Fulbrighter COVID-19 response: the future of long-term care
Christian Goodwin was a 2018-19 US-UK Fulbrighter to the University of Liverpool, where he received his master’s in Public Health and was a visiting researcher with the Palliative Care Institute Liverpool.
He reflects on the impact of COVID-19 on long-term care in the US and where the sector should go from here.
COVID-19 has ravaged long-term care (LTC) facilities. Recent estimates suggest half of all COVID-19 deaths in the US have occurred in nursing homes. The scale is almost incomprehensible. Even though the danger hasn’t subsided, we have to ask: what then must we do? How can we rebuild a LTC system that preserves dignity and prevents future injustices for the elderly? As a public health researcher and a former caregiver and home health aide, I believe there are four important recommendations for any LTC reform and recovery.
1) Don’t let COVID-19 institutionalize nursing homes
Nursing homes were originally designed to keep residents safe, not happy or fulfilled. Over the past 30 years, we’ve made incredible progress towards more “person-centered” LTC through initiatives like the Eden Alternative, the assisted living movement, and the Wellspring Model.
COVID-19 threatens that progress, however. Person-centered models often rely on high-touch care, socialization, and resident autonomy. In this moment, it would be tempting to eliminate these elements, to lock residents down and medicalize care in the name of safety.
Institutionalizing and depriving these places of their community isn’t the only way forward. We can’t allow COVID-19 to sabotage decades of work towards person-centered care. Keeping individuals safe is counter-productive if we take away the things that make life meaningful in the process.
2) Don’t indemnify LTC against negligence.
Indemnity for LTC facilities has sparked debate. LTC facilities say indemnity is important given the unprecedented strain of the pandemic, but legislators shouldn’t give the industry blanket indemnity against negligence.
Nobody wants to bankrupt LTC facilities or sue them for inevitable loss of life in the midst of a pandemic. Some deaths from COVID-19 are unavoidable. In the case of true negligence, however, a lawsuit can be an important tool to expose poor care, prevent its spread, and protect those most vulnerable. Lawsuits have kept LTC facilities accountable and spurred significant positive changes. Keeping nursing homes solvent is important, but protecting the indigent, frail, and elderly is even more important.
3) Protect and invest in caregivers
Nursing home staff have been deeply affected by the crisis. Reports of inadequate protection and staff infections and deaths have surfaced across the country. Aides and nursing assistants provide the majority of care in LTC and bear the majority of the risk.
While bearing the most risk, aides and assistants are some of the lowest-paid healthcare workers with an average median salary of $23,000. Women, especially women of color, disproportionately fill these roles.
The system has reached a breaking point as facilities have been unable to fill these low-paid positions. We must address the fact that the most vulnerable caregivers are made more vulnerable by their lack of financial means, high uninsured rate, and structural racism. If we want our caregivers to better support our loved ones, we must better support them with higher pay, better training, and more comprehensive health insurance.
4) Don’t turn a blind eye to LTC
People have become scared of nursing homes. Many families are feverishly removing their loved ones from LTC facilities that they feel are no longer providing adequate care or protection. Others decided to move their relatives after bans on in-person visits were extended indefinitely in many states.
The exodus from these facilities is understandable. It’s not an option, however, for the vast majority of long-term care residents. Many residents lack financial means. Medicaid, which insures the indigent in the US, already pays for 6 out of 10 nursing home residents. Even for private-paying families, the complicated logistics of caring for a loved one at home make the move infeasible. Removing our loved ones from LTC facilities may address the short-term concerns of some affluent families. It doesn’t fix the systemic issues that led to this crisis though, and leaves vulnerable people to suffer in greater anonymity.
The long-term care situation is grim. But unless people stop aging, the need for LTC won’t disappear. One study estimates that half of older adults will spend time in a nursing home in their life.
COVID-19 provides an opportunity and a moral mandate to revamp the LTC sector. These 4 recommendations are a starting point; there are many other changes we could implement. Through Fulbright, I explored how organizational psychology can help us better support and care for our caregivers. Legislators and regulators are recognizing the value of compensating and investing in frontline caregivers with increased pay, training, and insurance. Medicare and Medicaid have been willing to explore new payment methods that move away from fee for service and can incentivize more person-centered care.
There’s an immense amount of work still to do, but COVID-19 provides an opportunity to address longstanding issues in LTC. As the US prepares another relief package and new regulations for LTC, we must prioritize caregivers by providing hazard pay and sufficient PPE in the short-term, and increased benefits with merit pay in the long-term. Socialization and person-centered care for residents must be a priority, not a luxury.
No matter what happens, we will still need LTC. If we act on this opportunity, we can build a better system that ensures dignity at the end of life is a right, not a privilege.
To see more stories of how US-UK Fulbrighters have responded to the COVID-19 crisis, see here.