Pres. Biden’s call for wide-ranging reform of America’s nursing homes has sparked considerable reaction from the nursing home industry, resident advocacy groups and researchers. “The Biden administration has identified core impediments to better nursing home care in its proposed overhaul of the industry,” writes Kaiser Health News’ Jordan Rau, “but turning aspirations into reality will require a complex task: mandating adequate staffing levels for all homes without bankrupting those that can’t afford far higher labor costs. The centerpiece of the effort is establishing minimum staffing levels for facilities. To date, the Centers for Medicare & Medicaid Services requires ‘adequate’ staffing but specifically mandates only a skeleton crew of round-the-clock nursing coverage and one registered nurse who works at least eight hours each day. CMS has rebuffed requests to mandate higher staffing levels in the past, saying each facility should “make thoughtful, informed staffing plans.” But multiple examinations — including a thorough CMS study in 2001 — have concluded staffing levels are frequently inadequate, particularly on nights and weekends. Studies have found that homes with higher staffing levels have fewer patient injuries. The 2001 study set a standard that many nursing homes currently don’t meet, saying optimal care required roughly one staffer for every seven short-stay patients — like those recovering from a hospital stay — and one staffer for every six long-stay residents. Biden is ordering CMS to conduct a similar study and incorporate it into a formal proposal within a year. Achieving increased SNF staffing levels will not be an easy task. How difficult is indicated in new statistics published by the Long Term Care Community Coalition (LTCCC):

Entering the debate and highlighted by the Center for Medicare Advocacy, researchers in a newly published study have found that daily variation in nurse staffing levels (registered nurses (RNs) and certified nurse assistants (CNAs)), described as “instability of staffing levels,” negatively affects quality of care for residents. CMA notes that “although consumers recognize the importance of staffing hours in general, they may not understand that daily staffing variability is also associated with quality. Everyday tasks, such as medication administration and monitoring, can be adversely affected by both inadequate staffing and a lack of stability in staffing availability. During low staffing days, when residents do not receive needed care, they are more likely to develop various conditions, such as pressure injuries, because staffing was not sufficient to rotate them in bed; exacerbation of wounds when staff is not available to change dressings in a timely fashion; falls with injuries without consistent daily attention to anticipating needs, such as requiring assistance in getting to the bathroom. Most of these consequences of short staffing cannot be fixed by additional staff on other days: more turning or toileting on extra-staffing days cannot eliminate the fall or the wound development that occurred when understaffed. The researchers also found that for-profit nursing facilities, especially those owned by chains, have less stable staffing levels than other facilities.”

The nursing home industry has been quick to respond to the staffing debate. “There are two important aspects of the staffing situation that we believe the Administration should consider,” Mark Parkinson, President and CEO of the American Health Care Association, wrote HHS Secretary Xavier Becerra: “1) We want to hire more caregivers, but there are no workers to hire. Nursing homes have lost 238,000 workers since the beginning of the pandemic. This is a problem that is unique to long term care. Hospitals, physician offices, outpatient care centers, and home health organizations are above or near pre-pandemic employment levels. Skilled nursing is 15 percent below pre-pandemic levels, and workforce levels within the entire long term care industry are at a 15-year low. Virtually every nursing home in the country is short staffed and increasingly having to rely on expensive temporary staffing agencies (if it can find an agency); 2) Even if the caregivers were there, the resources needed to invest in them are not. More than 60 percent of our residents rely on Medicaid, but the program does not adequately fund the actual cost of care. While we appreciate many of the reform proposals put forth in the Administration’s plan, we think a more thoughtful and results oriented approach is the Care For Our Seniors Act—a bold nursing home reform plan AHCA released last year with LeadingAge. We recognize the need to hire more caregivers and offer more private rooms, among other ongoing improvements, but we must also recognize that the government funding to bring forth these improvements is not currently there.” 

Not so fast, the Center for Medicare Advocacy (CMA) retorted: “Stop Whining, Be Part of the Solution. Recognizing the need for change in multiple areas, President Biden proposes meaningful and essential changes in staffing, oversight, transparency of information about ownership and finances, and much more. And how do nursing home executives and owners respond? They complain that they need more money. ‘In the 45 years I have advocated for nursing home residents, I have heard two recurring themes from the nursing home industry: regulate us less and pay us more,’ said CMA’s Senior Policy Attorney Toby S. Edelman. ‘The nursing home industry is not over-regulated and underpaid. Facilities regularly ignore regulations with no consequence, in an oversight system that too often looks the other way when residents are harmed and suffer. The billions of dollars that nursing facilities receive from Medicare and Medicaid, the billions they receive in special COVID-19 funding, and the billions more in public benefits relied on by their underpaid workers belie the claim that facilities struggle financially.’” What’s more, the Center asserted, “what is most shocking about the AHCA March letter and more recent statements is that many of the specific recommendations made by President Biden in his reform agenda are so similar to recommendations put forward just a year ago by AHCA, along with LeadingAge, in their own legislative proposal (the Care For Our Seniors Act). CMA’s side-by-side Biden-AHCA comparison chart,” the Center argues, “finds a significant number of similarities.”

