Hospice care improves patients’ quality of life, if they can get it.
“I used to ride horses for the pope.”
While I have heard lots of interesting things from patients, this was a first. Antonio, a slightly built, older gentleman with a twinkle in his eye, had worked in the Vatican many years before, caring for the papal horses and riding them in official processions and celebrations. In broken English, he regaled me with stories of his adventures back in Italy. If you had walked by his sun-filled, cheerful room as we talked, it is unlikely you would have realized that he was dying.
Antonio was a hospice patient, one of the many whom I encountered during an immersive experience that included shadowing local hospice physicians and conducting research in the field. Hospice is a holistic approach to medical care that is patient focused and family centered. A subset of palliative medicine, it serves patients with terminal illnesses and places emphasis on maintaining their dignity and quality of life—even in the midst of advanced and complex diseases. Some of the patients I met received care at home, others in the comfortable local hospice center. None were in the high-tech, chaotic hospital environment in which many of us expect to find dying patients. Yet hospice patients like Antonio had their symptoms carefully managed, while enjoying the relationships and things important to them.
Too many Americans are referred to hospice only in the final days of their lives, if ever, despite growing evidence
that hospice improves quality of care for both patients and their families. According to Brown School of Public Health research, more than half of terminal patients in the US do not receive hospice care, and nearly a third of those who do received such care for only three days.
Trends in the use of hospice by minorities are even more concerning. Professor of Health Services, Policy and Practice and Medicine Joan Teno, MD, MS, and I have found that a smaller percentage of Hispanics on Medicare used hospice than Caucasians on Medicare over the past decade. Nearly 70 percent of Hispanics on Medicare die without hospice services—even though such care is in line with many such patients’ cultural and personal values. Elderly Hispanic patients not on Medicare are likely to fare even worse in their end-of-life care. Yet Hispanics are the fastest-growing ethnic group in the US, expected to constitute 20 percent of citizens over the age of 65 by 2050.
When the provider and patient speak different languages, more challenges arise. The term “hospice” is itself an obstacle: it translates to “hospicio” in Spanish, which means “orphanage” or “poorhouse”—both places a patient would understandably want to avoid. More than 60 percent of elderly Hispanics in the US do not speak English well, furthering the chance for miscommunication. Differences in culture can lead to misperception. Older Hispanic patients, particularly those with strong traditional cultural influences, are likely to defer to a physician’s plan of care without question. Finally, negative history with American health care, whether personal or cultural, may be a barrier to a patient’s use of hospice—particularly if they mistakenly believe that hospice providers are hastening death.
Ensuring that all patients have access to quality hospice and palliative care will be one of the many challenges for future physicians like me. My research focuses on improving use of hospice by Hispanics, but there’s much more fodder for study: patients’ end-of-life preferences, cultural and geographic influences, barriers to care. Furthermore, medical practitioners need to receive and share accurate information about palliative and hospice care, and more frequently refer patients who would benefit from such services. Doing so can improve patients’ quality of life; avoid interventions that are unwanted, futile, or physically and fiscally costly; and, sometimes, even extend patients’ lives.
The work of hospice and palliative care reminds me of a quote by Ambroise Paré, a 16th-century French surgeon: “The task of medicine is to cure sometimes, to relieve often, and to comfort always.” For the dying patient, listening to stories in a sunlit room may be the best comfort we can provide.
Jason Bowman, whose study, with Teno, on use of hospice care among white and Hispanic Medicare patients was published last year in the Journal of Pain and Symptom Management, is interested in working in the fields of hospice and palliative care.