Vol. 20, No. 6
September 14, 2020

“It was a tenet of my critical care training. Family members were an integral part of the care that we delivered. They keep us accountable and remind us that our patients had rich lives outside the hospital. But more than that, it was often the relative who would clock a subtle change, alert us to a medication allergy, bring in the blanket from home or the food that would spark our patient to start eating again. The attending physicians who trained me taught me to recognize the way my agitated patients calmed when a loved one entered the room, the way a hand on a shoulder could cause a rapid heart rate to slow, or how a delirious patient would smile when they heard a relative calling their name. All of that has changed. It has been nearly six months since visitor bans went into effect in hospitals throughout the country. Just last month, a new fleet of interns joined us. They are learning how to be good doctors in a world of masks and distance and isolation. They do not know what it is like for the hospital to feel alive with family members in our hallways, cafeterias and waiting rooms. I want to teach them how much it matters, but as the months go by, I am already feeling a shift in myself. Our language has grown more casual. We talk about how a patient ‘acted up’ or ‘gave us trouble,’ phrases I would never use if that patient’s husband or wife were standing in front of me. The cost of this policy has gone far beyond those with the virus. It is that moment overnight when I did not think to call the family. It is in the many quiet hours my patients spend alone, the extubations that happen now without a loved one at the bedside, our patients waking from the nightmare of intubation to find themselves surrounded by the masked faces of strangers. It was nearly 4 a.m. by the time we called the family on that recent overnight, but they came quickly, hair still mussed from sleep, surgical masks in place. Security verbally screened them for COVID-19 and let them up even though it was outside visiting hours, because we were worried that our patient would not make it through the night. The nurse set up two folding chairs for them next to the patient’s bed. They held his hand and talked to him in ways that we never could. And slowly, as the carbon dioxide cleared from his blood, my patient started to open his eyes. And when he did, he was not alone.”
— Daniela J. Lamas, writing in The New York Times, is a critical
care doctor at Brigham and Women’s Hospital in Boston.
  • Researchers document dire nursing home staff and PPE shortages
  • ‘Essential’ family caregivers gain greater access to loved ones
  • NASEM announces new nursing home quality of care study
  • CMS awaits nursing home commission recommendations
  • Chamber of Commerce joins push for COVID-19 liability immunity
  • CMS issues new nursing home inspection and testing requirements
As summer makes way for autumn and the 2020 election cycle moves into high gear, the impact of COVID-19 on life as we had known it continues unabated — on our economic structures, educational systems, health delivery institutions, and, not least, on our facilities and capacities for extending care to the elderly, vulnerable, and disabled among us.
Researchers document dire nursing home staff and PPE shortages
High on the list of COVID-19’s challenges remain the ongoing situation in the nation’s long-term care facilities. Underscoring its dire dimensions, Harvard and University of Rochester researchers have documented the “severe staffing and personal protective equipment (PPE) shortages faced by nursing homes since the pandemic’s outbreak. Using the most comprehensive survey of nursing homes during the COVID-19 pandemic to date, we found that over 1 in 5 facilities faced a staff shortage or severe shortage of PPE in early July 2020. Despite a slight decrease in facilities with any PPE shortage driven by higher availability of gowns, overall PPE and staff shortages have not meaningfully improved since late May 2020. In many counties, the majority of facilities faced shortages of staff or PPE. PPE shortages were magnified among nursing homes with COVID-19 cases among staff or residents and those with low quality scores. Staff shortages were greater in facilities with COVID-19 cases, particularly among staff, those serving a high proportion of disadvantaged patients on Medicaid, and those with lower quality scores, including pre-pandemic staffing scores. Given the disproportionate burden of morbidity and mortality faced by nursing home residents, the magnitude of these shortfalls poses a major threat to public health, especially in areas with the highest proportions of nursing homes with severe shortages, many of which experienced surges in COVID-19 activity in July and August 2020.”
