Read Caregiving Policy Digest on a webpage.

“For the last three and a half years, my husband has lived at the Isabella Geriatric Center, a two-tower high-rise nursing home in the heart of Washington Heights. In a period of six weeks, as many as 98 people living there died from COVID-19. I am reassured by the fact that my husband is isolated in his own room. The staff members on our floor are invested in my husband’s care — they have become our family. Some staff members call him Mr. Bob. His aides call him Papi Chulo. I call him my love. One of our night aides has worked at Isabella for over 25 years. One night I asked him, “Do you love what you do?” and he responded, “This is what we are supposed to do on this earth: serve the sick.” What I really want is to walk into Isabella as I have hundreds of times in the last few years, see with my own eyes how my husband is doing and give him a hug. Instead, I call the nurses on his floor. They tell me his vitals are perfect: oxygen levels 100 percent, no fever, no coughing. His blood pressure is better than mine. My husband was thrown into a war on the vulnerable without a chance — he cannot care for himself or protect himself from a virus that doesn’t have a vaccine. The fact that he is still alive is a miracle. As of May 10, it was likely that over 5,000 residents in nursing homes statewide had perished. They matter. Nursing homes are not places to die. They are places to give support to families that are overwhelmed and have surrendered to the need of extra hands for the safety and comfort of their loved ones.”

— Marcella Goheen, The New York Times

IN THIS SECTION

With the nation convulsed by a pandemic and severe civil unrest, family caregivers have been faced with a rapidly evolving and dizzying sequence of care facility lockdowns, economic disruption and conflicting COVID-19 reopening scenarios.

CMS mandates slow reopening of nursing homes, and advocates voice concerns

On May 18 CMS announced just how much access to nursing homes should be eased during phases one and two of the relaxation of COVID-19 restrictions. The answer: not very much. CMS’s guidelines, The Washington Post reported, “urge state and local officials to refrain from allowing virtually all visitors into nursing homes or other senior care facilities until several conditions are met. They include making sure a nursing home has no new cases of COVID-19, the disease caused by the coronavirus, for four weeks. The guidance sets a significantly higher bar for resuming normal operations in nursing homes filled with vulnerable, elderly residents than the guidelines for businesses, stores and other workplaces. Leading advocates for nursing home residents and their families,” The Post noted, “were critical of the CMS recommendations, from various vantage points. From Toby Edelman, senior policy attorney with the Center for Medicare Advocacy: ‘As usual throughout the pandemic, the federal government is once again putting responsibility on governors and others to make actual decisions. We need national standards, based on science and expert advice, that everyone follows, not recommendations that can be ignored.’ Michael Wasserman, president of the California Association of Long Term Care Medicine, faulted government officials for not relying more on geriatricians and other experts in long-term care to decide when facilities can safely open. ‘That’s what we trained for our whole lives.’ And Mike Dark, a lawyer with the nonprofit group California Advocates for Nursing Home Reform, said the guidelines ‘could mean waiting for months or years before crucial caregiver visits can start again. The virus is already so widespread in facilities, and access to testing so limited, that asking for all residents and staff to test negative first means residents and families will lose hope of seeing one another again. These are issues that CMS has already badly dropped the ball on, and now they’re making families pay the price for it.’” Finally Katie Smith Sloan, CEO of Leading Age, which represents non-profit operators of nursing homes, voiced  concern over the guidelines’ feasibility. “We do want to have a plan to safely reopen nursing homes. But there are just too many homes out there, and other aging services providers, that are still desperately in need of testing and personal protective equipment. And without those, it is virtually impossible to reopen nursing homes safely. Consider,” she observed, “testing requirements: If you have a test, and you have to send it away and don’t get the results back for three or four days, you’re in limbo for three or four days with staff. I just keep hearing over and over again from our members that getting access to testing with quick results is not an easy thing.”

CMS/CDC data document COVID wreakage

June has now seen the first CMS/CDC release of national statistical data indicating the extent of the COVID-19 impact on nursing home residents. In an accompanying letter to state governors, the agencies revealed that “as of May 24, 2020, approximately 12,500 nursing homes — approximately 80 percent of the 15,400 Medicare and Medicaid-certified nursing homes — had reported to the CDC. These facilities reported over 60,000 confirmed COVID-19 cases and almost 26,000 deaths. This data, and anecdotal reports across the country, clearly show that nursing homes have been devastated by the virus. As we look ahead to reopening America, CMS and CDC are taking a number of actions to keep nursing home residents safe. First, CMS is increasing penalties for noncompliance with longstanding infection control requirements. CMS is ensuring states conduct necessary surveys of nursing homes by tying survey funding to State Survey Agency performance. CMS is also continuing deployment of its network of Quality Improvement Organizations to provide an array of assistance and will work with governors to target assistance to facilities that have experienced outbreaks.”

