The latest in family caregiving news and policy developments

CAREGIVING POLICY DIGEST

Vol. 25, No. 3 | June 2023

Caregiving: An Expectation, Not an Interruption

“Until six years ago, I had never imagined I would become a caregiver. I was living the independent life of many 30-somethings, focused on work and love. Then, my mom got cancer — and I was ushered into the hidden world of struggling family caregivers. The federal government’s 2022 National Strategy to Support Family Caregivers commits to ‘convene a task force to develop a consensus definition of family caregiver.’ But the desire to define ‘family caregiver’ implies that this is a category of people divisible from the whole — that they are, by definition, not everyone. Moreover, this group is so hard to define that an entire task force is required. But what if, instead, ‘caregiver’ were assumed to mean everyone? What if the role were merely synonymous with human life? This is a conceptual point but a practical one, too. Think about it: We live in breakable bodies. We need care as infants, we need care when we have the flu or break a limb, and we need care when we get really sick or frail with old age. Our lives are characterized as much by neediness as by independence. It follows, then, that our social arrangements ought to reflect this evidence-based reality. Caring should be seen as an expectation — not an interruption. Instead, officials pathologize caregiving, and care is cast as an unfortunate obligation. The effect of this cultural failure is often devastating for U.S. caregivers. They can expect to lose income and pension savings, to experience higher depression and anxiety rates, to suffer from a burnout so prevalent it has its own name (‘caregiver stress syndrome’), to lose their marriages and, most startlingly, to die more quickly. This is a high price to pay for carrying out what is surely the most human of tasks.” (Emily Kenway, “Who Cares: The Hidden Crisis of Caregiving and How We Solve It.”)

Alzheimer’s and Dementia: Developments Apace

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Lilly Drug Shows Promise
Alzheimer’s Drug Payment Policy Evolves
Multivitamins: Part of the Solution?
FDA Approves First Anti-Agitation Pill

Lilly Drug Shows Promise

Developments continue apace, albeit fitfully, with respect to Alzheimer’s drug treatment. In early May Eli Lilly announced eagerly awaited further results of its trial of the anti-amyloid drug donanemab. The drug, reported Stat’s Matthew Herper and Adam Feuerstein, “slowed patients’ rate of cognitive and functional decline by 35% compared to placebo, paving the way for a submission to the Food and Drug Administration. If cleared, donanemab will compete with another new Alzheimer’s treatment, Leqembi, made by Eisai and Biogen.” The latter drug secured preliminary FDA approval in January 2023; June brought an expert panel’s 6-0 vote to expand Leqembi’s approval, and a final decision on full FDA approval is targeted for early July. If, as expected, the agency follows the expert panel’s recommendation, the ball will then shift to CMS as it wrestles with whether and under what conditions Medicare will pay for the costly treatment.

Alzheimer’s Drug Payment Policy Evolves

For now CMS is hewing to its previously announced restrictive payment policy for anti-amyloid drugs that have not received full FDA approved. On June 1, however, CMS announced a somewhat more expansive payment policy for fully approved ones. Nonetheless, as Washington Post reporters write, even with such approval “physicians must participate in registries designed to collect information on how the drugs work in the real world, as opposed to the tightly controlled environment of clinical trials. For drugs cleared by the FDA on an accelerated basis, Medicare will stick with its policy of covering the medications only for patients in federally approved clinical trials. The Alzheimer’s Association criticized the CMS plan, saying in a statement that requiring a ‘registry as a condition of coverage is an unnecessary barrier.’ While registries can be important tools to gather information about a drug, the association acknowledged, ‘we remain concerned that the requirement of clinicians to register and enter data will create unnecessary hurdles.’ Other experts said they don’t expect patient registries to hinder the accessibility of the drug and support the approach from CMS. The collection of information ‘will be critical for further analyses to be done, both by CMS to make sure that their beneficiaries are continuing to benefit from the drug in a meaningful way and then also to collect safety information,’ said Reshma Ramachandran, assistant professor of medicine at Yale School of Medicine. Diana Zuckerman, president of the National Center for Health Research, a nonprofit think tank, agreed, saying such data will show ‘who is benefitting, how much and whether certain patients will be at such high risk — perhaps those taking blood thinners, for example — that it is not worth the risk.’”

Multivitamins: Part of the Solution?

