Vol. 26, No. 2 | Marc 2024

THE POWER OF SHARING

"Early on the morning of Friday, Nov. 10, my phone rang with terrible news: My wife, Nancy, has a highly aggressive form of breast cancer. Ever since the deep darkness of that November phone call, Nancy and I have experienced countless bursts of light shining through, each one coming through the love and care from other people. My son immediately decided to give up his final quarter of in-person college and take his last classes online, so that he could move across the country back home to help his mom. Our church small group immediately started organizing meals. My friends from college raked our leaves so that I could sit with Nancy in chemotherapy. My fantasy baseball league collected funds for wigs. The reason for our revival is rooted in a profound truth elegantly captured by an old Swedish proverb: ‘Shared joy is double joy. Shared sorrow is half sorrow.’ If you follow my writing, you know that I’m deeply concerned with the subject of friendship. As Surgeon General Vivek Murthy wrote last April, we are a ‘lonely nation.’ Men and women have fewer friendships. An alarming percentage of Americans report having no close friends at all. The key word in the Swedish proverb is ‘shared.’ You don’t just tell me the reason for your sorrow or joy, and I don’t just listen. The word ‘shared’ implies participation. When you share a meal, you are not merely one of two people eating. You are eating together. And so it should be with sorrow and joy. As Brené Brown has memorably explained: ‘Empathy is a choice, and it’s a vulnerable choice. Because in order to connect with you, I have to connect with something in myself that knows that feeling.’ In other words, if you’re really sharing sorrow, you’re feeling it as well, and as you feel what your friend feels, you lighten your friend’s load. The truth is, rarely can a response make something better. What makes something better is connection.” (David French, New York Times Opinion Column)

COGNITION AND MENTAL HEALTH RESEARCH SURGES

IN THIS SECTION

• Speech, Gait and Blood Tests May Predict Dementia
• Dementia Drug Pipeline Stirs Excitement
• Lifestyle Changes Slow Cognition Decline
• Dementia Needs Better Pain Management
• Major Mental Health Illness Garners Renewed Research Efforts
• Weight Loss Drugs May Target Depression and Anxiety
• Psychedelic MDMA (Ecstasy) Awaits FDA Review for PTSD
• RA Sufferers Welcome Treatment Selection Blood Test

• Speech, Gait and Blood Tests May Predict Dementia

The pace of news regarding developments in dementia diagnosis and treatment showed no signs of slowing as 2023 gave way to the new year. In a wide-ranging look at recent research, the Wall Street Journal’s Alicia Finley highlighted a number of findings that could determine “whether someone is mentally impaired simply based on how he speaks or walks, or even with a self-administered blood test. One study found that those with a frontal gait disorder—short, shuffling steps—are more than four times as likely to develop vascular dementia. By using machine learning, scientists have developed a wearable technology that can identify Alzheimer’s and Lewy Body disease merely based on the way someone walks. (And) artificial intelligence is enabling scientists to analyze voice recordings to detect patterns in patients with early cognitive impairment. These models have found that people with dementia, even in its early stages, speak with different pitches, volume, cadences and intonations than elderly people who are cognitively normal. Numerous labs have also been developing blood tests that use artificial intelligence to identify blood biomarkers linked to dementia. Alzheimer’s and other forms of dementia result from changes in the brain that can generate specific proteins in the blood. These proteins, such as glial fibrillary acidic protein, often show up in the blood even before brain scans show changes. AI is yielding blood tests that can predict whether a patient will develop dementia a decade later; a study that used blood samples from more than 50,000 people in England found four proteins were associated with the subsequent development of different types of dementia over 14 years. Researchers created an algorithmic model that combined the blood-test results with demographic variables such as age, sex, education and family history; their model predicted who would develop dementia with 89% accuracy.

