In September 2020, deep into the COVID-19 crisis, a report commissioned by the US Centers for Medicare & Medicaid Services (CMS) concluded, “The time has come for a turning point in nursing home care.”
Terry Fulmer, PhD, RN, is president of The John A. Hartford Foundation.
Diane Bondareff/The John A. Hartford Foundation
A year later, the pandemic’s wide, devastating swath through US nursing homes had produced more than 1.3 million confirmed cases among residents and staff, according to the CMS. The death toll is sobering: SARS-CoV-2 has killed nearly 136 000 nursing home residents—representing about a fifth of US COVID-19 mortality—and more than 2000 workers.
When the pandemic struck, nursing homes’ long-simmering problems boiled over. As Terry Fulmer, PhD, RN, and coauthors wrote in a commentary last year, “there is agreement that, in general, America’s nursing homes are not designed, operated, or funded to deal effectively with infectious disease epidemics, and their staff are often too few in number and inadequately paid, protected, and trained.”
Fulmer, a geriatric nurse practitioner, is president of The John A. Hartford Foundation in New York City, a group dedicated to improving older-adult care. COVID-19 put an often harsh spotlight on her field—one that she says is usually ignored until tragedy strikes. But with that attention came an opportunity. In an interview with JAMA, Fulmer called the pandemic “a moment to really rethink and restructure the way we approach skilled nursing facilities in this country.” The foundation stepped up, allocating emergency grants to several key projects. “We acted as quickly as we could, pulling the levers we can,” Fulmer said.
Before the pandemic, the organization was in discussions with the National Academies of Sciences, Engineering, and Medicine (NASEM) to fund a long-overdue follow-up to Improving the Quality of Care in Nursing Homes, a landmark Institute of Medicine consensus study report published 35 years ago. The public health crisis accelerated the project at NASEM, according to Fulmer, and the new report is due early next year.
Other early-pandemic grants went to the Institute for Healthcare Improvement for daily virtual nursing home “huddles” and to the FrameWorks Institute for guidance on reframing how the public thinks about nursing homes. More recently, the foundation granted funding to the nonprofit organization Health Careers Futures for its Revisiting Teaching Nursing Homes pilot study, an update of a successful 1980s program that gave nursing students real-world training in the long-term care setting.
Fulmer discussed how the nation’s 15 505 nursing homes must evolve to better care for an aging population. The following is an edited version of that conversation.
JAMA:We’re about a year and a half into the pandemic now. How are nursing homes holding up?
Fulmer:At the beginning of this terrible pandemic nursing homes had no roadmap, no guidelines from federal authorities. And they were abandoned because they were not given personal protective equipment (PPE) or testing.
Before the pandemic, nursing homes were pretty much invisible except when there would be some tragedy, like Hurricane Katrina. During the pandemic, all of a sudden there was this spotlight on nursing homes. There were headlines that said they are death traps and headlines that said they’re doing heroic work under the worst of circumstances.
Nursing homes have come through this in a way that has shaken them to the foundation and caused them to reexamine everything they do. I think they’ve learned a lot and stepped up in really remarkable ways. They are still suffering. They have the most challenging workforce recruitment, and they continue to be hampered by overregulation that doesn’t help and underregulation that doesn’t really protect the resident.
JAMA:You’ve written that the pandemic presents an opportunity to reimagine the role of nursing homes. How do you characterize their role today?
Fulmer:In the United States, we use nursing homes for older individuals who need help with their basic activities of daily living: eating, feeding, bathing, grooming, toileting. The 2 main reasons people go to nursing homes is when they have severe cognitive impairment, like dementia, or when they become incontinent of stool or urine. That is usually a tipping point for families. There is a moment where it becomes not only physically challenging, but very mentally challenging.
We also use nursing homes as postacute rehabilitation locations. If you fracture your hip, you are sent or asked to go to a nursing home, where you would get intensive rehabilitation to get you strong enough to go home.
JAMA:Did this infectious disease crisis reveal problems with how nursing homes are laid out?
Fulmer:Absolutely. Over 60% of nursing homes were built about 50 years ago. They’re aging structures. They have double rooms, shared bathrooms—a nightmare for infection control. Long corridors. Nursing stations that are remote from where the residents are. Forgive me for making this analogy, but they were built sort of like prisons. Not that we intentionally meant to do that. But it’s not a feasible model for the future.
We need small. Green House is a model that is very exciting. They have small locations of care. Maybe 12 individuals live in a setting. It’s personalized. It would look more like your living room than an institution. They have universal care workers who not only help you with your activities of daily living, but maybe help you make sure that you call your daughter that day. Or help you with your laundry or with your breakfast. I think Green House has a lot of merit. It’s the deinstitutionalization and personalization of care. It’s a very powerful model and I think it will really spread in scale after COVID.
JAMA:How do we afford that?
Fulmer:I think that we make choices. We spend $3 trillion a year in health care in this country. One could ask, is that money appropriately allocated right now? Is it really appropriate to have 5 MRI [magnetic resonance imaging] devices in a town? Maybe you could collaborate a little better? The literature is very clear about waste in health care and that’s where I think we can make a definitive difference.
JAMA:But making those choices would require us to truly respect our elder community.
Fulmer:It absolutely comes down to eradicating ageism. The greatest success story of the 20th century is aging. If you were born in 1900, you lived to be 40. If you’re born now, you live to be 80. My kids will live to be older than that. Pacemakers, kidney dialysis, antibiotics—genius work. We have to ask ourselves how to capture the capacity of our aging population and also take care of those people who have aged in a way that makes them require more care.
