The government should require that owners give residents private space — or it should take over the facilities and replace them with small homes.
[Editor’s note: Margaret Morganroth Gullette, resident scholar in the Women’s Studies Research Center at Brandeis University, is the author of “Ending Ageism, or How Not to Shoot Old People.” Her forthcoming book is “American Eldercide: How It Happened, How to Prevent It.” She is also a member of Dignity Alliance Massachusetts.]
Ideas in the Boston Globe by Margaret Morganroth Gullette, March 15, 2023. Margaret is a member of Dignity Alliance Massachusetts.
This concerns all of us. At the start of the COVID-19 pandemic, in 2020, many residents of nursing facilities died because they were crowded together in small rooms with other people, with often nothing more than a plastic shield between the beds. If an aide unknowingly carried the coronavirus into the cramped space and one resident caught the highly contagious disease, other roommates could too. They were all locked in, and their families and friends, social workers, and the occasional ombudsman were locked out.
Most residents — despite being old and physically vulnerable — have survived the pandemic. They were resilient. But residents of the 363 nursing facilities in this state are still dying every week from COVID. They were individually special and well-loved, and their untimely deaths are deeply mourned.
This concerns all of us. At the start of the COVID-19 pandemic, in 2020, many residents of nursing facilities died because they were crowded together in small rooms with other people, with often nothing more than a plastic shield between the beds. If an aide unknowingly carried the coronavirus into the cramped space and one resident caught the highly contagious disease, other roommates could too. They were all locked in, and their families and friends, social workers, and the occasional ombudsman were locked out.
Most residents — despite being old and physically vulnerable — have survived the pandemic. They were resilient. But residents of the 363 nursing facilities in this state are still dying every week from COVID. They were individually special and well-loved, and their untimely deaths are deeply mourned.
The best response to the sobering facts of danger and death would be to deinstitutionalize as many current long-term care residents as possible, returning them to their communities. That’s what most people yearn for. Expanding a government program called Money Follows the Person would make that possible for more long-term care residents. The program also lowers costs. But because it is not possible to empty the nation’s 15,000 nursing homes of 1.2 million people, many of whom need care up to 24 hours a day, what then?
The answer is architectural, medical, and ethical. Each person should get a private room if they want one — not a room with two beds or a single bed in a dormitory. Being in their own room keeps vulnerable individuals safe. It makes residents feel more like human beings of value. Sweden and Denmark have moved to this higher standard.
In Massachusetts, the Department of Public Health mandated in 2021 that there be no more than two people to a nursing home room. That is better than before but still leaves the residents unhealthily confined. The space for a bed, a tiny chest of drawers or locker, a night table, and a chair is allowed to be as small as 90 square feet. Two-person rooms provide no privacy. A roommate may snore, cry out in her sleep, drift into your space, watch TV 12 hours a day, take one of your few remaining precious possessions.
Only Dickens could do justice to this inhumane minimum. The federal government requires even less, only 80 square feet per person. A resident could be lying less than 6 feet of shared air away from the person in the next bed. Such regulations exist to prevent nursing facility owners from going even smaller.
Almost all the owners of the facilities in Massachusetts agreed without a fuss to the two-to-a-room mandate, even though they lose some Medicaid funding, which is allocated per head. The industry here now has many empty beds, partly from deaths, partly because potential clients are fleeing. Thirty-one owners refused to comply with the mandate and have sued the state to prevent it. Four, all in the western part of the state, are closing rather than giving their residents more space.
When owners close facilities, the residents are often unable to find other accommodations. Often the available choices are badly run or farther from family. Good people in state government or nongovernmental organizations struggle to find them another placement.
There are two solutions. The state could build “small houses,” as it will be doing in a $400 million renovation of the infamous Holyoke Soldiers’ Home. This approach, which is also known as the Green House model and admired in many states, cares for 10 to 12 people, each in a single room. One study, of three-quarters of the Green Houses and other small houses around the country, found that no one in that sample of centers died in that first terrifying spring and summer of 2020. In small houses, retention of aides improves. Residents’ health improves. Many emergency room visits are prevented; many illnesses are more safely treated in-house. Small houses offer the safety and dignity our elders deserve.