Kaiser Health News’ Judith Graham points to one missing piece amid the far-reaching reforms contained in the Biden administration’s nursing home proposals. To family caregivers’ dismay, she writes, “the proposals don’t view them as ‘essential caregivers.’ The reforms call for minimum staffing requirements, stronger regulatory oversight, and better public information about nursing home quality — measures advocates have promoted for years. Yet they don’t address residents’ rights to have contact with informal caregivers — family members and friends who provide both emotional support and practical assistance. That’s been a painful concern during the pandemic as nursing homes have locked down, caregivers have been unable to visit loved ones, and a significant number of residents have become isolated, discouraged, or depressed. ‘What we learned is that family members’ support is absolutely essential to the well-being of residents,’ said Mairead Painter, Connecticut’s long-term care ombudsman. ‘We need to make sure that the far-reaching restrictions put in place never happen again.’ Meanwhile, nationally, the Essential Caregivers Act of 2021 is languishing in the House Ways and Means health subcommittee (In California a similar bill, AB 2546 (Nazarian), was introduced at the beginning of the year and is scheduled to be heard next by the Assembly Committee on Aging and Long Term Care).” 

New research, Graham’s article points out, “confirms the extent of assistance that family caregivers provide. Using national survey data from 2016, researchers from the University of Pennsylvania reported in a recent Health Affairs study that informal caregivers helped 91% of nursing home residents who needed aid with medications; 76% of residents who required assistance with self-care tasks such as bathing or dressing; 75% of residents who had problems such as getting in and out of bed or moving across a room; and 71% who required aid with household tasks, such as managing money. On average, this care from informal caregivers amounted to 37 hours a month. In addition to the harmful effect on residents, the loss of this assistance during the pandemic placed extra burdens on already-stressed nursing home workers, contributing to the staffing crisis that afflicts long-term care, said Dr. Rachel Werner, a co-author of the study. ‘The discussion we should be having is how to support informal caregivers in long-term care facilities, whether we’re in a pandemic or not, by acknowledging what they do, giving them more training, and making them part of care teams and the care planning process.’ At the same time, Robyn Grant, director of public policy and advocacy at the National Consumer Voice for Quality Long-Term Care added a note of caution. ‘One of the things we’re concerned about is that family members and the assistance they provide might be looked at, in some cases, as part of a solution to short-staffing in nursing homes. Yes, family members can help, and we want to make sure that their access to long term care facilities is ensured. But they can’t be seen as a substitute for staff.”

While nursing home reform proposals focus on the existing structure and operation of most long-term care facilities, a push for fundamental conceptual and organizational change in eldercare continues apace. The Long Term Care Community Coalition (LTCCC) has added to that effort in its issue brief “Consumer Perspectives on Nursing Home Culture change.” ‘Culture change’ is a movement that seeks to transform nursing homes from large institutional settings based upon a

Millions of people, writes the Center on Budget and Policy Priorities’ Farah Erzouki, “have been enrolled in Medicaid without interruption during the COVID-19 public health emergency (PHE), through what’s known as the “continuous coverage” requirement. This provision has kept millions of people covered during the pandemic, ensuring they have access to health care services, including COVID testing, treatment, and vaccines. Once the federal government ends the PHE, which is expected to happen no sooner than mid-July, states will resume their regular processes and begin reviewing all enrollees’ eligibility. The risk of mass coverage loss is high — experts estimated in recent months that over 15 million people will lose their coverage at the end of the PHE. This is because once the PHE ends, Medicaid beneficiaries will be required to submit updated information about their circumstances and caseworkers will have to determine if they remain eligible for coverage. People who are eligible can lose coverage for a myriad of reasons, ranging from mailed notices not reaching beneficiaries so they don’t know they need to submit new paperwork to understaffed state agencies missing information that is submitted.” Erzouki offers a series of steps states can take to minimize coverage losses including: 1) maximizing “ex parte renewals” — this is when an enrollee’s coverage is automatically renewed based on information in their case or electronic data sources and the enrollee isn’t required to return a form or take any action to maintain Medicaid coverage; 2) communicating with enrollees before the end of the PHE about updating their address; 3) using multiple methods to reach individuals whose mail comes back as returned, such as through email or text; and 4) exploring new data sources from non-traditional partners, such as the Department of Motor Vehicles or the Health Information Exchanges, which may have more up-to-date contact information to successfully reach enrollees. Complementing Erzouki’s recommendations, CPBB also provides a 10-point FAQ guide to the Medicaid coverage issue.

