Talking Together Brings Comfort to Terminally Ill

Innovative group sessions may fill much-needed gap in care

THURSDAY, June 2, 2005 (HealthDay News) -- While the adage "life is short" may seem true for everyone, no one understands this better than those facing a terminal illness. In the time they have left, serious, unsettling questions regarding spirituality, relationships and identity can weigh heavily on their minds.

Experts who work with the dying say precious few resources are currently available to address these types of concerns. But a new program that allows groups of terminally ill individuals to meet and talk out their problems may offer comfort.

"The key issue is to give dying patients the option to connect with one another -- that kind of support group may prove to be very strong," explained Dr. Kenneth J. Doka, a Lutheran minister, professor of gerontology at the College of New Rochelle, N.Y., and senior consultant to the Hospice Foundation of America.

Although he was not involved in setting up the group program, Doka said its goals mirror those of the hospice movement generally: to deal with people's physical pain along with their emotional, psycho-social and spiritual pain.

Right now, those types of services are sorely lacking, at least in the hospital setting, said lead researcher Dr. Douglas Miller, the associate director of the Center for Aging Research at Indiana University, in Indianapolis.

In too many cases, the terminal patient "becomes a non-person, they can get ignored," Miller said. "Classically, in hospitals, the residents [doctors] making rounds would go right past their room."

The same thing can happen with a patient's family and friends, he added. "There are all of those uncomfortable conversations -- 'Let's hope he doesn't start talking about the fact that he's going to die, because what can we say?' "

At the same time, terminally ill individuals face very pressing, end-of-life issues. "Major transitions like these are inherently spiritual, and people start asking questions such as 'What is the meaning of my life?' 'What's my legacy here?' 'Where am I going to next?' " Miller said. "All of these issues come into play. And it's those three areas, in particular, that aren't being addressed."

While working at St. Louis University School of Medicine, Miller and his colleagues sought to create a forum that would enable patients to safely discuss these fears.

In their study, 51 terminally ill volunteers agreed to join a group-talk session that met once a month for 75 minutes in a neutral space over the course of one year. Because different illnesses bring up different issues, groups were divided into three disease types -- cancer/cardiovascular/lung/diabetic illnesses, HIV/AIDS, and a non-disease-specific group labeled "geriatric frailty."

A trained facilitator typically helped spark and give structure to each meeting, but the topics up for discussion were mostly left up to the participants, Miller said. Meetings progressed from less-weighty issues at the beginning of the 12-month program to more challenging topics as the program drew to a close.

"The first goal was to build an environment of safety and support," Miller explained. This meant that members gradually grew more comfortable with one another, building up the trust that enabled them to freely express themselves.

And they did. "It could be something very personal, such as 'My wife, whom I deeply adore and with whom I've had a loving relationship for years, is driving me nuts,' " Miller said. "Or, 'Sex these days is just lousy,' or 'I'm scared to death of dying.' "

Religion plays a major role in end-of-life thought processes, of course, but the facilitators made sure all forms of spirituality were respected.

"If someone said, 'This is what Jesus means to me,' that was great, and it was honored," Miller explained. "But we also expected that person to honor someone who might say, 'All organized religion has been of zero help to me.' "

Unfortunately, the small size of the sample didn't allow the researchers to gather statistically significant conclusions as to just how successful the program was in achieving most of it aims.

Still, "as a preliminary trial, it showed that we were having an effect on the three areas we [targeted] -- depression symptoms, death-related feelings of meaninglessness and better spiritual well-being," said Miller, who is also a scientist at Regenstrief Institute, Inc., an independent medical research facility.

The findings are published in the current issue of the Journal of Palliative Medicine.

Miller said that if he were to conduct the program again, he might have the group meet more often over a shorter time span. The main model for this intervention, breast cancer support groups, "tend to meet once a week or every two weeks," he pointed out.

Doka agreed that the study's lack of statistical power means it provides "very little data that's significant." But he applauded the effort as adhering to the fundamental ideals of hospice care.

"A core part of hospice philosophy is exactly this holistic treatment," Doka said. "Hospice is about living with terminal illness, not about dying."

Miller believes physicians could and should play a much stronger role in helping patients deal with psychological issues linked to serious illness, but he said too many doctors remain resistant to the idea.

Commonly, the attitude is, "That's not what we do -- that's for the priest, the counselor, the spouse," he said. "It's not our job -- we're paid to deliver medicine."

His latest work at Indiana University is aimed at changing those assumptions, however.

"We've gone on to conduct group sessions with physicians that are turning out to be very interesting," Miller said. "They also talked about emotions, relationships, spiritual issues. The most important feedback we've gotten back from physicians is, 'You know, this is a very important issue for me, but I've just never had a place to voice it.' "

More information

Find out much more about issues surrounding end-of-life care at the Hospice Foundation of America.

Related Stories

No stories found.
logo
www.healthday.com