Thursday, January 23, 2020
Kaiser Health News ran a story about hospice for individuals dying at home and the role of families. Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families explains how Hospice home care works:
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
But the Hospice folks don't do all of the caregiving, with "many family caregivers [responsible for] most of the physical work to [the family, with one daughter noting] that during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter."
Acknowledging that more and more folks want to die at home, the article notes the tasks that fall to family members caring for the person in the final days of life. "Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family... "said one expert. From personal experience, I can confirm that this happens and it is scary. We were lucky-one of our family was a nurse. I'm not sure how we would have gotten through the process without her. But not everyone has their own family medical professional.
Here's the thing. The person needs 24 hours care but that may not be something Hospice will provide because "hands-on help is scarce. According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day."
The article looks at the costs and Medicare coverage rates, Hospice residences and nursing home care. There's something of a Catch-22 happening. "As researchers in the field look to the future, they are calling for more palliative care, not less — and, at the same time, they are advocating for more support for the spouses, family members and friends tasked with caring for the patient." As one expert noted, there's a real need "to expand — in general — our approach to supporting caregivers, [pointing out] that some countries outside the U.S. pay for a wider range and longer duration of home health services."