Waiting too long to use hospice care can make suffering at end-of-life worse. When is it the right time? Anyone with a terminal illness who is faced with choosing quality over quantity of their life should be having honest and ongoing discussions about their goals with their physicians and loved ones.
Hospice itself is not a death sentence as many people view it to be, but rather an opportunity to allow the patient to significantly reduce struggles and complications that can arise as the illness progresses and results in multiple emergency room visits and hospitalizations. It’s been well documented that those who have entered hospice early in their illness have stabilized and were able to “graduate”, meaning their condition maintains for a time because their quality of life is being taken care of. Since the illness is terminal, once it takes a more serious turn a patient may return for hospice again.
So when do you know it’s time to call hospice for you or a loved one? Diane Meier, director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, says that when someone is having increasing difficulty with self-care, struggling with tasks such as walking, getting out of a chair, bathing, dressing and using the toilet are signs that it’s time to have a discussion. Hospice care is designed to help with all of those activities. The second is the presence of symptoms such as severe pain, shortness of breath, hopelessness, depression and profound fatigue. In hospice, “most of them can be improved or eliminated,” Meier says.
According to a recent study published in the Journal of the American Geriatrics Society, many people wait too long to enter hospice care and it becomes an increasingly stressful time for the patient and the families. For nearly 16 years, Thomas Michael Gill, a professor of medicine, epidemiology and investigative medicine, and the Humana Foundation professor of geriatric medicine at Yale University and a team of researchers followed 754 people, all age 70 and older when the study began. More than 40 percent of the 562 people who died during the study entered hospice care during the last year of their lives, but the median time spent in hospice was less than two weeks.
Study researchers wrote, “Hospice services appear to be suitably targeted to older persons with the greatest needs at the end of life, although the short duration of hospice suggests that additional strategies are needed to better address the high burden of distressing symptoms and disability at the end of life.” The report shows that 61.5 percent of patients received care for 29 days or less, which may prevent patients and family caregivers from taking full advantage of the full range of services that the hospice team can offer, while a study by The National Hospice and Palliative Care Organization (NHPO) indicates that 34.5 percent of patients died or were discharged within seven days of admission.
NHPO stresses that hospice care is best suited for the final months of life, not just the final days. Hospice is more than pain relief and symptom control. Hospice also provides emotional and spiritual support, training for family caregivers, and bereavement services to the family for a year following the death of a loved one under hospice care.
People who put off hospice might spend months in and out of hospitals, with their families struggling to attend to them. “At some point, patients, their families, and their doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.” Many of the symptoms these patients experience including pain, nausea, depression and shortness of breath decrease significantly once they entered hospice.
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