• Dementia Drug Pipeline Stirs Excitement

In another broad overview MedPages’ Judy George focused on the current dementia pharmaceutical pipeline that is eliciting considerable excitement. "The progress and approvals we've seen, as well as the diversification of potential new therapies over the past few years, provides hope to those impacted by this devastating disease," observed Maria Carrillo, PhD, chief science officer of the Alzheimer's Association." The anti-amyloid drugs newly approved by the U.S. Food and Drug Administration are an important first step in Alzheimer's treatment, but there is so much more to be done." In 2023, the Alzheimer's drug development pipeline had 187 trials, the highest number on record, according to Jeffrey Cummings, MD, ScD, of the University of Nevada in Las Vegas. Of 141 candidate treatments being studied, 79% were for disease-modifying therapies and were aimed not just at amyloid, but tau, inflammation, metabolic dysfunction, cell death, synaptic plasticity, and multiple other aspects of the disease. New therapies aimed at tackling tau pathology also are making headway. And two early studies use CRISPR gene editing to potentially treat Alzheimer's disease, ‘We envision a future where multiple treatments address every aspect of this most complex disease,’ Carrillo noted. ‘Once proven, the treatments can be combined in ways that complement and enhance each other to reduce risk, treat effectively, stop the progression, and eventually cure Alzheimer's disease and all other dementia.’"

• Lifestyle Changes Slow Cognition Decline 

Not all the ongoing dementia research is aimed at pharmaceutical approvals. From Rush University Medical Center a study assesses  “the impact of lifestyle interventions on cognition in older adults as a preventive measure. A healthy lifestyle score was developed based on self-reported factors, including noncurrent smoking, at least 150 minutes of physical activity per week, limiting alcohol consumption, a Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet score higher than 7.5, and a late-life cognitive activity score higher than 3.2. The lifestyle score ranges from 0 to 5, with higher scores reflecting a healthier lifestyle. The study’s major finding: Higher lifestyle score was associated with better global cognitive functioning proximate to death. Neither the strength nor the significance of the association changed substantially when common dementia-related brain pathologies were included in the multivariable-adjusted models. In older adults, a healthy lifestyle may provide a cognitive reserve to maintain cognitive abilities independently of common neuropathologies of dementia.” 

• Dementia Needs Better Pain Management 

Another pathway to dementia care might involve better pain management. In an article on the Family Caregiving Alliance’s website, former FCA program director Donna Schempp addresses “the old myth that people with dementia have less sensitivity or awareness of pain. People with dementia are often not able to tell us that they are hurting. Yet, with proper pain management, our job as caregivers will be easier. Doing a proper pain assessment takes time, and harried physicians often don’t take the time to do such an assessment. Physicians often do lab tests to rule out the major causes of discomfort, such as a pneumonia, prostate problems, constipation or a urinary tract infection. Further, everyone has a different pain threshold, so a physician who is unfamiliar with a patient might not know how to ‘read’ the person with dementia who cannot respond verbally. Family members can be the best advocates for their loved ones in this case. Just because someone cannot talk does not mean everything is okay. It is important for family members to work together with physicians and facilities to make sure that they are evaluating, monitoring and treating pain in people with dementia. (For now) we can’t cure the dementia, but we can alleviate some of the suffering.

• Major Mental Health Illness Garners Renewed Research Efforts 

While cognition issues have captured much of the media’s recent attention, there are other mental health challenges that are starting to generate new approaches, raising hopes that conditions such as schizophrenia and major depression–still treated with now outdated breakthrough drugs–may be on the cusp of a new era of effective, novel interventions. It was the early 2000s, writes StatNews’ Damian Garde, “and the world’s largest pharmaceutical firms were running out of ideas to treat mental illness. ‘The mindset of Big Pharma in those days was one pill for millions and millions of people,’ said John LaMattina, who led Pfizer’s research division from 1999 to 2007. Two decades later, the biggest names in the global drug industry appear to be coming back to the table. In the coming weeks, Acadia Pharmaceuticals will have market-moving data on whether its antipsychotic drug, marketed as Nuplazid, can treat schizophrenia. Intra-Cellular Therapies will soon find out whether Caplyta, a treatment approved for bipolar depression, can improve on existing medicines for patients with major depressive disorder. Axsome Therapeutics is expecting data on a novel treatment for narcolepsy. And Neurocrine Biosciences will have results on two potential medicines for schizophrenia. The biggest determinant will come in September, when the Food and Drug Administration will decide whether to approve Karuna Therapeutic’s drug, a treatment that would usher in the first new class of medicines for schizophrenia in decades. It’s called KarXT, and its success in clinical trials convinced Bristol Myers Squibb to pay $14 billion for Karuna late last year. The idea is to make the search for medicines for the central nervous system more like drug development in cancer and rare diseases, where drugs are often designed based on an understanding of genetics and tested specifically in smaller groups of people who are most likely to benefit.”

