To date, 68,000 residents and staff of nursing homes and other long-term care facilities have died from COVID-19, accounting for a significant proportion of U.S. pandemic deaths. According to the editorial board of the NY Times, “…many, if not most of those 68,000 lives could have been spared with careful planning and effective leadership.” There is little doubt that poor management and unwise decision-making, sometimes driven by cost considerations, exacerbated what was already a highly flammable situation. Putting a large number of very old people with multiple underlying health conditions together and then sending in caregivers who live in communities with high rates of coronavirus is asking for trouble. But to blame for-profit chains for the devastation wrought by COVID-19 in nursing homes, as the NY Times does, is missing the forest for the trees. It is like blaming the forest fires raging throughout the western U.S. on gas companies that had not cleaned up the dry brush near their power lines while ignoring the role of climate change and of urbanization that have brought hotter, dryer conditions and dense human habitation in close proximity to forested areas, respectively. A recent article in the New England Journal of Medicine gets it right, suggesting that “the coronavirus has exposed and amplified a longstanding and larger problem: our failure to value and invest in a safe and effective long-term care system.”
The problem began, as Rachel Werner and colleagues from the University of Pennsylvania argue, with the Medicare and Medicaid legislation of 1965, which effectively medicalized long-term care. Long-term care refers to services that help people get by when they cannot perform everyday activities independently; it encompasses housing, personal care, and medical care. By placing almost all government support for the social and daily care needs of frail older individuals under a medical umbrella, the non-medical needs were given short shrift and the medical needs were under-funded.
I’m talking about frailty because it’s frail older people who are the main users of long-term care. Frailty refers to a syndrome of age-associated loss of independent functioning that puts people at risk of illness, decline, and death. Frail people constitute about 15 percent of the elderly population or 8 million people. Most frail elders continue to live in their own homes and get help from caregivers; about one million live in an assisted living facility, where they have their own apartment but eat meals communally, receive a small amount of personal care each day, and can participate in on-site social activities; another 1.3 million live long-term in a nursing home. How does the prevailing long-term care system in the U.S. operate and how do Medicare and Medicaid determine its contours?
In terms of housing, because Medicare and Medicaid are medical programs, they were not designed to cover housing. Medicare does not pay for housing at all: it will pay for short-term “post-acute care” after a hospitalization, either in a rehabilitation facility or a skilled nursing facility because that is viewed as hospital care. Medicare does not pay for long-term residential nursing home care or residential hospice care—it will cover medical care received by an individual who lives in a nursing home or a hospice, just as it covers doctor’s visits and laboratory tests for a person who lives independently in his own home. Medicaid pays for nursing home care for individuals who have “spent down” all their assets and are sufficiently physically impaired to require nursing home in a rare acknowledgement that the line between housing, personal care, and medical care is blurred for frail older individuals.
With respect to personal care, Medicare provides only those home care services that are deemed necessary because of an acute illness. Patients who are hospitalized for pneumonia or a stroke or a heart attack can have personal care services at home (a homemaker or health aide) while recovering from their acute medical problem as long as they are also receiving some type of skilled care at home such as a visiting nurse or a physical therapist. Medicaid is more generous in its coverage of home-based personal care services by not tying them exclusively to a single episode of illness, perhaps recognizing that it is cheaper to pay for a personal care attendant at home on a long-term basis than to pay for the alternative, which is residential nursing home care. Nonetheless, the number of hours of personal care available per person per week is very limited: two hours a day, several times per week, is a typical benefit; four hours a day, seven days a week is a rare extensive benefit.
Lastly is medical care. Because Medicare was initially crafted as an acute medical benefit, intended to address short-term medical care, it provides good coverage for hospitalization and brief post-hospital care in a skilled nursing facility or similar site. It also has comprehensive out-patient coverage, but it was never intended to promote medical care at home—even when “home” is a nursing home. Long-term care, by definition, is chronic. Only recently has Medicare added a chronic disease management benefit in recognition of the reality that fully 68 percent of Medicare beneficiaries have at least two chronic conditions—and another 37 percent have four or more chronic conditions. More recently still, the CMS Innovation Center (authorized by the Affordable Care Act) launched the “Independence at Home” demonstration project, which provides for home-based primary care, but this initiative is capped at 10,000 enrollees.
What are the consequences of a system that sees itself as providing a medical rather than a long-term care benefit? Because coverage of supportive services is modest—whether for home health aides or homemakers or transportation—the system tends to favor institutional care over home care. Services that might enable frail older people to continue to live at home are insufficient, driving them into nursing homes; services that would facilitate treatment of acute medical problems at home are lacking, promoting the use of hospitals. For nursing homes, there are additional consequences. Nursing home regulations, promulgated by CMS but monitored by local health departments, focus on safety and adherence to selected public health measures, such as annual flu shots, rather than on quality of life. Paradoxically, physicians are paid separately by Medicare and are not included in per capita Medicaid payments, a system that promotes highly individualized medical care rather than a focus on the community.
The failure to recognize the importance of long-term is unique to the United States in the developed world. European countries provide a comprehensive long-term care benefit for older and disabled individuals. The structure of the benefit and the mix of private and public services available using the benefit are highly variable from country to country.
Most European countries offer universal coverage, with nursing and personal care available to all eligible individuals (based on an assessment of their level of dependency in basic daily activities). Co-payments and deductibles are common, typically subject to income thresholds. In a number of countries, frail older people can choose whether to receive that personal care in their own home, in the home of a family member, or in an institutional environment. In some models, they can opt to receive a cash benefit rather than an in-kind benefit, and can use the cash to maintain their independence, whether by remodeling their home to make it more accessible or to pay for private aides.
In Denmark, for example, priority is given to community over residential care. A frail older person living in his own home or in a special dwelling for the elderly is entitled to home health services (generally nursing and rehabilitative care) and practical help (assistance with shopping, cleaning, meal preparation and personal care). Both health care and long-term care are public responsibilities. LTC financing and provision are the responsibilities of the local municipality and health services are planned and operated on a regional level. A case management system serves to coordinate the health and long-term care components of care. The system is financed through both local and national taxation.
The existence of a long-term care benefit would not, by itself, have prevented COVID-19 from sweeping through American nursing homes. But it would likely have decreased the number of frail older people who live in nursing homes and assisted living facilities in the first place. For those individuals who nonetheless required an institutional environment, a long-term care orientation would have meant attention to quality of life, which would have resulted in private rooms and single bathrooms. This sort of living arrangement is far more conducive to limiting the spread of an infection than are the old-fashioned double or even four-bed rooms.
Once we reconceptualize nursing homes as primarily places where people live and only secondarily as sites for the delivery of health care services, we can move on to our next challenge: designing a branch of medicine that addresses both the individual geriatric needs of residents (advance care planning, incontinence treatment, fall prevention, avoidance of polypharmacy, etc.) and community health needs (flu shots, sanitation, good nutrition, etc). If we minimize the number of frail elders requiring institutional care by supplying community services, and we then modify the nature of the medical care provided within those institutions, we can anticipate a lesser toll from the next epidemic—and an improved quality of life for society’s frailest and oldest members.