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Who cares for volunteer caregivers when they get sick?

Our medical system places heavy burdens on loved ones


Under different circumstances, Ruth Petrie might have been relieved to accept the role of patient. In February, a respiratory virus inflicted enough damage to her already weak lungs to land the 57-year-old in the hospital. When she was discharged nearly a week later, her first priority should have been her recovery. But her mother, sister, brother and son had the same infection. Her sister was in the intensive-care unit for it, and the four relied on Ruth for their care.

The American health-care system is difficult to navigate for the sickest patients, with family and other informal caregivers bearing a significant amount of this load. For the substantial number of these nearly 44 million caregivers who have major medical problems of their own, this work comes at a particularly high cost, providing a stark example of how our health system can doubly fail the sickest of the sick.

Unpaid, untrained caregivers navigate mazes of clinicians, home health-care agencies, pharmacies and nursing homes. They buy groceries, keep track of medications, administer injections, provide comfort, and schedule and sit in on medical appointments. They are most often women, and they face significant barriers — and consequences — when doing this work.

This was confirmed in our recent survey of some of the sickest patients in the United States — a collaboration of the Commonwealth Fund, the Harvard T.H. Chan School of Public Health and the New York Times. We talked to Americans who had seen at least three doctors and been hospitalized at least twice in the past two years. Nearly two out of three patients in our survey faced problems such as fragmented care, high costs or medical errors. Most of them — 86 percent — relied on friends and family for help. More than a third of respondents reported their caregivers struggled with the burden of that role. Nearly 1 in 3 said their caregivers found this work emotionally stressful, while 1 in 4 said their caregivers found it physically stressful. Other research has found caregivers have a higher risk of such medical issues as depression, anxiety, social isolation, and financial strain from out-of-pocket costs and lost income. They even have a higher chance of dying.

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Far too often, some of the sickest patients must also play caregivers. In another survey of the most medically complex patients at a large health system, 73 percent said they worried about caring for family members, while 42 percent worried about their own health. In a third nationally representative survey of older adults’ family and unpaid caregivers, 25 percent of the most involved caregivers reported having fair or poor health themselves, and they were far more likely than healthy caregivers to experience physical, emotional and financial strain.

Petrie (a patient of Ishani Ganguli’s who gave us permission to use her story here) caught the virus while visiting the ICU as her sister’s health-care proxy. She made the mistake of kissing her sister — asleep from a medically induced coma — on the forehead: “Within the week, boom, I was sick.” On the day of Petrie’s discharge, she took her brother to the Veterans Affairs hospital emergency department nearby with the same symptoms. She said she needed to explain to her brother’s doctors what had happened to the rest of their family and to advocate that he receive the same steroid and flu treatments that had worked for them. In the weeks that followed, there was no respite: “All I wanted to do was lie in bed,” she said. But “to ensure I was still getting my paycheck, I had to keep getting up to [a place near my house to] fax paperwork to the short-term-disability people.”

As internal medicine physicians, we have often seen the effects of caregiver burden — one so well-defined that it has its own medical billing code. For 71-year-old Barbara Murphy (another patient of Ganguli’s), it has not been a catastrophic event but rather a steady tax that has made caring for her own chronic conditions difficult. Each night after a long day of work, she heads to the apartment upstairs from her own to feed her 95-year-old mother, who was bound to her bed after a stroke. Half of the time, Murphy falls asleep without having her own dinner, let alone taking her diabetes or cholesterol medications. This context is critical for tailoring a treatment plan to Murphy’s needs.

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Yet too often, we clinicians fail to recognize that our patients are consumed by caring for their loved ones or feel powerless to help them do so. As doctors, we should just ask — and then remind our patients that while they may spend most of their time worrying about someone else, it’s our job to worry about them.

Health systems could ease the burden for caregivers, too. One way to help: offering virtual visits when feasible to save the precious hours off work needed to come into the clinic. When physicians refer patients to resources such as counseling, social work, support groups or meal-delivery services, that can help them cope with the psychosocial and physical consequences of caring for their loved ones. At a policy level, we should expand family leave to include job protections and direct economic support for caregivers. Individual states have started to do this — in July 2017, Hawaii became the first state to pay caregivers who have day jobs up to $70 per day through the Kupuna Caregivers Act. In January, the federal government took a step in the right direction with enactment of the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. The RAISE Act requires the secretary of health and human services to create a national strategy to support family caregivers, though there’s no funding behind it.

We asked Petrie what would have helped her get through the difficult time she had last winter. Maybe a visiting nurse to ease the burden, she said. “I was never able to lay down, put covers over my head, and rest. I just didn’t have that time. That’s why [my] illness lasted longer than it should have. I had to worry about everyone else.”