“These would be, without question the most important and positive changes in federal nursing home law and policy since the Nursing Home Reform Law was enacted in 1987,” said the Center for Medicare Advocacy’s Senior Policy Attorney Toby S. Edelman. Edelman was reacting to the Biden administration’s announcement of a comprehensive reform agenda aimed at improving the safety and quality of nursing home care, holding nursing homes accountable for the care they provide, and making the quality of care and facility ownership more transparent. The detailed administration proposals cover a wide-range of nursing home concerns that have been raised in numerous studies and forums both before and since the shocking events of the Covid-19 pandemic made front page news. The extensive regulatory measures that HHS will rollout during the coming months include: establishing a minimum nursing home staffing acquirement; reducing resident room overcrowding; reinforcing safeguards against unnecessary medications and treatments; adequately funding inspection activity; expanding financial penalties and other enforcement actions; increasing public transparency of corporate ownership of nursing homes; examining the role of private equity in the nursing home sector; supporting state efforts to improve staff training and workforce sustainability; and ensuring long term care pandemic and emergency preparedness.

The Kaiser Family Foundation has provided an overview of current vaccination require requirements for healthcare workers who participate in Medicare and Medicaid. “Facilities in different states have different deadlines to meet. CMS guidance requires staff to have received their first vaccine dose or have a pending or approved exemption by January 27th in 26 states (25 states plus D.C.), including 25 that did not sue to challenge the rule, and Florida, where courts refused to block the rule. Additional CMS guidance sets a February 14th deadline for staff to have received their first vaccine dose or have a pending or approved exemption request after the Supreme Court allowed the rule to take effect in 24 other states that challenged the rule. Finally, CMS guidance sets a February 21 deadline for Texas, where a lawsuit was dismissed after the Supreme Court’s decision. All guidance specifies that if by the dose one deadline, a facility is above 80%, and has a plan to achieve a 100% single-dose staff vaccination rate within 60 days of the deadline, it will not be subject to additional enforcement action.”

Medicaid recipients are facing a potential shock in the form of a sudden loss of their coverage. The problem, as reported by Kaiser Health News’ Rachana Pradhan, is that “When the public health emergency ends, state Medicaid officials will face a huge job of reevaluating each person’s eligibility and connecting with people whose jobs, income, and housing might have been upended in the pandemic. People could lose their coverage if they earn too much or don’t provide the information their state needs to verify their income or residency. The Biden administration is giving states a year to go through the process, but officials say financial pressures will push them to go faster. Congress gave states billions of dollars to support the coverage requirement. But the money will dry up soon after the end of the public emergency — and much faster than officials can review the eligibility of millions of people, state Medicaid officials say. While most might qualify for insurance through government programs, the ACA insurance marketplaces, or their employers, the transition into other coverage isn’t automatic. ‘Even short-term disruptions can really upend a family,’ said Jessie Mandle, deputy director of Voices for Utah Children, an advocacy group. The covid Medicaid continuous coverage requirement was enacted under the Families First Coronavirus Response Act, which gave states an increase of 6.2 percentage points in federal funds if they agreed to maintain eligibility levels in place at the time. CMS officials said they have worked hand in hand for months to prevent unnecessary coverage loss. They’ve tried to ensure enrollees’ contact information is up to date, monitored rates of unreturned mail, worked with insurers covering Medicaid enrollees, and conducted ‘shadow checks’ to get a sense of who doesn’t qualify, even if they can’t disenroll people. Meanwhile, states still have no idea when the renewal process will begin. HHS has said that it would give states 60 days’ notice before ending the emergency period. The additional Medicaid funds would last until the end of the quarter when the emergency expires — if it ended in April, for example, the money would last until June 30.” 

The New Year gave emergency room patients some reason to feel relief, as implementation of the “No Surprises Act” took hold. As discussed in a CMS fact sheet, “people covered under group and individual health plans can no longer receive surprise medical bills when they seek most emergency services, non-emergency services from out-of-network providers at in-network facilities, and services from out-of-network air ambulance service providers. It also establishes an independent dispute resolution process for payment disputes between plans and providers, and provides new dispute resolution opportunities for uninsured and self-pay individuals when they receive a medical bill that is substantially greater than the good faith estimate they get from the provider. The No Surprises Act supplements state surprise billing laws; it does not supplant them. Thus, as a general matter, as long as a state’s surprise billing law provides at least the same level of consumer protections against surprise bills and higher cost-sharing as does the No Surprises Act and its implementing regulations, the state law generally will apply.”