‘Essential family caregivers’ gain greater access to loved ones
The shortages documented in the Health Affairs study have been severely compounded by the restrictions placed on caregivers’ access to their loved ones. On that score, as AARP’s Andy Markowitz reports, some glimmers of hope have emerged in some facilities. “When the Minnesota Department of Health announced last month that nursing homes and assisted living facilities in the state could allow some family caregivers to resume regularly visiting loved ones, Kathy Merkel broke down: ‘I heard the press conference, I got up, I cried.’ Two weeks later, Merkel entered her mother’s northern Minnesota nursing home for the first time in more than four months. She and her brother now come daily, making sure June Merkel, who is 86 and has moderate dementia, eats her meals, gets her hair done and is soothed when she gets anxious and cranky around sundown, as they had done for years before COVID-19 hit. ‘It’s a lot of comfort care. She needed us.’ Minnesota is one of a handful of states that have written ‘essential caregiver’ policies into their strategies for resuming nursing home visits after a months-long ban on most visitors because of the pandemic. In those states, long-term care facilities have discretion to allow regular access to visitors like Merkel, whom they deem critical to a resident’s daily care and emotional well-being. These visits are different than most nursing home visits happening these days, which are closely monitored, strictly time-limited and happen in designated common areas, often outdoors, with protocols for masking, distancing, hygiene and health screening. New Jersey and South Dakota have announced essential caregiver policies, joining Indiana and Minnesota, which launched their programs in June and July, respectively. Michigan’s nursing home restrictions do not use the term ‘essential caregiver’ but do allow visits that support residents’ daily living activities. The state programs vary in detail but share a goal of mitigating what Minnesota’s plan calls ‘the unintended consequences of prolonged physical separation and isolation on a resident’s overall health and well-being.’ Essential caregivers are typically family members or friends who were a steady presence at a loved one’s facility before the pandemic, providing companionship and help with daily activities such as eating, bathing and grooming, or who commit to fulfilling that role now. Like other visitors, essential caregivers are required to wear masks, get screened for symptoms, and keep their distance from staff and other residents. But they are generally allowed to visit more often, for longer periods, and go to loved ones’ rooms. Their access is not necessarily subject to facilities’ being COVID-free for a set period, as are broader visitation rules.”
NASEM announces new nursing home quality of care study
The extent of the COVID-19 devastation in long-term care facilities has not only prompted demands for staffing and supply shortage fixes but reopened the broader issue of long-term care facility quality assurance. Thirty four years after publication of its landmark report on nursing home quality, the National Academy of Sciences, Engineering and Medicine (NASEM) has announced formation of a new consensus study, The Quality of Care in Nursing Homes. It will involve an extensive review of the way in which our nation delivers, finances, regulates and measures the quality of nursing home care.
CMS awaits nursing home commission recommendations
Meanwhile, previewing the imminent release of recommendations from the Trump Administration’s recently appointed nursing home quality commission, The Wall Street Journal’s Anna Wilde Mathews reports that the commission will call for “an aggressive and comprehensive federal approach to the COVID-19 crisis, including supplying facilities with personal protective gear, assisting with staffing shortages and offering coronavirus testing with rapid results. The commission is expected to suggest that the federal government should ensure that all nursing homes get three months’ worth of protective gear, and that it create a national strategy to guarantee access to rapid-results testing for all nursing homes. The commission is also expected to recommend that the federal government help nursing homes address staffing issues, with one option including providing funds for hazard pay.”
Chamber of Commerce joins push for COVID-19 liability immunity
While demands for addressing long-term care shortcomings mount, a countervailing push (as previously noted in Policy Digest) is emanating from provider groups and their Republican congressional allies for enactment of far-reaching liability protections to foreclose lawsuits from aggrieved families. The Washington Post reports that the nation’s biggest business lobby, the U.S. Chamber of Commerce, has thrown its weight behind the effort by drafting legislation designed to shield companies from liability related to the pandemic and distributing it to state and federal lawmakers. “‘What we’re concerned about, and advocating for with Congress, is you don’t want to wait until all the cases are filed … you have to deal with this beforehand,’ said Matthew Webb, senior vice president for legal reform policy at the Chamber. Webb’s comments offer a rare glimpse of the integral role lobbyists have as Congress looks for ways to address the economic crisis. The issue has become a sticking point in stalled negotiations over a new federal relief package; Senate Republicans have said they will refuse to negotiate over coronavirus liability protections and will not agree to any deal that doesn’t include them. Speaking weeks before a Republican-sponsored bill was introduced, Webb went on to describe detailed policy proposals that eventually were included. They include imposing a higher standard of evidence than exists for most civil lawsuits, requiring the plaintiff to prove claims based on ‘clear and convincing evidence.’ And both bills are constructed so that state laws will take precedence when they restrict liability even more than the national one. But businesses that are proved to have acted recklessly can still be penalized for gross negligence under both the Republican-sponsored bill and the draft legislation shared by the Chamber of Commerce. That term usually refers to intentional or knowing disregard, which can be difficult to prove. ‘If you’re trying to make a good-faith effort to do the right thing, you would receive liability protections,’ Webb said. ‘If, however, someone is engaging in egregious misconduct, they wouldn’t necessarily receive that liability safe harbor.’ Taking strong exception to the liability waiver effort, a coalition of long-term care advocates and attorney groups have issued a joint statement opposing immunity for residents’ adverse COVID-19 consequences.
CMS issues new nursing home inspection and testing requirements
Faced with mounting COVID-19-related mortality and morbidity in nursing homes, CMS responded with several actions in August: an expansion of survey activities, including on-site revisits, expanded desk review authority, facility wide testing requirements for staff and residents (pursuant to and interim final rule with comment), a revised COVID-19 focused survey tool, and a national nursing home training program for frontline nursing home staff and management. With respect to the last initiative, CMS announced that “The training will be available immediately to staff of America’s 15,400 Medicare and Medicaid certified nursing homes and focuses on critical topics like infection control and prevention, appropriate screening of visitors, effective cohorting of residents, safe admission and transfer of residents, and the proper use of personal protective equipment — all critical elements of stopping the spread of COVID-19.”
