Let’s start familiarizing policymakers about more difficult, more fundamental reforms
Most eldercare advocates in the United States are fully occupied pushing for effective allocations in the current reconciliation bill. This activity offers the opportunity to plant the seeds of Long-Term Services and Supports (LTSS) reforms that are not yet likely – but are worthy and important. So, yes, we need to argue strongly for Medicaid funds to increase pay and require benefits for direct care workers, and maybe we’ll even get a little funding for information infrastructure and some public education about long-term supports and services. In addition, let’s start familiarizing policymakers about more difficult, more fundamental LTSS reforms – just to start getting these included in the policy discussions. It’s said that an adult has to hear a new idea a dozen times before they start to make it their own!
What seeds should we be planting? I’d recommend serious work on financing for the long term, like the WISH Act. I’d recommend serious work on housing – let’s get affordable, disability-adapted, and services-connected housing widely available. This will require tackling restrictive housing regulations, building back better after catastrophes, and integrating supported senior housing into communities. I’d go for reforming congregate facilities of all sorts to be more home-like, smaller, and more often integrated into communities.
The categories that the United States uses for LTSS issues have created thoroughly dysfunctional silos, from the perspective of eldercare — medical care, behavioral care, custodial care, rehabilitation, community-based services, nursing homes, assisted living facilities, family care, personal care, homemakers, and so on. What we need is to live in communities where eldercare has been anticipated and planned, since most older adults end up needing most of the services now in silos. So, we could be planting the seed of the idea of generating a local entity that has data, authority, and some finances to set priorities for improvement, implement improvements, and monitor the performance of eldercare locally. At least, CMMI could sponsor a multi-year LTSS improvement trial in a couple dozen communities. Let’s see just how much better eldercare could be – more reliable, more equitable, more supportive of older adults and their families!
All members of ASA know that the United States has a wholly inadequate set of “arrangements” for supporting people who need long-term supports and services (LTSS), about half of whom are past retirement age. And they know the situation is on course to become dire within a decade, when so many in the Baby Boomer generation encounter the disabilities associated with aging.
Potential reforms abound—better pay and benefits for care workers, single point of entry to services, skilled physicians, integrated teams, comprehensive care planning and so on. But all of these reforms will be stymied if there’s no money, and the funding has to be sustained into the future—not just as a short-term fix.
To address this situation, Rep. Tom Suozzi (D-NY) has introduced a remarkable bill, the Well-Being Insurance for Seniors to be at Home (WISH) Act, which would create a social insurance trust fund to cover long periods of LTSS needs, thus making it possible for workers to plan responsibly for the risks of disability in old age.
How the WISH Act Would Benefit Everyone
The WISH Act has a great many good effects: reviving the long-term care insurance industry, reducing the need to spend down to Medicaid, saving state and federal Medicaid programs from dire financial consequences, providing a targeted supplement to Social Security at just the time the beneficiary needs it most, educating Americans about the need to plan for LTSS risks in old age, improving pay and benefits for caregivers, and more.
And it does all of this with a truly modest mandatory insurance contribution from wages—0.3 percent from workers, 0.3 percent from employers. Someone making $50,000 per year, about the median income in the country, would be paying $150 per year, or less than 50 cents per day.
THE WISH ACT REQUIRES A MODEST MANDATORY INSURANCE CONTRIBUTION FROM WAGES—0.3 PERCENT FROM WORKERS, 0.3 PERCENT FROM EMPLOYERS.
The trust fund would be separate from other trust funds and would require 40 quarters (10 years) of having earned the current equivalent of $5,600 per year to qualify for full benefits. Pro-rated benefits start at six quarters. The benefit would be enough to pay for a national average of about six hours of paid caregiving, or about $3,600 per month, paid in cash like Social Security.
To qualify for benefits, the worker must be older than full retirement age and either dependent in two or more Activities of Daily Living or sufficiently cognitively impaired to require nearly full-time supervision and assistance. This is the standard that most long-term care insurance plans use and is ensconced in the HIPAA regulations.
