Lisa I. Iezzoni: For More Info, Go Here…
This blog post joins an emotionally laden niche genre written by people with long experience as clinicians, health policy researchers, or putative health care experts who describe feeling frustrated, baffled, buffeted, and sometimes ultimately helpless to rescue a loved one or friend from a dysfunctional and even dangerous health care system. During the mounting crises recounted in his essay, Michael turned to me as someone who supposedly understood how things worked and could therefore extricate him from his calamitous situation. Despite living 250 miles away, I thought I could help, but I rapidly realized that health policies I understood in theory functioned very differently in real life. Michael’s story is complex, with multiple interweaving threads. Here, I focus on three areas where I was blind-sided by erroneous assumptions and mirages—policies I thought held sway but ultimately proved illusory.
Mirage Of Person-Centeredness
The first policy mirage involved presumptions concerning person-centered care and erroneous expectations built on those false beliefs. I had recommended the Program of All-Inclusive Care for the Elderly (PACE) to Michael when, at age 59 and on Medicare through disability entitlement, he could no longer afford the extensive in-home services needed to support basic activities of daily living. I had read extensively about On Lok, PACE’s San Francisco, California-based progenitor, and had stars in my eyes about this extraordinary program to support persons with severe disability in remaining in their homes and communities. I knew the research evidence documenting PACE’s successes and had heard participants’ testimonials about how it had transformed and benefitted their lives.
I had assumed that PACE’s decision making was person-centered, with participants’ goals driving care plans and service delivery. Michael enrolled in a PACE program, which for the sake of his essay he calls MyPACE—not its real name. During Michael’s enrollment in this program, I heard with alarm sotto voce rumblings from some MyPACE practitioners asserting Michael was too disabled for their program and concerned about his choice to live alone in his fully adapted home. But I put those fears aside and felt reassured with MyPACE’s intensive in-home PAS. MyPACE supported Michael only in his home, not in the community activities he enjoyed. Nonetheless, his situation and quality of life measurably improved with MyPACE participation.
However, I had not fully appreciated that PACE—according to its original regulations—is not truly person-centered. Care plans for PACE participants are set by Interdisciplinary Teams (IDT), with rules stipulating IDT membership: primary care physician, registered nurse, Master’s-level social worker, physical therapist, occupational therapist, recreational therapist, dietician, PACE Center manager, home care coordinator, personal care attendant, and driver (transportation services representative). PACE participants have no formal role on IDTs. According to Centers for Medicare and Medicaid Services (CMS) guidance, IDT members determine participants’ needs and outcomes or goals:
