What to Do about Nursing Homes?

 Posted by on August 7, 2020  2 Responses »  Tagged with: , , , , ,
Aug 072020
 

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

Eldercare has long been the stepchild of society’s pursuit of well-being – shunned by medical care and starved by social arrangements. A century ago, this did not matter much – people did not live so long, families were large and mostly on farms where taking in a relative was not so hard, and medical care did not have much to offer. The situation has changed, but the social arrangements have not kept up. COVID-19 has illuminated a number of the shortcomings. There will be a few short windows of opportunity to change things, but the advocates need to be ready with workable proposals. This blog aims to accumulate proposals that seem worthwhile for use by whoever wants to use them. Please add your comments and suggestions in the comments at the end!

Action Steps

  1. Everywhere that we see an opportunity, encourage broad public and leadership awareness of the high likelihood that each American will live with serious disability for a substantial period and that we are exceedingly poorly prepared to enable late life to be comfortable and meaningful. Write letters to editors, op-eds, and blogs. Call in to radio shows. Ask questions of candidates.
  2. Push to revise how we finance supportive care for elders. Allow pre-tax payment for long-term care insurance. Call for a new social insurance to cover “catastrophic” levels of costs from needing long periods of long-term care. Call for Medicare’s capitated plans (Medicare Advantage) to cover an understandable standard set of supportive services for defined situations.
  3. Generate data that will enable communities to understand how well their community is performing with regard to eldercare and that can monitor efforts to improve. We need visible data about the availability of home-delivered food, adapted housing and transportation, direct service workers, medical care at home, and the quality and reliability of personal care.
  4. Enable some local authority to monitor and manage eldercare on behalf of the community – could be the responsibility of the Area Agency on Aging, the public health office, a coalition of concerned entities, county government, or another approach – – but somehow, we need to create a locus of responsibility for improving performance.
  5. Strategize to reduce reliance on hospitals and nursing homes. They are essential in some circumstances, but many more people could be treated at home or in an outpatient setting, and many more people could go straight home from a hospital stay, IF the community had readily available and fully adequate supports for disabled people living in the community. So – advocate for more adequate funding for the Older Americans Act, which supports meals, care coordination, Area Agencies on Aging, etc. Advocate for more outreach to prevent abuse and neglect. Learn what is not available in your own community and push for that.
  6. Support family caregiving. Employers could seek to be flexible in leave, adjusted hours, and working from home. Respite care could be made available. Family caregivers could be paid in some circumstances and could get social security credits and Obamacare health insurance coverage.
  7. Improve the working conditions for direct care workers. Require a living wage, whether working in facilities or homes. Require conventional workers benefits. Ensure that they have the personal protective equipment and COVID-19 testing (or whatever else arises) that they need. Build career ladders with certifications and opportunities to advance.
  8. Push our organizations to be strong supports – AARP, Alzheimers Association, caregiver groups, professional organizations, provider organizations, political organizations, etc.
  9. Send in suggested questions for televised debates of candidates. Tweet to reporters.
  10. Express outrage over the forced isolation (solitary confinement!) of nursing home residents without even asking them about their tolerance for the risks, or enabling survivors of the infection to be more liberated from restrictions.
  11. Highlight the need for all elders to have comprehensive care planning, including advance care planning for medical care. Nursing homes and assisted living centers should have nearly 100% compliance and failing to undertake this work should be a cause for penalties.
  12. Study and respond to the evident disproportionate impact of COVID-19 on nursing home staff and residents who are African-American, Latinx, or immigrants.
  13. Encourage very limited liability protections for alleged shortcomings arising from COVID-19. The country should avoid a plague of lawsuits, but whatever protections are put in place should be limited in time and scope.

I’ve become quite fond of the hopefulness of this quotation – and a devotee of having good ideas “lying around.” So – let’s get behind them and push them to be politically inevitable!

“Only a crisis – actual or perceived – produces real change. When that crisis occurs, the actions that are taken depend on the ideas that are lying around. That, I believe, is our basic function: to develop alternatives to existing policies, to keep them alive and available until the politically impossible becomes the politically inevitable.” Milton Friedman

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

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Fragile Lives and COVID-19 Deaths in Nursing Homes

 Posted by on July 8, 2020  4 Responses »  Tagged with: , ,
Jul 082020
 
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)

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.