If we can achieve this for the veterans in Holyoke, why not for other vulnerable nursing home residents who need the same kind of skilled or constant care?
The second solution would be for the state to take over failing facilities. Many citizens dislike “lemon socialism” — when the government takes responsibility only for failing capitalist enterprises — but the situation of chaotic multiple closures and a wealthy pigheaded industry demands radical thinking.
Reformers have been begging for comprehensive improvements for decades. The state has some powers, but all over the country, the lobby is strong. Many nursing facilities are part of a multibillion-dollar industry and must provide high earnings for shareholders. A conscientious legislator aiming to improve grim conditions has at her ear an industry lobbyist whispering about helping her campaign — while he holds the threat of a home’s closure behind his back like a grenade.
Some of the two dozen bills before the Massachusetts Legislature aim to raise the minimums of care hours and improve working conditions. Giving residents more space without providing enough trained and well-paid aides would still be a guarantee of continuing misery, morbidity, and mortality.
Under Governor Maura Healey, can the state finally be trusted to serve the elders in its charge with decency? By running refashioned facilities humanely and honestly and using guaranteed Medicare and Medicaid funds, the state could in one stroke save money and improve conditions.
We should all seek age and disability justice. Given a vast retirement savings crisis and increasing ill health, Gen X and Gen Z may also need a bed someday.
Margaret Morganroth Gullette, resident scholar in the Women’s Studies Research Center at Brandeis University, is the author of “Ending Ageism, or How Not to Shoot Old People.” Her forthcoming book is “American Eldercide: How It Happened, How to Prevent It.”
Related articles in the Boston Globe:
- Ideas | Michael Murphy: What Paul Farmer taught me about ‘dignity construction’ in health care
- Editorial: Three- and four-bed nursing home rooms should be phased out
- Letters: Nursing home woes are a grim window into who we are, what we value
Weeded Comments from the Boston Globe article
- PENBOOKMIND: Whether it is in the hospital after a surgery or in a temporary rehab facility or in a final residence – “a nursing home” -most of us would prefer a private room. Some people can get them, but they usually have to pay extra. Most seniors do not have the money to do that. While it is encouraging to learn that the state now mandates two patients to a room and no more than that, two is still too many. The idea of a private room in which to die (after all, that is essentially what a person is doing in a nursing home even though they may stay there for years) is a dignified idea. The room situation, though, is only one piece of the old-age puzzle to be worked out. We need better trained CNAs, aides who agree to vaccinations, and we need to pay the aides a livable wage. Until all this is worked out, most of us can look forward to ending our years in cramped quarters, possibly with a roommate who is impossible to live with, and being cared for by someone who is tired, burnt out, and underpaid. WHY aren’t more people talking about these issues?
- SENATORMOORE: Margaret Gullette makes a strong case for treating older adults and people with disabilities residing in nursing homes with more dignity! Single rooms ought to be the standard in most nursing homes to protect residents from infection and to provide a reasonable amount of privacy. This thoughtful, well-written article only touches one of the issues that make the prospect entering a nursing home so frightening to many people if they’ve ever visited a relative or friend who lives in one. The regulation of not more than two residents per room is a step in the right direction. So are regulations requiring adequate nursing staff, prohibitions against restraint (including chemical restraint with drugs), more effective infection control (including keeping facilities clean), and other consumer protections that are part of state regulations. The problem is not lack of regulations, it is lack of oversight and enforcement! Well – intended regulations are designed to protect residents from nursing home-owners who want to maximize profits by employing inadequate, overworked and underpaid staff, why are state regulators so timid to insist upon safe, quality care? Why do they seem to ignore violations of regulations designed to protect the residents and their families? Ms. Gullette asks why aren’t more people talking about the issues? It may well be that the Department of Public Health and the Office of the Attorney General have yet to blow the whistle on egregious violations and let policymakers and the public know about the sad state of the nursing home industry. Four nursing homes in Western Massachusetts for example, are closing without sufficient help to residents and families in apparent violation of closure regulations. What is the DPH doing to sanction those involved? Do officials actually know where residents are being relocated, whether sufficient care if being given to minimize a serious condition known as “transfer trauma?” Since the majority of nursing home residents are women and most staff are women, isn’t this a human rights, especially women’s rights, issue? The Legislature needs to approve legislation to promote improved quality and real oversight of long-term care. A good start at legislation got stalled last year, and it needs a lot more in the way of meaningful oversight, but it was a start. Legislators also need to make sure that the agencies that are supposed to provide oversight have the staff and the leadership needed to implement those reforms! Laws and regulations won’t do the job in providing better care for nursing home residents and better treatment of staff if there’s no one to police the “bas actors.” Bailing out a failing industry isn’t the answer either. Let’s not feel we’ve done what needed to protect nursing home residents by enacting reforms and giving more money unless we enforce the reforms and follow the money.