• Weight Loss Drugs May Target Depression and Anxiety 

Not all new drug treatments emanate from lab discoveries and phased trials; some are byproducts of already approved medications that show efficacy for other conditions. Such may turn out to be the case with the new blockbuster weight loss drugs like Ozempic and Wegovy. Early data and anecdotes, reports StatNews’ Elaine Chen, “suggest that this class of GLP-1 drugs could help patients feel less depressed and anxious. The treatment may also fight the decline in cognitive and executive function that many people with mental health disorders experience, like worsening memory and losing the ability to focus and plan. ‘It’s a really exciting time for endocrinology and psychiatry,’ said Margaret Hahn, a clinician-scientist at the Centre for Addiction and Mental Health in Toronto. ‘The fact that we have this new arsenal of metabolic interventions — and really powerful ones — is very exciting, given some of these preliminary findings and associations that we’re seeing and the potential to actually improve mental health.’ People with diabetes and obesity have a higher risk of psychiatric conditions, and when they have those disorders, they seem to especially experience impaired cognition. Some studies also suggest that insulin resistance – a condition that often precedes type 2 diabetes in which the body doesn’t respond well to insulin – makes mental health disorders worse. Over the past few years at the University of Toronto, psychiatrist Rodrigo Mansur has been running a trial to see if semaglutide, the active ingredient in Novo Nordisk’s Ozempic and Wegovy, can improve memory and attention in people who are overweight and have severe depression with impaired cognition.  He noted there’s been research suggesting that improving the body’s ability to respond to insulin — which is what diabetes treatments like the GLP-1 drugs do — can also improve the brain’s ability to process insulin and help with cognition.  Aside from improving cognition and mood, GLP-1 drugs may help purely by counteracting the weight gain that often comes from taking treatments for mental health disorders. Patients frequently stop taking psychiatric drugs after noticing a big increase in appetite and seeing their weight creep up, but they may be more motivated to stay on if they can prevent weight gain with GLP-1 treatments, said Mahavir Agarwal, a psychiatrist at the Centre for Addiction at Mental Health. 

• Psychedelic MDMA (Ecstasy) Awaits FDA Review for PTSD 

And then there is Lycos Therapeutics, with a new drug application pending at the FDA; approval is being sought for combining talk therapy with MDMA, a psychedelic commonly called ecstasy. The FDA granted the application priority review, meaning the agency will review it over six months instead of the standard 10-month timeline, thereby setting a target date of Aug. 11 to decide whether to approve the application. The company’s research arm, write Politico reporters, “has studied MDMA as a PTSD treatment for more than 30 years. Its application marks the first time the FDA has considered approving a psychedelic-assisted therapy. (But) the August target date isn’t the end of the line. Should the FDA approve Lykos’ application, the Drug Enforcement Administration must reschedule MDMA before doctors can prescribe it. For now, MDMA remains a Schedule I drug, the highest category under the Controlled Substances Act, classified by the DEA as having no acceptable use as a treatment and posing high risk for abuse. 

• RA Sufferers Welcome Treatment Selection Blood Test 

For millions of rheumatoid arthritis sufferers the approval of a number of pharmaceutical treatments for the debilitating disease has been a life-changing development, provided the right medication can be matched to an individual patient. As KFF Health News reports, “in too many cases the the matchmaking is a story of pain, drug-hopping, and insurance meddling is all too common among patients with rheumatoid arthritis, who often cycle agonizingly through half a dozen drugs in search of one that provides a measure of relief. Once people with inflammatory conditions such as rheumatoid arthritis reach a certain stage, the first prescription offered is typically Humira, the best-selling drug in history, and part of a class known as tumor necrosis factor inhibitors, or TNFis, which (unfortunately) fail to significantly help about half of the patients who take it. ‘We practice rheumatology without any help,’’says Dr. Vibeke Strand, a rheumatologist and adjunct clinical professor at Stanford. She bemoans the lack of tools available to choose the right drug while bristling at corporate intervention in the decision. ‘We are told by the insurer what to prescribe to the patient. After they fail methotrexate, it's a TNF inhibitor, almost always Humira. And that's not OK.’ If there's a shred of hope in this story, it's that a blood test, PrismRA, may herald an era of improved care for patients with rheumatoid arthritis and other autoimmune conditions. PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly 60% of patients who are very unlikely to respond to a TNFi drug. On Oct. 15, the CMS began reimbursing for the test, and its use is expected to rise. Patients are enthusiastic about the test because so many have had to take TNFis that didn't work. Shannan O'Hara-Levi, a 38-year-old in Monroe, New York, has been on scores of drugs and supplements since being diagnosed with juvenile arthritis at age 3. ‘If I could take a blood test that tells me not to waste months or years of my life — absolutely,’ she said. ‘If I could have started my current drug last fall and saved many months of not being able to engage with my baby on the floor — absolutely.’" 