  • ACL marks RAISE Act Family Caregiving Advisory Council’s first anniversary
  • CMS proposes fast-tracking Medicare coverage of innovative technology
  • Activists promote Medicaid expansion in ‘holdout’ states
  • Medicare Compare website gets makeover
  • CBO raises alarm over future of Medicare trust fund
ACL marks RAISE Act Family Caregiving Advisory Council’s first anniversary
HHS’ Administration for Community Living is marking the first anniversary of the establishment of the RAISE Act Family Caregiving Advisory Council. To date the council’s activities have included: proactively seeking the input of caregivers, key stakeholders and others in advance of preparing a National Caregiving Strategy; conducting substantive deliberations and work in five open meetings and public forums; and surveying the federal landscape to identify programs and initiatives already in place that support caregivers and identify opportunities to strengthen collaboration. The Council and ACL have been supported by the National Academy for State Health Policy’s (NASHP’s) RAISE Family Caregiver Resource and Dissemination Center. Extensive council-related materials, including meeting summaries, reports and caregiving goals, can be found at the ACL RAISE Act website as well as at NASHP’s.
CMS proposes fast-tracking Medicare coverage of innovative technology
FierceHealthcare’s Robert King reports that CMS has issued a proposed regulation — Medicare Coverage of Innovative Technology (MCIT) — that it believes will “tackle the lag time between when a new device is approved or cleared by the Food and Drug Administration and get covered by Medicare, a time the administration refers to as the ‘valley of death’ for innovative products. The rule would create a new, faster Medicare coverage process for devices the FDA gives a ‘breakthrough’ designation to. Such devices are cleared at a faster rate by the agency because they treat an unmet medical need. For devices approved under the new process, Medicare would give national coverage simultaneously with FDA approval for a minimum of four years.
Activists promote Medicaid expansion in ‘holdout’ states
While the fate of the Affordable Care Act and healthcare insurance coverage in general are likely to figure prominently in the forthcoming presidential debates, the future of Medicaid expansion is also an ongoing contentious matter. But, as the Associated Press reports, “After voters expanded Medicaid in conservative states like Missouri and Oklahoma, healthcare advocates are renewing a push for expansion in Mississippi and other Southern states where Republican leaders have long been opposed. Observers say the changing tide has followed rising income inequality, joblessness and pressure from hospitals in economic turmoil — issues exacerbated by the coronavirus pandemic. There are now 12 states — including Mississippi, Georgia, Alabama, Texas, South Carolina, North Carolina, Tennessee and Florida — that have not expanded Medicaid. A newly formed collaborative, ‘Southerners for Medicaid Expansion,’ is aiming to put pressure on the holdouts. About 25% of Mississippi’s nearly three million residents are already enrolled in Medicaid, and opponents have said they don't want more people taking part in a government program. Roy Mitchell, executive director of the Mississippi Health Advocacy Program, said hospitals are in desperate need of the dollars. Uncompensated care costs in Mississippi exceed $600 million annually, according to a 2019 statement from the Mississippi Hospital Association. Addressing ailing hospitals has been controversial. Republican Gov. Tate Reeves and leaders in the Republican-controlled Mississippi Legislature have opposed Medicaid expansion. Reeves has said money should go instead to federally funded community health centers that help people in need. The Mississippi Hospital Association in 2019 proposed ‘Mississippi Cares,’ which it called Medicaid reform but not expansion. It was modeled after an Indiana program enacted under then-Gov. Mike Pence. It would expand Medicaid eligibility while setting $20 monthly premium payments and copays. The proposal, however, gained no traction during this year’s Mississippi legislative session.”
Medicare Compare website gets makeover
Medicare enrollees now have a redesigned CMS website with which to compare providers. As Modern Healthcare’s Maria Castellucci reports, “the site is an attempt by CMS to give users a more streamlined experience using its platform, called Compare tools. The remodeled site, available on Medicare.gov, can now access users’ location, and a drop-down menu allows the consumer to select what type of provider they are looking for. Options are hospitals, nursing homes, home health, dialysis centers, long-term care hospitals, inpatient rehabilitation, physicians and hospice groups. A user can compare up to three providers using information about costs, location and quality data. The site is also compatible for use on smartphone and tablets. CMS is seeking feedback from users about the upgraded platform.
