Some health insurance benefits are fit for their purpose. Others are not.
Bartholomew O’Dwyer gives his wife, Babette, a dose of her prescription medicine at their home in Cumberland. Bartholomew provides 24/7 care to his spouse, who can no longer walk or feed herself; the home hospice visits that Bernadette had been receiving since she had a stroke in 2018 were cut off last month. Brianna Soukup/Staff Photographer
And it’s a failure of our system of health care that, despite a growing aging population nationwide – nowhere more so than here in Maine – wide and deep cracks dominate our approach to hospice and late-life care in particular, with distressing results for very vulnerable people in our communities.
The experience of Babette and Bartholomew O’Dwyer, vividly reported Sunday (“A Cumberland couple’s hospice care has ended. Their need for it has not,” Aug. 13), laid bare both the benefits of having hospice care covered and the hardship of having that coverage cut off, with few to no alternative supports available.
Five years ago, Babette O’Dwyer had a stroke and never recovered. Shortly after that, she was approved for hospice care, meaning that Bartholomew, her primary and only family caregiver, was able to take an occasional break when hospice workers made home visits several times a week.
The O’Dwyers’ experience shows just how easy it is not to line up with arbitrary eligibility requirements for critical coverage. Under Medicare, hospice care is held to a strict “end-of-life” standard, provided only if a doctor determines that the patient’s life expectancy is no more than six months. When, as in Babette’s case, a patient lives much longer than that, the criteria for eligibility, as the report put it, “are applied by clinicians based on their professional judgment.”
Kandyce Powell, executive director of the Maine Hospice Council, told the Press Herald that the O’Dwyers’ story was all too familiar. Other experts acknowledged that hospice care under Medicare is narrowly defined and hospice providers who are providing through Medicare are subject to keen reimbursement-related scrutiny, which can lead to conservative approaches to determining eligibility.
According to a report by the National Hospice and Palliative Care Organization released late last year, 1.72 million eligible Medicare beneficiaries availed of hospice care in 2020, a 6.8% increase on 2019. A report by the Home Care & Hospice Alliance of Maine found that hospice use in our state increased from 21% of Medicare patients who died in 2005 to nearly 50% in 2022.
Uptake of hospice is increasing everywhere; it stands to reason that this minority of individual cases that eventually find themselves outside the tidy box of eligibility – while still in need of that care – are, too. That includes patients who never avail themselves of the benefit because the bar for eligibility feels too stark.
For many who qualify for and receive hospice care under Medicare, it generally serves its purpose. Since its inception, it has allowed millions of Americans to live out their final months with the appropriate level of holistic support, often in the comfort of their own homes.
For families like the O’Dwyers, losing what is often referred to as “routine home care” means losing this same expectation of comfort and consistency and being forced into other options. The problem is, these options tend to be both thin on the ground or prohibitively expensive. The O’Dwyers’ health care provider, on confirming termination of hospice services, sent along a list of organizations that might be able to step in. The majority were not covered by Medicare and would cost thousands of dollars monthly.
Volunteer agencies, where they exist, often struggle to meet demand. Even if volunteer- or charity-based solutions could be relied on as alternatives to this application of federal health insurance, that wouldn’t be enough. Reform of eligibility must better reflect the reality of life and death, providing for exceptions to be more easily made in exceptional cases.
What the Maine Hospice Council’s Powell referred to as “one of the tragedies of our health care system” is crying out to be solved.
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