What I Learned From My Family’s Home Health Experience

Anne Tumlinson | February 15, 2022

COVID-19 has opened the floodgates for health care at home options. Public health emergency waivers are fast-tracking telehealth and hospital at home—which provides hospital-level care in patients’ homes—while infection concerns have driven more patients to home health following a hospitalization. These services and models are part of a growing list of home-based medical care models that also includes in-home primary or palliative care, in-home dialysis, and paramedicine. Some are covered through traditional Medicare, and others are available only through Medicare Advantage plans.

For patients, payers, and health policy professionals like me, the health care at home promise is tantalizing. In its ideal state, it would take fixed capital costs out of health care and redeploy them into person-centered care plans that include the diverse services and supports that individuals with complex care most need. It would also help patients and their families avoid the grueling and sometimes dangerous experience of an institutional setting.

But my recent experience managing home health and hospice for my father has given me insights into the perils that patients and their family caregivers could also face. Before we can migrate more health care into the home, we need to take a hard look at our performance with the current Medicare home-based benefits: home health and hospice. My own experience supporting my 83-year-old father, who is living with two serious illnesses, suggests we have a long way to go before our payment systems and benefit design are seriously up to the task. Below, I share the lessons and insights I gained in that process.

Service Coordination Is Essential To Making Home-Based Health Care Work

One of the benefits of a hospital room is that services and providers can easily visit the patient, meals arrive, nurses check in regularly, the physicians round. It’s an institution and, as such, can be disorganized—no question—but it can also be efficient.  

What I realized, in arranging care at home for my father, is that scheduling home visits is a lot of work. And to manage that work, home health agencies commonly ask their clinical staff to “self-schedule,” a practice through which each individual clinical staff person gets in touch with the patient or caregiver directly to set up the visit. It seems practical, but it also leaves the patient or caregiver to serve a centralizing function among many different service providers.

This approach to scheduling created a lot of chaos in our house. Our phone was ringing constantly. We frequently experienced overlapping appointments between nurses and therapists. Often, we received little to no advance notice before a service provider arrived at our door. On at least two occasions, the physical therapist called to say he “was in the area and wanted to stop by in 10 minutes,” during the same window we were expecting a nurse. I had to call each of them separately to work it out.  

Throughout, all I could think was—if we “move health care home,” without appropriate solutions (human and digital) for service coordination, we’re going to turn family caregivers and patients into switchboard operators. What if I also had to juggle scheduling aide services, meals, or transportation; services delivered under new models that promise to address social determinants of health? It would be impossible. . . 

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