Eleven years of litigation may have finally ended with a US Court of Appeals decision affirming traditional Medicare beneficiaries’ right to sue for nursing home coverage if they were admitted to a hospital as an inpatient but were then switched to observation care while in the hospital. By being switched, the patients would in most cases have lost the important three-day stay needed to qualify for covered skilled nursing facility care. The latest court ruling has not lessened advocacy groups efforts to have Congress remove the three-day inpatient requirement entirely; the Center for Medicare Advocacy, in a lengthy position statement, makes a strong argument for such action. As do Health Affairs bloggers in an end of year post: “The one aspect of the skilled nursing facility three-day stay waiver-related policy that should be made permanent is to count outpatient observation days in the hospital toward the three-day stay requirement. These outpatient services are held to the same high standard of care as inpatient beds by the Medicare conditions of participation. In June 2015, the Medicare Payment Advisory Commission (MedPAC) unanimously supported an eligibility requirement to allow for up to two outpatient observation days count toward the three-day stay criterion. As part of its reasoning, MedPAC stated that beneficiaries are often surprised to learn they do not quality for Medicare skilled nursing facility coverage because of time spent in outpatient observation beds. Adopting this change is consistent with Congress’ long-standing interest in counting outpatient observation days toward the three-day stay requirement, which has support in bipartisan companion bills (H.R.3650 and S.2048).”

As many Americans begin returning to less restrictive behavior vis-à-vis Covid-19, its stress on the healthcare delivery system continues unabated, not least on the shortage of home care options it has spawned. “Hospitals,” reports MedPage Today’s Kristina Fiore, “stretched by an influx of patients due largely to the Omicron surge are facing the challenge of moving those patients out. ‘Everybody is reporting that they are turning away patients because they don't have adequate staff,’ said Bill Dombi, president of the National Association for Home Care & Hospice. ‘If you're in a hospital, and you're not able to get into a post-hospital care setting, then you're probably going to stay in the hospital. If you're in a nursing home and you can't get home care, then you'll stay there. If you're discharged home, then you're scrambling to put together supports for yourself, like family members or volunteers from church groups.’"

Adds Kaiser Health News’ Judith Graham, “Because comprehensive data isn’t available, the scope and impact of current shortages can’t be documented with precision. But anecdotal reports suggest the situation is severe. Despite growing needs for home care services, the vast majority of pandemic-related federal financial aid for health care has gone to hospitals and nursing homes, which are also having severe staffing problems. Yet all the parts of the health system that care for older adults are interconnected, with home care playing an essential role. Echoing Bill Dombi, Abraham Brody, associate professor of nursing and medicine at New York University, explained these complex interconnections: ‘When frail older patients can’t get adequate care at home, they can deteriorate and end up in the hospital. The hospital may have to keep older patients for several extra days if home care can’t be arranged upon discharge, putting people at risk of deteriorating physically or getting infections and making new admissions more difficult. When paid home care or help from family or friends isn’t available, vulnerable older patients may be forced to go to nursing homes, even if they don’t want to. But many nursing homes don’t have enough staffers and can’t take new patients, so people are simply going without care.’”

Sounding an alarm on another aspect of Covid-19 induced health facility staffing problems, Justice and Aging has voiced concerns over declining training standards for SNF nursing aides. “Federal nurse aide training standards have been largely waived during the COVID emergency. When the emergency declarations end, however, all ‘temporary nurse aides’ are required by federal law to receive training and pass tests in order to work as permanent nurse aides. It is in the interests of both nurse aides and nursing facility residents that aides receive all required training. But the nursing facility lobby has argued for “grandfathering” of temporary nurse aides into permanent certification, and the federal government unfortunately has moved in that direction. Specifically, the Centers for Medicare & Medicaid Services (CMS) has given states and nursing facilities leeway to retroactively count nurse aide work hours as training hours, and some states have exploited that leeway to significantly weaken nurse aide training requirements for permanent certification. This is a public policy mistake, as illustrated by the flimsy mechanisms used by some states to claim that past work in likely understaffed facilities during the pandemic was actually meaningful and comprehensive training. In some states, these mechanisms allow for certification with no actual training aside from the aide’s initial on-line class. After two years of the COVID emergency, there is broad agreement in the nursing facility world that nurse aides deserve more respect and support for their difficult, vital work. That respect is best shown by increasing wages, benefits, sick leave, and opportunities for professional advancement. Reducing nurse aide training requirements — by claiming after the fact that training was completed during routine work hours in likely understaffed facilities — is counterproductive, and harmful to nursing facility residents and staff.”