People with dementia experience multiple threats to self-determination and to living well.  Obvious threats arise from dementia itself: changes in cognition and function progressively erode an individual’s ability to self-determine.  The practical value of an ethical framework should be to support the person with dementia in their reality, support caregivers, and reflect the home and community as the typical care settings for people with early-stage and moderate dementia. Bioethics scholarship should critically reflect on the principle of respect for persons. Even as dementia progressively erodes the capacity to make decisions, it does not erode the  inherent dignity of the person;  respect for persons calls upon all of us to see this dignity and to honor it through the provision of dignified care.   Interventions must (also) address the needs of caregivers, who can experience suffering as they provide care to the person living with dementia  Our health care system often focuses narrowly on the patient;  yet the complexities of dementia care make it essential to expand our view to see and care for the caregiver, too. It is evidence-based and ethically imperative to develop policies and interventions that center care structures and supports on the patient-caregiver dyad to promote the well-being of both the person with dementia and their caregivers.(Barak Gaster and ‘Emily A. Largent, Hastings Center) 

IN THIS SECTION

• Disenrollments Threaten Health Clinics’ Viability
• Medicaid Waivers Bolster Social Needs Funding

• Disenrollments Threaten Health Clinics’ Viability 

The Medicaid redetermination process, writes the New York Times’ Noah Weiland -- underway since the spring-2023 end of the Covid public health emergency -- “has resulted in an enrollment drop of about 10 million, including around 4 million children, according to researchers at Georgetown University. States have removed people for a variety of reasons, including for changes in income and age. Some people have been dropped because they did not return paperwork. Others have lost coverage because of technical errors, including computer glitches. The loss of reimbursements for millions of patients has contributed to an already difficult financial picture for federally financed health clinics that serve over 30 million people, most of them low-income, Roughly a third to a half of the those on track to lose Medicaid could remain uninsured, according to Harvard health economist Dr. Benjamin D. Sommers. Some clinics will continue to provide care for some of those people and absorb the costs. But there is a limit to how much they can sustain financially. Texas has been the nation’s chief Medicaid dismantler. More than two million people in the state have been removed from the program, according to recent state data — the highest total nationwide; around two-thirds of those removed have been children. Jessica Tucker, a single mother, broke into tears after receiving a $90 bill for her 3-year-old son Raylan’s primary care visit and tetanus vaccine at Bethesda Pediatrics, pleading with her mother by phone for help paying it. That morning, she had been informed that the toddler had been denied Medicaid coverage. ‘I didn’t know what to do,’ said Ms. Tucker, who earns $10 per hour in a part-time job as a customer service associate in Gun Barrel City. She recently received a bill of almost $8,000 for an emergency room visit Raylan had after losing Medicaid, she said. His diagnosis: strep throat.” 