Amid all the attention being given FDA clearance of dementia medications, researchers at Brigham and Women’s Hospital and Columbia University have provided some hope for a far simpler and readily available solution: a once a day multivitamin pill. Their most recent study, the Washington Post’s Marlene Cimons reports, “found that those taking multivitamins (Centrum Silver) showed an estimated 3.1 fewer years of memory loss compared with a control group who took a placebo. Put another way, the multivitamin group was an estimated 3.1 years “younger” in terms of their memory function than the placebo group. The latest trial included more than 3,500 participants ages 60 and older who completed web-based assessments of memory and cognition annually over three years. The tasks were recalling words and recognizing novel objects, and a measure of executive control. Compared with the placebo group, participants randomized to multivitamin supplementation did significantly better on immediate recall of words after one year and sustained that benefit for an additional two years of follow-up. Multivitamin use, however, ‘did not significantly affect memory retention, executive function, or novel object recognition’ when compared with placebo use. An earlier study published last fall, conducted by Brigham and Women’s Hospital and Wake Forest University School of Medicine, found a 60 percent slowing of cognitive aging among those who took multivitamins compared with the placebo group. The two studies were independent of each other and had different designs. But, significantly, both were randomized placebo-controlled clinical trials, the ‘gold standard’ of research in determining the efficacy of a drug or medical treatment — directly linking cause and effect.”

FDA Approves First Anti-Agitation Pill

Almost lost in the focus on the possibility of slowing Alzheimer’s progression was news of FDA’s approval of the first drug to treat the disease’s challenging symptom of agitation. Brexpiprazole (Rexulti, Otsuka and Lundbeck)), available since 2015 as an adjunct to depression treatment, will now be indicated for agitation associated with dementia. As Medscape’s Megan Brooks reports, “Agitation can include symptoms that range from pacing or restlessness to verbal and physical aggression. ‘These symptoms are leading causes of assisted living or nursing home placement and have been associated with accelerated disease progression,’ said Tiffany Farchione, MD, director of the Division of Psychiatry in the FDA's Center for Drug Evaluation and Research. In two gold standard studies, patients who received 2 mg or 3 mg of brexpiprazole showed statistically significant and clinically meaningful improvements in agitation symptoms.”

A Reflection on Mental Capacity

“Within medicine to an informed clinician, patients are never ‘capable’ or ‘incapable’ in a global sense. Instead, they are capable or incapable of making a specific decision, in a specific context, at a specific moment. In practice, this means that a person with dementia might retain what doctors call “decision-making capacity” for years and then lose it in stages: the complex choices first, the simple ones later. Someone might, for instance, lose the capacity to choose among treatment options but retain the capacity to decide which family member should make the decisions. In each case, the firm bioethical consensus is that we should err on the side of assuming capacity. A person is capable until proved otherwise. Physicians now rely on a framework for assessing capacity that was published in 1988 by the researchers Paul Appelbaum, a psychiatrist, and Thomas Grisso, a psychologist. Under their terms, patients are capable of making medical choices if they can understand the relevant information; appreciate the nature of their condition as well as the risks and benefits of treatment; reason their way to a conclusion; and communicate their choice. Medical students across the United States now learn this in shorthand: understand, appreciate, reason, express a choice. Still, the precise work of measuring self-sovereignty remains inexact. Decades after decision-making science took hold in American medicine, there is still no universally agreed-upon test of capacity — and no flawless gold standard by which to measure it. Within the legal world, ‘there has been, in the last several years, a real sea change in thinking about capacity,’ Charlie Sabatino, former director of the American Bar Association’s Commission on Law and Aging, told me. ‘The real die-hard view is that you never lose capacity. In this newer view, a person can occupy an infinite number of spaces on a gradient from legally capable to incapable, with the far end of the spectrum reserved for people stuck in comas or vegetative states. Short of that extreme, a person will almost certainly retain the ability to choose some things even if not everything. A person might, for instance, be legally incapable of carrying out a complex property transaction but capable of managing a small bank account.’” (Katie Engelhart, The New York Times)

Artificial Intelligence (AI)

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AI Voice “Banking” Preserves ALS Patients’ Vocal Sounds
ChatGPT Enhances Physician-Patient Communication

AI Voice “Banking” Preserves ALS Patients’ Vocal Sounds

Artificial intelligence (AI) has been saturating the news waves lately, with some of the coverage raising alarms about its potential for out-of-control deleterious applications. For Ron Brady, however, 52 years old when he was diagnosed with amyotrophic lateral sclerosis (ALS) -- a neurodegenerative disease that eventually causes most people to lose their ability to speak, walk or breathe – AI has been transformative. At 55, Brady can no longer swallow food, and it’s getting harder to brush his teeth and put on clothes. He likes to crack jokes, but his speech is slurred to the point where few understand him. But, thanks to AI, he has not lost his voice. As the Washington Post’s Amanda Morris, Alexa Juliana Ard and SzuYu Chen write (in a lengthy article complete with sound effects), “That’s because he preserved his voice with a company called Voice Keeper, which is one of several companies using artificial intelligence to ‘bank’ people’s voices while they are still able to speak and re-creates those voices for text-to-speech software. Voice banking used to be expensive and time-consuming, but AI has made it more accessible to people with conditions that could impact their ability to speak, such as ALS, throat cancer, cerebral palsy and Parkinson’s disease. Patients say having a computer-generated voice that sounds like their real voice has given them a greater sense of confidence and connection to the world around them.