In addition, the person must have had this level of disability for a waiting period that depends upon their earnings record, while contributing to the WISH Trust Fund. Low-wage earners in the lower 40 percent of earnings would only wait one year, and those with higher earnings would add one month for each 1.25 percentiles above the 40th percentile.
For example, the median wage earner would wait 20 months, the 70th percentile person would wait three years, and the highest earners would wait five years. Once begun, the benefit is life-long. This strategy rests on two observations: first, the definition of catastrophic financial burden differs for workers with different opportunities to save, own homes, invest in insurance, and raise families to help; and second, the cost of LTSS does not differ much for poor or wealthy people.
IT IS REALLY THE LONG-RANGE PLAN FOR ELDERCARE FOR US ALL.
The upshot when fully operational is that LTSS would have an infusion of payouts that total around $100 billion per year (in current dollars). The bill includes substantial education about LTSS risks and costs, in addition to the obvious education of having money taken from your paycheck each payday. Many people would learn to plan ahead to protect their ability to manage during disability in old age, without bankrupting their families. Long-term care insurance providers will fill in the waiting period and the additional costs of LTSS beyond the WISH benefit with much more affordable and flexible offerings.
Let’s Not Repeat History, and Instead Take Action on the WISH Act
Many ASA members will remember the push for the CLASS Act, which was part of the Affordable Care Act but could not be implemented because the finances could not work with a voluntary enrollment. The need for something to address LTSS costs has persisted, and WISH is a thoroughly responsible response!
It does not address the urgent needs or the short-term reforms we need in eldercare, and it does not help current retirees or younger people living with disabilities (until their own old age, provided they’ve worked a little over some years, which is true of most persons living with disabilities in working age). It is really the long-range plan for eldercare for us all. If it had been enacted in 1990, we would not be looking at having enormous numbers of elders unable to afford housing, food and medical care within a decade.
Admittedly, we are late to act, but it’s time to stop pretending that we mostly won’t live into old age, or that most of us won’t need LTSS. The opportunity to grow old was still uncommon in the middle of the last century, when Medicare and Medicaid came into being. Having that longevity opportunity now, for most Americans, is a remarkable achievement. But it requires some changes in how we manage to pay for our needs, and the WISH Act would be a major part of that reform.
To get the WISH Act passed will require substantial public interest and support. Call your Congressman and Senator. Explain the importance of this Act. Ask them to co-sponsor. Let’s stop kicking that cursed can down the road!
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.
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.
Within the next few weeks, the U.S. will experience a very large number of deaths from Covid-19. The evidence is now plain that these will mostly be persons over 60 years old, and many will be persons past 80 and persons already living with disabilities and illnesses associated with aging. Every one of us in that group should be making decisions about the desirability of hospitalization and ventilator support, yet no one is talking about making Covid-19 advance care plans. If a person chooses to turn down the hospital setting or the ICU care, whether for spiritual, pragmatic, or altruistic reasons, that person needs to be confident that symptom management for air hunger will be available. And our funeral homes, crematoria, and cemeteries need to be ready. Furthermore, separate from all those issues, the nation needs to be developing serologic testing for immunity, so we can tell who is immune and therefore able to return to work and visiting without the risk of infection from or spread of this virus.
Why are we not thinking ahead and preparing for these issues? This is the same problem we had in January, when it was already clear that this virus was so contagious that it would circle the globe. We are already way behind in dealing with today’s issues. Rather than being in the same position on near-future issues, we could deliberately get out ahead on these.
Every nursing home and assisted living facility should immediately move to get advance care plans for nearly all of their residents. These plans should be specific to the threat of Covid-19 in the context of the particular resident’s situation. Covid-19 in elderly and seriously ill persons mostly kills by respiratory failure, progressing over a few hours or days from a sensation of breathlessness to air hunger and suffocation. Only a minority of elderly persons who are put on ventilators survive to leave the hospital, and most have lost more functional ability from the deconditioning and struggle. Elders already living with eventually fatal illnesses and their families might make decisions to avoid all this and accept that a serious case of Covid-19 is very likely the end of their lives.