• Medicaid Waivers Bolster Social Needs Funding 

At the same time there is a brighter side to the Medicaid picture. “State Medicaid programs,” reports Modern Healthcare’s Kara Hartnett, “are bargaining with the federal government to cover some of the costs of non-medical care for high-risk patients in a bid to narrow health disparities and reduce long-term spending. In January, New York became the most recent state to receive a Section 1115 Demonstration waiver from the Biden administration. Such waivers grant Medicaid agencies certain flexibilities under federal law and expanded funding opportunities to test programs that could reduce negative health outcomes for enrollees and lower costs. In New York's case, the state Medicaid agency received approval from the Centers for Medicare and Medicaid Services to use up to $7.5 billion in state and federal matching funds to pay for a range of health-related social needs such as transportation and housing, build out the infrastructure for regional social service networks, facilitate the transition to value-based care and launch a population health data tracking entity. Since 2022, seven other states—Arkansas, Arizona, California, Massachusetts, New Jersey, Oregon and Washington—have received CMS approval to implement similar initiatives. The new Medicaid waivers are expanding the list of non-medical supports covered, authorizing direct funding for social services and creating financial incentives for providers serving low-income and underserved communities.When it comes to addressing social needs, ‘CMS is pushing the boundaries,’ said Elizabeth Hinton, associate director of KFF’s Program on Medicaid and the Uninsured.” (For a detailed discussion of Medicaid funding of health related social needs see this report from the Center on Budget and Policy Priorities) 

The Administration for Community Living (ACL) has published final updated regulations for implementing the Older Age Assistance Act programs. The 2024 final rule aligns regulations to the current statute, addresses issues that have emerged since the last update and clarifies a number of requirements. It aims to better support the national aging network that delivers OAA services and improve program implementation, with the ultimate goal of ensuring that the nation's growing population of older adults can continue to receive the services and supports they need to live – and thrive – in their own homes and communities. Among its provisions the update: 

Improves consistency of definitions and operations between state and tribal OAA programs; Clarifies and strengthens provisions for meeting OAA requirements for prioritizing people with the greatest social and economic needs; Specifies the broad range of people who can receive services, how funds can be used, fiscal requirements, and other requirements that apply across programs; Clarifies required state and local agency policies and procedures; and Updates definitions, modernizes requirements, and clarifies flexibilities within the OAA nutrition programs. For example, the rule allows for continuation of innovations developed during the pandemic, such as providing carry-out meals through the congregate meals program, in certain circumstances.  

IN THIS SECTION

• CMS Tackles MA Access Barriers
• MA Enrollment Expansion Pressures CCRC SNF Care

• CMS Tackles MA Access Barriers 

Last year saw the continued growth in enrollments in Medicare Advantage (MA) plans–along with increasing reports of beneficiary frustration dealing with barriers to access to needed care imposed by insurance plan sponsors. With approximately half of the nation’s Medicare population now members of MA plans, the concerns have elicited a response from CMS. Complaints most often center upon prior authorization requirements that result in care delays or denials. AARP bloggers Claire Noel-Miller and Jane E. Sung write that “Under new federal guidelines effective since last month, CMS clarifies that MA insurers may not use prior authorization to deny coverage for services that are included under traditional Medicare. In addition, to help protect against disruptions in care, the new CMS rules include more stringent requirements for how long MA plans’ prior authorizations must remain valid. Finally, to safeguard against blanket denials generated from, for example, software tools, predictive algorithms, or artificial intelligence, when examining pre-authorization requests, MA plans must consider each MA enrollee's specific health conditions and their treating clinician's recommendation.” (But) these measure, the bloggers argue, are not enough. “Other areas where policy action could go a long way toward better protecting MA enrollees include ensuring that MA enrollees and their health care providers are aware of options to appeal a denial, processes to appeal prior authorization denials are easy to navigate, and consumers receive their appeal decision in a timely manner; and appropriate reductions in the number of services requiring prior authorization in MA are encouraged.” 

• MA Enrollment Expansion Pressures CCRC SNF Care 

For those able to afford them, continuing care retirement communities (CCRCs) have provided aging seniors with assistance levels that vary in intensity as needs increase. But, writes Skilled Nursing News’ Amy Stulick, “that model may be facing some difficult choices; CCRC’s have to ask themselves some hard questions when it comes to what services they can reasonably offer, and if it’s worth it to keep open skilled nursing facilities or SNF wings that are hemorrhaging money. Some CCRCs, also known as life plan communities, say they need to scale up in order to survive the higher costs of care. Others say contracting with SNF operators may be an option too. Meanwhile, some CCRCs are scaling back or closing their long-term care facilities altogether. Moreover, with the growth of Medicare Advantage plans, which are linked to a higher rate of denial of skilled nursing services and delays in payment, CCRCs providing skilled nursing services may be forced to pare these down or cut them out completely, said Phil Chuang, senior vice president of healthcare services at HumanGood. Medicare Advantage is the ‘“elephant in the room,’ Chuang said, when it came to decision making around scaling back skilled nursing services from the CCRC. “Certainly we’ve seen a shift in the Medicare market. In 2023, finally more than half of Medicare beneficiaries are now in Medicare Advantage,” said Chuang. “If that’s not the tipping point, we’re certainly speeding toward that tipping point.’” 

