End-of-life decisions examined

By LOIS BAKER
Contributing Editor

Why are so many people willing to relegate important medical decisions to strangers?

That is the question a UB nurse-anthropologist is attempting to answer in a study on medical advance directives funded by the National Institute of Nursing Research.

In the new $156,000, 15-month study, Mary Ann Jezewski, associate professor of nursing and principal investigator on the grant, aims to find out why 80 percent of the U.S. population has not signed an advance directive, a document that clarifies a patient's wishes concerning end-of-life care if they become unable to speak for themselves.

An advance directive simply can name another person, a proxy, who is authorized to make such decisions. Or it can take the form of a "living will," which might include a do-not-resuscitate order or prohibit using unusual measures to sustain life if there is no hope of recovery.

"We've had 10 years of federal legislation and 13 years of state legislation in New York giving people the right to self-determination of care," Jezewski said. "The intent of the federal Patient Self-Determination Act of 1990 was to make sure that all patients knew they had the right to designate someone to make decisions for them if they couldn't. So far, only 20 percent of the population has done so.

"Many people assume family members have a right to decide a loved one's treatment," she said. "What they may not know is that without an advance directive naming a health-care proxy, doctors in New York State don't have to follow the family's wishes."

Information gathered since the work started in September shows that often people don't understand what a proxy is, don't know the difference between an estate will and a living will, and don't realize they don't need a lawyer to draw up the latter. Most said that no one, including their physician, had talked to them about an advance directive, Jezewski said.

"This situation is partly a result of our attitudes about death and dying. People don't like to talk about it, and nurses, physicians and health-care workers generally are no more comfortable than anyone else."

Health-care professionals who are willing to broach the subject, however, may not have the right information, Jezewski found. She conducted surveys with both oncology and emergency nurses in California, Texas, Illinois and New York to determine their knowledge, attitudes and experience with advance directives. Results showed participants rated themselves highly experienced and confident with the subject, but scored only 60 percent on average on a test of their knowledge of advance directives.

Surveys conducted by others with physicians showed similar findings, Jezewski said.

Most studies on the use of advance directives to date have been conducted with critically or terminally ill patients, or elderly persons in nursing homes. Jezewski is concentrating instead on people who have chronic illnesses that put them at risk of needing an advance directive in the future, but currently are relatively stable and functioning normally.

The study will involve 80-100 participants from Western New York who will be recruited through support groups for chronic illness, such as diabetes, multiple sclerosis, cancer and heart disease. Participants will be interviewed personally or take part in focus groups.

Jezewski and Mary Ann Meeker, a doctoral student and research assistant in the School of Nursing, will collect and analyze data on attitudes, opinions and needs of people with chronic illnesses related to advance directives to determine how to help them better understand the process.

Their long-term goal is to design a way to provide that information to others with chronic illnesses and to the general populace.