Brady’s synthetic voice isn’t a perfect match — his speech was already impaired when he recorded himself. But it has the same relaxed, deep tone, which he jokingly calls ‘suave.’ ‘My favorite thing to say is any corny dad comment that will make my wife or adult children laugh,’ he said. To Brady, getting his voice back felt like getting parts of himself back: the school administrator who commanded a room with confidence, the gregarious, talkative father, and the first college graduate in his family, whose neutral American accent was very different from the Caribbean accent of his immigrant parents. Then there is Brian Wallach, 42, a prominent ALS activist and former federal prosecutor who was diagnosed with ALS when he was 37, the same day his youngest daughter came home from the hospital. Over the years, his voice has transformed from forceful and clear to mumbled murmurs. When he played his synthetic voice for the first time to his family, it was so accurate his wife burst into tears, he said. Meanwhile, his youngest daughter, who had never heard his voice pre-ALS, asked, “Is that you, Daddy?” “I said back to her, ‘It is. My voice has changed a lot, but this is what I used to sound like.’”

ChatGPT Enhances Physician-Patient Communication

Another example of what AI portends for medical practice is emerging in the wake of the recent release of an updated version of AI driven ChatGPT. “Some experts do worry,” writes the New York Times’ Gina Kolata, “about artificial intelligence offering a too tempting shortcut to finding diagnoses and medical information that may be incorrect or even fabricated. But most surprising to Dr. Peter Lee, corporate vice president for research and incubations at Microsoft, was a use he had not anticipated — doctors were asking ChatGPT to help them communicate with patients in a more compassionate way, using AI to find words to break bad news and express concerns about a patient’s suffering, or to just more clearly explain medical recommendations. Dr. Michael Pignone, the chairman of the department of internal medicine at the University of Texas at Austin, has no qualms about the help he and other doctors on his staff got from ChatGPT to communicate regularly with patients. He explained the issue in doctor-speak: ‘We were running a project on improving treatments for alcohol use disorder. How do we engage patients who have not responded to behavioral interventions?’ Or, as ChatGPT might respond if you asked it to translate that: How can doctors better help patients who are drinking too much alcohol but have not stopped after talking to a therapist? Dr. Pignone tried ChatGPT, which replied instantly with all the talking points the doctors wanted. Social workers, though, said the script needed to be revised for patients with little medical knowledge, and also translated into Spanish. The ultimate result, which ChatGPT produced when asked to rewrite it at a fifth-grade reading level, began with a reassuring introduction: ‘If you think you drink too much alcohol, you’re not alone. Many people have this problem, but there are medicines that can help you feel better and have a healthier, happier life.’ That was followed by a simple explanation of the pros and cons of treatment options. The team started using the script this month.”

Biden Executive Orders Target Caregiving Services

Caregiving took center stage on April 18 as Pres. Biden affixed his signature to 50 executive orders during a White House ceremony witnessed by a large audience of caregivers, advocates, and state and federal officials. While the measures carried no new funding provisions, the high visibility event brought welcome attention to the need for more affordable child and long term care, enhanced job quality for long term care workers and advances in domestic workers’ rights. Turning to family caregivers, the President emphasized that “Without adequate resources, family caregiving can affect caregivers’ physical and emotional health and well-being and contribute to financial strain. These negative consequences are felt most acutely by women, who make up nearly two-thirds of family caregivers and who drop out of the workforce at higher rates than men. To provide greater support to family caregivers, the Executive Order directs HHS to consider testing a new dementia care model that will include support for respite care, make it easier for family caregivers to access Medicare beneficiary information, and provide more support to family caregivers during the hospital discharge planning process. Additionally, The Veterans Administration will consider expanding access to the Program of Comprehensive Assistance for Family Caregivers and provide more mental health support for caregivers enrolled in that program.”