Meanwhile, the National Consumer Voice for Quality in Long Term Care has drawn attention to SNF staffing levels. “Twenty years after a CMS study found that at least 4.1 hours per resident per day (hprd) of direct care nursing staff time are needed just to prevent poor outcomes, state staffing requirements, with a few exceptions, are nowhere near that recommended level. Only the District of Columbia requires this overall level of staffing, and only six states mandate the presence of a registered nurse 24 hours a day regardless of facility size. Despite what is known about the relationship between staffing levels and quality care, staffing standards in almost every state remain severely low. Within the past year there have been changes in the staffing standards of a number of states. Four states— Arkansas, Connecticut, New York, and Rhode Island—passed legislation. Both New York and Rhode Island established a direct care minimum, while Connecticut increased its direct care minimum requirement. In Arkansas, the staffing standard changed from a per shift ratio to hprd. Two states, Arkansas and Rhode Island, define ‘direct care staff”/direct caregiver’ to include non-nursing staff such as licensed physical or occupational therapists, and licensed speech-language pathologists. Arkansas has further broadened the definition of ‘direct care staff’ to physicians, physician assistants, and ‘other licensed or certified healthcare professionals.’ At the same time, Oregon and South Carolina lowered their staffing standards, stating that the change was for a limited period of time.”

Ohio State University researchers have concluded that the Self-Administered Gerocognitive Examination (SAGE) can detect mild cognitive impairment (MCI) conversion to dementia at least 6 months sooner than the Mini-Mental State Examination (MMSE). Being self-administered, SAGE addresses a critical need of removing some barriers in performing cognitive assessments. For the clinical provider who longitudinally manages those with cognitive issues, SAGE also has advantages of time efficiencies in busy clinical practices, and consequently may more likely be administered and repeated regularly over time.

Canadian researchers have published an intriguing study finding that “A high level of education, superior academic performance and excellent written language skills may predict the reversal of mild cognitive impairment (MCI) to normal cognitive (NC) function. Investigators,” writes Medscape’s Pauline Anderson, “found individuals with these factors, which are all markers of cognitive reserve, had a significantly greater chance of reversion from MCI to NC than progression from MCI to dementia. The researchers used five measures from the Consortium to Establish a Registry for Alzheimer's Disease neuropsychological battery to categorize subjects: Delayed Word Recall, Verbal Fluency, Boston Naming, Constructional Praxis, and the Mini-mental State Exam. The study population consisted of elderly nuns from the School Sisters of Notre Dame. Results showed 472 of the 619 participants had MCI during the study period. About 30.3% of these showed at least one reverse transition from MCI to NC during a mean follow-up of 8.6 years; 83.9% went on to develop dementia. This shows converting from MCI to NC occurs relatively frequently, study author Suzanne Tyas PhD noted. ‘This is encouraging because some people think that if they have a diagnosis of MCI they are inevitably going to decline to dementia.’” 

The controversy over the future of Aduhelm, Biogen’s Alzheimer’s disease, has shown no signs of abating, given the thousands of comments submitted to CMS in response to its tentative January decision to severely limit Medicare and Medicaid coverage of the medication. As the Kaiser Health News’ Arthur Allen reports, “While groups representing the pharmaceutical industry and patients press to undo Medicare’s decision, industry critics applaud the Centers for Medicare & Medicaid Services for throwing obstacles in the way of a drug they think the FDA should never have approved in the first place. For the industry, the campaign has a broader existential target: to prevent CMS from using its payment decisions to keep FDA-approved drugs off the market. But In recent years, critics say, FDA programs to speed approval of new drugs have led to a rash of entries with often minimal scientifically sound evidence to prove they work. Aduhelm is the first FDA approval for a class of laboratory-made antibodies designed to clear away so-called amyloid plaques, which gradually accumulate in the brains of people with Alzheimer’s disease. In clinical trials, Aduhelm did well dissolving the plaques, but its impact on the functioning of patients in earlier stages of Alzheimer’s was so meager that an expert panel voted 10-0 (an 11th panelist was uncertain) in November 2020 to advise FDA to reject it. The FDA gave ‘provisional approval’ to Biogen, the maker of Aduhelm, allowing it nine years to provide evidence that the drug slows the progression of Alzheimer’s.” CMS’s final coverage decision is expected by April.