Home and Community Based Services (HCBS) held the attention of a March Senate Special Committee on Aging hearing as witnesses urged congressional support for increased HCBS investment.

Since January 1 patients have enjoyed federal protections against “surprise” medical bills. While too early to judge the laws effectiveness, some preliminary assessments have largely affirmed it is working as intended. With the “No Surprises Act,” writes Kaiser Health News’ Victoria Knight, “consumers are shielded from most out-of-network bills for emergency care provided when patients must go to the closest medical facility and can’t check the network status of the facility or emergency room physicians. They also may stem from nonemergency hospitalizations or surgeries at an in-network facility that involve a provider, such as an anesthesiologist or radiologist, who is out of network and bills separately. Before the law, patients could be left on the hook for charges much higher than their insurer’s in-network negotiated rate because their health plan might pay only part of the bill or deny the claim completely It’s important, however, for consumers to be aware that while the No Surprises Act will protect them from most out-of-network bills, they could still receive other types of surprising bills because the U.S. has such a complex health care system. While effective, the law is not infallible.”

Furthermore, adds KHN’s Dan Weissmann, although the law’s protections apply to hospitals, “they do not apply at many other places, like doctors’ offices, birthing centers, or most urgent care clinics. Air ambulances, often a source of exorbitant out-of-network bills, are covered by the law. But ground ambulances are not. In addition, out-of-network providers may present patients with a form addressing their protections from unexpected bills, labeled ‘Surprise Billing Protection Form.’ Signing it waives those protections and instead consents to treatment at out-of-network rates. ‘The form title should be something like the I’m Giving Away All of My Surprise Billing Protections When I Sign This Form, because that’s really what it is,’ said Public Interest Research Group’s Paticia Kelmar. It is against the law for some providers to give you this form at all. Those include emergency room doctors, anesthesiologists, radiologists, assistant surgeons, and hospitalists. If you notice a problem you can fight back, including making use of a federal hotline (1-800-985-3059) and a website for reporting all violations of the new law barring surprise bills. Both the hotline and website help patients figure out what to do, as well as collect complaints.”

Kaiser Family Foundation researchers have documented the significant role telehealth mental health services have played since the onset of Covid-19 – and the prognosis for its future growth. “Telehealth represented less than 1% of outpatient care before the pandemic (rounding to zero) for both mental health and substance use and other concerns. However, at its pandemic peak, telehealth represented 40% of mental health and substance use outpatient visits and 11% of other visits (during the March- August 2020 period). Since then, in-person care has returned and telehealth visits have dropped off to represent 5% of other outpatient care visits, those without a mental health or substance use claim in the March-August 2021 period. However, telehealth use has remained strong for mental health and substance use treatment, still representing 36% of these outpatient visits. The adoption of telehealth varies based on the health needs of patients, their readiness and ability to adopt the technology, and the restrictions or incentives they face from payers and providers. Looking at the most recent study period (March-August 2021), a relatively high share of patients in rural areas relied on telehealth to receive outpatient mental health and substance use services (55%) compared to those in urban areas (35%). This pattern is especially pronounced in comparison to other outpatient health care services, where we observed a similar rate across urban and rural (5% vs. 6%) areas. Payers’ and regulators’ policies governing telehealth services continue to evolve. Medicare has permanently removed geographic restrictions for mental health and substance use services and permanently allows beneficiaries to receive those services at home. Also under the Physician Fee Schedule final rule, CMS will now permanently cover audio-only visits for mental health and substance use services, though only when the beneficiary is not capable of, or does not consent to, the use of two-way, audio/video technology.”

Alzheimer’s research is set to receive a major funding infusion as both Democratic and Republican congressional leaders agreed to send an additional $289 million to the National Institutes of Health. In addition, the agreement will provide $25 million to implement the Bold Infrastructure for Alzheimer’s Act (PL 115 – 406), which directs the Centers for Disease Control and Prevention (CDC) to strengthen the public health infrastructure across the country by implementing effective Alzheimer's interventions focused on public health issues.