Medicaid

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The Post-PHE Unwinding Begins
Medicaid Eligibility Review Removes Many from Coverage
HHS Secretary Urges Review Flexibility
NASHP Report Highlights State Medicaid Respite Care Efforts

The Post-PHE Unwinding Begins

The unwinding of the pandemic’ s liberal Medicaid enrollment rules is well underway, and, as the New York Times Noah Welland reports, “Hundreds of thousands of low-income Americans have lost Medicaid coverage in recent weeks. Early data shows that many people lost coverage for procedural reasons, such as when Medicaid recipients did not return paperwork to verify their eligibility or could not be located. The large number of terminations on procedural grounds suggests that many people may be losing their coverage even though they are still qualified for it. Many of those dropped have been children. From the outset of the pandemic until this spring, states were barred from kicking people off Medicaid under a provision in a coronavirus relief package passed by Congress in 2020. The guarantee of continuous coverage spared people from regular eligibility checks during the public health crisis and caused enrollment in Medicaid to soar to record levels.”

Medicaid Eligibility Review Removes Many from Coverage

The policy’s expiration at the end of March, writes Welland, “set in motion a vast bureaucratic undertaking across the country to verify who remains eligible for coverage. In Arkansas, more than 1.1 million people — over a third of the state’s residents — were on Medicaid at the end of March. In April, the first month that states could begin removing people from the program, about 73,000 people lost coverage, including about 27,000 children 17 and under. Among those who were dropped was Melissa Buford, a diabetic with high blood pressure who makes about $35,000 a year at a health clinic in eastern Arkansas helping families find affordable health insurance. Her two adult sons also lost their coverage. Like more than 5,000 others in the state, Ms. Buford, 51, was no longer eligible for Medicaid because her income had gone up What has played out in Arkansas so far offers evidence of the widespread disruption that the unwinding process is likely to cause in households across the country in the coming months, forcing Americans to find new insurance or figure out how to regain Medicaid coverage that they lost for procedural reasons. The federal government has projected that about 15 million people will lose coverage, including nearly seven million people who are expected to be dropped despite still being eligible. Ms. Buford said that her job helping others find health insurance in underserved areas was a calling inspired by watching her grandmother struggle to afford her medications and rely on food pantries. Ms. Buford went to a community college near her hometown so she could take care of her sick father, who passed away in his 40s. ‘I love my job because I’m able to help people,’ she said. Now that she has lost her Medicaid coverage, Ms. Buford hopes to find an affordable marketplace plan in the near future. ‘The family plan offered by the clinic where she works is too costly.’”

(Editor's Note: The Kaiser Family Foundation offers an interactive, frequently updated website that tracks Medicaid enrollment and unwinding data. A similar resource managed by the Center on Budget and Policy Priorities can be accessed here.)

HHS Secretary Urges Review Flexibility

Amid mounting concerns about the unfolding Medicaid eligibility redetermination process, HHS Sec. Xavier Becerra, in a letter to all US governors, emphasized the availability of several options–longer renewal timelines, access to multiple data sources to determine eligibility and partnerships with managed care plans–to maintain Medicaid coverage. “It is critically important,” Becerra wrote, “to ensure that individuals do not lose coverage due solely to administrative processes. I urge you to adopt all options that we have offered to help eligible individuals and families maintain their health coverage during this process and leverage all state partners to support individuals and families to complete renewal forms. States must comply with federal rules regarding how they conduct Medicaid and CHIP renewals, and individuals must be afforded the due process to which they are entitled in order for states to continue to receive enhanced federal funding. We take our oversight responsibilities extremely seriously, and while we know that states are working hard to meet the federal requirements, we will not hesitate to use the compliance authority provided by Congress.”

NASHP Report Highlights State Medicaid Respite Care Efforts

Seven states – Iowa, Kentucky, Louisiana, Missouri, Texas, Virginia and Washington – serve as the subjects of a report issued by the National Academy for State Health Policy (NASHP) that examines emerging respite care strategies in Medicaid HCBS. “With caregivers increasingly asked to perform more intense and complex care,” the report states, “respite care is integral to giving caregivers a much needed break. Respite care is a service typically delivered in the home or a facility-based setting that provides short-term relief for caregivers. It is one of the most desired caregiver services, and Medicaid is one policy lever to fund it. No two states’ respite policies are identical, and many states have not created new or updated old respite policies in years or decades. Despite Medicaid’s role as a major payer of longterm services and supports (LTSS), the amount that states estimated they will spend on respite care is a small portion compared to other waiver services. Trials have found that when older adults’ caregivers receive supports that include respite, caregiver outcomes improve, older adults’ nursing home placement is delayed, and there is a decrease in hospital readmissions and emergency room expenditures.”

