U Nursing Professors Study Aims to Help Families Learn to Advocate for Terminally Ill Patients

U Nursing Professors Study Aims to Help Families Learn to Advocate for Terminally Ill Patients

Jun 29, 2003 6:00 PM

As medical advances increase longevity, the nations hospices and long-term care centers are rapidly filling up. Yet few family members have the knowledge or skills to advocate effectively for loved ones who must spend their final days in these facilities. A study by a University of Utah College of Nursing faculty member aims to turn all that around.

Patricia Berry, Ph.D., APRN, assistant professor in the colleges Acute and Chronic Care Division, said many family members often assume nothing can be done to alleviate pain, increase independence, and improve the quality of life of terminally ill patients. "This results in more elderly people spending their final days in unnecessary pain and discomfort," she said.

Long-term care nursing homes are generally effective in rehabilitating patients, which is their main objective, said Berry. However, when a patient reaches the final stage of illness, his or her needs change drastically. This is where long-term care centers and patients families can work together as partners in meeting new goals, she said.

The need to equip families with advocacy skills will gain urgency as the American population ages. A government report says that by 2030, one in every five Americans will be 65 or older.

The first phase of Berrys study, which began last year, was funded by the College of Nursing Research Committee. Her goal is to create an intervention program that will help educate and coach family members on advocacy. Berry recently facilitated three focus groups: two groups composed of adult children of patients who died in long-term care facilities and one group composed of spouses and siblings. She will use findings from the focus groups in designing and testing an intervention program.

Berry said long-term care nursing homes provide a unique service, which comes with a special set of challenges. Previous studies show a number of factors that make it difficult for terminally ill patients to get quality treatment. These factors include high staff turnover, nursing assistants inexperience or lack of knowledge in caring for the dying, and infrequent visits by doctors, physician assistants, and nurse practitioners.

"Standing up to doctors, nurses, and hospitals on behalf of family members doesnt come easy," said Berry. "Families need information and appropriate skills to overcome their assumptions and misconceptions."

The advocacy program Berry is developing will feature one-on-one coaching between a nurse prepared in adult education, family support, end-of-life care, and pain management, and a patients family members.

# # #

Visit our News Archive for a complete list of previous News.