Leonard Berry, Texas A&M University
Stephen Connor, Worldwide Hospice Palliative Care Alliance
Brad Stuart, Advanced Care Innovation Strategies
“Jerome” has stage 4 cancer and multiple comorbidities. During his fourth hospital admission within 6 months, he said to his wife “Marilyn,” “I don’t want to be in the hospital anymore. They can’t fix me. Let’s go home.” Jerome was discharged and enrolled in home hospice care. On February 6, 2015, Jerome’s hospice nurse made a routine home visit, and one of us (LLB) came along. Jerome was watching television in his favorite living room chair, his dog on his lap and a laptop computer within easy reach. He told us that he eats meals at the kitchen table, uses an electric scooter to visit a neighborhood friend, and plays video games with a hospice volunteer who comes to the house. Marilyn says, “When we finally got Jerome into hospice, they stopped trying to fix him, and he started to have some quality of life. Hospice is a great alternative. Jerome can be home and still get what he needs.”
Patients like Jerome in the final stages of incurable disease need compassionate, humane, relationship-building health care at a time when they are least able to advocate for themselves. That kind of service is the mandate of hospice. Far too often, though, some U.S. hospices underperform, failing to provide an appropriate quality or range of services.1 Improving the performance of those hospices is a matter of moral urgency, medical effectiveness, and financial consequence — all unified by the goal of fulfilling hospice’s foundational duty to support quality of living until the last days of life.
“Practical Ideas for Improving the Quality of Hospice Care,” Journal of Palliative Medicine, forthcoming.