Equity in Health Care Delivery

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Leapfrog Group Documents Safety Risks for Black and Hispanic Hospiral Patients
Justice in Aging Proposes “Equity” Framework for Medicaid HCBS

Equitable access to healthcare services and supports is the subject of two recent documents:

Leapfrog Group Documents Safety Risks for Black and Hispanic Hospiral Patients

A report from the Leapfrog Group “examines the association between Leapfrog Hospital Safety Grades and differences in rates of adverse safety events among white, Black, and Hispanic patients and among patients with commercial insurance and public insurance such as Medicare or Medicaid. The analysis found that higher-graded hospitals are safer for all patients, but Black and Hispanic patients are still at increased risk of experiencing certain surgery-related adverse safety events when compared to white patients even at hospitals at all grade levels. ‘We must honestly acknowledge the persistent racial and ethnic disparities, but we can't stop there,’ said Missy Danforth, vice president of health care ratings at The Leapfrog Group. ‘Achieving safe care for all patients requires a focused commitment to transparency, better data collection, and targeted interventions.’ The report compares the rate of 11 dangerous, preventable patient safety problems, including blood clots or sepsis after surgery, among white, Black, and Hispanic patients at hospitals that earned Hospital Safety Grades of ‘A,’ ‘B,’ and ‘C/D/F.’ Analyzing differences across all graded hospitals, Black patients experience a higher incidence of surgery-related complications than white patients. ‘These data suggest that the issue does not lie in the individual hospitals themselves but is a systemic issue impacting the quality of care for Black and Hispanic patients and those with public insurance plans,’ said Anuj Gangopadhyaya, senior research associate in the Health Policy Center at the Urban Institute. ‘Hospitals should recognize these disparities and ensure resources are devoted to reducing adverse safety events among patient groups at the highest risk.’”

Justice in Aging Proposes “Equity” Framework for Medicaid HCBS

From Justice in Aging comes an Issue Brief proposing “An Equity Framework for Evaluating and Improving Medicaid Home and Community Based Services.” Because states are not required to cover HCBS, the system “is a patchwork of HCBS programs with wide variation among and within states, leading to inequities in who has access to the supports and services needed to live in the community and who has no option but to receive care in an institutional setting. Racial discrimination and segregation in housing further compound these inequities, because without accessible and affordable housing, people cannot receive HCBS To achieve health equity, it is therefore necessary to evaluate seemingly neutral HCBS program policies and rules to ensure they are not preserving existing inequities or causing unintended inequities. To facilitate such evaluations the Issue Brief describes five domains in which inequities can arise: 1) Program Design; 2) Provider Availability; 3) Program Awareness and Enrollment; 4) Assessments and Authorization of Services; and 5) Provision of HCBS.” Each domain’s potential for inequitable access is explored through detailed examples, along with several state-specific vignettes.

Hospital Discharges

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Researchers Find Modest CARE Act Impact
CMS Prods State Survey Agencies’ Post-Hospital Transfer Oversight

Researchers Find Modest CARE Act Impact

A major milestone in the effort to improve patient’s hospital discharge experience was the promulgation of the Care Act (Caregiver Advise Record Enable Act) and its adoption over the past decade by 42 states. The Act requires those states’ hospitals to advise patients of the opportunity to designate a caregiver, record their name and contact information in the health record, and enable the caregiver by consulting and providing education on medical or nursing tasks to be performed at home. Researchers at the University of Pennsylvania have now published a study of the impact of the statute from 2013 to 2019. Their conclusion: “passage of the CARE Act was associated with differential improvements in patient experience. Improvements in patient experience persisted with each year since passage of this policy and were larger among hospitals with low baseline performance. These findings suggest that collaborating with caregivers during discharge planning is associated with better patient experience and outcomes.. Although our findings are consistent with prior work that has demonstrated better communication and counseling during discharge planning to be associated with higher patient satisfaction, our effect sizes are small compared with prior randomized clinical trials and difference-in-difference studies evaluating the effectiveness of various interventions. The lack of significant association between the CARE Act and the outcome pertaining to the quality of care transitions may be because provisions of the Act addressed some, but not all, of the elements in the quality measure. This gap between documentation and integration may contribute to the small effect sizes observed in our analyses.”