The data release was preceded on May 20 by a GAO report documenting widespread and persistent rates of infection control deficiencies even prior to the COVID-19 pandemic. “Our analysis of CMS data,” GAO found, “shows that infection prevention and control deficiencies were the most common type of deficiency cited in surveyed nursing homes, with most nursing homes having an infection prevention and control deficiency cited in one or more years from 2013 through 2017 (13,299 nursing homes, or 82 percent of all surveyed homes). Infection prevention and control deficiencies cited by surveyors can include situations where nursing home staff did not regularly use proper hand hygiene or failed to implement preventive measures during an infectious disease outbreak, such as isolating sick residents and using masks and other personal protective equipment to control the spread of infection. Many of these practices can be critical to preventing the spread of infectious diseases, including COVID-19. In each individual year from 2013 through 2017, the percent of surveyed nursing homes with an infection prevention and control deficiency ranged from 39 percent to 41 percent. In 2018 and 2019, we found that this continued with about 40 percent of surveyed nursing homes having an infection prevention and control deficiency cited each year.”

Nursing home and hospital isolation exacts ongoing toll

As the COVID restrictions continue to separate care residents and family members, the toll exacted by isolation, writes Dr. Tom Alsaigh, remains excruciating. “Consider non-COVID-19 hospitalized patients as well; their trauma is just as distressing as they live a digital nightmare with their families via blurry video chatting about risky surgeries and end-of-life care. Anecdotal sentiment from patients and family members suggests that while video chatting services help somewhat, they are inadequate at alleviating the consequences of physical isolation. Families’ descriptions of the intense trauma they experience because of these restrictions should also worry society about the unintended consequences of such draconian policies, including a widespread increase in post-traumatic stress disorder (PTSD) in both patients and families. One particularly poignant moment shared by a colleague involves the desperation of a dying father — with a non-COVID-19–related illness — to see his son with autism one last time before passing away. Despite multiple attempts by staff to grant this dying wish, the request was ultimately denied due to a nebulous on-the-spot policy decision that a child with autism may not be able to appropriately wear a mask while in the hospital. The father died shortly afterwards without seeing his son. So, what is the solution? A measured policy based on compassion and scientific merit should be foundational and guide decision-making on visitation privileges. The devastating lack of personal protective equipment has made this prospect more difficult. Understandably, hospital systems cannot afford to distribute this equipment liberally to family members, as it is essential to protect the health of frontline workers. Because of this, any policy that eases visitor restrictions will undoubtedly invite risk to patients and family members, but it is not impossible to imagine a scenario where the benefits outweigh the risks of reuniting family members, if done carefully and methodically.”

Bloggers’ ‘call to action’ targets Covid-19 nursing home morbidity and mortality

A group of Health Affairs bloggers have issued a “call to action”to reduce COVID-19 deaths in nursing homes. Success in reducing COVID-19-related morbidity and mortality in the nursing home setting, they write, requires urgent action in three areas: 1) enhancing infection control with an individualized plan for each nursing home that incorporates both regulatory guidance and current literature and is feasible to implement; 2) ensuring necessary resources to implement infection control plans, especially adequate staff, training, personal protective equipment (PPE), COVID-19 testing, creation of units for COVID-19 positive patients, and access to onsite ancillary services; and 3) mirroring the federal Coronavirus Commission for Safety and Quality in Nursing Homes by establishing state-level task forces focused on improving communication and collaboration between nursing homes and families, health care providers (hospitals, health systems, home health agencies, physician organizations), and government agencies.

Paula Span recommends five-step effort to strengthen nursing home protections

Paula Span contributes her list of recommendations for how to strengthen nursing home protections in her New York Times’ New Old Age column. The immediate consensus priority is greatly expanded rapid virus testing and tracing for residents and staff. Then it is on to infection control — mandatory full time infection preventionists; nursing home facility redesign — renovations to create smaller households within older nursing homes; workers pay — higher wages with hazard pay, health coverage and paid sick leave; and the return of visitors. “It made sense,” Span writes, “to bar outsiders during the height of the pandemic, when knowledge of symptoms and transmissions was even more incomplete than now. But for long-term residents, isolation carries its own perils. Some geriatricians have called on nursing homes to designate a relative or friend to undergo regular testing and learn the proper use of protective equipment, then be allowed access. ‘Older people’s voices are missing from this discussion,’ Cornell University geriatrician Dr. Karl Pillemer said. ‘They may want to make the decision to see family members, at their own risk.’”

