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In hospice, only wealth means home, health

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MARCH 07, 2023

Every year, approximately 1.5 million Medicare recipients access hospice benefits at the end of their lives. The philosophy of hospice focuses on quality of life, using a team approach to support the dying person and their loved ones.

“We will do all we can, not only to help you die peacefully, but also to live until you die,” said Dame Cicely Saunders, founder of the hospice movement.

Home hospice is an appealing option for the 70% of Americans who say they want to die at home. At first glance, Medicare appears to provide everything they need: doctors, nurses, social workers, chaplains, a hospital bed and all medications. End-of-life care and the option to pass away at home, then, should theoretically be financially accessible to everyone.

My family faced this decision when my father-in-law, Tom, had a stroke this past autumn. His medical team in Washington State recommended comfort care and the option to go home with hospice. We all agreed that Tom would want to spend his last days in his own apartment, drinking bourbon and smoking the occasional cigarette in the company of his wife and dog. But despite our best efforts and my expertise as a medical social worker, we were unable to fulfill his last wish. Why?

The crucial piece missing from Medicare is funding for the caregiving needs of hospice patients. Hospice recipients require 24/7 care, which family members are expected to provide, mostly unpaid. According to the Bureau of Labor Statistics, there are 40.4 million unpaid family caregivers in the United States. Necessary, routine caregiving tasks — bathing, toileting, feeding — take their toll on caregivers. Around 53% of those surveyed report significant depression and anxiety. Caregivers are also at greater risk of chronic medical conditions, including hypertension, weakened immune systems and heart disease. The emotional, mental and physical toll of caregiving adversely impacts not only their health, but inevitably reduces the level of care they can provide their loved ones in their final days. 

Our family, as with many others, was not able to provide full-time care at home. Tom’s wife is  elderly and frail, with chronic pain issues that limit her mobility. My husband had just started a new job and was not eligible for family medical leave benefits because he hadn’t yet been there for a year. My sister-in-law has chronic health issues. And I am a full-time student and caregiver to my own aging parents. Like many Americans, we lacked the financial means to bring in outside help.

Currently, Medicare offers very little support for caregiving expenses. The main benefit provided is five days of respite at a care facility, usable on an “occasional basis.” Not only is this logistically challenging; it flies in the face of the philosophy of keeping people out of institutions. Families often receive information about hiring help, but for many, these services are prohibitively expensive: the median hourly cost for a home health aide in the U.S. is $25/hour, and the rate is higher for evenings, weekends and holidays. 

Financially disadvantaged patients are therefore less likely to access hospice at home; when they do, they’re more likely to transfer to a facility at end of life due to lack of caregiver support. Instead of peacefully living out their final days in the comfort of their homes with their loved ones, they’re made to die in an unfamiliar place, tended to by people who — though perhaps professional and compassionate — are strangers. 

I believe the simplest and most beneficial solution to this disparity in outcomes involves expanding Medicare to cover caregiving costs. A program called Long Term Support Services (LTSS) exists through Medicaid, and was created for the explicit purpose of keeping elderly and disabled people in their homes. Every state has Medicaid-funded programs that pay for caregiving services. However, only 20% of Medicare beneficiaries qualify for Medicaid, making expanded access to LTSS crucial to increasing access to home hospice services. 

We applied for Medicaid for Tom, hoping to access LTSS to pay for his care. After days spent toiling over seemingly endless documentation and after weeks of waiting for a response, we were told that he was over income. (In case you’re wondering, Medicaid’s annual income limit for two people in Washington State is the princely sum of $24,353). Like many Americans over the age of 65, Tom already had Medicare coverage. If Medicare offered a home health benefit, he would have been home as soon as we found a caregiver.

Currently, per capita Medicare expenditures in the last year of life total $80,000, spent mostly on institutional care. It’s paradoxical that we fund institutional care but offer no financial support to families willing to care for their loved ones at home. By making home support services part of the hospice benefit, Medicare can close a huge gap in services.

Tom never left the hospital. He passed away one October morning with his favorite nurse at his bedside. Until the very end, he kept asking to go home.

Rebecca Grey, LCSW, has been a medical social worker for over 15 years and is currently pursuing a master’s in public health at UC Berkeley. Contact the opinion desk at [email protected] or follow us on Twitter.

MARCH 07, 2023