CMS Prods State Survey Agencies’ Post-Hospital Transfer Oversight

In a memo to state survey agencies CMS has restated the need to assure that patients’ transfer from a hospital to a post-acute provider be accompanied by appropriate treatment and condition information to prevent readmission or adverse events. Categories of missing information, observed CMS, “include information related to the patient’s underlying diagnoses, a comprehensive list of all medications that have been prescribed to a patient during, and prior to, their hospital stay, skin tears, pressure ulcers, bruising, or lacerations (e.g., surgical site(s), durable medical equipment, such as CPAP/BiPap or high-flow oxygen used for respiratory treatments, and skin healing equipment, a patient’s preferences and goals for care, such as their choices for treatment or their advance directives for end-of-life care, and communication with caregivers about a patient’s needs at home, or how their home environment may impact their ability to maintain their health and safety after discharge from the SNF.”

Exposé Prompts Pause in Hospital System’s Harsh Patient Debt Recovery Policy

Many hospitals, write the New York Times’ Sarah Kliff and Jessica Silver-Greenberg, “use aggressive tactics to collect medical debt. They flood local courts with collections lawsuits. They garnish patients’ wages. They seize their tax refunds. But a wealthy nonprofit health system in the Midwest is among those taking things a step further: it withholds care from patients who have unpaid medical bills. Allina Health System, which runs more than 100 hospitals and clinics in Minnesota and Wisconsin and brings in $4 billion a year in revenue, sometimes rejects patients who are deep in debt, according to internal documents and interviews with doctors, nurses and patients. Although Allina’s hospitals will treat anyone in emergency rooms, other services can be cut off for indebted patients, including children and those with chronic illnesses like diabetes and depression. Patients aren’t allowed back until they pay off their debt entirely.” Or at least they weren’t until the Times’ stinging tale on June 1 led within a week to Allina’s announcement that ‘it would stop withholding care from patients with outstanding medical debt as it ‘re-examines’ its policy of cutting off services for those who have accrued at least $4,500 in outstanding bills. The health system will now temporarily halt this practice but will not restore care for indebted patients who have already lost access. Allina’s chief executive, Lisa Shannon, called the move a ‘thoughtful pause’ while the company re-examined the policy. Dr. Matt Hoffman, an Allina primary care physician in Vadnais Heights, Minn., said he was encouraged by the change and hopeful that Allina would eventually make more significant reforms to how it treats indebted patients. ‘I hope this is not just a temporary pause until the heat is off,’ Dr. Hoffman said. ‘I hope they do the right thing, and reinstate the patients who were already terminated.’”

COVID-19

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CMS Authorizes Unlimited Nursing Home Visitations
AARP Tracker: Pandemic Data Improving
Covid “Long Haulers” Fear Abandonment
Remote Work Technology Benefits Caregivers

CMS Authorizes Unlimited Nursing Home Visitations

With the pandemic public health emergency (PHE) declared officially over in May CMS has issued a policy statement welcoming nursing home visitations “at all times.” We recognize, the CMS advisory states, “that physical separation from family and other loved ones has taken a physical and emotional toll on residents and their loved ones. Residents may feel socially isolated, leading to increased risk for depression, anxiety, and expressions of distress. Residents living with cognitive impairment or other disabilities may find visitor restrictions and other ongoing changes related to COVID-19 confusing or upsetting. CMS understands that nursing home residents derive value from the physical, emotional, and spiritual support they receive through visitation from family and friends. (Accordingly), facilities must allow indoor visitation at all times and for all residents as permitted under the regulations. While previously acceptable during the PHE, facilities can no longer limit the frequency and length of visits for residents, the number of visitors, or require advance scheduling of visits. Although there is no limit on the number of visitors that a resident can have at one time, visits should be conducted in a manner that adheres to the core principles of COVID-19 infection prevention and does not increase risk to other residents.”

AARP Tracker: Pandemic Data Improving

The revised written guidance comes amid improving covid-19 data from AARP’s COVID dashboard: “The rates of COVID-19 resident deaths and cases declined for the third consecutive month in nursing homes throughout the country, according to the latest report from the AARP Nursing Home COVID-19 Dashboard. Staff cases also declined. Despite the trend, rates varied among states with 18 states experiencing an increase in deaths for the four weeks ended April 23, compared to the previous four weeks ended March 26. Nine states saw cases increase during the same timeframe.”

