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Tuesday, August 11, 2020  

Dying Without HospicePublished 2/23/2004

There’s been much talk lately around our office about why people are still dying without hospice. The Medicare hospice benefit has been available for more than 20 years now, and most insurance companies now provide a hospice benefit. The cost of care is obviously not an issue.

Studies show that hospice provides the type of end-of-life care that Americans want. In fact, an overwhelming majority of adults say they would be interested in the comprehensive program of care at home that hospice provides. The National Hospice and Palliative Care Organization (NHPCO) reports that nine out of 10 adults would prefer to be cared for at home if diagnosed with a terminal illness.

Americans want hospice care and cost is not an issue, so why are so many Americans dying without it? NHPCO estimates that only about half of the patients who could benefit from hospice actually receive it. And often, those who do receive hospice care don’t receive the full benefit.

The Medicare hospice benefit was originally designed to provide care for the final six months of life. Yet, the average length of service for most patients falls dramatically short of six months. According to NHPCO, the average length of service in 1992 was 64 days. By 2002, that average had fallen to 51 days—less than two months. In 2001, 34 percent of patients served by hospice died in seven days or less. That same year, only six percent of hospice patients received the full benefit—180 days or more. Why?

One answer is that people are still afraid to talk about death. Not just the general public—many medical professionals are still hesitant to broach the subject. Last week, a doctor actually shared with one of my co-workers that he would rather send the patient to the hospital than talk to them about hospice. His standard procedure was to "pass the buck" to the hospital’s discharge planning department.

Unfortunately, as long as health care professionals pass the buck, their patients will continue die in pain and often with unfinished business. Those dying without hospice miss out on the symptom control, pain management, and emotional and spiritual support that hospice provides. Those patients who are referred late in their disease process may not fair much better. Articles published in the Archives of Family Medicine and the Journal of Pain and Symptom Management express concern that later hospice referrals do not allow sufficient time for hospices to accomplish their goals of life closure, safe and comfortable dying, and effective grieving.

Isn’t it the hospital discharge planner’s job to make these kinds of referrals? Yes and no.

Passing the buck to the hospital discharge planner simply won’t work. The American Journal of Hospice and Palliative Care reports that having a hospital referral source is directly associated with shorter hospice stays. It’s not that hospital discharge planners aren’t doing their jobs. Typically, discharge planners are working with patients who went to the hospital for a critical situation. By the time they are ready to go home, their disease has progressed to the point that they have a prognosis of only a few weeks or days. Discharge planners are doing everything they can for a terminally ill patient by making a hospice referral, but the patient would have probably benefited more if a health care provider had broached the subject of hospice earlier in their disease progression.

Death and dying is no longer something to be whispered about behind closed doors, avoided, or passed on for others to deal with. Plenty of literature is available to help professionals learn how to discuss terminal illness and hospice care with patients and their families. The National Hospice and Palliative Care Organization, the Last Acts Coalition, and the American Hospice Foundation all offer tips on their web sites. When approached professionally and in a gentle, caring way, most patients and families will discuss hospice care. But, it’s up to you to start the conversation.

Why wait until it’s too late? Your patients and their families are missing out on the care they want and deserve. They are counting on you to start the conversation today.v

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