Researchers cast doubt on link between death rates and SNF quality ratings

Amid the terrible accounts of the coronavirus assault on nursing home residents, researchers led by Brown University’s Prof. Vincent Mor, have analyzed data from facilities in 26 states operated by Genesis Healthcare in an effort to determine what factors might be implicated in higher facility death rates. As reported in Modern Healthcare/Associated Press, “Preliminary research indicates the numbers of nursing home residents testing positive for the coronavirus and dying from COVID-19 are linked to location and population density — not care quality ratings — said Mor. ‘It is not necessarily related to the good star, bad star ... of the home because really good homes, they have staff who go home and they are going to be living in an environment with lots of COVID and the staff will bring it in with them.’ Homes where residents were infected with the coronavirus tended to be larger than other facilities, in urban areas and in counties with higher infection numbers. The data also showed the number of infections did not correlate to quality ratings or prior infection violations. In Connecticut, eight nursing homes have had 30 or more coronavirus deaths. Of the eight, three have five-star ratings, two were given four stars, one had three stars, one had two stars and one had one star. The operators of Abbott Terrace and Kimberly Hall North and staff say it may never be known exactly how the virus got into the homes, but once it was there, it spread quickly. ‘It was like walking into a fire and no one knew how to put it out,’ said Rosaina Rivera, a 41-year-old nurse at Abbott Terrace who tested positive for the virus in late March and recovered. ‘It was like an invisible demon possessing the building.’”

Dementia and Alzheimer’s patients pose extra isolation risks in hospitals and long-term care facilities

COVID-19 induced isolation perhaps engenders an even greater degree of poignancy in situations involving dementia and Alzheimer’s patients. As NextAvenue’s Edie Grossfield reports, University of Pennsylvania geriatrician and professor Jason Karlowish, “is especially concerned about delirium because it’s a dangerous and potentially fatal condition common in older hospitalized adults — especially those with dementia. Delirium is typically characterized by significant confusion and either symptoms of high agitation or deep withdrawal. Because family caregivers know their loved ones so well, they can be a big help to nursing staff taking care of people with dementia. Karlawish bets most nurses would be very happy to have caregivers around, especially if the patient begins to develop delirium. ‘I can guarantee you at that point (the nursing staff) might say, “You know, I think it might be a good idea if you did come in. Let me talk to the doctor and see if we can get some PPE lined up for you and work things out here. Or at least let me get you on the phone with her.’’’”

In the case of nursing homes, writes ABC News’ Jack Arnholz, “With nearly half of all long-term care facility residents living with Alzheimer’s or dementia, individuals with the disease have become one of the most disproportionately impacted groups from COVID-19 in the country. Still, health concerns are not the only extra burden these individuals carry amid the outbreak. The enforced separation of nursing home residents from their families and loved ones may only increase the hardship. ‘Depending on the degree of progression of the disease, someone with Alzheimer’s may not understand what’s going on,’ said Alzheimer’s Association CEO Harry Johns. ‘[They] may not understand then why they can’t leave the house. Why the kids are at home and extended family. Those kinds of confusions can, in and of themselves create challenges for the individual who has dementia, as well as for those carers.’ Johns says he believes current public health circumstances impact those with Alzheimer’s more than other care home residents. ‘For any resident that family contact is so important if someone is ill. But for Alzheimer’s, people who have dementia, it is especially difficult because the connections to family can — when someone has progressed — keep them grounded.’”

Senate Aging Committee witness links race to higher COVID-19 cases and deaths, but not SNF stars or for-profit status

With three major COVID-19 rescue packages thus far enacted into law, debate is underway over what should make its way into a fourth one likely to gain congressional and White House approval by the fall. One emerging item of Democratic-Republican contention concerns the granting of liability waivers for coronavirus-related claims. Laying out some initial considerations, University of Chicago Professor R. Tamara Konetzka told a Senate Special Committee on Aging on May 21 that “the high rates of COVID-19 cases and deaths in nursing homes are not surprising: Nursing homes house, in close quarters, large numbers of people with multiple comorbidities who need hours of hands-on care on a daily basis. These realities of long-term care make social isolation impossible. Facilities are often understaffed and depend on Medicaid reimbursement for the majority of their residents. Existing staff gaps are exacerbated by pandemic-related absences for illness or child care. Thus, working staff members must often care for both COVID-positive and COVID-negative residents, increasing the probability of transmission.