University of Pennsylvania researchers have added to the evidence of the critical role family caregivers assume in meeting their loved ones’ long-term care needs, in both residential care facilities, and nursing homes. In a Health Affairs study, the authors document the considerable “front-line” work the “invisible” family workforce provides. “Informal caregiving and some of the associated burdens do not end when a person transitions from the community to residential care or a nursing home setting. It also points to the large role that families play in the care and well-being of these residents, which is especially important considering the recent visitor bans during the COVID-19 epidemic. Family members are an invisible workforce in nursing homes and residential care facilities, providing considerable front-line work for their loved ones. This work could be acknowledged more formally in several ways, such as integrating family caregivers into the care team, prioritizing safe visits from family members during emergencies, and including family caregivers in prioritization formulas for vaccines during future pandemics. Integration of family members could also be achieved by paying them for their care, providing formal training, adopting more explicit integrated care models in which formal and informal care providers coordinate their activities to deliver personalized care, and acknowledging that informal caregiving sometimes serves as a substitute for rather than a supplement to formal care.”

From the United Hospital Fund comes a new report addressing the transition from SNF to home following a period of rehabilitation. The publication contains detailed interventions and tools for improving the transition process, as well as an extensive categorized resource library. “Inadequate preparation for transitions,” UHF observes, “frequently places frail and otherwise vulnerable older adults at risk of overuse of acute care services, declining health, permanent SNF residency, and high levels of stress, anxiety, and dissatisfaction. For Medicare beneficiaries with multiple chronic conditions, lower socioeconomic status, dual Medicare/Medicaid eligibility, cognitive impairment, or limited English proficiency, the risk of poor outcomes is even higher. As the population ages and the prevalence of chronic disease rises, safe, effective, and person-centered transitional care plans will become even more essential. To ensure that transitions succeed, SNFs will need to play a central role in developing and facilitating them so that patients and families are better equipped to manage their care.”

At one end of the Covid-19 self-protection spectrum: 70,000 maskless, packed-together, cheering Super Bowl LVI ticketholders. Meanwhile, reports the New York Times’ Amanda Morris and Maggie Astor, “More than seven million adults in the United States, or about 3 percent, are characterized by health professionals as immunocompromised because of a disease, medication or other treatment that weakens their body’s immune response, meaning that diseases such as Covid-19 can be more deadly to them, and that vaccines offer less protection. Tens of millions more Americans have at least one medical condition, such as asthma or diabetes, that puts them at greater risk from Covid. How much greater can vary widely; many live with little worry, while others at higher risk have felt the need to isolate from society – sequestering at home, keeping their children out of school and skipping medical care rather than risk exposure to the virus. And they have seethed over talk from politicians and public health experts that they perceive as minimizing the value of their lives. Take Denisse Takes, whose world is very small these days. Even as her social media feeds are flooded with friends and family members returning to their normal lives, she sees no one except for her husband, who donated his kidney in 2015 so that Ms. Takes, 37, could receive a compatible donor’s kidney in return. The medication that keeps her immune system from rejecting the organ also suppresses it from creating antibodies in response to a coronavirus vaccine. Her body is so bad at fighting off infection that she has gone to the emergency room with common colds.”

A prestigious British commission organized by the Lancet has published a 48-page report that, as Medscape’s Peter Russell reports, “calls for a fundamental re-assessment of dying in a world where public attitudes to death and grieving, and access to end-of-life healthcare have become ‘unbalanced’. Although many people face an over-medicalised death, others are more likely to remain undertreated, dying of preventable conditions, and without access to basic pain relief, according to the Lancet Commission on the Value of Death. ‘Health care is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. As a result, futile or potentially inappropriate treatment can continue into the last hours of life, with the roles of families and communities ‘replaced by professionals and protocols’. Mpho Tutu van Furth, a priest from the Netherlands, and report co-author, commented: ‘We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological, and spiritual event, and when we understand it as such, we more rightly value each participant in the drama.’ As author and futurist Ian Morrison, who described himself as a Scottish-Canadian-Californian, once said: ‘Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.’ The Lancet Commission authors say that, as things stand: ‘The world is moving more in the direction of California than that of Scotland.’”

