Proposed federal legislation could advance the development of an evidence-based definition of “high-quality” bereavement care.
The language appears in the 2023 appropriations bill for the departments of Labor, Health & Human Services, Education, and related agencies. Considered “report language,” the bereavement portion of the bill is a recommendation to federal agencies to pursue its stated objectives. However, if enacted, the bill would not actually require them to take action.
The legislation “encourages” the U.S. Agency for Health Research & Quality to develop consensus standards on what constitutes high-quality grief and bereavement care, in partnership with the National Quality Forum and hospice providers, among others.
“If it were included in the final bill it would give the administration instructions on what they should be thinking about,” Mollie Gurian, vice president of home-based and HCBS policy at LeadingAge, told Hospice News. “Because hospice is Medicare funded, it’s not usually something that’s talked about in the appropriations world, but this is thinking about what the government could be doing to make hospice more robust and trying to involve agencies that don’t always engage in hospice.”
The U.S. Centers for Medicare & Medicaid Services (CMS) requires hospices to offer bereavement care for a minimum of 13 months following a patient’s death, but many providers extend those services to their entire communities regardless of whether the deceased was a patient.
However, from a statutory standpoint bereavement care is the least clearly defined aspect of hospice care. Federal rules do not contain specific standards on how that care should be provided or what it should include. CMS to date also has not developed quality measures to evaluate their effectiveness.
This has contributed to widespread variation and inconsistency in the ways hospices structure their bereavement programs, as well as the specific types of care that families receive.
In addition, these services are not reimbursed. Hospices receive a per diem payment for each enrolled patient through admission to the end of life, but that does not extend to the minimum 13-month bereavement period.
“Some regulatory flexibility is good, because you want to be able to adjust the care plan to the appropriate individual. And some people are going to refuse grief and bereavement services, and no hospice should be penalized for that,” Gurian said. “But it also should be much more than just being sent a card in the mail. I do think that there’s more that can be done there. We wouldn’t want anybody to go in and say a hospice isn’t doing a good job when ‘good job’ is not defined.”
Another component of the bill would encourage the U.S. Department of Health and Human Services to collaborate on measuring the scope of need for high-quality, evidence-based bereavement and grief services and associated best practices.
This renewed attention on bereavement is particularly important in light of the continuing COVID-19 pandemic, which to date has claimed well over 1 million lives in the United States alone.
If these provisions make it into the final bill — and if the administration decides to implement these recommendations — the resulting research would constitute a “holistic evaluation” of the impacted populations. This would include health care workers and communities of color.
The research would also be designed to identify the prevalence of mental health conditions that could have resulted from the pandemic, such as post-traumatic stress disorder, as well as the services that affected individuals need, and other related data.
As report language, the bill would not allocate any funds for these efforts, but it could lay the groundwork for future action backed by federal dollars.
“There aren’t dollars attached to it, but I think that if we were to get some of this data on this, there are things down the line that we could hopefully get funded,” Gurian told Hospice News. “It’s building the case.”
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