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Preparing Eldercare for a Surge of Covid-19 Deaths

 Posted by on March 24, 2020  2 Responses »  Tagged with: , , ,
Mar 242020
 
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)
Dr. Joanne Lynn

By Joanne Lynn

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.

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Workable Financing of Eldercare: The Window is Closing

 Posted by on September 18, 2019  1 Response »  Tagged with: , , , , ,
Sep 182019
 
Portrait of Joanne Lynn
Dr. Joanne Lynn, MD

By Joanne Lynn

Within just a dozen years, the U.S. will have nearly double the current number of frail and disabled elderly people needing daily supportive services. Look around! What is being done to prepare for this expectable increase? Already most cities have long waiting lists for home-delivered meals, and no city in the U.S. has adequate affordable disability-adapted housing. We have all sorts of improvements “proven” to work in research or demonstrations, but we have no long-term plan. A recent Health Affairs article showed that most of the people who retired from “middle class” jobs will be unable to afford housing and health care within a decade.

America mostly deals with issues no more than a few years into the future. But private savings for supportive services in old age requires planning more than 30 years ahead – the person at age 50 has to plan for the risks at age 80 and beyond. And the nation has no real plan for how to arrange savings, taxes, and services to keep frail and disabled elders having food, shelter, and personal care. Indeed, even the Presidential candidates don’t debate these issues!

Delaying action until the suffering is so widespread and severe that taxes rise to support more of what is already haphazard and costly “care” would severely weaken the economy and curtail needed investments in other areas, such as childhood development and transportation infrastructure.

One clever proposal calls for federal coverage of long-term care after a period of need that depends upon the person’s lifetime earnings. If low-wage earners had to cover a year and high-wage earners had to cover 5 years, the cost would be less than 1% added to the Medicare tax. And we’d suddenly have long-term-care insurance vehicles that are affordable and widely purchased.

Well-proven improvements in medical care, preventive services, housing, and food delivery are easy to identify – they just need to be demanded and implemented.

In an editorial in the Journal of the American Geriatrics Society, I have called on all of us who serve frail and disabled elderly people to speak up – to push civic leaders for urgent planning and policy improvements. Click here to read the editorial – and then take action! Find a few other people willing to speak up! Get organizations to push for attention to these issues! It’s our future, claim it and make it better! Let us know how to help.

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What We Know to Do Won’t Be Done and Wouldn’t be Enough! (But We Could Make Eldercare Work!)

 Posted by on October 18, 2018  No Responses »  Tagged with: , , , ,
Oct 182018
 
Portrait of Dr. Joanne Lynn
Dr. Joanne Lynn, MD

by Joanne Lynn

Our aging society is a mountain to be moved – a large collective challenge we have to tackle together. Problem is, right now we’re using shovels when bulldozers would hardly do the job.

The mountain is reforming how eldercare is delivered and funded. We’ve allowed so many forces to converge over the years in a payment-driven, provider-centric framework, that we’ve managed to create a grim future for the last phase of aging. Most of us will have at least a couple years of self-care disability in the last years of life, no matter how healthy our life styles may become. While “healthy aging” is a terrific idea, it is one that eventually fails in most lives, simply because some form of frailty will still disable us, for a long time, and presage death.

Families are smaller, older, and more dispersed – there is often simply no one able to provide free care at home. Retirees have ever lower savings and insurance, overwhelmingly too little to pay for an expectable range of personal care. Medicaid is stretching state budgets and many more are set to spend down to eligibility. Communities have no entity actively monitoring and managing the performance of their unplanned and poorly coordinated eldercare arrangements. Serious illnesses and disability in old age is the dominant cause of family impoverishment and bankruptcy. Paying current per capita costs by raising taxes is not plausible by the mid-2030s [National Research Council. 2012. Aging and the Macroeconomy: Long-Term Implications of an Older Population. Washington, DC: The National Academies Press. https://doi.org/10.17226/13465] – we will find ourselves balancing crippling the economy with abandoning dependent patients. Being able to support an expansion of public services and supports to accommodate more elders in need depends upon a thriving economy, and that depends upon highly productive young adults. Yet we now have half of children born into poverty and we tolerate high rates of young adults being unprepared for productive work.

Many issues compete for our attention. Why bother with dealing with old people? Two pragmatic reasons: old people and their children vote, a fact that makes it unlikely that elder care issues will be abandoned; and all of us will eventually join that cohort, a fact that makes it everyone’s issue. Furthermore, we really are part of a community, and we really won’t be able to ignore a retired school teacher’s homelessness, the gnawing hunger and painful isolation of a former jazz musician. Our better natures will require making basic needs available on a reliable basis.