The nonprofit patient safety organization ECRI has flashed a warning light regarding at-home use of medical devices. “From medication errors related to infusion pumps to skin injuries caused by cardiac monitors, ECRI President Dr. Marcus Schabacker told Modern Healthcare’s Mari Devereaux “there are life-threatening risks associated with using complex, specialized equipment as an inexperienced layperson. How do we advise patients to use the device safely. How do we make them easier to operate and understand? And what kind of framework do we have so that if there is a technical or a medical problem, it can be addressed quickly and effectively? Some quality assurance processes,” Devereaux observed, “are being transferred into the home under the Centers for Medicare and Medicaid Services' Acute Care at Home waiver program. Launched in 2020, the program allows more than 300 hospitals to treat certain patients in their homes using medical equipment and remote patient monitoring, along with daily virtual and in-person clinical visits. Compared with traditional home healthcare companies, hospital-at-home providers in the program have more stringent medical device safety protocols and less freedom in how they set up equipment and administer treatment, said Medically Home CEO Rami Karjian. Medically Home, a company that provides technology and other acute care at-home services, has nurses or emergency medical technicians set up all equipment in the home. Clinicians are also on hand at least twice daily to deliver care to patients. In its report, ECRI recommends providers educate patients on all medical technology being used in their homes, and only give out equipment compatible with the educational level, environment and cognitive and physical abilities of patients or caregivers. 

AARP’s Public Policy Institute has published three reports since December, delving deeply into sandwich generation caregivers of Medicare beneficiaries, respite services for family caregivers, and nursing home workforce issues and inequities.

The first in a projected three part series, AARP’s look at sandwich generation caregivers observes that “While the first media descriptions of a sandwich generation caregiver were of a woman in her late 40s caring for teenage children or helping with grandchildren while caring for an older parent  that is changing. Today the combined dynamics of Americans delaying having children and younger generations taking on caregiving of older adults is leading to a new picture of what it means to be sandwiched between two generations who need daily care. For one thing sandwich generation caregivers to Medicare beneficiaries reflect the growing racial and ethnic diversity of the US population: 35 percent identify as Black or Hispanic compared with 20 percent of all other caregivers. Research shows that cultural values, language, and neighborhood may shape emotional responses to caregiving and access to and use of various long-term supports and services. Sandwich generation caregivers to Medicare beneficiaries also are more often balancing employment with care. Nearly three-quarters (74 percent) are employed in full-time or parttime work on top of their dual caregiving duties. By comparison, only 35 percent of all other caregivers to Medicare beneficiaries were working either full- or part-time in 2021. Additionally, given their age—almost 80 percent are Generation X and millennial—and time spent in the workforce, sandwich generation caregivers of Medicare beneficiaries are less likely to have accumulated sufficient savings and financial resources to cover out-of-pocket caregiving-related expenses, yielding additional financial strain. On average, caregivers spend a quarter of their annual income on out-of-pocket costs that may cover home modifications, direct care workers, assistive devices and technology, and other services they need for their care recipient. AARP’s concludes its statistical analysis with a series of policy recommendations: Paid sick and family leave laws to support care to both generations; Protection for working caregivers from employment discrimination; Financial support for caregiving-related expenses; and Help in navigating social support and health care systems.  

AARP’s contribution to the growing literature on respite services for family caregivers is an extensive survey of their beneficial impact and barriers to use,. In addition to discussion of federal programs available through Medicare, Medicaid and/and the Veterans Administration, the report offers a wealth of information regarding state-funded respite initiatives, along with illustrative vignettes of respite recipients experiences. 