“‘So,’ she asked, ‘is the spread of COVID-19 in nursing homes inevitable, or have some types of nursing homes managed better than others to avoid new infections from occurring?’ Konetzka answered by reporting the results of a study of a sample of nursing homes from twelve geographically diverse states. ‘Our analysis,’ she said, ‘revealed three key results: 1) a strong and consistent relationship between race and the probability of COVID-19 cases and deaths; nursing homes with the lowest percent white residents were more than twice as likely to have COVID-19 cases or deaths as those with the highest percent white residents; 2) no meaningful relationship between nursing home quality and the probability of at least one COVID-19 case or death (We measured quality using the Nursing Home Compare overall star rating); and 3) no meaningful differences by profit status and only a weak relationship with Medicaid; for-profit nursing homes and not-for-profit nursing homes were equally likely to have cases (36%); a suggestive but weak relationship was found for the percent of residents on Medicaid, with nursing homes somewhat more likely to have cases if they were more dependent on Medicaid.’”

NYT reporters challenge for-profit SNFs’ COVID-19 defensive capability

A more jaundiced view of the for-profit nursing home industry, however, appeared in a piece by New York Times reporters dissecting the industry’s complex financial and ownership arrangements. When the pandemic struck, they write, “the majority of the nation’s nursing homes were losing money, some were falling into disrepair, and others were struggling to attract new occupants, leaving many of them ill equipped to protect workers and residents as the coronavirus raged through their properties. Their troubled state was years in the making. Decades of ownership by private equity and other private investment firms left many nursing homes with staggering bills and razor-thin margins, while competition from home care attendants and assisted-living facilities further gutted their business. Even so, many of their owners still found creative ways to wring profits out of them, The toll of putting profits first started to show when the outbreak began. No nursing home could be completely prepared for a pandemic as devastating as COVID-19, but some for-profit homes were particularly ill equipped and understaffed, which undercut their ability to contain the spread of the coronavirus, ‘The pandemic has brought a lot of these issues to the forefront,’ said David Grabowski, professor of health care policy at Harvard Medical School. ‘With this huge health crisis and economic downturn, we are all of a sudden seeing how risky it is to have the ownership split between the real estate side that has the most valuable asset and the operator, who is left with much less.’ Controlling the real estate gives investors, including real estate investment trusts, leverage to raise rents. Separating the real estate from the operating business can also help limit liability in wrongful-death lawsuits, because the latter typically has little cash and few assets.”

COVID-19 liability waiver debate rages in states and on Capitol Hill

These developments form a backdrop for the unfolding liability waiver debate both at the state level and in Congress. As Modern Healthcare/Associated Press (MH/AP) reported in early May, “Faced with 20,000 coronavirus deaths and counting, the nation’s nursing homes are pushing back against a potential flood of lawsuits with a sweeping lobbying effort to get states to grant them emergency protection from claims of inadequate care. At least 15 states have enacted laws or governors’ orders that explicitly or apparently provide nursing homes and long-term care facilities some protection from lawsuits arising from the crisis. And in the case of New York, which leads the nation in deaths in such facilities, a lobbying group wrote the first draft of a measure that apparently makes it the only state with specific protection from both civil lawsuits and criminal prosecution. Now the industry is forging ahead with a campaign to get other states on board with a simple argument: This was an unprecedented crisis and nursing homes should not be liable for events beyond their control, such as shortages of protective equipment and testing, shifting directives from authorities, and sicknesses that have decimated staffs. ‘As our care providers make these difficult decisions, they need to know they will not be prosecuted or persecuted,’ read a letter sent this month from several major hospital and nursing home groups to their next big goal, California, where Gov. Gavin Newsom has yet to make a decision. Other states in their sights include Florida, Pennsylvania and Missouri.”