CBO raises alarm over future of Medicare trust fund
Some unsettling data about Medicare’s finances has come from the Congressional Budget Office. “The Health Insurance (HI) trust fund is projected to become exhausted in 2024, two years sooner than CBO estimated this past March. After the date of exhaustion, CMS could not make payments in excess of the available receipts. However, because CBO’s baseline projections must incorporate the assumption that CMS would continue to pay HI benefits in full, CBO projects that outlays would exceed receipts by $78 billion in 2025, an amount that would increase to $113 billion in 2030. Following its exhaustion, if the trust fund’s outlays were limited to its income, expenditures in 2025 would be 17 percent below the amounts scheduled under current law, and they would be 19 percent below those amounts in 2030. It is unclear what changes CMS could make in order to operate the Part A program under those circumstances.” The CBO report caught the concerned eye of outgoing MedPac Commissioner Susan Thompson, senior vice president of integration and optimization with UnityPoint Health in West Des Moines, Iowa. “‘The trust fund is in a much more dire position than when I started — basically it’s on life support,’” said Thompson in an article by MedPage Today’s Joyce Frieden. “The number of workers per Medicare beneficiary — an indicator of the fund’s solvency — had declined from about 4.5 when the program began to around 3 today, and in the next 10 years, is expected to drop to 2.5. To keep the trust fund solvent for another 25 years, Medicare trustees estimate that either the payroll tax would need to be increased from 2.9% to 3.7%, or Medicare hospital spending would need to be cut by 17%, or $1,000 per beneficiary. ‘I personally consider this an issue of intergenerational injustice,’ said commissioner Betty Rambur, RN, professor of nursing at the University of Rhode Island in Kingston. ‘As a baby boomer, I think we have a responsibility to leave a better world behind; we need to be much more aggressive.’”
  • COVID-19’s lingering aftereffects threaten brains and hearts
  • Virus treatment costs engender pocketbook shocks
  • Eli Lilly and NIH test fast-acting COVID-19 treatment on nursing home residents
  • Risky central nervous system drugs plague dementia patients
  • Anti-psychotic meds routinely sedate nursing home residents
  • Announcements
COVID-19’s lingering aftereffects threaten brains and hearts
  • More disturbing evidence is emerging of the lingering effects of COVID-19 well after initial “recovery.” Both neurological and cardiac problems are besetting survivors, and clinicians are struggling to understand why this is happening and what to do about the situation. “Many ‘long-haulers,’” writes Marketwatch’s Nicole Lyn Pesce, “or COVID-19 patients who have continued showing symptoms for months after the initial infection passed, report neurological problems such as confusion and difficulty concentrating (or brain fog), as well as headaches, extreme fatigue, mood changes, insomnia and loss of taste and/or smell. A Lancet study of 60 COVID-19 patients finds that 55% of them were still displaying such neurological symptoms during follow-up visits three months later. And when doctors compared brain scans of these 60 COVID patients with those of a control group who had not been infected, they found that the brains of the COVID patients showed structural changes that correlated with memory loss and smell loss. The most severe illness and complications appear to stem from the body’s immune response to the viral invader, as opposed to the virus itself causing damage. And some preliminary studies suggest that this immune response could damage the nervous system. The University College of London warned about a potential brain damage ‘epidemic’ caused by COVID-19 in the journal Brain last month. The study examined 43 COVID patients treated in London in April and May, and found 10 cases of “temporary brain dysfunction” and delirium; 12 cases of brain inflammation; eight cases of strokes; and eight cases of nerve damage. ‘We should be vigilant and look out for these complications in people who have had COVID-19,’ said joint senior author Dr. Michael Zandi in a statement. ‘Whether we will see an epidemic on a large scale of brain damage linked to the pandemic — perhaps similar to the encephalitis lethargica outbreak in the 1920s and 1930s after the 1918 influenza pandemic — remains to be seen.’”
  • For the Boston Red Sox’s No.1 pitching prospect, Eduardo Rodriguez, the post COVID-19 onslaught affected not his brain but his heart. “‘I’ve never been that sick in my life, and I don’t want to get that sick again.’ His symptoms abated,” writes Dr. Haider Warraich, “but a few weeks later he felt so tired after throwing about 20 pitches during practice that his team told him to stop and rest. Mr. Rodriguez won’t be playing baseball this season. Further investigation revealed that he had a condition many are still struggling to understand: COVID-19-associated myocarditis. Myocarditis means inflammation of the heart muscle. Some patients are never bothered by it, but for others it can have serious implications. And Mr. Rodriguez isn’t the only athlete to suffer from it: Multiple college football players have possibly developed myocarditis from COVID-19, putting the entire college football landscape in jeopardy. Researchers are still figuring out how SARS-CoV-2 causes myocarditis — whether it’s through the virus directly injuring the heart or whether it’s from the virulent immune reaction that it stimulates. It’s possible that part of the success of immunosuppressant medications such as the steroid dexamethasone in treating sick COVID-19 patients comes from their preventing inflammatory damage to the heart. Such steroids are commonly used to treat cases of myocarditis. Despite treatment, more severe forms of COVID-19-associated myocarditis can lead to permanent damage of the heart — which, in turn, can lead to heart failure. But myocarditis is not the only way COVID-19 can cause more people to die of heart disease. When I analyzed data from the Centers for Disease Control and Prevention, I found that since February nearly 25,000 more Americans have died of heart disease compared with the same period in previous years. Some of these deaths could be put down to COVID-19, but the majority are likely to be because patients deferred care for their hearts. That could lead to a wave of untreated heart disease in the wake of the pandemic. Many patients are understandably apprehensive about coming back to the clinic or hospital. The American Heart Association has started a campaign called ‘Don’t Die of Doubt’ to address the alarming reduction in people calling 911 or seeking medical care after a heart attack or stroke.”
