This article was originally published in 2021 by Generations Today, a publication by the American Society on Aging.
The COVID-19 pandemic has had a devastating multidimensional impact on the world, especially among older adults, and specifically nursing home residents. More than 130,000 nursing home residents have died and for untold thousands their health and lives have been scarred by lingering long-term effects. The pandemic’s impact on the nursing home population brings up a critical and unavoidable moral question: why were so many of our most vulnerable fellow citizens living in such exposed circumstances?
The nursing home tragedy was a result, in large part, of moral failures in our long-term care (LTC) system that date back many years. The fact that so many Americans were living in nursing homes and so vulnerable to becoming infected was a situation caused by policymakers failing to fund the expansion of in-home services and much smaller community facilities. Older people greatly prefer such residences, and we have long known how to provide them.
The moral failure of not providing enough in-home and community-based services as an alternative to nursing homes is compounded by the absence of regulation concerning quality of care and quality of life, and insufficient enforcement resources. These regulatory inadequacies have been documented for years but have never been adequately addressed by federal and state governments.
We fund LTC at the lowest level among wealthy countries (.9 percent of GDP vs. 1.5 percent to 3.5 percent among European countries) and we rely on for-profit providers, mainly nursing homes and large insurance companies to administer state Medicaid LTC programs.
Our LTC policies and practices should have been guided from the beginning of major publicly funded (mainly Medicaid) LTC programs 50 years ago by an ethic of care. This care ethic would prioritize providing every person with LTC needs the kind of help they preferred, which could best preserve their quality of life as they become more impaired. In the absence of such an ethic of care we have allowed the moral vacuum to be filled by organizations seeking maximum shareholder value and policymakers obsessed with budget austerity.
“We fund LTC at the lowest level among wealthy countries.”
An LTC program designed with an ethic of care would prioritize improving quality of care and increasing access to care rather than prioritizing efficiency objectives tied to cost containment. This limited notion of efficiency is used by austerity hawks to justify the kind of underfunding that keeps the United States at the bottom of wealthy countries in the percentage of GDP spent on LTC services.
This does not mean that efficiency has no place in an ethic of care–oriented LTC system. It does mean, however, redefining the criteria we use in assessing efficiency to include measures of achieving an improved quality of care and life in LTC services and expanding access to them. This does not mean that efficiency has no place in an ethic of care–oriented LTC system. It means redefining the criteria we use to assess efficiency, including measures of achieving an improved quality of care and life in LTC services, and expanding access to them.
Commitment among policymakers and LTC providers to an ethic of care would not require giving up on preserving the autonomy of LTC recipients, including those living in nursing homes. An LTC system governed by an ethic of care would do more to protect autonomy than our current LTC system by making recipient autonomy an essential criteria for measuring service quality.
An ethic of care–guided LTC system also would support greater autonomy by expanding access to services to many more people who now are trapped in their homes by impairments for which they get little help. This greatly restricts their ability to make choices and to act upon them. In my judgement, commitment to personal autonomy is an inherent feature of an LTC ethic of care.
A New Moral Compass and Culture
A moral culture based on a communal ethic of care that includes prioritizing personal autonomy, but leaves no one to their own devices when they need help, is our surest guide to a morally defensible LTC system. Autonomy without care can quickly become neglect and an excuse for indifference. An exclusive focus on care, however, is a recipe for meeting bodily needs while ignoring psychological and spiritual needs.
The best way I think for us to memorialize the tragic fate of those who suffered and died in LTC facilities is to insist that policymakers honestly and explicitly commit to an autonomy-respecting ethic of care and then operationalize this commitment by moving without delay to transform our LTC system.
A true transformation would mean vastly expanding publicly supported in-home services programs and replacing our large, antiquated, traditional nursing homes. These facilities are not designed to protect residents from pandemics or to provide them with an acceptable quality of life. Preferably they would be replaced by smaller, more human-scale residences properly staffed by well-trained and fairly compensated staff.
A model for this kind of LTC facility is the Green House program, which for the past 18 years has been building and operating 10- to 15-bed small house residences that have proven to better protect the health and well-being of residents than traditional nursing homes, without being prohibitively expensive.
Policymakers should soon decide to make LTC a Medicare Benefit, as Sen. Claude Pepper had proposed more than 30 years ago.
President Biden’s proposal to spend $473 billion over the next 10 years to expand in-home LTC services is a strong move in the direction of the system transformation we need. Congress should adopt the President’s proposal as soon as possible.
I also hope that our policymakers soon decide it is time to make LTC a Medicare benefit, as Sen. Claude Pepper had proposed more than 30 years ago. By incorporating LTC into the Medicare program, we can ensure the level of funding required to support the LTC transformation that the pandemic has revealed to be a moral necessity. This transition is sorely necessary if we are ever going to treat impaired, dependent older and younger Americans with disabilities with the love and appreciation they deserve.
The French philosopher Emmanuel Levinas called ethics “first philosophy” because it is so fundamentally central to how we see ourselves and others. Ethics is the main source of what we value most, including the importance we place on virtues like courage, honesty and compassion, our daily behavior toward others, and the lens through which we view our lives’ moral arch, see our moral failings, and find opportunities to make amends and to seek and to give forgiveness.
Levinas thought the necessity to make moral decisions was a conscious constant in daily life and was most powerfully encountered in the faces of others, where we could see their joys, suffering and need for care. The capacity to see the faces of others in this way and feel the moral imperative to care for them depends upon preparing ourselves to recognize the true meaning of what we see and learn from the face of the other and then cultivating the moral capacity to respond.
This is a message that should be heard by all of us in thinking about how to be most responsive to our moral failings that contributed to the LTC tragedy. Levinas’ decisive message is that if we sincerely care about why this tragedy happened and want to take steps to ensure it doesn’t occur again, we will look into the faces of those who have needed the kind of care in old age they never received and are still not receiving and know that an ethic of care is first philosophy for LTC policy and daily practice.