Majority of Hospice Workers Don’t Have End-of-life Wishes Themselves
young hospice worker and elderly hospice patient play chess

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.”

David Newman, Ph.D., associate professor, FAU’s Christine E. Lynn College of Nursing, also was a co-author of the study.

About the Charles E. Schmidt College of Medicine:

FAU’s Charles E. Schmidt College of Medicine is one of approximately 150 accredited medical schools in the U.S. The college was launched in 2010, when the Florida Board of Governors made a landmark decision authorizing FAU to award the M.D. degree. After receiving approval from the Florida legislature and the governor, it became the 134th allopathic medical school in North America. With more than 70 full and part-time faculty and more than 1,300 affiliate faculty, the college matriculates 64 medical students each year and has been nationally recognized for its innovative curriculum. To further FAU’s commitment to increase much needed medical residency positions in Palm Beach County and to ensure that the region will continue to have an adequate and well-trained physician workforce, the FAU Charles E. Schmidt College of Medicine Consortium for Graduate Medical Education (GME) was formed in fall 2011 with five leading hospitals in Palm Beach County. In June 2014, FAU’s College of Medicine welcomed its inaugural class of 36 residents in its first University-sponsored residency in internal medicine and graduated its first class of internal medicine residents in 2017.


About Florida Atlantic University:

Florida Atlantic University, established in 1961, officially opened its doors in 1964 as the fifth public university in Florida. Today, the University, with an annual economic impact of $6.3 billion, serves more than 30,000 undergraduate and graduate students at sites throughout its six-county service region in southeast Florida. FAU’s world-class teaching and research faculty serves students through 10 colleges: the Dorothy F. Schmidt College of Arts and Letters, the College of Business, the College for Design and Social Inquiry, the College of Education, the College of Engineering and Computer Science, the Graduate College, the Harriet L. Wilkes Honors College, the Charles E. Schmidt College of Medicine, the Christine E. Lynn College of Nursing and the Charles E. Schmidt College of Science. FAU is ranked as a High Research Activity institution by the Carnegie Foundation for the Advancement of Teaching. The University is placing special focus on the rapid development of critical areas that form the basis of its strategic plan: Healthy aging, biotech, coastal and marine issues, neuroscience, regenerative medicine, informatics, lifespan and the environment. These areas provide opportunities for faculty and students to build upon FAU’s existing strengths in research and scholarship. For more information, visit

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

Related Articles



On feeling guilty for not being able to do the impossible: On one hand it seems like we did all we could but on the other hand, it feels like giving...

Popular categories

After Caregiving
Finding Meaning
Finding Support

Don't see what you're looking for? Search the library

Share your thoughts

1 Comment

  1. We (my husband) did. When the time came, (12-23-17) that I had to abide by his wishes, It was the most excruciating gut/heart wrenching rule that I’ve ever had to follow. ✝️


Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.