By Joanne Lynn, MD
Nursing homes are so widely shunned as being thoroughly undesirable that many advocates have proffered that they should be shuttered, and all care of disabled persons should be “in the community” and not in facilities. That refrain is growing with the obvious risks of COVID-19.
I believe that we need to take this crisis as an opportunity to revise how we deal with long-term disability and the need for services and supports by persons who cannot manage daily living for themselves. Who makes up the populations that probably should have nursing homes available? I think there are five general categories for adults (I’ll leave children to others who have relevant experience):
(1) Adults discharged from hospitals who need a short period of around-the-clock support and therapy in order to be capable of going home (or to another community setting), often in part because their home situation does not provide enough appropriate and reliable support;
(2) Severely brain-damaged persons, e.g., from severe dementia, strokes, or hypoxia, who are unaware of their surroundings, and lack available family or loved ones to assist with in-home care, even though most will still be capable of suffering from adverse symptoms;
(3) People who need a great deal of personal assistance or supervision (for example, around-the-clock paid care) and who do not find it very important to live independently in the community rather than in a home-like and reliable congregate setting;
(4) Elderly people with substantial care needs who prefer congregate living and either can pay for it privately or the costs to public funds are lower in this setting; and
(5) People who need an in-patient setting while dying. Inpatient hospice should be available for serving this group. It is a serious shortcoming of the present arrangements that dying elders are often sent to skilled nursing for “rehab” because Medicare covers that service, when what they really needed was inpatient hospice care for a short time, mostly less than a month.
What sort of facility environment is ideal for each of these populations? We might especially consider the post-hospital and unaware categories (1 and 2 above), in contrast to persons who need long-term supports due to substantial disabilities (3 and 4 above). For those first two groups, the nursing facility can be set up to feel rather like a hospital – let’s call it “post-hospital.” The post-hospital resident will not stay more than a few weeks and does not expect to make friends. The severely unaware resident may stay for years, but still will not be able to make any personal connections. The staff will care about these residents, but a less home-like setting is not likely to have a negative impact on the residents.
In contrast, the usual elderly person living with serious disabilities (#3 and 4 above) needs an environment that is set up for living – comfortable, home-like, conducive to conviviality, and responsive to personal preferences and priorities. This really should become the resident’s home. The care plan needs to be anchored in the resident’s situation and preferences, and it needs to be flexible to accommodate communal living, just as it is in family living. In general, these facilities need to be set up to be, or to seem to be, relatively small groups where staff and residents get to know one another and collaborate.
The hospice in-patient environment needs to be home-like and comfortable for visiting, but it does not need to try to create long-term relationships, create a home or have shared activities like a long-term residence should.
Whatever images you fill in to customize your vision of ideal long-term care facilities, you’ll agree that current nursing homes mostly fall far short. Not only might they be regimented, understaffed, and unresponsive; but with COVID-19, they have become very nearly prisons without visitors. For more than three months, most nursing homes have barred nearly all family and friends – and even ombudspersons and consultant physicians. Residents have been restricted to their rooms and, if the facility has all the recommended personal protective equipment, the residents have not seen a smile or felt a human touch for all that time. Neither the residents nor their families were asked about this plan.
Imagining myself as a nursing home resident with profound physical disabilities but substantial awareness, I would prefer to take my chances with COVID-19, prudently, in order to visit with family, to experience group activities, and to hold a hand. I don’t know how many residents would feel as I do, if they were aware of their likely future course with “protection” and with more “openness.” But I do know that none were asked, and none are being asked, about the merits of these policies. I’d consider this to be age-ist in a most repugnant way. Public health has the authority to constrain self-determination for a while, but surely not for so long. We’ve been willing to impose solitary confinement on 1.3 million nursing home residents without input from them or from those who love them – for about 4 months, which is a large proportion of the rest of their lives.
We must not allow the experience of COVID-19 to mean that all facility-based long-term care becomes as sterile as hospitals often must be. Directions that would be more helpful and appealing would include having much smaller settings, so that outbreaks of COVID-19 or future infections would be easier to contain. Staff should be paid enough and should have career satisfactions so that they can work in one setting and continue to support and befriend a set of residents over time. Facilities should be ready to deal with necessary isolation and potential expansion to help serve their communities. Families, friends, and community groups should be welcome, except for short periods when community infection risks are too high. All residents should have comprehensive care plans, including how to address worsening health status. Medicaid rates must be high enough to support good care and fair wages. Facilities that rely on Medicare or Medicaid payments should be required to spend 85% of their revenues in direct patient care, parallel to the “medical loss ratio” for medical care insurers.
It’s time to rethink facility-based long-term care – its aims, its financing, its place in the society. Let’s be ready for the opportunities for reforms that might be upcoming.
Thanks for your thoughtful comments. Any reform along the lines you are proposing requires, in my opinion, that long-term care be moved to the Medicare program, with a “default” to home and community-based care in line with the ADA and Olmstead. (I believe you have proposed something like that in the past). Instead of being means-tested through Medicaid and subject to deficient care hours in almost every state, there would then be a federal mandate to provide all needed care.
Nursing homes would also be financed through Medicare (except for room and board), with minimal cost-sharing, but used only for those who cannot be safely cared for at home or who, as you say, prefer a congregate setting. By removing short-term rehab patients and those for whom, as you point out, can be placed in a hospital setting, and by expanding HCBS, the necessary space would be freed up to make nursing facilities into a true home-like environments. This would absolutely require private rooms for all residents, the most important step in my opinion. It would also require guaranteed access to information and entertainment through free internet services and cable TV, true necessities for the elderly.
Finally, where HCBS recipients would have a personal care aide to help with ADLs, nursing home residents will need more than just an overworked CNA checking in on them from time to time. Or being otherwise sent to a TV room or to sit outside a nurses station while waiting for the next activity or meal, to avoid having to be re-bedded for safety. Personal care assistants should be used to supplement CNAs to provide more person-centered care, like finding a preferred TV channel, helping to make a phone call to relatives, assisting with a computer, getting a snack, visiting the chapel, or taking a walk in the garden. The aide would be a consistent presence and could develop a relationship with the resident by learning her preferences and idiosyncrasies. Even a few hours a day could mean a great deal.
Henry Moss PhD
Thank you. I hope you’ll pass these ideas along to your political leaders! They need some pressure.