Countering this push, MH/AP continued, “watchdogs, patient advocates and lawyers argue that immunity orders are misguided; at a time when the crisis is laying bare such chronic industry problems as staffing shortages and poor infection control, legal liability is the last safety net to keep facilities accountable.” On May 28, 250 national, state and local advocacy organizations wrote the Senate’s majority and minority leaders to voice their strong opposition to nursing home liability waiver proposals. “Prior to COVID-19,” their letter stated, “nursing home residents were visited by their families and friends, who kept a watchful eye on the care their loved ones were receiving. Residents were assisted by the advocacy of long-term care Ombudsmen, protection and advocacy agencies, and licensing agencies conducted regular inspections and responded to complaints. Currently, none of these necessary protections are operating sufficiently to ensure resident safety. Due to lockdowns, residents are living and dying in nursing homes isolated from their families and absent any outside oversight. In truth, very few people, other than staff, know what is happening in nursing homes at this time. Essentially, the only mechanism available for a nursing home resident to hold facilities responsible for substandard care is judicial recourse. By removing this safety net, nursing homes will have little to no oversight. Legal liability has always functioned as a safeguard for nursing home residents by incentivizing nursing homes to provide quality care and comply with laws and regulations. It has served as a silent overseer of nursing homes who know that individuals in this country will not stand for neglect and inadequate care. By providing immunity, Congress would be placing nursing home residents in jeopardy at a time when they are the Americans suffering most from the COVID-19 outbreaks. As a nation, we cannot tolerate rewarding nursing homes for years of cost cutting and profit maximizing by relieving them of responsibility.”

COVID-19 threatens state health coverage expansion

The devastating effects of COVID-19 have appeared not only in daily infection and mortality statistics but in states’ steadily increasing budget woes. While hoping for an infusion of funds from a fourth pandemic rescue bill, state governors are confronting severe revenue shortfalls as they attempt to meet mounting Medicaid costs. At the same time, among other demands, the crisis is interrupting moves that were afoot before COVID to expand health insurance coverage. As Politico’s Dan Goldberg reports, “A once-unlikely deal in deep-red Kansas to expand Medicaid to about 150,000 poor people has been tabled for this year. In California, Gov. Gavin Newsom has abandoned plans to extend coverage to 27,000 undocumented immigrant seniors after the pandemic blew a $54 billion hole in the state budget. And in Colorado, the pandemic has stalled a heated legislative debate over a public option to compete with private insurers. At the same time, Washington state has scaled back the launch of its pioneering public option for this fall, citing the challenge of standing up the program as hospitals and health insurers are consumed by the coronavirus response. The chances that Democrats can revive many of these ambitious coverage plans will depend on the political and economic outlook that emerges after the health emergency subsides. As the prognosis for a quick economic recovery remains uncertain, some states facing massive revenue declines — including California, New York and Ohio — have already made or planned Medicaid cuts as millions of newly jobless Americans are expected to strain the safety net health care program for the poor. Meanwhile, Medicaid expansion plans have already been scrambled in two red states that until this year had long resisted the program. In Oklahoma, which has the nation’s second-highest uninsured rate, Republican Gov. Kevin Stitt called off his plans to expand Medicaid on July 1. The move came a week after Stitt vetoed a plan for financing the expansion, noting that Medicaid is facing greater strain than expected since the coronavirus emerged.”

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AARP-NAC report offers sweeping and updated review of the demographic, economic and familial dimensions of ‘Caring in the U.S.’

AARP and the National Alliance for Caregiving (NAC) have combined their research forces to deliver an updated report on “Caregiving in the U.S.” Five years after their first comprehensive analysis of caregiving data, the researchers have documented significant increases across major categories of caregiving impact, as seen in the accompanying infograph. “Ultimately,” the report argues, “caregivers are us, with one out of every five American adults providing care in a given year — from all walks of life and backgrounds. This research highlights the varied experiences and situations of caregivers in the United States and points to the impacts many caregivers face as a result of their stepping up to help family and friends. Unpaid caregiving is increasing in prevalence and the U.S. population continues to age and live longer with more complex and chronic conditions. Caregivers feel the push and pull of providing care on their time, their financial well-being, their health, their family, their work, and their own personal well-being. They may find themselves in need of information, resources, benefits, or programs — but these things are often difficult to find or access, or too expensive to afford. Unpaid caregivers are serving as a core piece of the health and LTSS systems, as well as the main source for long-term care for adults living at home and in the community. Of key concern for policy makers and other stakeholders is whether this arrangement is sustainable with the care gap looming on the horizon, as more people need care and fewer potential family members are available to provide that everyday help. Without greater explicit support for family caregivers in coordination among the public and private sectors and across multiple disciplines, overall care responsibilities will likely intensify and place greater pressures on individuals within families, especially as baby boomers move into old age. In addition, the caregivers themselves require support to ensure they do not suffer deteriorating health effects, financial insecurity, or a combination of these negative impacts. There is an opportunity for public health experts, policy makers, health and social providers, researchers, employers, financial institutions, and other stakeholders to work together to improve the health care and LTSS systems so they better address the needs of caregivers. Together, we can develop and enact solutions to support family caregivers and to improve their well-being and the well-being of those for whom they provide care.”