Meanwhile, reports Kaiser Health News’ Judith Graham, AD patients remain divided over broad access to controversial drug Aduhelm (aducanumab): “Is it a risk I’m willing to take or just a magic pill?’ With a final Medicare coverage decision expected soon, Graham writes, Alzheimer’s advocacy organizations have been reflecting their constituents mixed reactions to the drug’s FDA approval. “The Alzheimer’s Association and UsAgainstAlzheimer’s, the most influential advocacy organizations in the field, are pushing for Medicare to cover Aduhelm’s $28,000 annual cost and fiercely oppose the Centers for Medicare & Medicaid Services’ January proposal to restrict coverage only to people enrolled in clinical trials. ‘With respect, we have no more time for debate or delay,’ the Alzheimer’s Association national Early-Stage Advisory Group wrote in a Feb. 10 comment. ‘Every passing day without access to potential treatments subjects us to a future of irreversible decline.’ For its part, UsAgainstAlzheimer’s called CMS’ proposal ‘anti-patient.’ But other organizations representing people living with dementia are more cautious, calling for more research about Aduhelm’s effectiveness and potential side effects. More than 40% of people who take the medication have swelling or bleeding in the brain — complications that need to be carefully monitored. The Dementia Action Alliance, which supports people living with dementia, is among them. Said CEO Karen Love: ‘DAA strongly supports CMS’s decision to limit access to people enrolled in qualifying clinical trials in order to better study aducanumab’s efficacy and adverse effects.’” 

The Equal Employment Opportunity Commission has issued updated guidance on the pandemic’s effect on caregiver discrimination under federal employment discrimination laws. “Caregiver discrimination,” EEOC states, “violates federal employment discrimination laws when it is based on 1)an applicant’s or employee’s sex (including pregnancy, sexual orientation, or gender identity), race, color, religion, national origin, age (40 or older), disability, or genetic information (such as family medical history); 2) on an applicant’s or employee’s association with an individual with a disability, within the meaning of the ADA, or on the race, ethnicity, or other protected characteristic of the individual for whom care is provided; and 3) on intersections among these characteristics (for example, discrimination against Black female caregivers based on racial and gender stereotypes, or discrimination against Christian female caregivers based on religious and gender stereotypes). In 17 Q&A sections, the Commission covers such matters as: employees limited rights under federal employment discrimination laws to reasonable accommodations such as telework, flexible schedules, or reduced travel or overtime because they are caregivers, harassing conduct related to employees’ caregiving responsibilities during the pandemic, and male employees’ protection against caregiver discrimination based on sex.” 

Pamela Kunz, who was named the 2021 Woman Oncologist of the Year, is director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and of the Yale Cancer Center, New Haven, Connecticut. But, writes Medscape’s Sharon Worcester, “she was propelled into quite a different role when her mother was admitted to the hospital. Her mom, who has trouble hearing, was easily confused by jargon and by ‘all of the people coming in and out with no introductions,’ she explained. ‘She needed someone to translate what was going on because she didn't feel well.’

Where and in what circumstances is it best to die? At home, in-home hospice care, in-hospital, in-hospital hospice care, with palliative care? At home, people tell researchers, according to the New York Times Paula Span, “in familiar surroundings, in comfort, with the people they love.

That wish has become more achievable. In 2017, according to an analysis in The New England Journal of Medicine (NEJM), home surpassed the hospital as the most common place of death — 30.7 percent of deaths occurred at home, compared with 29.8 percent at the hospital. “It’s probably the first time that’s happened in the United States in modern times,” said Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and an author of the study, published in 2019. Dr. Warraich credited the change to the rise of hospice care, for which Congress authorized Medicare coverage 40 years ago. By 2019, more than half of Medicare beneficiaries who died were enrolled in hospice. ‘There’s been a cultural shift,” he said. “People don’t want to die in hospitals, and hospice helps make that possible.”

