Hospices provide palliative and supportive services to people who are nearing the end of life. More people in the U.S. are using hospice than ever before—recent data indicate that half of those with Medicare insurance who died in 2017 used hospice. Hospices are also serving a more diverse population and reaching people with a range of diseases, including heart failure. While this is encouraging news, patients with heart failure face unique challenges in hospice. Because of difficulties in making accurate prognosis estimates, many patients with heart failure are referred to hospice too early or late in the disease process. Also, heart failure causes sudden changes in physical functioning and symptoms that can be difficult to manage at home. These difficulties can make it more likely that patients with heart failure end up leaving hospice prior to death, an event that is also known as “live discharge.”
A study that we recently published in JACC: Heart Failure found that 30% of patients with heart failure experience a live discharge from hospice. We found that this occurs much more frequently in heart failure compared to other diseases like cancer and stroke. Live discharge can happen for several reasons, including unanticipated medical events that lead to hospitalization, decisions by patients and their families to pursue disease-directed treatments that are not allowed under hospice regulations (“elective revocation”), leaving the hospice’s service area, or having an extended prognosis beyond the six-month eligibility window.
Which heart failure patients are more likely to leave hospice before death–“live discharge”?
Data that we gathered from a large population of patients in New York City allowed us to explore factors that were linked with live discharge from hospice:
- Younger patients between the ages of 18 and 74 are more likely to leave hospice because of hospitalizations or elective revocations.
- Patients from underrepresented racial/ethnic backgrounds, including black and Hispanic patients, are more than twice as likely to leave hospice because of hospitalization.
- Higher functioning patients who are more mobile and less reliant on assistance, measured by scores of 50-70% on the Palliative Performance Scale, are more likely to experience live discharge.
What do hospice nurses and other team members think about the experiences of patients with heart failure?
We talked to interdisciplinary team members at a large hospice agency, including nurses and physicians, to understand more about what patients with heart failure experience when they enroll in hospice. Some of the key issues they discussed were:
- The unique experience of patients with heart failure—rapid changes in symptoms are common and many patients have complex medication regimens and medical devices like defibrillators that require special care.
- The limited understanding that many patients have of hospice and their disease—many patients lack a clear sense of what hospice is and its philosophy, or are less prepared and ready to face the end of life.
- The importance of patients’ social and family context—factors such as education, religion, language, social support, and family dynamics were all cited as playing an important role in the experience of patients with heart failure in hospice.
What does this all mean?
We need to pay closer attention to the experiences of patients with heart failure in hospice—to identify ways to help patients stay comfortable at home and prevent avoidable hospitalizations. Providing cardiac-specific training to hospice teams and caregivers may be instrumental in keeping patients with heart failure continuously enrolled in hospice. Also, efforts to raise awareness about hospice goals of care may also help with reducing barriers to palliative care.
By: David Russell, PhD
Dr. Russell is a Research Scientist in the Center for Home Care Policy & Research at the Visiting Nurse Service of New York and an Assistant Professor of Sociology at Appalachian State University.
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