Virus treatment costs engender pocketbook shocks
The impact of prolonged COVID-19 aftereffects is being felt not only in terms of lingering symptoms but on sufferers’ pocketbooks as well. “The new coronavirus that infected Tricia Sales in March still plagues her,” writes The Wall Street Journal’s Stephanie Armour. “The horse trainer and onetime cocktail server deals with dizziness and nausea. At times, she can’t feel her hands and feet. Her five-month struggle has meant specialists, drugs, a spinal tap, imaging scans and 15 hospital visits. The uninsured single mother said she owes more than $100,000 in medical bills but is too sick to fully work. A number of doctors and researchers are warning the fallout from people who develop long-term health effects from coronavirus could ripple through the U.S. economy, burdening public safety-net programs such as Medicaid while leaving many patients with significant medical debt. Minorities make up a disproportionately large number of the newly unemployed, and thus uninsured. Some patients are raising alarm about the medical costs in Facebook support groups such as ‘COVID-19 Long-Haulers Discussion Group,’ which has nearly 5,000 members, and ‘Long Covid Support Group,’ which has 18,000 members. ‘My medical bills are astronomical, and all new medications run close to $500 a month now,’ according to one post in the Long Haulers group. ‘My husband lost his longtime job because of the amount of time he had to take off because of this. We are drowning in expenses.’ Congress has so far not passed legislation to protect patients from surprise out-of-network hospital bills. Jennifer Johnston, 40, of Vancouver, Wash., had a fever for three months and pneumonia in her left lung. She said the left side of her body goes numb and her heart races as fast as 180 beats a minute when she stands up. ‘I can still barely walk,’ she said. She has used up her employer’s Family and Medical Leave, she said, and is living off her savings. ‘They referred me to a specialist out of network, but I can’t afford to see them.’”
Eli Lilly and NIH test fast-acting COVID-19 treatment on nursing home residents
While the world anxiously awaits the arrival of a COVID-19 vaccine and better post-infection treatments, an unusual effort is underway in some nursing homes to test an experimental drug, a monoclonal antibody that if effective might quickly stop an infection before it begins its rapid rampage among residents and staff. “Drug companies and the federal government,” reports The New York Times’ Gina Kolata, “often avoid testing drugs in older people, even if they are the ones who need treatment most. The elderly may have a range of complicating conditions that make it difficult to tell if the drug is working, and nursing home and extended care facilities are governed by a raft of complex regulations regarding privacy and access. Experts say the new research, sponsored by Eli Lilly and the National Institutes of Health, is among the first large clinical trials to involve nursing home residents. And the scientists are delighted. Some people ask, ‘If we have a vaccine, why do this?’ said Dr. Myron Cohen, a University of North Carolina researcher who proposed the trial. ‘But a vaccine will take a month to produce antibodies, and some populations need a more emergent intervention.’ But it is not easy to do a trial in nursing homes. Because the residents cannot be expected to travel to a clinic for an infusion and subsequent testing and monitoring, the clinical trial must to come to them. Eli Lilly’s researchers are watching facilities in which a single case of COVID-19 appears after having no active cases for at least 14 days. Once the case is reported, a sort of medical SWAT team scrambles to the facility as quickly as possible. There are obvious advantages to testing the drug in nursing homes. Residents are all in one place, making it easy to do contact tracing. And the rocket pace of a nursing home outbreak makes it easier to see if the coronavirus can be halted with this drug.”
Risky central nervous system drugs plague dementia patients
There is news on another pharmaceutical front but not of the welcome sort: “Elders with dementia,” reports the New England Journal of Medicine’s JournalWatch, “commonly fill prescriptions for medications that act on the central nervous system (CNS) — despite substantial risks and little evidence of benefit — a JAMA study finds. Of nearly 740,000 Medicare beneficiaries with diagnoses of dementia, roughly three quarters filled at least one prescription for a CNS-active medication between 2014 and 2015. Antidepressant fills were most common (50% of the cohort), followed by opioids (30%), anxiolytics/sedatives-hypnotics (27%), antiepileptics (22%), and antipsychotics (22%). Prescription fills were generally more common among women, those aged 65–74, white adults, and lower-income adults. Two opioids were the most common individual medications filled: hydrocodone (14%) and tramadol (12%). Quetiapine, sertraline, and gabapentin were also frequently filled. The researchers note, ‘None of these medications are approved in the U.S. to treat dementia or its behavioral symptoms; all are associated with adverse events among older adults, including falls, sedation, and increased risk of death.’”