In 2016, our team at Altarum worked with other national partners to push for caregiver planks in state and national party platforms — 11 states included a plank as well as having the issues show up for the first time in both Democratic and Republican national platforms. [Scribner, B. et al. (2017). Creating A Nationwide Nonpartisan Initiative for Family Caregivers in Political Party Platforms. J Am Geriatr Soc, 65: 1126-1131. doi:10.1111/jgs.14814] A key finding of voter polling work in this project was that voters of all political persuasions are energized and passionate equally about the needs of caregivers and supports that ought to be made available to families.

But how? The costs look to be overwhelming. The effects upon the economy and the opportunities for younger persons look to be disastrous. It is so much easier to duck and run – answer to the immediate issue but make no fundamental changes. There’s a better way.
Our arrangements for medical care assumed that people are mostly healthy and on their own, and from time to time they need medical care to return them to health. In frail old age, the question is not mostly to “fix it” but to “live well with it.” In this setting, continuity, care planning, and caregiver support matter – three elements that are mostly missing in our current health care. We need to dramatically reorganize health care to require these elements as essential in elder care.

What happens to support frail elders depends critically upon the arrangements for support in their geographic community. Is disability-adapted housing available and affordable? Can you get appealing and affordable home-delivered food? Is there an adequate workforce skilled in handling personal care at home, even for persons with dementia and persons who are difficult to serve? Do the dominant employers provide flexibility for family and volunteer caregivers? Are there volunteers organized to fill in most “instrumental activities of daily living,” such as minor home repairs and delivering food? Perhaps most important, is there an entity with the responsibility to address these issues – to monitor performance in that community and take steps to improve it?

With many communities doing this, communities would be able to benchmark performance and manage the arrangements in their community. Lots of independent businesses would still thrive, but collective action would also be possible and practices that distort service availability or quality could be constrained. Altarum developed a Financial Forecasting Tool [https://medicaring.org/2018/07/24/mcforecasting/] that can help communities understand the resources they already have — medical and health services, social services, community volunteer organizations, and others — and quantify the possible savings a reformed system of eldercare can produce. There is a lot of money being spent in the period when elderly persons live with serious disabilities, but it is not being used in planned, efficient, person-centered ways.

This is a more fundamental reform than just moving medical care to the home or providing coordinated post-hospital care, or whatever combination of currently “evidence-based” improvements you prefer. This is making some part of elder care into a public concern, managed at the community level. It is not just for dual-eligible elders, it is not just for persons who run up high bills, and it is not just for persons with particular diagnoses. This reform is for us all. We’ve called it MediCaring Communities. [https://medicaring.org/book-online/]

We must work on financing and service delivery at the same time. If we started now to build private savings for long-term care (through savings accounts or insurance), we’d have capital to stimulate the economy as well as less demand for public funding in fifteen years. Having a federal back-stop on long term care costs would create a vibrant marketplace for long-term care insurance. Professionalizing assistance with personal and supportive care would create better paying jobs in the care sector and these professional caregivers would be able to build a new middle class around eldercare professions, thus boosting, rather than draining, local tax bases. Planning for the whole populace also requires substantial reinvestment in ensuring that our children come into adulthood as highly productive citizens.

This is our opportunity time. If we buckle down and enable substantial innovation in some counties and cities, we’d learn what’s possible and other counties and cities would follow suit. We urgently need an era of profound and far-reaching innovation and learning. What can you do make it possible to overthrow the status quo? Be in touch with one another and with us – let’s dramatically increase the pace of improvement and build an elder care system that is highly reliable and efficient and build it in time to accommodate the rising numbers of disabled and frail elders.

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Pick up the PACE to a New World of Eldercare

 Posted by on August 21, 2018  1 Response »  Tagged with: , , , , ,
Aug 212018
 
Portrait of Christine Stanik
Christine Stanik

By Anne Montgomery, Sarah Slocum and Christine Stanik

What do you need to know in order to remain in your own home as the years advance? Where can you turn for good, reliable services in a costly, chaotic, constantly shifting health care system? One possible answer is PACE (the Program of All-inclusive Care for the Elderly) program. PACE is widely acknowledged to be the “gold standard” of comprehensive geriatric care – which is not just medical care, but also long-term services and supports (LTSS).

