Majority of hospice workers don't have end-of-life wishes themselves
There are approximately 6,100 hospices nationwide that provide care for about 1.6 million patients annually. On a daily basis, health care providers, especially those dealing with terminally ill patients, such as hospice workers, witness how advance directives - an important document specifying choices for future medical treatment and options when an individual is unable to communicate their needs - help ensure the wishes of patients. These providers witness the negative consequences when patients fail to document the care they desire at their end of life.
As a result, one might assume that the majority of individuals who work within a hospice would have their own advance directive. Researchers from Florida Atlantic University's Charles E. Schmidt College of Medicine and Christine E. Lynn College of Nursing, decided test this assumption with the first study to explore demographics, knowledge, barriers to completion and completion rates among hospice employees and volunteers.
Surprisingly, the researchers found that the majority of hospice health care providers had not completed an advance directive. Procrastination, fear of the subject and costs were reported as the most common barriers. The results are published in the prestigious American Journal of Medicine.
"Because health care providers can only practice or teach what they know, we found that lack of knowledge seemed paramount as a barrier to completing an advance directive," said George R. Luck, M.D., an associate professor of integrated medical science in FAU's Charles E. Schmidt College of Medicine. "Some hospice health care providers appeared to lack knowledge of some fundamental concepts regarding access to the document."
The researchers discovered that respondents did not know where to locate the document or believed that they had to use an attorney, which would be costly. They found that those who reported being "very knowledgeable" were 3.9 times more likely to have an advance directive.
"An advance directive can be easily obtained at the hospice or online for no cost and without an attorney," said Luck.
Among 890 respondents, less than half (44 percent) had completed an advance directive. Curiously, these results are very similar to those for other health care providers treating patients with terminal diseases, specifically oncologists. Ethnicity, age, relationship status and perceived knowledge were all significant factors influencing the completion rates. Ironically, years of experience or working directly with patients had no significant effect. Completion rates were virtually identical among men (45.9 percent) and women (45.8 percent). Those older than 65 years had a significantly higher rate of completing an advance directive (78.5 percent) than those who were under the age of 40 (24.9 percent). White/Caucasian employees had statistically significant higher completion rates (58.8 percent) than Hispanics (29.4 percent), African Americans (22.1 percent) or Asian Americans (14.3 percent). Among job roles, certified nursing assistants had the lowest completion rate (20.5 percent).
"Advance directives are associated with fewer hospital deaths, fewer intensive care admissions and fewer life-prolonging measures as well as better quality of life for patients at the end of life," said Terry Eggenberger, Ph.D., associate professor in FAU's Christine E. Lynn College of Nursing. "Nurses and certified nursing assistants care for terminally ill patients on a daily basis and we want to empower them to take measures so that they too receive care that is in line with their end-of-life preferences."
One key finding from this study was the positive impact of the survey upon the respondents. Specifically, among those who had not completed an advance directive, 43 percent said that they will now do so, and 45 percent said that they would talk to patients, family and friends about their wishes.
"Hospice organizations are dedicated to providing compassionate care to patients coping with terminal illness," said Charles H. Hennekens, M.D., Dr.P.H., Sir Richard Doll Professor and senior academic advisor in FAU's Charles E. Schmidt College of Medicine. "Hospice health care providers are a unique and perhaps sentinel flock to increase completion rates in the community. We believe that completion of the survey may help to increase the proportion of hospice health care providers with advance directives."