Why Dementia Patients Are Under-Enrolled In Hospice Programs?

Almost 46% of nursing facility residents and 21% of seniors living in the community suffers from possible dementia. Dementing illnesses are the fifth leading cause of death for Americans aged 65 and older. Dementia is characterized by a chronic, progressive decline in memory and other cognitive functions, for example communication and judgment. People suffering from dementia often have complex medical and behavioral health needs. They rely heavily on family caregivers to provide assistance with self-care and other daily chores. Hospice has been shown to help dementia patients and their families, as the patient can benefit from the better pain control, fewer hospitalizations and greater family satisfaction.

According to Susan Mitchell, MD, senior scientist at the Institute for Aging Research, Hebrew SeniorLife in Boston, “Dementia patients who died with hospice vs. those who died without hospice have better pain control, are less likely to die in a hospital, and their families have greater satisfaction with end-of-life care,”

For physicians, determining with accuracy how long anyone with a terminal disease can expect to live is difficult, and it becomes more challenging when the disease is advanced dementia. As Lin Simon, director of quality at Gilchrist Hospice in Baltimore said “People with dementia get sicker inch by inch; saying, now, she’s ready for hospice’ is much harder.”

According to Medicare, a physician need to certify that a patient entering hospice is likely to die of his within six months. Now, a physician is more likely to do so when the disease has more predictable trajectories, such as cancer or heart failure. That’s the primary reason as to why dementia patients are under-enrolled in hospice programs.

The Journal of General Internal Medicine estimated that less than one in 10 people dying of dementia receives hospice services. A study of Michigan patients with advanced dementia found that just 5.7 percent of nursing home residents and 10.7 percent of those receiving home care died with hospice care. Compare that with national statistics of 40 percent of Americans dying each year in hospice care. Clearly, most dementia patients aren’t entering hospice in the first place.

How to fix the problem of dementia patients being denied hospice care?

Since there’s no accurate way to estimate whether a patient is likely to die within six months or not, Dr. Mitchell’s suggestion is to scrap the whole certification system for dementia patients, and allow them access to palliative care without regard to their expected lifespans. The patients who outlive the six-month period can be recertified for additional 60-day periods.

As Dr. Mitchell said, “If comfort care is the goal, patients should be able to access that whether they live a month or two months or six months.”

Want to know more about dementia or delirium for better care outcomes? Join expert Bonnie Morgan in this session to discuss management of delirium at end of life.

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