Covid “Long Haulers” Fear Abandonment

For one group of Americans, however, the easing of covid-19 restrictions has brought little relief. “Ever since January,” writes the Washington Post’s Frances Stead Sellers, “when President Biden announced plans for a springtime end to the coronavirus public health emergency, Frank Ziegler has been wrestling with what that would mean for covid long-haulers like him. “The president was telling the U.S. to just move on. The problem is that for however many million of us, we can’t just move on,” said the Nashville attorney, who has endured cognitive impairments since coming down with covid-19 more than two years ago. Physicians and patients alike say the threat is clear: that long covid could lose the funding that had raised hopes of solving the mysteries behind a slew of apparently post-viral conditions. And fears have crept in that long-haulers will face a fate akin to that of people with chronic fatigue syndrome — marginalized and misunderstood, with a lack of medical evidence to explain or treat their symptoms and little impetus for researchers to dedicate their careers to such confounding cases. That sense of despair is familiar to Jimmie Lou DeBakey, who tested positive for the coronavirus in January, beginning her long-covid journey just as the rest of the country was putting the pandemic into the past. In February, overwhelmed by lassitude, she went to the emergency room, where a doctor looked her in the eye. ‘There’s not a thing I can do for you,’ she recalls him telling her. ‘No medicine. No magic bullet. No nothing.’”

Remote Work Technology Benefits Caregivers

The pandemic-spawned spread of remote work technology not only allowed commerce and societal cohesion to survive the empty office towers and urban spaces of the years of COVID; remote work, writes Kaiser Family Foundation’s Joanne Kenen, made all the difference for many family caregivers. “In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative. But the ‘return to office’ debate has centered on commuting, convenience, and child care. The fourth C, caregiving, is seldom mentioned. Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. ‘We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,’ said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, ‘mostly, it’s cradle.’ Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table. But there are countless scenarios in which the option to work remotely is an enormous help. When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite. Successful remote work during the pandemic has undercut bosses’ abilities to claim, ‘You can’t do your job like that,’ observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded ‘so that they represent a broad range of caregiving that occurs across life.’ Even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan.”

Nursing Homes

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Senate Aging Committee Takes Aim at SNF Oversight Crisis
Residents Win Appeal Rights in Supreme Court
Minnesota Creates SNF Workers Wage and Benefits Board

Senate Aging Committee Takes Aim at SNF Oversight Crisis

Since the 1980s, when it helped assure adoption of landmark nursing home reform legislation recommended by the Institute of Medicine, the Senate’s Special Committee on Aging has served as a watchdog on matters of concern in the operation of the nation’s long-term care facilities. Mid-May found the committee on familiar ground as it released a 98-page report–”Uninspected and Neglected”– that “revealed that the State agencies responsible for monitoring nursing homes’ compliance with Federal standards are in crisis. In letters and data provided to the Committee by every State, the District of Columbia, and Puerto Rico, inspection agencies reported an inability to effectively conduct their jobs due to severe staffing shortages, high turnover rates, and Federal funding that has remained largely flat for the last decade. The Committee found that 31 States and the District of Columbia have vacancy rates of 20 percent or more among the staff responsible for inspecting nursing homes, and nine States have vacancy rates of 50 percent or more. Moreover, a large proportion of the inspection staff on payroll are inexperienced, reducing their effectiveness. Among other key findings the report found that severe staffing shortages hinder nursing home oversight, staff shortages negatively affect resident safety, and states have been forced to turn to contractors to fill gaps despite high costs and potential conflicts of interest. The report formed the centerpiece of a committee hearing; video and texts of the witness statements are available here.

Residents Win Appeal Rights in Supreme Court

Good news from the Supreme Court for Medicaid residents of state-operated nursing homes: after a long-running legal battle, the court has affirmed residents’ right to sue states for violations of federal patient protection laws. And surprisingly, the result wasn’t a close 5-4 decision, but a 7-2 one written by the court’s newest justice–Ketanji Brown Jackson–and joined by conservative members Chief Justice Roberts and Justices Barrett, Gorsuch and Kavanaugh. The court, noted four Health Affairs analysts, “concluded that Medicaid’s Federal Nursing Home Reform Act (FNHRA) establishes two unambiguous federal rights for nursing home residents: the right to be free from any physical or chemical restraints unrelated to treatment; and the right to be protected against arbitrary transfers that fail to satisfy specified conditions including advance notice. The decision strongly reaffirms the ability of Medicaid enrollees to bring federal lawsuits when state officials violate individual rights guaranteed by federal law. The rights to be free from unnecessary chemical restraint and to have advance notice of nursing home discharge are just two examples of the coverage guarantees provided to Medicaid enrollees under federal law. While the Court’s precedents have established a strict test governing when Medicaid enrollees may enforce these rights in federal court, the 7-2 majority confirms that this test is not insurmountable.”