While CMS mulls over the more than 40,000 comments poured in following publication in September 2023 of a proposed regulation setting minimum SNF staffing requirements, AARP has delivered a comprehensive assessment of the challenges confronting the SNF workforce. Insufficient staffing, recruitment and retention failures all contribute to nursing home worker issues. Addressing these challenges will require a multifaceted approach, including improving compensation and benefits and strengthening training and education programs to attract and retain skilled workers. Several challenges are inherent to the nursing home workforce and mostly affect the direct care workforce, many of which are rooted in structural inequities—systematic disadvantages of one social group in comparison to other groups with whom they coexist. These disadvantages are embedded in the fabric of society and result in differential allocation of societal resources and opportunities.2  In the direct care workforce, these inequities include staffing shortages, inadequate pay and benefits, lack of advancement opportunities, poor working conditions, shift differences, and staff substitution. Although these inequities exist across the direct care workforce and beyond, CNAs bear the brunt of these inequities, and research has pointed to the demographic makeup of this workforce as a possible explanation. The CNA workforce is made up disproportionately of women and people of color from traditionally underserved backgrounds because many parts of society hold their job positions in low esteem. Fifty-nine percent of the CNA workforce are people of color, and 20 percent are immigrants.

IN THIS SECTION

• Moves to SNFs Pose Challenge to Spouses Still At Home
• Death Doulas Expand Presence at End of Life
• Philadelphia’s Thread and Death Cafe Offer Bereavement Connections
• Physician Wrestles With Role of Hope in Medical Care
• Patients Confront Cures That Come Too Late

• Moves to SNFs Pose Challenge to Spouses Still At Home 

Paula Span, the New York Times’ New Old Age columnist, turns her attention to spouses whose frail partners require a move to a long term care facility. “Putting a spouse or partner in a long-term care facility, for any reason, represents a fraught transition for a couple, one that can mean release from the sometimes crushing burden of caregiving, but can also be accompanied by lingering depression, anxiety and guilt. Nursing-home placement poses particular challenges for spouses compared with other family caregivers.. ‘Spouses are deemed to be more responsible than sons or daughters,’ said Richard Schulz, a retired social psychologist at the University of Pittsburgh. ‘Institutional care, in some circles, is viewed as giving up, relinquishing responsibilities one shouldn’t relinquish.’ Adult children and siblings are less likely to have shared a home with the patient for decades and to experience its emptiness after the person leaves. However attentive the family members may be, if they also have jobs and families of their own, ‘we don’t expect them to do as much,’ Dr. Schulz added. Only spouses took that vow about sickness and health, until parted by death.’ Retired social worker Moira Keller sometimes encourages spouses to visit a bit less often and to re-engage with people and activities that bring them pleasure. Residents with dementia, she points out, will not recall whether their spouses visited three times a week or six, or stayed for an hour or four. But, she said, the spouses often reply, ‘This is my life now.’ After their loved ones move out, most caregivers “are able to adapt to the new role,” Keller said. “It takes some time, but they appreciate not being on call 24 hours a day anymore.” When she sees members showing signs of clinical depression, however, Ms. Keller refers them to psychotherapists. But Marcy Sherman-Lewis has decided against seeing a therapist. ‘They can say, Go to the gym, take classes, but I still come home to an empty house,’”  

• Death Doulas Expand Presence at End of Life  

Doulas, a longtime fixture in the world of childbirth, are increasingly making their presence felt at the other end of the lifecycle. As reported by the National Geographics Stacy Carlino, “doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors. Eleven months before he passed away from ALS, Jerry Creehan was put into hospice care and his wife Sue contacted end-of-life doula Shelby Kirillin who worked with them once or twice each month for an hour at a time. At first, Kirillin helped them talk about what death looks like and how Jerry could ‘own’ his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night.”  

• Philadelphia’s Thread and Death Cafe Offer Bereavement Connections 

In Philadelphia on a damp December afternoon, writes Ben Seal, “with the sky a wall of soft grays,, my wife and I walk up a metal staircase to the Rail Park above Callowhill Street, where a small team of artists has set up The Thread, a space for Philadelphians to connect with their grief. In a makeshift booth, visitors can use The Thread’s phone line to leave a voicemail for a loved one who has passed — or pick up a disconnected phone and speak their thoughts into the wind. The installation was inspired by the Wind Phone, created by Itaru Sasaki in Otsuchi, Japan, in 2010, to cope with his cousin’s passing. Meanwhile, twice a month the Death Cafe meets online for conversations about mortality, grief, and anything else on the minds of those who attend. It’s one of many such groups around the world inspired by the late Swiss sociologist Bernard Crettaz, who set up the first death cafe in the mid-2000s, after his wife died. A recent gathering of the Philadelphia contingent contemplated visiting with the body of a deceased loved one, medical aid in dying, and the irony that other major life events — graduations, weddings, births — are given months of preparation and planning, while funerals often feel thrown together.” 

