NASEM Nursing Homes Report Could Spark Debate

The NASEM report on nursing homes could be the centerpiece of a far-reaching public information effort aimed to get LTSS issues into political campaigns.

Soon, the National Academies of Sciences, Engineering, and Medicine (NASEM) will issue their report on the future of nursing homes. If advocates for long-term care reforms sit back and observe, this is likely to join a lot of other responsible, thoughtful, evidence-based writings on shelves in libraries.  But it’s possible that we could make it one of the centerpieces of a broad-reaching public information effort aimed at making long-term supportive services (LTSS) a serious part of political campaigns upcoming.

Sure – this report will focus only on nursing homes, but that can be a very useful fulcrum for examining the overall arrangements for supporting how most of us will live with serious disability in old age.  We could take the recent article by McGarry and Grabowski (“Nursing Homes and COVID-19: A Crisis on Top of a Crisis”) as indicative of the sort of recommendations likely to come with the Academies report.  That paper listed ten reforms:

  1. Realigning Medicare and Medicaid (to make all payments equal the costs of care)
  2. Higher wages for direct care staff
  3. Minimum staffing requirements
  4. Increase financial and ownership transparency
  5. Regulatory reform (to focus on major risks and provide collaborative help to improve)
  6. Increase quality transparency (to include what residents and families care most about)
  7. Increase presence of clinicians onsite
  8. Alternative models of nursing home care (small homes)
  9. Increase use of home- and community-based services (HCBS)
  10. Long-term care financing (perhaps expanding Medicare or creating a new federal LTC benefit)

Let’s assume for the moment that the National Academy report makes basically these recommendations. I’d contend that they are basically good ideas. Two questions arise: (1) How will they get effectuated? And (2) What more needs to be on the policy agenda? 

Taking the second question first – one very important element that is missing is the context of long-term care – the community’s housing possibilities, the availability of direct care workers for home care, the flexibility of local employers to enable family caregiving, and so on.  Nursing home utilization and patterns of practice are profoundly entwined with the rest of the local care arrangements.  The report should call for reforms to extend beyond merely advocating for HCBS and should have taken into account the rest of the arrangements that affect long-term care. I’d suggest advocating for a substantial CMS demo on excellence in moderate-sized geographic populations. Let’s learn what can really work well for all of eldercare.

Now, the first question – what would make the public and its leadership take notice?  The proclivity of Americans to dodge questions of disability and old age is all too obvious.  Perhaps some of this head-in-the-sand behavior arises from a sense that there’s nothing to do – long-term care is tragic and troubling but also overwhelming.  To counter this sentiment, we need concrete actionable steps.  We need to get behind some specific fixes that are both understandable and motivating. Try these slogans:

“Make it possible to pay for your own old age” (and tie that to financing changes);

“A home for every elder” (and tie that to making homelessness in old age unacceptable);

“Long Term Care = LTC, Lots of Tender Caring” (and hook that to staffing levels);

“Fair Wage for Hard Work” (tied to a living wage for direct care workers).

How about a bumper sticker? “LT$$ – financing for our old age.” The WISH Act (HR 4289) could help with financing.

I’m sure readers can suggest more clever tag lines, but we need to pull them together and slam the social media with messages that push policy agendas and call on political leaders to take stands. 

Could you be ready to help make a Twitter and Facebook firestorm when the National Academy report comes out? And to follow up with emails to Congress and to heads of influential organizations?

Fragile Lives and COVID-19 Deaths in Nursing Homes

[Originally published on July 8, 2020]

By Joanne Lynn, MD

A colleague once sent me an obituary notice from a local paper in Arkansas which said, after noting that the 94-year-old woman had gone to live with Jesus, that she “had been troubled in her later years with heart problems and succumbed to the complications of a cold.” How true.  That characterizes how many of us will come to the end of life – we’ll be living with very little reserve and even a small thing will be enough to lead to death.  This is like walking a tightrope and waiting for a stumble or a breeze.  One might manage to keep going for a long time, or one might trip and be gone tomorrow.

