TUSCALOOSA, Ala. - You might expect that most families receiving hospice care -- only available to those believed to have six months or less to live -- would have multiple discussions with their loved ones and professionals about end-of-life issues. But that’s not the case, according to Dr. Rebecca Allen, an assistant professor of psychology at The University of Alabama.

“Death is one of the best-kept secrets of hospice,” Allen said.

Often, it’s the dying person’s family who is the least willing to thoroughly discuss issues like ‘do not resuscitate’ agreements, said Allen. “In general, the patients are a whole lot more willing to have these discussions than are the family caregivers,” said Allen, who has worked with some 30 terminally ill patients and their families during her research career.

Allen, in a recently begun 5-year project sponsored by the National Institute on Aging, is working with terminal patients, their family members, and health care professionals to help generate more frank and open discussions of issues related to death and life-sustaining treatments, including CPR and tube feeding.

The UA psychologist and associate director of the University’s Applied Gerontology Program, hopes this project can supplement hospice care and enable family members to better manage the stress associated with care giving. “Caregivers often get so involved with care giving, they have no time for self-care. That’s really the missing piece of hospice care,” she said.

As part of the Care Integration Team project, Allen and her collaborators spend time with volunteer families who are receiving hospice services. The families are divided into two groups. One group receives typical hospice care while the other group receives additional therapeutic support, designed to teach the caregiver problem-solving skills useful with medical decision-making and self-care. At the end of the five-year project, the two groups will be compared to gauge what types of additional support would best benefit caregivers and the terminally ill.

“If you are going to talk with somebody and their family about the nitty-gritty of end-of-life decisions, you have to do that in a very gentle way. We are finding these kinds of discussions have to take place within the family and they have to have them over and over and over again,” Allen said.

Two segments of the population seem to suffer the most under the current system. “African-Americans and rural families are radically underserved,” she said. Cultural differences, such as less familiarity with hospice or palliative care and more distrust of the health care system, are among the factors detrimental to providing these groups with the needed care. Public policies regarding reimbursement for palliative care are also problematic, she said.

As the fastest growing segment of this nation’s population is the elderly, the already overloaded health care professionals, including those in hospice, are going to face increasing difficulties managing the needs of their communities -- unless changes are made, Allen said.

While it may seem easier for family members to avoid discussions with a dying person about the specifics of what will arise as the person becomes weaker, failure to talk about it can lead to prolonged pain and stress for everyone involved. One of the primary stressors reported by hospice professionals is that families sometimes call 911 rather than hospice when their patient begins to actively die.

If a ‘do not resuscitate’ decision is not made, then when a dying person stops breathing, family members phone 911 rather than hospice, Allen said. By law, emergency officials must respond, and by law, they must do everything within their capabilities to revive the person, she said. “CPR can be an ugly thing,” she said. With a weakened cancer patient, for example, whose body has already been devastated by the cancer and the powerful cancer treatment drugs, CPR can cause cracked ribs, Allen said. The end result is the dying person spends their final days of life in a hospital versus dying more peacefully at home.

Allen, who has worked for some 10 years with the dying and others dealing with severe trauma, says she learns much from them.

“One of the fabulous things I have found is that I gain so much by being able to witness, at least on a weekly basis, the strength of the human spirit,” Allen said. “I have worked with combat veterans, women who have experienced sexual abuse, dementia caregivers, and palliative caregivers. By working with individuals who face pain and
struggle each day, I learn perspective, self-efficacy, coping and peace.”

Families who are receiving hospice care and who live within a 60-mile radius of Tuscaloosa can learn more about the possibility of participating in the study by contacting Allen at 205/348-9891.