But not always. Span draws upon a recent NEJM article that argues that “alternative locations, including free-standing inpatient hospice facilities and hospice units within hospitals, could better care for some terminal patients with difficult symptoms and provide relief for exhausted families. The article also contends that financial incentives play a role in where death occurs. ‘There’s a lot of cultural pressure: If you really loved this person, you’d keep them at home,’ said lead author, Dr. Melissa Wachterman, a palliative care specialist at Harvard Medical School. ‘We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.’ Ninety-eight percent of hospice patients covered by Medicare receive what is called ‘routine home care.’ The hospice organization sends nurses, aides, a social worker and a chaplain, in addition to drugs and equipment like a hospital bed, to the patient’s home. But it can’t provide 24-hour care; that falls to family or friends, or helpers paid out of pocket. Often, that’s sufficient. But death can follow unpredictable trajectories, and some terminal conditions appear better suited to home death than others. Cancer patients have the greatest odds of dying at home, while patients with dementia are most likely to die in a nursing home, and those with respiratory disease in a hospital. Some patients ‘may not need someone at the bedside 24 hours a day, but they need someone available 24 hours a day,’ Dr. Wachterman said. A handful of hospice patients receive ‘continuous home care,’ which means nurses and aides are provided eight to 24 hours a day. The authors advocate expanded access to continuous home care and lower barriers to inpatient end-of-life care, in hospice facilities or hospice units within nursing homes and hospitals. ‘For many patients, home’ isn’t the physical place, the VA’s Dr. Warraich said. ‘It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.’”

Dementia is unlike cancer, when it comes to terminally ill Medicare hospice coverage. And that difference has resulted in a start and stop benefit for many dementia sufferers. As the Washington Post’s Emily Harris reports, “Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life. For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live. Today, the average hospice patient is very different. About half have dementia and predicting when a patient with dementia has only six months to live is difficult. Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill and Medicare will continue to reimburse for that extra time. But reality can be more complicated. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars. ‘For those people living at home, there’s not really any other services out there that provide the same level of support,’ says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF. So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward. Without a change in the six-month rule, however –which would require a change in the Medicare statute -- many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services could be added later.”

“I was my mom’s caregiver for 15 years,” writes Robrt L Pella, recalling his experience with palliative care. “Nine years into caregiving, someone from Hospice of the Valley, Arizona's foremost end-of-life care agency, came to see if Mom really needed anything. By then I'd been turned down for every service I'd applied for — adult daycare, in-home respite care, financial assistance — so my hopes weren't high. Not what I was expecting, I wrote in my journal. A woman named Maribeth Gallagher, who referred to herself as 'a former chick singer,' came to do a dementia consult. She sang to Mom and then played a hand of gin with her. I'd forgotten how hospice workers could be. They showed up in your life like a long-lost friend who happened to have a medical degree, full of good cheer and wise advice and a box of rubber gloves.

Palliative care is for life-limiting conditions, she explained, and is about symptom management. Because hospice is structured similarly, and more hospices are offering palliative programs, people like me are confused. It sometimes felt like these people were looking after me more than they were my mother. I didn't always love this. Nadia, one of the social workers assigned to Mom's care, was always after me to put her in a hospice facility for a couple weeks so I could get a little rest. ‘It's something we can provide,’ she told me each week. ‘We'd take excellent care of her!’ I didn't doubt it, but it felt too much like dropping Mom off at a kennel. At the end, although she lingered for eight long months, and despite the fact that Mom's insurance squawked, hospice hung in there. My mother died at home in a hospital bed with an electricized mattress designed to prevent bed sores; she was bathed by Daria and doted on by nurses who devised solutions for every end-of-life ailment Mom came up with on her way out. From where I was sitting, in a chair beside my mother's death bed, end-of-life hospice care didn't look all that different from the palliative care we'd been getting for years. Except this time, they behaved, very subtly, as if they had two patients: My mother, who was dying, and her youngest son, who needed a roomful of people with whom to discuss her leaving.”

Rita Landgraf has been nominated for the position of Assistant Secretary of Aging and Administrator of the Administration for Community Living (ACL). Ms. Landgraf served as Cabinet Secretary of the Delaware Department of Health and Social Services (DHSS) from 2009 to 2017. In that capacity she oversaw Medicaid, aging and disability services, and a number of other health and human services programs. She also has a wide range of experience in aging and disabilities services, including time as President of AARP Delaware, Executive Director of the National Alliance on Mental Illness Delaware, and Executive Director of the Arc of Delaware.

The National Academy of Medicine will host a public workshop May 16-17 that will examine opportunities to better support family caregiving for people with cancer or other serious illnesses. Featured presentations and panel discussions are expected to focus on such topics as strategies to better capture, understand, and act on family caregiver input and experience to improve patient care and to support family caregivers; research gaps and opportunities to improve the evidence base to guide caregiving for patients with serious illnesses; and potential policy and practice opportunities to support family caregivers and advance family-centered care for serious illness, including new models of care delivery and payment.

Free registration is available for the 2022 World Carers Conversation scheduled virtually for May 19. Further information is available here. 

Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Production: Calvin Hu

Send your feedback or questions to akkaplan@verizon.net or info@caregiver.org.

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