But PACE is not yet available in 19 states, and currently has limited capacity, serving about 45,000 beneficiaries (almost entirely elderly persons who are enrolled in both Medicare and Medicaid). Beyond the dually-eligible population, how can we expand PACE to a burgeoning population of Medicare-only beneficiaries, many of whom need some LTSS, and who would very much like to avoid spending down to Medicaid level?

Medicare Advantage

One area of likely growth for PACE is to partner with Medicare Advantage (MA) managed care plans. Recently, the Centers for Medicare and Medicaid Services (CMS) published guidance allowing MA plans to expand the range of supplemental benefits they may wish to offer to include a range of LTSS. MA plans could contract with PACE (or another service organization), to furnish PACE Center attendance and transportation to and from home; meals; and other services to help enrollees avoid hospitalization, emergency department visits, and maintain stability even during periods of decline. For working family caregivers, PACE can be a huge help, serving as a source of reliable respite. And increasingly, evidence is accumulating that such arrangements can reduce in-patient hospitalization and ED costs, and delay or prevent long-stay placement in nursing homes.

To serve current community needs and prepare for larger offerings through MA contracting, some PACE organizations provide services to non-PACE enrollees as a private pay offering. PACE plans have varying levels of experience providing a la carte or service packages to non-PACE enrollees. At the Program to Improve Eldercare, we are developing policy pathways and practical tools to help PACE organizations and MA plans prepare to work together to better serve frail elders. First we need to address the daunting Part D affordability barrier that faces Medicare beneficiaries wishing to enroll in PACE that Sonja Love Felton described in a previous blog. Fortunately, CMS is aware of the problem, and may be open to a system-wide solution. We invite you to encourage them (contact us for guidance at [email protected]).

Medicaid

Another set of challenges to accessing PACE for some Medicare beneficiaries is that they lack the personal resources to pay out of pocket for LTSS. Many in this group have just slightly more income than their state’s Medicaid income eligibility threshold permits. If their monthly medical expenses are high, and this can be documented, some of these beneficiaries can take advantage of the so-called “medically needy spend down” option 33 states have. However, in most states, this option requires a large monthly deductible leaving only small amount of income (as low as $400 per month in some states) to pay for all living expenses. The rest face the “Medicaid cliff” –with an absolute cut off level, usually 300% of the SSI limit, which is $2250 in 2018 and cannot qualify for Medicaid if they are one dollar over the limit. The predictable result is that many families wind up impoverishing themselves to gain access to LTSS – which may only be available in the highest-cost setting – a nursing home. To solve these dilemmas, the Program to Improve Eldercare is working with Medicaid experts to identify practical, workable policy solutions that can be readily implemented, and which can make PACE LTSS services available to many more Medicare beneficiaries. States will ultimately save Medicaid dollars and avoid premature nursing home placement by allowing people to avail themselves instead of lower cost PACE services.

In the course of analyzing these challenges, we have been speaking with Michigan families who generously agreed to tell us their stories. Michigan is a state with an absolute cut-off for Medicaid – if your income is more than $2250 per month, you cannot qualify, even if your medical costs and personal care needs alone are $3000 per month. We relied on family caregivers to speak for elders they are supporting. They provided us insights into what happens to families who find PACE attractive, but who do not qualify for Medicaid and do not think they can afford to pay for long-term services and supports (LTSS) out of pocket. To protect the privacy of those interviewed, we have changed the names below, and details from several individuals are combined in the two composite narratives.

Tom’s Story

We spoke with Tom less than six months after he had contacted PACE on behalf of his octogenarian mother. Because she was becoming increasingly frail and unable to live on her own, Tom moved his mother into his own home. Not yet at retirement age, he soon realized that the demands of caring for her were at odds with a job that kept him away from home for up to 10 hours a day. Tom called PACE to express concern for his mother’s safety when she was home alone, noting that her physical condition was likely to degenerate over time due to several worsening health conditions.