Resources for pandemic-related developments

Readers seeking to follow pandemic-related developments, including federal and state actions, Medicare and Medicaid regulatory announcements, and patient/beneficiary advocacy groups’ efforts will find the following websites helpful:

World Elder Abuse Awareness Day webinar

In observance of World Elder Abuse Awareness Day (WEAAD) on June 15, the Administration for Community Living (ACL) will convene a webinar featuring federal officials in a conversation about major elder justice issues, trends and available resources. Registration for this event is can be accessed here. In addition, the following websites offer detailed information about elder abuse prevention: the USC Center on Elder Mistreatment; the American Bar Association’s Commission on Law and Aging; and the National Center on Law and Elder Rights.

IN THIS SECTION

COVID-19 panic fosters patient neglect of unrelated illness

One byproduct of the COVID-19 pandemic: “In a world seated with anxiety, writes Katie Hafner in The New York Times, “fear is gripping not just people who are ill with the coronavirus but those in urgent need of other medical care. Even as the number of COVID-19 cases declines in many places, patients with cancer, heart disease and strokes, among others, are delaying or forgoing critical procedures that could keep them alive. And as the virus reignites in pockets of the country, people are ignoring symptoms altogether, afraid to set foot in emergency rooms or even doctors’ offices. Declining crucial, potentially lifesaving treatment might seem irrational. Mental health experts explain that anxiety affects the part of the brain involved in thinking and planning for the future. It arises when that part, the prefrontal cortex, doesn’t have enough information to accurately predict what lies ahead, causing the brain to spin scenarios of dread. Enter panic. ‘If you have anxiety and then you exacerbate that by watching the news and reading social media, that’s where you get panicked,’ said Dr. Jud Brewer, a psychiatrist and behavioral neuroscientist at Brown University. ‘And the rational, thinking parts of the brain stop functioning well when we’re panicked. Panic, in turn, can lead to impulsive behavior and dangerous decisions.’ ‘People are saying: So I’m having a heart attack. I’m going to stay home. I’m not going to die in that hospital,’ said Dr. Marlene Millen, a primary care physician at the University of California, San Diego. One of the common safety measures — banning visitors, even close family members — is a huge reason for patients’ fear and apprehension. ‘The hospital was an ominous, nerve-racking and scary place for patients even before COVID,’ said Dr. Lisa VanWagner, a transplant hepatologist at Northwestern Medicine in Chicago. ‘Now you take a stressful situation like a pandemic and you tell people that they cannot have their normal support system while they’re in the hospital, and that really magnifies those fears.’ Bill Sieber, a psychologist at U.C.S.D., said the key for fearful patients was to develop a semblance of control over their predicament. ‘Control is key. If you can’t control the fact that your spouse can’t come into the recovery room, ask what you can control. We can,’ he said, ‘control our breathing in a major way. Breathing signals the brain to calm down.’”

Ventilator fears prompt ‘living will’ changes

Another COVID-19 byproduct: older people are changing their living wills. “For older adults contemplating what might happen to them during this pandemic,” writes Judith Graham in The Washington Post, “ventilators are a fraught symbol, representing a terrifying lack of personal control as well as the fearsome power of technology. Last month, Joyce Edwards, 61, who is unmarried and lives on her own, revised her advance directive to specify that ‘for COVID-19, I do not want to be placed on a ventilator.’ Previously, she had indicated that she was willing to try a ventilator for a few days but wanted it withdrawn if the treatment was needed for a longer period.

‘I have to think about what the quality of my life is going to be,’ she said. ‘Could I live independently and take care of myself — the things I value the most?’ But the choice may not be as black-and-white as go on a ventilator or die. ‘We can give you high-flow oxygen and antibiotics, Duke University medical professor Christopher Cox said. ‘You can use BiPAP or CPAP machines [which also deliver oxygen] and see how those work. And if things go poorly, we’re excellent at keeping you comfortable and trying to make it possible for you to interact with family and friends instead of being knocked out in a [medically induced] coma.’”

