Fixing the Flaws in Palliative Care Laws

State laws passed during the last 10 years to promote palliative care have had little impact to date, according to sources interviewed by Hospice News. But that doesn’t mean we should throw the proverbial baby out with the bathwater.

As they battle persistent misconceptions about their work, hospice and palliative providers must take every opportunity to make themselves heard, with every ounce of support they can get from lawmakers and others who are in a position to move policy forward. This is essential to their organizational growth and to getting suffering patients the care they need.

A hospice- and palliative care-themed license plate may not result in Medicaid coverage or improved Medicare reimbursement models. It won’t solve the staffing shortage. But it also doesn’t hurt. They foster visibility and have the potential to prompt the public to ask more questions about what these forms of care actually are.

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State-appointed palliative care advisory councils have fought an “uphill battle” to do their work, according to members of those bodies from several states. Without funding or statutory authority, they fueled their efforts with their passion and determination. They volunteer their time, effort, and expertise to make every bit of difference they could with the resources at their disposal.

The initiatives born from these laws can be successful, but they need to be better designed. This should include a defined methodology for measuring results.

An executive proclamation or legislative resolution recognizing the importance of hospice and palliative care can be a beneficial gesture. Still, the true measure of their commitment is what they are willing to invest.

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Perhaps we can stop asking professionals to do a job without providing them with the necessary tools or resources. This applies not only to awareness programs but also to the care itself.

Fund clinical training programs to bolster the field’s workforce. Take tangible action on health equity. Build better systems for palliative care reimbursement at the state and federal levels and engage with private payers — reform hospice reimbursement to reflect the new realities that providers and patients face.

This includes the rising expenses, the effects of the pandemic, the magnitude of the aging population, and the growing prevalence of diagnoses like dementia that the Medicare Hospice Benefit was not designed to support.

These actions would require a years-long process, and the nation isn’t getting any younger. We have to start now. The population is aging now. Health care costs are weighing down our economy now. People are growing older and sicker now, and understaffed providers are caring for them on a shoestring. This is not sustainable.

Talk must give way to action. But in the meantime — keep talking. Keep educating. Be the voice in the wilderness, clamoring for every heart and every mind. The conversation isn’t enough, but it has value nevertheless.

“End-of-life care is the only topic in health care — maybe in all of life — that affects every single one of us and everyone we care about with 100% certainty,” Dr. Lachlan Forrow, co-founder of the Massachusetts Coalition for Serious Illness Care, told Hospice News. “When it goes badly, it’s not just that the patient isn’t cared for and suffers, but family members are scarred and angry forever. When it goes well, then people can have some of the absolutely most precious times they’ve ever had in their life together.”

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