If you’re reading this, chances are high that you’re interested in hospice care. While not an often-discussed concept, it is a very important and highly beneficial option for terminal diagnoses. Consumer Reports and The Washington Post recently published a great story outlining the benefits of choosing hospice care sooner than later. According to a recent study , most people that choose hospice care wait too long to do so and at the expense of their symptoms and quality of life.
The study’s author, Dr. Thomas Michael Gill, goes on to say that if hospice is delayed too long, its benefit may be reduced.
People who put off hospice care might spend months in and out of hospitals, with their families struggling to attend to them. “At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, a professor of medicine, epidemiology and investigative medicine, and the Humana Foundation professor of geriatric medicine at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”
The study followed over 750 people over age 70. More than 40% of them entered hospice toward the end of their lives but the average time they spent there was less than two weeks. Dr. Diane Meier, the director of the Center to Advance Palliative Care explains that these people could have avoided many hospital visits and suffering of symptoms by choosing hospice care earlier.
Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.
Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”
Common reasons people may delay hospice care are often rooted in misconception. For instance, hospice is not a death sentence. Patients may leave hospice care at any time and it does not have a time limit—only a standard time of six months which can be extended.
“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”
And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.
So, when is the right time for hospice? Meier lists two main criteria: difficulty with self-care through daily life as well as debilitating symptoms such as pain, shortness of breath and depression. Hospice helps with both of these factors. According to Dr. Gill, the most important factor of all, however, is honest communication.
“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.”