Although Tom and the PACE program concurred that enrolling his mother would be the right solution to an otherwise hazardous situation, the cost of PACE, more than $4000 per month, put it beyond their reach. This left Tom to piece together services as best he could. However, eventually his mother had a fall when he was away from home, breaking her hip. At the time of the follow-up interview, she was convalescing in a nursing home, and Tom was desperately trying to find a better alternative. He was deeply concerned that a lack of adequate rehabilitation at the facility was preventing his mother from regaining her mobility. Although he did not have a plan to keep her safe if she returned home, Tom was exploring options to try to bring his mother home and also obtain therapy that could help her regain strength and the ability to walk. Overall, from a family caregiver’s perspective, the options presented had gone from hazardous to punishing – reliable, ongoing supportive services in a safe environment that would have made both of their lives much better were simply unavailable, because they fell between having a bit too much income for Medicaid, but not enough to pay for PACE.

Sheila’s Story

We spoke with Sheila a couple of months after she had contacted PACE on behalf of her elderly father. After the death of her mother, Sheila became concerned about her father’s social isolation and depression. Declines in physical health and the beginning signs of cognitive impairment were limiting his ability to venture out on his own to see friends and attend medical appointments. Sheila believed the PACE program would be ideal for her father, given that the PACE Center could provide an easy way to access the social interaction he sorely needed, and his medical care would be managed and monitored, alleviating worries about making and tracking various appointments for medical services that created burdens both for him and for her.

Unfortunately, her father’s small pension made Sheila’s father ineligible for Medicaid — without providing enough money to pay the out-of-pocket monthly PACE fee. Given the difficulty of caring for her father’s health needs, and growing concern for his acute loneliness, Shelia made the decision to buy a larger home that would allow her father to live with her family. Unfortunately, this did not work out as well as she had hoped, in part because she and her husband had full-time jobs, and had difficulties transporting her father to various medical appointments that were always scheduled during business hours.

Sheila was also concerned about her father spending most of his days alone. He still drove his own car, but was starting to show signs of forgetting even the most familiar of routes, and she suspected he would soon be unable to drive at all. Sheila was highly motivated to do all she could to help her father maintain a good quality of life in his final years and reported that the PACE Center continued to be the most attractive option for both medical services management and for social interaction. At the time of our last call, she had begun looking into the feasibility of having her father’s pension reduced in order to try to qualify him for Medicaid, so she could enroll him in PACE.

Reflections and Next Steps

Tom and Sheila were both doing their best to care for parents who had reached advanced old age. Both parents worked all of their adult lives and had accumulated some resources for retirement, and the comprehensive care model of PACE was a terrific solution for addressing several concerns. PACE was by far the option – but under current rules, it was beyond their financial means, and no other set of services was adequate or available.

These stories show why we are working on advancing flexibility in PACE, both in Medicare and Medicaid. PACE is well-positioned to serve many more people in a long-lived society if we can get policymakers to agree to implement commonsense solutions that remove current barriers. We hope you will join us in the endeavor, and if you want more information about PACE innovations, please contact us at [email protected].

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Interim Reports on Aggregating Care Plans to Manage Supportive Care Services for Elders

 Posted by on March 28, 2018  No Responses »  Tagged with: , , , , , , ,
Mar 282018
 

By Les Morgan

The following reports were produced as deliverables for our project “Aggregating Care Plans to Manage Supportive Care Services for Elders” (Joanne Lynn, M.D., Principal Investigator).This project is funded by the Gordon and Betty Moore Foundation through Grant GBMF5662 to Altarum Institute. Dr. Lynn will provide a more detailed report on the project as a whole in a following blog post.

We are releasing these reports now particularly to help some of the community groups we are working with on data projects. The first three reports cover technical details of how care plans can be structured, stored, and shared in electronic information systems. Those three reports taken together provide useful information that can be used by community groups seeking insight into eldercare through the use of data aggregation methods.

Communities that are seeking to improve eldercare need trustworthy data to use in setting priorities and in monitoring improvements. One appealing approach is to aggregate existing health-related records and analyze the data for key indicators of how their local system is functioning. However, for most of the communities we have worked with, on a practical level the aggregation of this sort of data seems to be very difficult or impossible, given important concerns over privacy and the serious penalties associated with breaches of privacy obligations. Our hope is that these reports will help overcome some of the obstacles that stand in the way of improving care for some of our most vulnerable citizens.

To read the full reports in PDF format, click on the report name you wish to view.

Report 1

Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology [PDF]

Joanne Lynn and Les Morgan. October 20, 2017

Effective multidisciplinary clinical teams know their patients but document only a skeletal summary of the case. That summary generally includes diagnoses, basics of the living situation, medications, treatments, and supportive services in use or recommended. The various biases, omissions, and lack of long-term perspectives in the clinical documentation are substantial, as summarized in the report.

