Six years ago, I lost both of my parents, one month apart. Each had lived a full, meaningful life, and that gave some comfort – but I grieved as anyone would.
I learned a lot as the family caregiver for my father, who was diagnosed unexpectedly with multiple myeloma as a vibrant 87-year-old. Like so many who have navigated the end-of-life maze, I saw firsthand how our uncoordinated system makes things harder, and more expensive, than they need to be.
This didn’t entirely surprise me. My dad founded Humana in 1961 and led it for 44 years, and I spent my career in healthcare venture capital while also serving on Humana’s board for 30 years, succeeding him as chair.
We had almost every resource one could imagine, including good insurance and a relevant network. Dad received great medical care and kind treatment. We had no complaints about quality of care.
But all our knowledge and advantages didn’t protect us from the uncoordinated complexity of end-of-life care. As the fee-for-service healthcare system began treating him as a collection of organs, each with its own specialist, along came multiple prescriptions, appointments and waiting rooms. The lack of coordination was maddening. My parents lost precious time with each other, and our family struggled with avoidable stress.
I felt overwhelmed with guilt and inadequacy. Why couldn’t I manage this, with all the resources at hand?
Added to this complexity was Americans’ discomfort with talking about death. When clinicians, faith leaders, social workers, friends, and family struggle to address hard realities, everything is more challenging.
Eventually we found a palliative care doctor who stilled the waters, directing care and communicating with clarity and candor. Dad’s end was peaceful and marked with humor (one of his lifelong gifts).
These are a few lessons that I’ve learned from this experience:
- Stop the schlepping! The cost of uncoordinated specialty care is too high, whether you measure cost by dollars or quality of life. Multiple waiting rooms inflict pain, loneliness and confusion, and scarcity means precious time is lost. Value-based payment structures that support clinical quarterbacks (palliative, geriatric or integrated primary care) are the best solution to what I call the problem of “schlepping.”
- Apply tech to make humans better humans. Digital tools can enhance caregivers’ work. Smart scheduling, routing, payroll, and ambient scribing reduce administrative time and help retention. Remote diagnostics can replace office visits. AI can help patients and families understand prognosis and side effects. (My retrospective review with AI persuaded me that I eventually understood Dad’s case accurately, but at the time it took far longer, and privilege, to get there.)
- It’s not all about healthcare. We must get more comfortable talking about death. Many Americans approach death without discussing their hopes, even with good estate or advance planning directives. There are beautiful models of how to get started.
- Support unpaid caregivers. Their work saves money for public programs, and yet they often feel alone. Most of us will both be and need one someday. Great paper here.
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David A. Jones, Jr., is chair and managing director of Chrysalis Ventures, and chairs the board of the Humana Foundation.