COVID-19 burdens parents of adults with intellectual and developmental disabilities

The Washington Post’s Caitlin Gibson focuses her attention on one group of individuals with particular fears stemming from the pandemic’s onset: parents of adults with intellectual and developmental disabilities. They are grappling, Gibson writes, “with unprecedented challenges and fears unleashed by the pandemic. There are parents who have found themselves separated from children who live in group homes or facilities that have closed their doors to visitors, seeking to protect the staff and residents. There are parents who are caring for their children at home, now struggling with new layers of stress: How to care for someone who is distraught over the loss of a stabilizing routine? How to keep everyone in a shared household safe, especially if family members are particularly at risk of suffering severe complications of COVID-19? Ellen Blackwell has been worried about the staff members without personal protective equipment who support Robert, her severely autistic child,. She dusted off her sewing machine a few days ago, she said, gathering scraps of fabric to make homemade masks. In the weeks since the coronavirus pandemic has upended American life, Peter Berns, chief executive of the Arc of the United States, a national organization that supports people with intellectual and developmental disabilities, has heard a multitude of concerns raised by families and professional caregivers across the country. Nearly a million households in the United States include an adult with an intellectual or developmental disability who is living with a caregiver 60 or older and many other families help care for grown children who live independently or in supported housing. ‘They each face distinct challenges,’ Berns said, ‘but also share some universal worries. There’s also a softer dimension to this, an interpersonal side to this situation for folks who have intellectual disability and may have more difficulty understanding what’s happening, or may have behavioral issues that are exacerbated by anxiety,’ he said. ‘The disruption of routine is hugely significant.’”

COVID-19 survivors face ongoing recovery perils

While COVID-19 has cast its deadly impact widely and relentlessly, the fact remains that many victims are emerging as survivors. But, as critical care physician, Dr. Daniela J. Lamas observes, “it would be almost preferable to think that the removal of a breathing tube or a long-awaited discharge from the I.C.U. is the victorious end to the narrative. But that is not the case. Even as hospitals continue to care for the surge of critically ill patients, it is time to prepare for what comes after. Which is why, in recent weeks, dedicated COVID-19 ‘post-acute care facilities’ have sprung up throughout the country. While some of our patients are nursing home residents, many are younger and previously healthy, debilitated now after days to weeks of deep sedation and mechanical ventilation. They need to learn to walk again. To dress themselves. We have more than 50 admissions already and a waiting list that is pages long. At the same time, we are still caring for those without COVID too, transplant recipients and cancer patients, frail and vulnerable. To limit exposure, the COVID patients do not leave their rooms. And as in the acute care hospital, families cannot visit. Physical exams are kept to a minimum and most encounters take place via iPad. We know how to track and treat the physical consequences of our patients’ prolonged I.C.U. stays. These outcomes are visible. More insidious are the potential psychiatric and cognitive dysfunction that some former I.C.U. patients describe — anxiety and depression; hyperarousal and flashbacks to delirium-induced hallucinations that are characteristic of post-traumatic stress; poor planning skills and forgetfulness that might make it hard to remember medications or appointments. We have come to recognize that for many patients with coronavirus, the disease follows a characteristic pattern. For them, there is an initial constellation of symptoms — fever and cough — followed by a period of improvement and then a catastrophic decline. A disease with two waves. I think of us now, as a nation, at the end of our own first wave. We breathe a bit easier. Perhaps we will be OK, after all. But the second wave is coming — not of death this time, but of survival.

Palliative care providers adjust to COVID-19 isolation requirements

“Her COVID-19 patient,” writes Medscape’s Kate Johnson, “was close to death. Jennifer Holton, RN, had to tell his large family via a conference call. They wanted to be with him, but the logistics were complicated. Instead, Holton, a 22-year-old in her first year as an ICU nurse at Houston’s Baylor St. Luke’s Medical Center, offered to pray. ‘I said, Rather than me just going in there and saying your family is missing you, why don’t you all give me your names and I’ll go in there and pray with him.’ After he died, she comforted the family with the story of her prayer. Holton chose to start her career with night shifts so she could have more hands-on learning, but with the pandemic, she got a lot more than she bargained for. Already in her first year she has seen more deaths and sicker patients than she ever expected — but it’s the absence of patients’ families that is the hardest. ‘We usually don’t have as much resources at night, so it’s usually just us nurses doing the palliative care — even the chaplains can’t really come. ... I don’t think anyone could have been prepared for this,’ she said. Experiences like Holton’s, of feeling alone with dying patients and having little training in end-of-life care, are being expressed by clinicians around the globe. ‘There are institutions where ER and ICU docs are having to take this on,’ said Sunita Puri, MD, medical director of the Palliative Medicine and Supportive Care Service at the Keck Hospital and Norris Cancer Center, University of Southern California, Los Angeles. ‘There are many hospitals that don’t have either a full palliative care team or any team at all, or there might just be just one nurse practitioner, or there is simply not enough time to get another physician involved.’”