Our scan of forms and data formats for care plan documentation shows a wide variety of approaches. All made heavy use of free-text narrative elements. The most complete and up-to-date set of care plan records that we have seen was done longhand on a typewritten sheet by a single care coordinator responsible for over one hundred high-need patients seen at one hospital.

The electronic record systems that we reviewed used only to carry the minimal information needed for a C-CDA transmission mostly limited to immediate and near-term needs. None of the electronic records we examined were being used to record the caregivers with their roles, the prognosis, or an advance directive. None used the existing FHIR data format standards for complete care plans.

Report 2

Interim Report Summarizing Data Aggregation Methods in Use To Date and Their Strengths and Weaknesses [PDF]

Les Morgan. October 20, 2017

This is a high-level Information Technology (IT) architectural review discussing major variations in system design approaches for care plan data aggregation, based on a content analysis of interviews with vendors and some key users. A series of architectural diagrams is included to classify approaches. Our interviews with technology vendors are ongoing, and this preliminary summary of methods will evolve as we see more examples of working systems.

Report 3

Aggregating Patient-Level Data: Regulatory, Ethical, and Privacy Issues for Communities [PDF]

Les Morgan and Joanne Lynn. March 2018

This report gives an overview and assessment of regulatory, ethical, and privacy issues specifically related to the use of aggregated care plan and related health data for analytical use across defined geographical catchment areas. The literature covering regulation and privacy of healthcare data is extensive and often contentious. Our review here highlights some major sources for authoritative guidance, then moves on to the specific situation of using aggregated and de-identified data sets for geographic analysis. Regulations that are specific to requirements for maintaining care plans were covered in our prior project report (Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology) and are not repeated in this report.

A key conclusion of our review is that using aggregated and de-identified data on a broad geographic basis is probably not restricted as much as many of our community stakeholders and leaders think. Some uses of such data are specifically exempted from key privacy laws when appropriate protections are in place. Some regional health care payer systems and Health Information Exchanges (HIEs) have mechanisms to enable such research now, using very large data sets they have already compiled. This means that it is feasible to carry out pilot projects to demonstrate practical methods for data aggregation and analysis for a community or region in many parts of the United States.

Report 4

Benchmarking the Eldercare Workforce: A Community Focus [PDF]

Meghan Hendricksen and Joanne Lynn. February 2018

The overall purpose of this report is to provide an initial, alpha-version, benchmark of the workforce within geographic communities to use for illuminating comparisons with their own workforce estimates.

This baseline benchmark will provide a tool for consideration, and then feedback for improving the tool. In essence, we are creating the start of a learning system for optimizing the workforce in a geographic community. Once the estimates and ranges become substantiated in multiple communities and improvement activities, the maturing benchmarks will provide a trustworthy source of guidance for communities, where evidence is currently lacking, on what the priority needs are for the workforce that is serving older adults living in the community and also will provide a tool for monitoring improvements. Measuring the local workforce capacity also helps engaged community leaders to envision their whole system and its products, even though that “system” is owned and operated by many different entities that are not necessarily coordinated.

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Through a Glass Darkly: The Community-Based Care Transitions Program Evaluation

 Posted by on February 22, 2018  No Responses »  Tagged with: , , , , ,
Feb 222018
 
Photographs of Joanne Lynn and Sarah Slocum
Authors Joanne & Sarah

By Joanne Lynn and Sarah Slocum

“All models are wrong, but some are useful”. – George Box

In late November, the Centers for Medicare and Medicaid Services (CMS) released an extensive evaluation of the Community-based Care Transitions Program (CCTP). (https://downloads.cms.gov/files/cmmi/cctp-final-eval-rpt.pdf)

While the report has some useful points, the primary metrics used to measure performance – re-hospitalization/discharge rates, are seriously deficient. To start with, reducing hospital readmissions – or, for that matter, reducing admissions – is not always good for patients. More importantly, the CCTP evaluation presumed that the relevant part of the patient’s journey starts in the hospital at discharge, and that the main issues revolve around having and adhering to the correct discharge instructions, especially for medications, which then lead to engaging the patient in his or her outpatient medical care. These are certainly important, but the evaluation’s narrow focus on short-term transitions of care leaves out much of what happens in the lives of seriously ill persons that reflect the capacity of their community to provide ongoing supportive services – disability-adapted housing, home-delivered nutritional food, the adequacy of the personal care workforce, employer flexibility for family caregiving, and more.