Anti-psychotic meds routinely sedate nursing home residents
Meanwhile the Long Term Care Community Coalition (LTCCC) reports that “Despite the Food and Drug Administration’s ‘black box’ warnings against using antipsychotics on elderly patients, too many facilities routinely administer antipsychotics as a form of chemical restraint to sedate residents rather than taking time to understand the resident and provide appropriate care. The latest data indicate that powerful antipsychotic drugs are being administered to approximately one in five nursing home residents, or 10 times the proportion of the population that will ever have a diagnosis recognized by CMS as qualifying for potentially appropriate use. The coalition has produced a consumer fact sheet that addresses ‘Avoiding Drugs as Chemical Restraints.’”
A three day virtual Research Summit on Dementia Care was held in late July and early August; extensive summit materials, including the family stakeholder group’s research recommendations, can be accessed here.
The John A. Hartford Foundation is offering a wide-ranging and frequently updated website devoted to COVID-19 resources for nursing home and long-term care.
  • Nursing home residents and family caregivers yearn for renewed contact
  • Devoted husband moves into wife’s Alzheimer’s unit
  • COVID-19 uniquely challenges dementia sufferers and their caregivers
  • Telemedicine enhances palliative care
  • Dr. Lamas links hospitals’ expertise and patients’ survivability
  • Professor Snyder reflects on a brush with death and American health care
Nursing home residents and family caregivers yearn for renewed contact
There has been no shortage of heartbreaking accounts of the toll COVID-19 is visiting upon the elderly and their families. “Nursing home families yearned to visit loved ones again,” writes The New York Times Paula Span.“‘It’s not just Covid that’s killing residents in long-term care,’ said Dr. Jason Karlawish, a geriatrician at the University of Pennsylvania. ‘It’s the isolation, the loneliness.’ Studies have repeatedly shown that isolated older adults have higher rates of heart disease, stroke and dementia and increased mortality rates comparable to those linked to smoking. Moreover, Dr. Karlawish said, ‘Covid exposes a secret everyone knows — that such facilities are chronically understaffed, with relatives often filling the gap. The family were covert caregivers, providing not just connection and stimulation but hands-on help with dressing, walking, eating and monitoring residents’ health.’ Thirty-four states have issued guidelines for nursing home visits and 27 for assisted living, according to LeadingAge, which represents nonprofit senior service providers. But individual facilities can decide whether to permit visitors and under what conditions. There’s always a reason to delay, and facilities where residents and staff members have already suffered and died from COVID-19 understandably fear a recurrence. But they could exercise judgment, Dr. Karlawish said, and at least allow visitors for residents who clearly struggling with the isolation. ‘Nursing homes care for a group of people for whom high-stakes ethical decisions are part of life. Almost by definition, long-term care residents have limited life spans; nursing home residents are particularly fragile. Do they so value safety over quality of life that they want to spend their last months or years separated from their loved ones? Has anyone asked them?’ Kathy Baum keeps visiting her mother and mother-in-law from a distance in a Reston, Va. assisted living facility, but she is haunted by ‘the idea that one of them might pass, without one of us next to them. I don’t know what I would do.’”
Devoted husband moves into wife’s Alzheimer’s unit
“When nursing homes began barring visitors to keep the coronavirus out,” writes The Wall Street Journal’s Anna Wilde Mathews, “Jack Eccles decided to move in. Hillcrest Convalescent Center in Durham, N.C., had turned him away on March 12 when he arrived as usual to spend much of the day with his wife, Gerry, who suffers from Alzheimer’s disease. So he returned the next day with a suitcase of clothes, books, medications and his computer. Hillcrest had agreed to rent him a single room in its assisted-living area so that he could care for Gerry, who is 91. Dr. Eccles, who is 93 and a longtime Baptist pastor, remains under lockdown at Hillcrest. For five months, he hasn’t left and has rarely seen the sun — the window in his room faces a brick wall. He isn’t allowed to walk around the 154-bed facility, except to Gerry’s room, where he feeds her, and sometimes to the lobby, where he can see family members through the windows. Meals in the facility’s spacious dining room and its festive monthly parties remain paused. Hillcrest sometimes feels like a prison, he says, but he won’t move out and leave Gerry until it reopens to visitors. ‘We’re married. I want to be with her. She took care of me for 70 years, and now it’s my turn,’ he says. Three times a day, Jack arrives at Gerry’s room. She sometimes resists eating or dozes off between bites. Wearing a mask and goggles, Jack spoons cereal and purée from a tiny plastic spoon, meticulously checking that she gets the required 40 ounces of liquid a day, and wiping drips so they don’t stain her clothes. A meal often takes about 90 minutes. Hillcrest staffers say his efforts have made a huge difference in his wife’s health. ‘That’s something we can’t do. We haven’t been with her for 70 years,’ said Olivia Jacobs, a Hillcrest dietitian. She and others working at the facility say Jack never complains, and is unfailingly gentle: ‘He’s always having a good day, he’s always happy to see her. … He’s with his love, and that’s where he wants to be.’”