JAMA:How else do you envision nursing homes evolving to better serve the aging community?
Fulmer:More homogeneity of the population within settings. If you’re in a care setting with, say, 130 beds and you have an array of clinical complexity with severe dementia along with people who need hospice care, along with people who need mobility care, that’s a lot of different types of expertise. And I think you can imagine what it must feel like if you’re a hospice resident and the person next door to you is creating loud vocalizations because they have dementia. There could be utility in having skilled nursing facilities dedicated to care for people with dementia and others dedicated to people with disabilities without dementia. And others for hospice and end-of-life care.
Older people who begin to lose their memory and begin to need help with function might do well with assisted living. As their comorbidities progress, their care needs might outstrip care capacity, and that’s when nursing homes come into view. Inpatient memory care is an opportunity to cohort and have experts really work with individuals and help the families as they go through this transition from memory to no memory.
I also have advocated, and I believe strongly, that we should have continuing care units in medical centers. For example, if you’re at Mass General Hospital and you go to their continuing care unit postdischarge instead of to a skilled nursing facility, you’re in a location where there are staff, PPE, infection control experts, and equipment. Why do we need to move people around when we could be creative? The only thing that holds us back are payment structures, and those are absolutely fixable.
JAMA:Hospitals used to have long-term care wings, correct?
Fulmer:A long time ago, they had extended-care wings. For payment reasons they were discontinued. But my notion, and the notion that others have discussed, is that you could have an extended-care wing. After your hip fracture [surgery], you would go down the hall instead of to another building with other staff who don’t know you. Every time you change staff, you reintroduce the opportunity for infection. It also is very upsetting for people to move locations when they’re just getting to know the staff. I firmly believe in extended-care wings. That simply means being on the same campus where the surgery was done.
JAMA:What are some long-term solutions to nursing homes’ staffing issues?
Fulmer:We, in society, have taught nurses that to be a nursing home nurse is second-class nursing. You’re not smart enough to be in a hospital so you go work in a nursing home. That’s absolutely not true. It’s very cognitively challenging work. Right now, nursing homes are required to have a registered nurse, as opposed to a licensed practical nurse or a nursing assistant, for 8 hours a day. But you need an individual who is educated to respond to clinical conditions in a timely manner on site. Our medical directors are not on site, and sometimes they are hard to reach. I want regulation that requires a 24-hour RN in a facility. That is a way to begin to really demonstrate through action that you are very interested in supporting nursing home staff.
How about wages and benefits? What we’ve seen very clearly during the nursing home pandemic crisis is that the minimum wage for nursing assistants needs to be raised at least 15% to 20% an hour in the very near future and that they need benefits. They need paid sick leave. They need family leave. They need health insurance. They don’t have that. That’s why some of them work 2 or 3 jobs. That’s why some of them went from nursing home A to B to C, and there was cross-infection.
You need support for the staff. It’s exhausting work. During COVID, one of the things that we saw was the incredible number of deaths in nursing homes without people pausing and saying, do you need counseling? Do you need a break? How can you give people a break when you can’t even get the place staffed? We have to make sure that this doesn’t happen again.
JAMA:How could technology play a bigger role in nursing homes?
Fulmer:Japan is way ahead of us in terms of technology and care. They used robotics much earlier and much more effectively because they have an inversion of their population, where they have fewer younger people than older people. That’s where we’re heading as well.
I think about technology in terms of the mechanical things, like lifting devices. And there are robotics that can be interactive with people. I was watching a video of a Japanese facility where a robotic person, if you will, is talking to an older adult in a very comforting and soothing way. We need nurses. But nurses and physicians and all of our health care interdisciplinary team will be the professionals who have oversight for robotics. Do you really need a person to carry a tray into a room? Or to make a bed?
JAMA:The need for isolation and social distancing in nursing homes during the crisis has been a huge challenge for residents’ mental and emotional health and for their families who can’t see them. Are there ways to strike a better balance?
Fulmer:There are. We’ve seen recommendations that say that we should never go back to that model that we used, and that there should be at least one family member allowed to be present for a nursing home resident at all times. They are part of the care continuum. I’m going to give you an example of what we’ve seen during COVID. Older adults who no longer had their family member present lost weight dramatically. They became dehydrated. They were less able to keep up with their hygiene. It’s a clarion call to say the families are part of the care team.
JAMA:What does the nursing home of the future look like to you?
Fulmer:The nursing home of the future to me looks like home, and that’s because it should be home. We need to make sure that we move forward with a plan to have people age in place and die in place. Many people become bankrupt in the process of paying for nursing homes that might be $300 000 to $500 000 a year. We have hospitals at home. We have rehabilitation at home. Why not have nursing homes at home?
What does it take to structure a home environment so that older people can stay there until they die? There are some creative programs like the [Johns Hopkins School of Nursing] model called CAPABLE funded by the National Institute on Aging. The idea there is that if you were to do a home visit, you might find that with some extra railings, steps, lowering a kitchen sink, somebody could stay at home. If we can figure out how to take care of people with profound pneumonia in the home, I know we can take care of people who need nursing home care in the home. And it can’t just be for rich people. It has to be for everybody. And for those individuals who choose or require a facility, that facility needs to feel like home.
Accompanying this article is the JAMA Medical News Summary, an audio review of news content appearing in this month’s issues of JAMA. To listen to this episode and more, visit the JAMA Medical News Podcast.