the vast majority of Americans, 80 percent, would choose to die at home. But while more people die at home in Utah than in many parts of the country, hospice services are still underutilized, according to the president of the Utah Hospice Association.
Helen Rollins believes people don't use hospice services because of reluctance of patients, families and physicians to talk about -- or even acknowledge -- death. And she thinks that people are afraid to take someone home to die because they don't realize how much support and expertise is available.Rollins and Dr. Jay Jacobson will be featured in today's Deseret News/Intermountain Health Care Hotline. From 10 a.m. to noon, they will be available to take phone calls about aspects of end-of-life care, from advanced directives to pain management.
While hospice isn't for everyone, she believes it has much to offer some people who are facing the end-stages of a terminal illness.
"Hospice is unique in that the care is truly provided in a team approach," she said, adding that the team includes nurses, physicians, volunteers, social workers, clergy and "any other discipline of person who might be needed in that particular situation," such as a physical therapist or a pharmacist.
In virtually all hospice cases, the patient lives at home.
Hospice team members have special training in dealing with terminal illness and are available on a 24-hour-a-day basis. But the service itself is intermittent, so family and friends provide the bulk of the care, she said.
The hospice team role is more one of advising, teaching and supporting. "Attention is paid to the physical needs of the patient as well as the emotional needs of the situation. Pain is a big part of hospice, because usually 60 percent of these patients have problematic pain. And I think this doesn't get said enough: Patients who are in pain are so consumed by the pain that they can't deal emotionally with the fact of their death. We want to help people be comfortable and alert so that if they choose, they can deal with the emotional aspects of dying."
Some patients don't choose hospice, she said, simply because they wait for a physician to suggest it. And "most physicians are invested in curing patients, so they are not going to recommend hospice. I think it's appropriate that as families start having difficulty they begin requesting hospice services."
That means getting expert help when it becomes hard to cope at home, managing pain or the physical disability of the disease.
For the elderly, hospice is a Medicare-covered benefit that provides a broader range of service than regular Medicare for terminally ill patients. And most insurance companies also offer a hospice benefit.
Utah is home to 17 hospice programs that, while scattered, manage to provide services to most of the state.
Perhaps the greatest thing hospice brings to end-of-life care, Rollins said, is honest acknowledgment of what's happening, which she called "profoundly important."
Hospice help includes more than just seeing that pain is controlled, she said. Rollins lists helping people say things to one another, from the personal to the practical (What should happen to my minor children?) as one of the most important tasks. And they can help people get back in touch with religions from which they've strayed, if it's desired.
Some of the tasks are purely practical, like lining up medical equipment. "Most (caregivers) didn't want to be a nurse or they would have gone to school to become one," said Rollins, who is a nurse case manager at LDS Hospital. "They don't know where to start. So we do a lot of very practical tasks, like lining up bedpans and beds and teaching people how to turn a loved one in bed or get out of bed."
Hospice teams do nothing to hasten death -- or to slow it down. Instead, the programs focus on making the final stages of an illness as undisruptive and pain-free as possible.