An accompanying Lancet comment observes that “The Commission offers a vision of a new system for death and dying underpinned by five principles—tackling the social determinants of death, dying, and grieving; seeing death as a relational and spiritual process; enabling networks of informal and formal care; normalizing conversations and stories of death, dying, and grief; and recognizing death has a value. This framing points to ways to improve the experience of death and dying globally.” At the same time, the comment authors caution, “what happens when the death of those who speak out against the state or who are members of minority communities is pursued by a political regime, or when dying is on such a scale that the death system breaks down, such as in Yemen, and Syria, and increasingly in Afghanistan? In these cases death and life will struggle to be “rebalanced” as the Commission proposes.”

The pandemic’s death toll and its cruel manifestation in lonely and isolated mortality has engendered an expanding group of caregivers: death doulas, coaches who help the terminally ill be at peace with dying. As Melissa Chan writes in Time Magazine, “Whereas birth or labor doulas provide support and coaching at the start of life, death doulas step in to do the same, at the end of life. Since COVID-19 emerged in early 2020, organizations that support and train U.S. death doulas have seen significant spikes in membership and enrollment. The National End-of-Life Doula Alliance grew to more than 1,000 members in 2021, from just 200 in 2019. Since doulas do not administer or prescribe medication, the industry is unregulated and does not require a license. Most prospective doulas take training courses that several organizations offer in person or online for as little as $40 up to $1,000. The lessons are as scientific as they are emotional. Depending on the courses, which can span weeks, prospective doulas typically learn how to identify end-of-life stages. They study the 10 most common terminal illnesses and their leading or unique symptoms. They learn the physiology of how the human body works, the order in which organs usually shut down. Some courses focus on how to care for a terminally ill child, while others teach doulas simply how to talk to families. Death doulas often work in tandem with hospice workers, who are authorized to give pain-relief medication, treat wounds, monitor vitals and assist in other clinical tasks that the doulas aren’t qualified to do. But death doulas, who are usually less restricted by work schedules, step in to fill the emotional voids, says Michelle Thornhill, 52, who has been a death doula for 12 years. They can help write farewell letters or stockpile memos to surviving loved ones for milestones they’ll miss, such as weddings, birthdays and graduations. They can listen to someone’s life story for hours on end or hear out their proudest moments and worst mistakes. Upon request, death doulas can make sure Whitney Houston is playing in the background, fill the house with scents of Christmas cookies at the moment of death or find new homes for pets that will be left behind.”

The Wall Street Journal headline told at all: “Caring for Older Relatives is so Expensive that even AARP’s Expert Filed for Bankruptcy.” As the Journal’s Clare Ansberry writes, “Amy Goyer is AARP’s family and caregiving expert. She has written two books on the subject and has her own consulting business. Ms. Goyer depleted her savings and ended up relying on credit cards after being financially drained by costs related to caring for her parents. After more than a decade of caring for her mom, who had a stroke, and her dad, who had Alzheimer’s, Ms. Goyer filed for bankruptcy protection in 2019. In 2018, the year her dad died, her credit-card debt topped $120,000, with a large amount representing high interest rates on unpaid balances. She went to consumer-credit counselors and called credit-card companies trying unsuccessfully to get lower interest rates. Bankruptcy was demoralizing. “I feel like even friends judge me,” says Ms. Goyer. She has no savings and must rebuild her credit rating. Still, she has no regrets about the care she gave to her parents or its cost. “I made my choices and did my best for my parents,” she says. ‘If it can happen to me, it could happen to anyone.’”

FCA is committed to serving family caregivers of all backgrounds and experiences. For caregivers who have difficulty with English, or are more comfortable in another language, FCA has provided a short overview video of our resource rich website in Tagalog, Vietnamese, Chinese, and Spanish.

"Picking up the pace of change: scaling services for a changing caregiver profile," is a new report from researchers at UC Davis. This study focuses on evaluating the services and support that the California Caregiver Resource Centers - CRCs (FCA is the San Francisco Bay Area CRC), have been providing to caregivers in California. With the release of the report, Kathy Kelly shares her unique insights as the Executive Director of FCA in a new video. 

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