The Family Caregiver’s Value: The Total System Expertise

We interact with every piece which means we best understand the entire health care ecosystem.

On Thursday, I joined my first Clubhouse room for an interview with other health care professionals, joining other guests with expertise in acute care and pharmaceuticals. As always, I enjoy the conversation with others in the health care space because it helps me better understand how family caregivers fit in that space.

The conversation focused on value and how the acute care systems and pharmacy systems strive to create that value. As I listened to their insights about value in their spaces, I realized we have no common definition of value across the systems. In my experience, the acute care system values speed — quick assessments, immediate interventions, timely discharges. The pharmaceutical space seems to value a constant development of medications in order to ensure a steady revenue stream.

We also spoke about the lack of transparency within the systems. The acute care system, for instance, prefers to keep pricing private so that pricing can adjust depending on payer. It seems the pharmaceutical industry values privacy for similar reasons.

At one point during our conversation, I spoke about the value family caregivers bring to the system as 24/7 providers and, yet, the system does not reimburse us for that value. We also spoke about how the system really turns on billing codes; without a code, a service cannot be provided because it can’t be reimbursed.

An attendee to our talk — a health plan employee — added insights about reimbursing family caregivers. It’s not as easy as assigning a billing code for reimbursement, he said. The plan would have to determine how much to pay a family caregiver based on assessing a patient’s level of care and care needs.

The health plan employee also shared that his employer believes in the value of patient care, which means they ensure their plan participants receive referrals for home health and/or skilled nursing care at time of hospital discharge. He also shared that his employer has ideas that can improve how the Centers for Medicare and Medicaid rates nursing facilities.

After his comment, the acute care expert asked me about staffing shortages. I explained that home health agencies and skilled nursing facilities do not have the staff to accommodate requests. (The New York Times published an article yesterday about this terrible challenge.) I also shared that my mom’s home health aide is unvaccinated but we continue to use her because we can’t risk going without because we can’t find a replacement.

After our discussion ended, it occurred to me that only only segment of the health care system understands all the pieces and how these pieces impact each other: Family caregivers. We interact with all segments through lived experience.

The health plan employee spoke about referrals to home health and skilled nursing facilities as if we live in 2010 when staffing levels were better. He also seemed completely unfazed about the other challenge — unvaccinated health care workers. When a COVID outbreak in a facility hits an already understaffed facility with low vaccination rates among staff, the impact of resident care will be absolutely devastating.

The health plan employee also completely missed the point about reimbursing family caregivers. At some point, there will be no other provider other than the family caregiver. Rather than putting excuses in place (“we need extensive and complicated assessments”), the health plan would be well-served to add a simple system of daily rates for family caregivers based on daily rates paid to skilled nursing facilities and hourly rates paid to home health providers. It’s just a simple switch. The reimbursement rates to facilities and home health is the same road map to use for reimbursing family caregivers.

The system already delegates complex care to us. It’s telling that they only balk about it when they have to pay for us doing the care they give to us without batting an eye.

That we are the health care system expert goes back to our value. Because we understand the systems, aren’t we the best judge of value? If we want to revise how Medicare rates facilities, shouldn’t we be the ones who drive that change? The health plan employee seemed very nice but he also obviously only reviews data. He clearly has never stepped foot in a facility or managed the chaos of a family member’s hospital discharge.

Family caregivers are the health care system. If parts of the system, like acute care and pharmacies, want to continue to make money, they would be wise to reimburse family caregivers for their value. The systems can’t continue without us. There is no hospital discharge, which the hospital values because it saves money, without us. There is no well-organized pill box of medications, which pharmaceutical companies value because it generates revenue, for our caree without us.

We help some segments save money while helping other segments make money. Why not reimburse us for that value?

What do you think?

(Image by Nattanan Kanchanaprat from Pixabay.)


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