The tenuous hold on life that this scenario calls to mind is commonplace among residents in nursing homes.  As an attending physician in nursing homes, I was often perplexed as to how to document a death certificate.  In so many cases, there are so many causes, the conjunction of which is what actually caused the death at this time in this way.  So, of course, COVID-19 will be one of the causes of death for many infected residents in nursing homes, and in many situations, that will be counted as “the” cause of death.

But it is relevant that the person was living in a fragile balance with life before COVID-19.  Life expectancy for nursing home residents varies among facilities and among regions of the country, but the median is mostly under one year.  It is still a loss to the human community to encounter a cause of death some months earlier than would otherwise have happened, but it is worth knowing that the foreshortening of life for nursing home residents is mostly measured in months. Social Security, for example, expects that deaths from COVID-19 will have an almost negligible effect upon their payouts for old age benefits.

The newsworthy tragedy arises with the sudden deaths of a much larger than usual number of residents of a particular facility.  Consider, for example, a nursing home with 240 long-term care residents, where the usual month will have around 20 deaths. In a COVID-19 outbreak in a nursing home that has reasonable staffing and support, it appears that about 20% die with COVID-19 over two months. That would yield 48 COVID-related deaths in that time. Remember, also, that another group of about the same size will have been very sick, whether on-site or in the hospital, which adds to the caregiving and grieving on the part of the staff. So, the situation quickly becomes dire.

However, it is important to consider a statistical perspective on this situation. Assume that this outbreak foreshortened the lives of half of these (and the other half would have died in these two months without COVID-19).  That would mean ½ x 48 = 24 excess deaths over two months. Thus, in two months, the facility would have had:

24 (who died early with COVID-19)

+ 24 (who would have died in about this time frame from their underlying illnesses, but they also had COVID-19)

+ (40-24=16, being those who died without COVID-19 playing a part, which is the background rate minus those attributed to COVID-19 but who would have died in this time frame)

= 64 deaths over two months.

That would be enough to be troubling to the staff and families, and probably to get a hostile story in the local paper.  The judgement is subtly different to realize that 40 deaths were expected before COVID-19.  Over the course of a whole year, the mortality of the residents at the start of 2020 might well be very nearly the same as expected, though 24 died more than a month or two early from COVID-19 infection.

Foreshortening lives by a few months is a real harm and would be better to have been avoided, of course, but it is different from the deaths of people who otherwise were healthy and would have lived for many years. I admit that it is very hard to find the language that acknowledges the pain and loss from deaths of a large number of nursing home residents in a short time while also recognizing that these were somewhat more tolerable than similar numbers of deaths of otherwise healthy people with longer lives ahead of them. Indeed, our culture has a difficult time finding the language or metaphors for death and dying.  Whether one adopts a stance of confidence in the afterlife, gratitude for the necessarily finite gift of life, or fury at that finitude, each of us will die.  Nursing home residents are mostly in a fragile balance with continued life, with multiple organs having little reserve and multiple identifiable chronic conditions.  We need to find a way to acknowledge their nearness to dying without discounting the merits of making the life that is left as meaningful and comfortable as possible.

Consider that the death certificate for the 94-year-old woman who “succumbed to the complications of a cold” will give her cause of death as her heart conditions, even though it was the upper respiratory infection that immediately led to her death.  In the case of COVID-19 affecting nursing home residents, the multiple actual causes of death will often include something like “advanced age with a tendency to a dysfunctional inflammatory response, multiple organ systems with greatly reduced function and no reserves, cognitive dysfunctions that yield self-care disabilities, and a last blow from infection by COVID-19.”  The death certificate and the tally of deaths on the television news will say, “death from COVID-19 infection.” We need to find a way to maintain awareness of the proportion of COVID-19 deaths that afflict persons who were living “in the shadow of death” – while still honoring, valuing, and supporting their opportunities to live.

Should Anyone Live in a Nursing Home?

[Originally published on July 13, 2020]

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.