Minnesota Creates SNF Workers Wage and Benefits Board

Minnesota has become the first state to establish a board that will set wages and benefits for nursing home workers. The Minnesota Nursing Home Workforce Standards Board, reports Skilled Nursing News’ Shelby Grebbin, “will set the initial wage limits and working hours by Aug. 1, 2024. Moreover, the board will be responsible for setting minimum employment standards, certifying worker organizations to provide training, and creating curriculum training requirements. Patti Cullen, CEO of Care Providers of Minnesota, said that by design, the board will be able to enact standards that nursing homes across Minnesota will be unable to afford without support from the Legislature. Cullen said that although nursing homes very much want to hire and compensate caregivers to provide access to long-term care to communities, without government funding, they will not be able to do so. In that connection the Minnesota legislature has moved to provide significant new funding–$1 billion–in services for older adults over the next four years, as the state’s population continues to grow older. The funding, currently pending in the Minnesota senate, would involve $412 million for Elderly Waiver, the program used to serve low-income seniors in assisted living, adult day, and other home and community-based services, $80 million of one-time money to workforce incentive grants for caregivers who work in long-term care, $100 million of one-time money for a loan program for financially distressed nursing homes, and other funding.”

Surgeon General Confronts Loneliness Epidemic

US Surgeon General Dr. Vivec H. Murthy has issued a wide-ranging, 82-page call to confront the growing “epidemic of loneliness and isolation” in American society. “Loneliness is far more than just a bad feeling—it harms both individual and societal health. It is associated with a greater risk of cardiovascular disease, dementia, stroke, depression, anxiety, and premature death. And the harmful consequences of a society that lacks social connection can be felt in our schools, workplaces, and civic organizations, where performance, productivity, and engagement are diminished.” Murthy’s report lays out in great detail current trends in societal connectedness and the impact of its absence on a wide spectrum of health outcomes. It then proposes a “National Strategy to Advance Social Connection.” The strategy’s major pillars: a strengthened social infrastructure in local communities; enactment of pro-connection public policies; mobilization of the health sector; reform of the digital environments; deepened knowledge through research; and cultivation of a culture of connection. “We are called to build a movement to mend the social fabric of our nation. It will take all of us—individuals and families, schools and workplaces,

health care and public health systems, technology companies, governments, faith organizations, and communities—working together to destigmatize loneliness and change our cultural and policy response to it. It will require reimagining the structures, policies, and programs that shape

a community to best support the development of healthy relationships.”

CMS Announces Wheel Chair Seat Elevation Reimbursement

Good news for power wheelchair users: CMS has issued a national coverage determination granting them Medicare reimbursement for seat elevation devices. The decision, the Administration for Community Living noted, “follows years of advocacy by disability and aging organizations. Seat elevation devices are critical to power wheelchair users who use them to perform activities of daily living, such as transferring to and from their wheelchair, preparing food, and dressing. Beneficiaries will be responsible for applicable cost-sharing. In their request for Medicare coverage, advocates also asked CMS to cover standing equipment for certain power wheelchairs. CMS is considering that request separately.”

“Narrative Medicine:” A Pathway to Better Patient Care

“In recent years primary care providers like me have started to realize that we need to ask patients about all manner of topics, including domestic violence and whether they have access to a refrigerator if we prescribe a medicine that needs to stay cold. But these efforts have manifested themselves in the form of a rapid “screen-and-refer” approach, which involves asking patients to quickly complete checklists about their social needs and then automatically refer them to social service organizations. The ‘screen-and-refer’ approach has become increasingly popular at hospitals and clinics across the U.S. As I have learned, however, implementation is often flawed and overwhelms the very organizations meant to provide support. Ultimately, this well-intended but poorly executed system is not only ineffective but also dehumanizing — and even potentially harmful to patients. Evidence suggests that a ‘narrative medicine’ approach — in which we take the time to listen to our patients and understand their stories — is a more humane and effective alternative. Narrative medicine is premised on the idea that each patient should be treated as a person with an individual story to be understood, rather than a collection of symptoms to be screened and assessed. I recently experienced the benefits of this approach with a patient who had been to the emergency room several times for chest pain and hypertension. There was an obvious social class divide between myself and my patient in the exam room, as the patient responded to my questions with one-word answers and passive agreement. But once he met a community health worker who had also been incarcerated in San Quentin prison like my patient, the patient immediately felt more comfortable talking about his blood pressure — and eventually admitted to his community health worker that he was functionally illiterate and nervous about being unable to read his medication bottles. The community health worker labeled a ‘sun’ and ‘moon’ pillbox for him to take daytime and nighttime medications with confidence, and the patient hasn’t had chest pain or uncontrolled blood pressure since.” (Stat)

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