Guest commentary by Franziska Rokoske
It seems so innocuous, the request to keep people and their families in our thoughts and prayers because they are “on hospice.” We’ve all heard it, from well-meaning (and sometimes solemn-faced) pastors, relatives and friends. “She’s on hospice” is delivered with the best intentions.
Unfortunately, upon hearing these words, many listeners interpret that the situation is dire and the person’s death is imminent. We believe we should anticipate the person’s imminent death and that our attendance to the person and their family is immediately needed.
The phrase has become an unfortunate euphemism for “she’s about to die,” or “you better hurry and go see her,” or “there won’t be time.” Sadly, that euphemism has unintended consequences; it contributes to mass public misperception about what hospice is and what hospice care means for patients and families who receive it. It wrongly equates hospice care with death when instead, hospice promotes quality of life for people with life limiting illness. In most peoples’ minds, the phrase “she’s on hospice” makes the unfortunate and incorrect connection between hospice and imminent death. Though the word “death” doesn’t get included in the phrase, the gravity of the unspoken hangs in the air.
How do we change this misconception? First, let’s be clear about what receiving hospice care means. Hospice care is designed to support people with serious and life-limiting illness and their caregivers with medical and psychosocial services, primarily in the home. These supports can include healthcare visits, volunteer support, medical social workers, medical equipment, education and training, spiritual and psychological care, respite care to reduce caregiver stress and burnout and bereavement care for survivors. All of these services have been shown to result in better quality of life for patients and caregivers and to lessen caregiver stress. Who wouldn’t want that kind of support?
Sadly, many people are not aware of the services hospice provides, and that they can receive hospice for many months. Too many people choose to begin hospice care quite late in the course of their illness, which is probably why so many people equate starting hospice care with imminent death. So here’s a few more facts about hospice, in the hopes that this information is helpful and encourages readers to learn more:
- Hospice care is provided primarily in the residence of the person who is seriously ill.
- Hospice care can also be provided in nursing homes, assisted living facilities, inpatient settings and other places.
- Hospice provides a variety of levels of care to meet the needs of the patient and family.
- Hospice care can be provided for many months. In fact, there is evidence that longer stays in hospice result in better outcomes for patients and their caregivers.
When we unpack the phrase and understand the facts about hospice care, it becomes clear that we should stop using the phrase “she’s on hospice” as a complete statement meant to convey the gravity of a person’s health condition.
Instead, we should be clear and specific about what we mean. Granted, it’s difficult to do this in our death-fearing culture. Here are a few recommendations:
- If a person truly is imminently dying (and hopefully is benefitting from hospice care), we should say that. “Mr. Smith is nearing the end of his life. His family says the doctors thinks he has a few days left to live.”
- If a person has elected to begin hospice care because hospice can alleviate their suffering, and contribute to maintaining their dignity during their final months of life, then we should say that. “Mr. Smith and his family have started receiving hospice care to help them achieve Mr. Smith’s goal of living as well as possible, despite being very seriously ill. They would appreciate your cards and phone calls.”
As more of us become comfortable moving away from euphemisms to informative statements, we’ll be able to more clearly communicate the status of people and their families as they cope with advanced illness. And in doing that, we can achieve a greater level of understanding and acceptance of hospice care, recognizing that its primary function is to enhance life, particularly when life expectancy is dwindling and it matters most.
Franziska Rokoske is the director of RTI International’s End-of-Life, Palliative, and Hospice Care Research Program in Research Triangle Park, North Carolina. A clinician by background and training, she has dedicated her research career to improving healthcare for people with serious illness, particularly as they approach the end of life. She is passionate about improving the public’s understanding of palliative and hospice care, and improving how end-of-life care is discussed in the U.S.