COVID-19 uniquely challenges dementia sufferers and their caregivers
“COVID-19,” writes Kaiser Health News’ Heidi De Marco, “poses unique challenges to individuals experiencing dementia. The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family. The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater ‘heaviness’ to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter. ‘So many [callers] are seeking advice on how to address gaps in care,’ said Beth Kallmyer, the association’s vice president of care and support. ‘Others are simply feeling overwhelmed and just need someone to reassure them.’ These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers. Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic. The pandemic is exacerbating feelings of isolation and loneliness not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. ‘Caregivers are lonely, too.’”
Telemedicine enhances palliative care
The surge in telemedicine since the arrival of COVID-19 has engendered much discussion about its future role in the delivery of healthcare services. One area sparking some recent attention: the delivery of palliative care. “While studies have shown,” writes MedPage Today’s Larry Beresford, “that palliative care improves quality of life and reduces caregiver burden, not everyone can access it. Telemedicine can dramatically increase access for people in community settings, at home, in assisted living facilities, and in long-term care. One clinician can see 8 to 10 seriously ill patients a day at multiple sites without leaving the office — exponentially increasing access. It’s not only more efficient for the clinician, it expands access for patients who can get to the clinic only with difficulty because they are homebound, live miles away or constrained by geographical barriers, or depend on public transit. ‘We have made huge strides toward building palliative care into the healthcare system focused on the broad concept of improving quality of life, recognizing that serious illness can turn one’s life upside down,’ says Ashwin Kotwal, MD, assistant professor of geriatrics at the University of California San Francisco. ‘It’s not just about end-of-life support but addressing physical symptoms throughout the disease trajectory, along with psycho-social and spiritual needs. And communication is a big part of what we do.’ There was a time not long ago when sharing bad news such as a terminal prognosis via a computer screen was controversial. Now we’re in a situation where that’s more the normal way. But we have to make sure it’s not just a substitute for in-person care but a service that adheres to quality standards.’ Added Dana Lustbader, MD, chief of palliative medicine at ProHEALTH, a multispecialty medical group in the New York City area: ‘People love it. Families love it. Even those over 85 who said we can’t do this learn to love it. When it’s coached and taught and there’s access to the internet, it’s a game changer.’”
Dr. Lamas links hospitals’ expertise and patients’ survivability
Having begun this issue with some thoughts from Boston critical care physician Daniela J. Lamas, we turn to another of her New York Times’ op-eds in which she reflects on the significant difference that hospital expertise and capacity make with respect to COVID-19 patient survivability. “While even the best possible treatment couldn’t save everyone, those who have survived did so because of meticulous critical care, which requires a combination of resources and competency that is only available to a minority of hospitals in this country. And now, even as we race toward the hope of a magic bullet for this virus, we must openly acknowledge that disparity — and work to address it. Though the public has largely focused on new treatments — with excitement and controversy swirling around remdesivir and dexamethasone and convalescent plasma — none of these are any use without the people and systems to deliver critical care, a laborious and resource-intensive process. In the I.C.U., we must interpret and react to each indicator. Our nurses are frequently at the bedside, attuned to the most minute change. We make constant small tweaks to the ventilator and to our medications to support blood pressure. Though it looks passive in a way — a comatose patient in a bed — and is not at all glamorous, critical care is an immensely active process. Anyone who has cared for a coronavirus patient knows how quickly they can crash. As a doctor, I’ll admit that we are rarely the first to intervene in these moments of crisis. Instead, we rely on nurses and respiratory therapists. More times than I would like to count, I have watched with gratitude as their interventions — suctioning, repositioning a breathing tube, increasing the dose of medications to raise blood pressure — avert certain disaster. It is humbling to realize that had our nurses been spread too thin, these relatively small events would have turned catastrophic. Here in Boston, we were busy but never underwater. As the pandemic tears through rural areas of the country with even less access to resource-rich hospitals, I am worried that the inequities of this virus will only become more entrenched. Just as we devote resources to finding a vaccine, we must also devote resources to helping hospitals deliver high-quality critical care. One since recovered but previously extremely critical COVID-19 patient reminded me that she had been transferred to us from a small hospital in the western part of our state. ‘If I hadn’t been transferred, I would have died,’ she said. I paused, reflecting on that. What had we done for her, really? We had never enrolled her in a clinical trial. There was no mystery diagnosis to be solved, no high-risk procedure performed. We simply did our best to minimize damage to her lungs and keep her other organs functioning while we waited. Which makes it even more painful to admit that she might be right.”
Professor Snyder reflects on a brush with death and American health care
Noted Yale historian Timothy Snyder has just published a book about his near-death experience at the hands of the American healthcare system. Chronicling his bout with appendicitis that led to an almost fatal encounter with sepsis, Snyder, in a New York Review of Books excerpt, describes a litany of clinical errors in Florida and New Haven hospitals. “My body was at the mercy of the doctors’ permanent distraction. If the attending physician and the resident in the emergency department hadn’t been distracted, they could have taken a moment to look up the record of my previous surgery themselves, noted the liver problem, and spared me the second spinal tap. If they had been able to talk to me for a moment longer, I could have shown them my Florida record, which indicated elevated liver enzymes, a clue as to what was happening.”