- LLSHAP: Thank you for writing this. My loved one — late-stage Alzheimer’s, unable to speak, and super sensitive to noise — was paired with a highly agitated roommate who cried and yelled all her waking hours. I truly believe my family member was put there because she “wouldn’t mind” (e.g., she couldn’t speak so she couldn’t complain or report anything). I was told that I couldn’t choose her roommate. Sad to say, the only way this problem was solved was when a woman across the hall died, and I was able to get my loved one a bed in that room.
- DR. RISOTTO: Sadly, the (corporate, for-profit) nursing home industry in the United States is not about providing quality care but about extracting wealth from the residents. It’s truly disgusting.
- LLSHAP: You’ll find these conditions in non-profits as well.
- CULTUREISDEAS: Great article. I agree that everyone deserves a private room, even reducing shared rooms to two people isn’t good enough. I have had recent hospital stays and I was forced to stay in a shared room. It was horrible. I shouldn’t be able to hear every conversation someone has with their doctors/nurses/staff and they shouldn’t hear mine. I would take drastic measures to avoid living like that long term.
- JLAMOSTRO: I have spent much time surveying long-term accrediting facilities in Ontario in the last ten years. While not perfect and not at the single room goal are much closer than in Massachusetts, many facilities have many single rooms. One would be to examine the Canadian model of long-term care. During Covid in Ontario was a directive from the Ministry that facilities reduce the number of people in rooms to no more than two persons in a room. Every facility carried this directive out directly without any pushback to the Ministry (Department of Public Health). One private for-profit facility went from about 95 residents to 65. in Massachusetts, 31 plus facilities are pressing in court to prevent de-densification. Four, ostensibly without evidence, use the directive to reduce as an excuse to close, disrupting 300 residents and an equal number of employees. In Canada, providers are divided equally between public, private, and nonprofit, all of which function the same. Their deaths from Covid, while greater than their respective communities, were less than in the United States. Unlike the states, they continue to mask and test everyone. One surveyed nursing home failed in its infection control process. The local hospital took it over. In some cases, they didn’t even have to intervene since most of the local hospitals were involved in helping them out. Most facilities receive a budget, and staff increases are targeted to the staff rather than relying on dysfunctional reimbursement models in which we throw more money into them and get less out. The Ministry is respected because it works. We don’t hear the same bad-mouthing of government by the industry as we do in the state, nor the same dispersions cast on inspectors who come out and do their job. Also, they don’t mix acute or subacute rehabilitation with long-term care. The only reason that most nursing homes in the state do rehabilitation is to gain increased revenue and profit, not because they are committed to the rehabilitation process. On the behavioral health side, the Ministry has designated teams to go out contractually and provide behavioral health services. In addition, it directly funds behavioral specialists based on the behavioral population of a particular nursing home. Looking north may provide us with some ideas or comparisons that we could do. The system in Ontario deserves to be looked at by the state. Instead of remaking the wheel, we can see and improve a properly functioning system. They are not over bedded and have waiting lists. They are considering future facilities on a small home model. British Columbia has created one such facility, and even though it’s 120 beds, it is divided into distinct neighborhoods with different institutional fields and all private rooms. The state could learn a lot from examining the system, at least in Ontario, since the culture, nature, and people resemble our state.