Kaiser Health News’ Will Stone punctuates Puri’s observations in his report on palliative care at the University of Washington Medical Center Northeast in Seattle. “‘You cannot underestimate the stress on family members who cannot visit and are now in a crisis mode trying to talk this through over the phone,’ said Darrell Owens, a doctor of nursing practice who runs the center’s palliative and supportive care. Owens, like other palliative care specialists in COVID-19 hot spots around the country, has seen his professional duties transformed by the deadly coronavirus. Patients and their families face abrupt decisions about the kind of care they want, and time for sensitive deliberation is scarce. Conversations once held in person are now over the phone, with all the nuances of nonverbal communication lost. The comfort of family at the bedside of the dying is all but gone. Before the coronavirus, Owens rarely worked in the emergency room. Now he’s there regularly, called in whenever a suspected or confirmed coronavirus patient at high risk of complications comes through the doors. ‘It is a totally different atmosphere in an emergency room,’ Owens said. ‘The conversations are more abbreviated than they would be because you are behind a mask, you are in a loud room, completely gowned up. It’s a tough way to talk through sensitive and crucial questions about a patient’s chance of survival and what they want.’ ‘This is completely unprecedented,’ said Dr. Diane Meier *, director of the Center to Advance Palliative Care and a professor at the Icahn School of Medicine at Mount Sinai. During the surge of coronavirus patients in New York City her hospital system set up a palliative care hotline for family members of patients. ‘You can’t see their facial expression, all the cues you normally get with face-to-face communication are very hard to pick up over the phone. Nonetheless, these conversations — especially with such a fast-moving and poorly understood virus — are an essential piece of the pandemic response. Palliative care specialists are a scarce resource, just like ventilators and ICU beds.’”

* Dr. Meier is featured in an FCA produced webinar, Palliative Care on the Front Lines of COVID-19. Information about the webinar with link is available under Family Caregiver Alliance Announcements below.

Dr. Ofri reflects on what has gone right and what has gone wrong during the health care system’s response to COVID-19

Taking a brief timeout to reflect on her experiences during the initial coronavirus onslaught at New York’s Bellevue Hospital, Dr. Danielle Ofri concludes that “the public has been forgiving, but hospitals got some things wrong.” Writing in The New York Times, Ofri begins by acknowledging that “The coronavirus pandemic unleashed an unprecedented wave of medical improvisation. ICU’s were fashioned from any corner of the hospital with a pulse. “COVID tents” were erected in parking lots. Urologists and orthopedists were drafted as medical interns. Nurses who’d been wearing administrative hats for a decade dusted off their clogs and re-entered the clinical fray, alongside traveling nurses easily identifiable by their pristine ID cards. Medical students were handed early diplomas to fill out the ranks. There’s no doubt that what went right in the hospital was far greater than what went wrong. But things did go wrong, and part of the professional commitment that has been so justly lauded entails an honest reckoning of our shortcomings. A nurse and I one night struggled to set up a donated vital-signs monitor. It’s not rocket science, but the interface wasn’t intuitive and we found ourselves cycling endlessly through the calibration protocols until we could hardly see straight. In the end we had to abandon it, having wasted precious time that was needed for patients. Care suffered in other ways too. The focus on the coronavirus meant that other types of tests were less available, leading to delays in diagnosis and treatment. Patients at home suffered as their non-COVID-19 illnesses were lost in the shuffle. Prescriptions ran out. Cancer treatments were delayed. Needed surgeries were postponed. As I call my patients at home to restart their medical care, I’m discovering infections untreated, insulin rationed, domestic violence unchecked and — not infrequently — patients who have died. Florence Nightingale,” Ofri concludes, “is known primarily as a nurse, but many biographies describe her as a statistician. She was a scrupulous gatherer of data — even data that made her colleagues and the public uncomfortable. Her pioneering contribution to health care was her understanding that the only way to improve outcomes for patients is to rigorously collect data and examine it critically. COVID-19 is still very much an active medical issue and will be so for the foreseeable future. But now that the adrenaline is receding, we need to take sober stock of how we responded before our memories fade. There are stupendous accomplishments to be justly proud of, even as they are steeped in grief for the patients and colleagues who lost their lives. We all know, however, that there are things we could do better next time. And there surely will be a next time.”

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Webinar Recording Available: ‘Palliative Care on the Front Lines of COVID-19’

The COVID-19 pandemic has brought home the importance of training on palliative care and the need for advanced planning for those with serious illness and their families. This webinar — featuring Dr. Diane E. Meier, CEO of the Center to Advance Palliative Care ( CAPC) — explores how COVID-19 has impacted medical decision-making for those in palliative care, how families can better communicate with health professionals at this time, and how COVID-19 has shaped future recommendations for palliative care practice. Please click here to view a recording of this webinar. The slides are available to view here.

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