Snyder, however, doesn’t stop with a personal tale; he elevates it into a meditation on how the failings of American healthcare are undermining the American promise of liberty and justice for all. “The beginning of life in this country is frightening and uncertain,” he writes. “Care of expectant mothers is wildly uneven and grossly inadequate. America as a whole does worse than forty countries in infant mortality. Young adulthood has lost its charm. Unless something changes, millennials will live shorter lives while spending more money on health care than Gen-X parents or boomer grandparents. Our system of commercial medicine, dominated by private insurance, regional groups of private hospitals, and other powerful interests, looks more and more like a numbers racket. We would like to think we have health care that incidentally involves some wealth transfer; what we actually have is wealth transfer that incidentally involves some health care. If birth is not safe, and is less safe for some than for others, then something is wrong. If more money is extracted from young adults for health care, but they are less well than older generations, something is wrong. The purpose of medicine is not to squeeze maximum profits from sick bodies during short lives but to enable health and freedom during long ones. Our malady is particular to America. It is not that other countries have more knowledge or better doctors. It is that they have better systems. If some Americans have access to health care thanks to wealth or connections, they will feel pleased because they are included and others are not. Such a feeling turns our human concern about health into a silent yet profound inequality that undermines democracy. When everyone has access to decent care at minimal cost, as is true for almost all of the developed world, it is easier to see fellow citizens as equal. Part of our malady is that there is nothing in our country, not even life and not even death, where we take the proposition that ‘all men are created equal’ seriously. If health care were available to everyone, we would be healthier not only physically but also mentally. Our lives would be less anxious and lonely because we would not be thinking that our survival depended on our relative economic and social position. We would be profoundly more free. Since health is so elemental to existence, confidence about care is an important part of freedom. If everyone can assume that treatment will be available when necessary, they can turn their minds and their resources to other matters, make freer choices, pursue greater happiness. If health care is a privilege rather than a right, it demoralizes those who get it and kills those who do not. Rather than pursuing happiness as individuals, we are together creating a collective of pain. And so our malady concerns us all. If health care were a right, we would all have better access to treatment and would all be liberated from the collective of pain. Health care should be a right, not a privilege, for the sake of our bodies, and for the sake of our souls.
Read the latest news about Best Practice Caregiving
The latest Best Practice Caregiving (BPC) newsletter highlights programs for specific caregivers and programs for Spanish-speaking caregivers, and offers details about the research aspect of all programs included in the resource.
To read the newsletter, click here.
BPC is a web-based database developed for organizations that serve family and friend caregivers of those living with dementia. With more than 40 proven, vetted dementia caregiving programs, BPC is a rich resource for organizations looking to identify, compare and adopt best-fit programs. BPC is a collaboration between FCA,  Benjamin Rose Institute on Aging, and the The Gerontological Society of America, and was funded by The John A. Hartford Foundation, Archstone Foundation, and RFF Foundation for Aging. To learn more about this exciting new resource, visit bpc.caregiver.org and check out a recording of a webinar featuring leaders from FCA, Benjamin Rose Institute on Aging and The John A. Hartford Foundation. Click here. Please note that registration is required to view the recording.

Seeking your feedback. If you’ve already had a chance to use Best Practice Caregiving, we’d like to get your feedback on the resource. Please go to bpc.caregiver.org and click on the Survey link in the upper-right corner.
Motivating Loved Ones:
How to Communicate Better and Work Together to Help Those You Care For Stay Active and Engaged
This webinar will provide family caregivers an opportunity to learn the basics of Motivational Interviewing, a proven method for increasing engagement. When practiced by caregivers, Motivational Interviewing can help a care recipient become more active and involved in their health and well-being. Participants will learn practical strategies to help encourage and inspire care recipients to be more physically active, participate in rewarding activities, improve their diet, tidy up around the house, and more.

When: Wednesday, September 30, 11 a.m. to 12 noon (PT)
Cost: No charge
Registration: Click here
Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to akkaplan@verizon.net or policy_digest@caregiver.org.
FCA TWEETS @CaregiverAlly
Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
and Executive Director Kathleen Kelly @KKellyFCA.
Professional Studies
Graduate Studies
Help support FCA/NCC’s continuing advocacy efforts today with a
donation through Network for Good (or by check) by clicking here.
We gratefully thank you for your support!
If you shop on Amazon please consider supporting FCA through AmazonSmile. Amazon will donate to FCA based on your purchase. All you need to do is use the following link when you shop: smile.amazon.com/ch/94-2687079.
Are You Receiving Connections?

FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents—including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

Stay connected with FCA/NCC on social media
101 Montgomery Street, | Suite 2150 | San Francisco, CA 94104
(800) 445-8106 | www.caregiver.org
All rights reserved.