• Physician Wrestles With Role of Hope in Medical Care 

From critical care physician and frequent New York Times contributor Dr. Daniela J.Lamas come two recent articles, the first, published on Christmas day, contemplating the role of hope in medical treatment, the second, “When a Cure Comes Too Late” looking at what losing hope means for the doctor-patient relationship. “Of all the ways the body can go wrong, A.L.S. is one of the most frightening. It begins subtly — a twitching muscle, a cough when you swallow or a clumsy hand. But then it progresses. There is no cure. In contrast to the experience of those with cancer, for whom there is often the promise of a new drug around the bend, there are relatively few therapies for A.L.S. Perhaps that is why I became so interested recently in the vigorous debate over the possible approval by the Food and Drug Administration of a new treatment for A.L.S.: a stem cell therapy called NurOwn developed by BrainStorm Cell Therapeutics. Some patients who had early access to the drug described improvement like being able to pick up a remote control for the first time in months or being able to walk through the grass. But the data did not bear out these experiences. Ultimately, the F.D.A. advisory committee that evaluated NurOwn recommended against approving the therapy, a decision that devastated many A.L.S. patients and their family members. The decision of whether to approve a drug for a lethal disease gets to complex, deeply human  questions. How far do you go when the alternative is certain death? What level of proof is good enough, and who gets to decide? And when someone is facing a terminal illness, what is the cost and benefit of hope, even hope for an outcome that might never be realized? Yet as doctors — particularly those of us working in places like the I.C.U. — we are trained to tread cautiously when it comes to hope. If hope — even false hope — is a kind of medicine, it is not one that we are comfortable with. Of course, no one wants the F.D.A. to approve drugs that are useless or, worse still, dangerous. One worry is that increasing flexibility will mean the F.D.A. is influenced by the loudest voices to put drugs on the market that are expensive and possibly ineffective. But isn’t it also dangerous, maybe more so, to be wrong in the other direction — to withhold a drug that might actually be beneficial, when the alternative is certain death? “The treatments may not cure us, but they have a chance to help us,” As ALS patient Brian Wallach said. “And that chance is everything, when you know what is behind door number two.’”

• Patients Confront Cures That Come Too Late 

If Tyler Parrish, another of Dr. Lamas’s patients,“had been born decades earlier with the same genes, he would not have had access to the medical care and technology that allowed him to see his 43rd birthday. But if he had been born today with access to gene therapy for spinal muscular atrophy, he might have been able to walk without assistance. He might have been able to live a life without fear of impending medical catastrophe. He would probably not be in a long-term care hospital in Boston, with a team of doctors trying to decide whether he needs a tracheostomy tube and a ventilator at night for the rest of his life.  As science moves forward, there are an increasing number of people like Mr. Parish. There are life-changing treatments available for his disease, but they seemingly cannot reverse the damage that has already been done. A growing population of patients is faced with a challenging question: What is it like for those who know that their disease could be cured or significantly managed in their lifetimes but that they won’t be able to — or might choose not to — see that benefit? ‘When I talk as someone who is older, who is missing out on some of these things, it’s not from a bitter place. It’s from a place of, Thank God that these younger people are born at the right moment in time,’ Mr. Parish told me. ‘I love the idea that a kid can be born with S.M.A. and never know the infinite desperate medical situations, the social situations they’re going to be able to avoid.’ People born with his disease today can live completely different lives from Mr. Parish’s. They will be treated before they have any understanding of what they are avoiding. They will never know what it is to grow up with the belief that they might not see adulthood, to wake up in a long-term hospital and look ahead at a day of exhaustion and a million indignities. It is remarkable that these two completely different realities can exist at the same moment.” 

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• Dementia Caregiver Study
• Inviting grandchildren, nieces/nephews, siblings, and step-kin to participate in a telephone-based dementia caregiving study

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Credits

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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