The CCTP was part of a larger innovation effort sponsored by CMS, the Partnership for Patients, which had an overall goal of a 20% reduction in Medicare fee-for-service (FFS) hospital readmission rates. The agency was given $500 million to implement CCTP in 101 sites around the country. Most project sites applied basic commonsense transitions of care protocols, for which there is substantial evidence, i.e., ensuring that newly discharged patients received the right medications and were engaged with their community-based physicians in order to prevent avoidable hospital readmissions within 30 days after discharge. Yet the focus on medical services provided at and for a short while following hospital discharge, as well as the metric that applied to hospital rates, distorted the endeavor and put a good number of participating community-based organizations at serious financial risk.

The original Quality Improvement Organization (QIO) project that preceded the CCTP measured the effect of improvement activities on entire communities (rather than specific hospitals), and aimed to reduce readmissions per 1,000 Medicare FFS beneficiaries across the entire population, https://jamanetwork.com/journals/jama/fullarticle/1558278. That model accepted the need not only to address medical errors and mobilize patient self-care, but also to focus on what it takes to successfully shift the support of very sick and disabled persons to community service providers and reduce the challenges of living with ongoing serious illness.

In the QIO project, most Medicare beneficiaries who were re-hospitalized within 30 days were known to be very sick and disabled prior to the initial hospitalization. This meant that the hospitalization episode represented a few somewhat worse days in the course of living with a serious condition, such as an organ system failure, neuromuscular degenerative disease, or frailty. That understanding broadened the focus of reforms to include examining the capacity of the person’s community to support very sick and disabled persons with reliability and competence. The interventions aimed to optimize the overall course of disease and disability and to ensure that the individual and family (and other caregivers) felt well supported. For example, they worked to ensure the adequacy of the care plan, prompt availability of supportive and personal care services, and realistic planning for decline and death.

However, in building on the QIO results, CMS shifted the focus to a hospital-centric design and evaluated performance on a hospital-specific basis. This creates the problem that we reported in a previous blog, https://medicaring.org/2014/12/08/lynn-evidence/, which is that good practices in the community reduce the number of admissions at about the same rate as the number of readmissions, is ignored. In turn, this makes the hospital-based readmissions/admissions metric misleading. Perhaps more important, structuring the CCTP to measure the impact only on the hospital leaves out the importance of how effective community-based providers were in providing supportive services over time to frail elders living at home and in other community settings.

Some community services providers nevertheless managed to help their partnering hospitals make impressive gains in reducing re-admissions. For example, the Eastern Virginia Care Transitions Program (EVCTP) brought together five Area Agencies on Aging that improved support and smoothed transitions across 20% of the state. Five health systems and 69 skilled nursing facilities joined. Re-hospitalizations for the whole area declined from 18.2% of all FFS Medicare discharges in 2013 to 8.9% in 2015, resulting in a $17 million savings to Medicare and a great deal of avoided suffering by patients, families, and caregivers. EVCTP used the Coleman Care Transitions Intervention© and offered enhanced services as part of the admissions process for certain segments of the Medicare population. It also prompted formation of a coalition of all 25 Area Agencies on Aging in Virginia to infuse best practices in subsequent partnerships across the state, http://www.chcs.org/media/EVCTP-Case-Study_101217.pdf/.

In Akron, Ohio, “Direction Home,” the Area Agency on Aging’s program, first began embedding coaches (either nurses or social workers) in local hospitals in 1998 to assist patients through connecting them to various community services, including home care and home delivered meals. That history of collaboration between health care providers and social services providers gave Akron a head start in reducing hospital use by Medicare beneficiaries with ongoing serious chronic conditions. Between 2010 and 2016, hospital readmissions fell from 19.6% of Medicare FFS hospital discharges to 11.7%. Akron leaders attribute much of this success to intentional relationship building, which extends to having health system professionals on the boards of community organizations, http://www.commonwealthfund.org/publications/case-studies/2017/aug/akron-ohio-health-care. However, CMS did not allow community-based organizations to use CCTP funds for training, overhead, data development, administration, or outreach – only for the patient-facing services. This meant that some of the community-based organizations encountered major difficulties and high costs in trying to forge initial connections and close working relationships with hospitals in their area.

