by Jackie Ogburn
Assistant Research Professor Nathan Boucher researches the experiences and expectations of patients with advanced illness or at the end of life and ways to support their caregivers. He has experience in clinical medicine, health care administration and community-based research, and is a research health scientist at the Durham VA Health System.
Recently, he has published several papers and reports about long-term care and the COVID-19 pandemic.
Q. What has been the impact of COVID-19 on the long-term care system?
A. The pandemic has been challenging for folks, with social distancing, strict visitation policies and infection hotspots in facilities. Also, COVID-19 has called attention to long-standing problems in the long-term care system.
It might be more accurate to call it a “non-system of care,” because it covers everything from family members and/or home health aides caring for a patient in the home, to many types of facilities, such as small home-settings with a few patients to the more familiar large-scale nursing homes and hospice facilities.
This patchwork of systems has confusing layers of regulation and complex payment systems. Most facilities are regulated at the state and local levels, with state-level licenses, with little consistency across states. However, a lot of the funding comes from federal sources, with different metrics and requirements.
Hospitals are more straightforward in both treatment and oversight. They treat patients for acute and short-term conditions. It’s more complicated to maintain the long game that long-term care requires.
All of these healthcare systems have been overwhelmed by the pandemic.
Q. What have been some of the challenges for long-term care that are unique to the pandemic?
A. Visitation is important for these patients, for both mental and physical health. To pivot so quickly to no visitation at all until facilities could ramp up to timely virtual visitation was huge. There should be support for all these facilities to get tablets for virtual visits and for telehealth as well. Social isolation was a problem before COVID-19 and it’s worse now.
Long-term care has both formal and informal caregivers who also need support. Formal caregivers are staff at facilities, home health aides and other health care providers. The pandemic has put huge stress on paid caregivers. The nursing assistants and home health aides are low paid, many without benefits or health insurance. For homecare, there is little regulation of pay and most work alone, so are at high risk for work-related injury in ordinary times.
Most of my research on informal caregivers has been on caregivers for veterans, which are usually family members – spouses and daughters mostly—and other veterans. The informal caregivers need the most support and get the least. The VA has more infrastructure for caregiver support, but VA and non-VA caregivers includes funds to pay caregivers for time during which they might otherwise hold a job, paid family leave to allow for periodic care of loved ones, and respite care to give caregivers a break from the intense physical and emotional care required.
Q. “Long Covid,” the long-term effects of the disease, such a permanent organ damage, chronic pain, depression, etc., will increase the demand for long-term care. What will this do to long-term care in the U.S.?
A. It’s too early to tell, we don’t have any real data yet. There are reports of patients who are recovered, but have permanent heart and lung damage. I liken it to chronic fatigue syndrome, which has only been widely accepted and treated relatively recently. Chronic pain issues get brushed off, since it’s hard to measure, and some basic treatment is to prescribe risky narcotics. There is no lab value for “long Covid,” meaning it will be hard to link the symptoms to COVID-19, as they will be self-reported. Even more problematic is that women and patients from minority groups frequently are not believed when they seek care for chronic pain or conditions without a clear test or diagnosis.
It’s like the 9/11 syndromes; it will be hard to establish the link between COVID-19 and the acquired illness. The healthcare workers, who gave their time and health to help others, should have their care paid for, and the federal government is the only entity that can do that.
Q. What are some of the policy recommendations you would make in light of this pandemic?
In the short-term, policy needs to target prisons and long-term care facilities, for targeted lockdowns to control spread and to be priorities for the vaccines.
The long-term care system needs to be supported to respond to disaster in a more nimble way. The system should be tied into the public health disaster response system. What we learned, or should have learned, from Hurricane Katrina is that patients die because there are not good ways to evacuate them. This is especially the case in small facilities, where there are far more patients than workers and there is no way to move patients.
In North Carolina, nursing facilities in counties with an infection rate of more than 10 percent can’t be open for visitation. In rural areas, we need to ramp up broadband access, to allow for virtual visitation and telehealth care.
For the informal caregivers -- the family and friends caring for patients at home -- they need interventions and help with social support, food, clothing and transportation. The health care system isn’t designed to provide that support, because the unit of care is the patient, not the family or friends that take on caregiving for ill community members.
In January, our Veterans Administration research team is rolling out a pilot program using lay navigators – community members trained to help informal caregivers navigate the complexities of available support services within the VA and in the community. They will be trained through Durham Tech Community College’s state-certified Community Health Worker curriculum to assess the social and practical needs of the caregivers as they face challenges caring for Veterans with advanced state illness.
Links to some of Boucher’s recent work on COVID-19 and long-term care:
- No Hugs Allowed: Isolation and Inequity in North Carolina Long-term Services and Supports during COVID-19
- A Day in the Life during COVID-19: Long-term Care Providers in Durham, North Carolina
- Older Adults Post-Incarceration: Restructuring Long-term Services and Supports in the Time of COVID-19
- Home Health Workers Are at Risk, Vulnerable and Need Our Help – commentary with Emma Dries
- Inclusion of Caregivers in Veterans’ Care: A Critical Literature Review
- Solving America’s Caregiving Crisis
- Impact of the COVID-19 Outbreak on Long-Term Care in the United States
- Prayer, Public Health, and Purpose: Distance Worship during COVID-19 – commentary with Abdullah Antepli