But someone has to ask them. Someone has to inform the elderly person or his or her surrogate decisionmakers and help them to understand their situation, and then to document their decisions, especially if they decide to go against the conventional pattern of going to the hospital or using a ventilator. These discussions are difficult, and the clinicians involved may find VitalTalk.com to be helpful. Families might resort to TheConversationProject.org to find the language needed. Leaders on television need to be encouraging these discussions and decisions.
Nursing home and assisted living residents are at particular risk because we really have no way to prevent outbreaks in facilities. This virus has about a 6-day incubation period in which the infected person has no symptoms but is already capable of spreading the virus. Someone is bound to bring the virus into some facilities unknowingly. With so many residents who cannot cooperate fully with isolation due to dementia or delirium, the virus is very likely to spread. So, a focus on advance care planning for residents of nursing homes and assisted living centers is urgent and is also able to be implemented. Still, half of our population of seriously ill or disabled elderly people are not in facilities; they are being cared for at home by family. So, families need to have the same conversations and make these decisions.
One painful aspect of these discussions is that hospitalization and ventilator use may become unavailable to these elderly or ill persons if our facilities become overwhelmed. We don’t need to dwell on this aspect, of course, but we do need to acknowledge that a decision to pursue fully aggressive medical treatment depends upon those elements continuing to be available.
In addition, a person whose care plan is to stay on site and not to use the hospital, or who has no option to get hospitalization, needs to be able to rely upon good symptom management for respiratory distress. This requires supplementing oxygen and providing morphine (or another opioid). Many nursing homes and assisted living centers will have had little experience with supporting people dying with respiratory failure as the cause. Hospice and palliative care practitioners will have the needed experience of titrating medication to relieve air hunger while leaving the possibilities open that the person might survive, but they need morphine and personal protective equipment. Even so, they will be stretched to serve suddenly large numbers of infectious people dying of respiratory failure at home and in facilities. These clinicians need to be in the list of high priority providers and their services need to be acknowledged and valued by leadership.
Morticians, funeral directors, crematoria, and cemeteries will need to be prepared for a surge of deaths, including many out of the hospital. Again, leaders should acknowledge and value these services and help to make arrangements for their workforce and supplies.
Finally, we will soon have a substantial number of people who have had their Covid-19 infection and recovered. Nearly all will have rid themselves of the virus within a month. But most will be uncertain as to whether they are immune because they never had a definitive diagnostic test, either because their illness was mild or because the testing was unavailable. Persons who are immune become very valuable to the public. They can return to work, they can visit sick people, they can provide care – indeed, they can be the vanguard of a return toward normal. But they need to know that they are immune, as do their employers, patients, and family members. This calls for development of and deployment of serologic testing, so we can know who is still susceptible and who is immune. We don’t yet know how long immunity will last, and the evidence in related viruses is for it waning over a year or two. But in the current year, these people are especially valuable since they cannot be infected and cannot spread the virus (with ordinary hygiene). We need leaders to be calling for development of this testing and making plans for deploying it – perhaps first to health care workers.
The nation is watching the experience in Italy with some horror – but it is over there and not here. We are not actually dealing with the likelihood that some aspects of their experience will be here, in at least some parts of the nation, in the next months. Let’s get over our reticence. We will have a great many deaths. Many will be in nursing homes and assisted living centers and most will be among people who are growing old. When a person is likely to die if he or she gets this disease, we should at least be clear as to what treatment the person wants. If the person is dying without ventilator support, he or she should have treatment to prevent feeling suffocation. Bodies should be able to be removed and buried or cremated promptly. And we should be ready to test for immunity within the next month.
These things are foreseeable. It’s time for leaders to talk and to put plans in place. Let’s get ahead of this pandemic on these issues.
The Ways & Means Committee of the U.S. House of Representatives heard testimony on “Caring for Aging Americans” on November 14. Dr. Joanne Lynn participated as an expert witness. A video of the hearing can be viewed at https://www.youtube.com/watch?v=20GgbnOMIn4.
Read Dr. Lynn’s comprehensive written testimony by clicking below.