Other findings in the evaluation point to well-documented challenges for some CCTP sites, including incorrect (or poorly understood) discharge instructions on medications and dietary restrictions; under-resourced community-based services; fragmentation between social services and health care systems; and a lack of data at the individual level for high-value individual care planning, and at the aggregate level for geographically-based system planning.

Every model leaves out a great deal of complexity. What matters is what we retain and take forward in subsequent work. We can accept that high re-hospitalization rates are probably evidence of shortcomings in a hospital’s discharge processes, and that mobilization of patients to take care of themselves gets us partway toward a better model of care. However, we should also include how communities and their social support organizations can improve access to adequate safe housing, nutritious food, reliable personal care, and other key services. That more complex model requires the involvement of multiple stakeholders, and measuring the performance of a complex, multi-faceted care system that serves similarly situated individuals across a geographic community — rather than just the re-hospitalization rates of certain hospitals.

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It Takes YOUR Community Symposium

 Posted by on January 23, 2018  1 Response »  Tagged with: , , , , , ,
Jan 232018
 
A photograph of a group of Zuni elders
Zuni Elders Community

On December 5, 2017 the “It Takes YOUR Community” symposium was hosted by Altarum’s Center for Elder Care & Advanced Illness in Washington, DC. This post provides an edited videocast of the event and the edited transcript with links to presentation slides as well as a Resource POD. The primary goal of this symposium was to bring together fellow stakeholders and interest groups involved in addressing the needs of the growing elder population at the policy and grassroots level, and to discuss possible strategies as to how we can stay engaged and think about building community-anchored care systems across the country.

Our diverse and dynamic group of speakers and panelists provided in-depth insight, as well as actionable and practical tools of advocacy models necessary to plan for the community-based health and long-term service and support (LTSS) needs of a growing older population.

The Symposium Transcript has been edited for clarity and readability and includes links the background resources that presenters provided [for additional resources see our Resource POD]. Additionally, here is the final agenda, for your reference.

The Full Videocast can be viewed or you can use the individual links to the agenda below (so you can select which panel discussions you wish to watch). Click on the discussion title [blue text] to link to start the recording of that discussion. You can navigate in the whole recording from any of the links below, for example you can view the entire session by clicking the opening link.

0:00 – 6:29 ~ Opening: Communities and the “Age Wave”
6:30 – 1:04:40 ~ Three Communities: What Are the Driving Factors?
1:04:41 – 1:52:52 ~ The Role of the Federal Government in Supporting Community-Anchored Care
1:52:53 – 2:31:46 ~ Panel Discussion: Drilling Down
2:31:47 – 3:10:04 ~ Financing Projections by Communities and Getting a Handle on Services and Costs: How You Can Approach This as a Community Planning Initiative
3:11:46 – 3:47:28 ~ Where Can Communities Go To Find Some Money to Get Started?
3:47:28 – 3:49:44 ~ Leveraging Action

Copyright © 2017 Altarum, All rights reserved.

Altarum is a national nonprofit whose mission is to create a better, more sustainable future through ideas and action that transform health and health care in America. Learn more at www.altarum.org

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Caregiving in Politics and Policy: A Data Chartbook

 Posted by on September 26, 2017  No Responses »  Tagged with: , , ,
Sep 262017
 
Red Image of America Cares Chartbook

The America CARES Forum was held on November 14, 2016, a week after the national election. Sponsored by Altarum with Caring Across Generations, the forum featured national polling data from Lake Research Partners and The Tarrance Group. The polling showed strong support for major policy advances for both family caregivers and direct care workers, as demonstrated in the data from the Chartbook for America CARES [click to download the PowerPoint file]. Voters of all stripes ranked caregiving as a major concern and all endorsed substantial policies to make caregiving more possible and less burdensome.

Overall, the number of older adults over the age of 65 will nearly double by 2050 and the 80+ population is projected to increase 79% from 2010 to 2030 and 44% from between 2030 and 2040. These changes, coupled with falling birthrates, will create a care gap, with less than 3 people of working age (potential caregivers) for each older adult in need — compared with a 7:1 ratio in 2010. Meanwhile, labor force participation among women ages 25 to 64, who currently make up 73% of the home care workforce, will increase by only 2 million in the next decade, compared to 6.3 million in the previous decade.

Caregiving issues will shape the politics and policies of the coming decades.

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