If you had a terminal illness, how long would you wait before using hospice care? A new study finds that many terminally ill patients wait far too long to make this decision.
Researchers from Yale studied the patterns of hospice care visits around the country, and published their findings in the Journal of the American Geriatrics Society. The study’s primary author, Dr. Thomas Gill, says that terminally ill patients spend very little time under hospice care, on average. According to the study, even when people knew that they likely only had a few months left to live, they still waited to use hospice until the final weeks before death. In many cases they avoided it entirely.
To conduct the study, Dr. Gill and his fellow researchers followed 560 elderly people, all of whom were at least 70 years old. The researchers sent their subjects health assessment surveys every 18 months for 16 years. They also spoke with their subjects every month on the phone.
After 16 years of studying patterns in their subjects’ overall health, the researchers found that, on average, most of their subjects discovered new or worsening symptoms about six months before their deaths. These symptoms usually made it more difficult to do basic tasks, such as shopping, cooking, housework, walking, driving or taking medications by themselves.
Yet despite these worsening symptoms, the rate of hospice care visits for the study subjects only increased by 66 percent. In other words, even when patients experienced worsening symptoms that could be indicators of approaching death, many chose to avoid hospice care until their symptoms became completely debilitating.
The study also found that in the final year of life, only 43 percent of the participants chose to use hospice care. What’s more, these people were usually in the process of actively dying. The average stay in hospice for patients in their last year of life was just 13 days.
The people who were most likely to seek out hospice care at the end of life were those who had cancer or dementia. Researchers hypothesize that this is because patients with these conditions are often better educated about their diseases and realize that they their illness will soon be fatal.
By contrast, people who experienced symptoms such as frailty were the least likely to seek out hospice care. This finding surprised researchers, since frailty can often be a sign of impending death. Researchers found that subjects who struggled with frailty were more likely to die within six months than those who didn’t report this symptom. Yet despite the correlation between frailty and death, many people didn’t consider this symptom serious enough to warrant hospice care.
Communication Is Key
Based on their research, the study authors concluded that lack of communication is the main culprit behind delayed use of hospice. Nearly all patients over the age of 70 have hospice care included in their medical coverage, so cost isn’t usually a factor. Additionally, patients usually receive hospice care from the comfort of their homes, so travel and the stress of moving probably don’t play a role.
Instead, researchers say that many people and their families still consider hospice care a form of “giving up.” For many, signing up for hospice means losing the will to live. However, this isn’t at all true, the authors explain. Although hospice care comes into play only when people are near the end of their lives, it also provides much needed comfort that could vastly improve the quality of a person’s final months of life.
Unless doctors and other medical professionals educate patients about their hospice care options, delayed hospice care will continue to be the norm, the researchers claim. But by removing the stigma from hospice care and encouraging patients to enter into hospice programs earlier, quality of life at the end of life could dramatically improve.