US: Concerns of Neglect in Nursing Homes

(New York) – Potential neglect and prolonged isolation may have caused serious harm to many people in nursing homes in the United States during the Covid-19 pandemic, Human Rights Watch said today. 

Human Rights Watch interviews with more than 60 people, as well as reports from independent monitors, revealed concerns including extreme weight loss, dehydration, untreated bedsores, inadequate hygiene, mental and physical decline, and inappropriate use of psychotropic medications among nursing home residents. Staffing shortages, a longstanding issue that was a significant problem during the pandemic, and the absence of family visitors, many of whom nursing homes rely on to help staff with essential tasks, may have contributed to possible neglect and decline. Federal and state authorities should investigate the situation and ensure accountability for abuse. 

 

“Even before the pandemic, the US government failed to ensure that nursing homes were adequately staffed and regulated,” said Laura Mills, researcher on older people’s rights at Human Rights Watch. “The huge number of deaths in nursing homes from Covid-19 and emerging reports of neglect during the pandemic show that these failures have come at an enormous cost.”

More than 1.4 million residents and long-term care employees have been infected with the coronavirus and more than 178,000 have died, making up 34 to 40 percent of all United States deaths from Covid-19.

Even these numbers appear to underestimate the overall toll of the pandemic on nursing home residents. One analysis by the Associated Press estimated that there were about 40,000 excess deaths—beyond the normal number in a given year—in nursing homes nationwide that were not from Covid-19 between March and November. The precise causes merit investigation. 

Nursing home staff and administrators told Human Rights Watch that understaffing influenced their ability to provide sufficient and consistent support to residents, and that the absence of family visitors who previously assisted with care exacerbated this problem. Family members and independent monitors, who were restricted in their ability to visit facilities during the pandemic, raised concerns about inadequate care and limited transparency.

One woman, who had visited her mother, who was in her 70s and had dementia, in a nursing home daily to support her with eating and bathing before the pandemic, said that when she was no longer allowed to visit, her mother appeared more lethargic and less talkative during video calls.

After staff could not wake her mother during a call in the fall, the woman insisted that they take her to the emergency room. There, she said, a doctor told her that her mother had lost a significant amount of weight since the start of the pandemic and had a large infected bedsore. She died soon after. According to her death certificate, seen by Human Rights Watch, the cause of death was sepsis from a staph infection, and she was dehydrated and had a bedsore at the time of her death.

“Before Covid-19, when I said something it got fixed,” said the woman, who said she was not informed of changes to her mother’s condition before her hospitalization. “But [during the pandemic], I had to believe what they [staff] were telling me. It was my only option because I [couldn’t] get in.”

Independent monitors, known as ombudspersons, and investigators have also reported receiving complaints about potential neglect during the pandemic. The New York Attorney General’s Office received “reports of neglect and abuse of nursing home residents seemingly unrelated to Covid-19.” A September independent investigation of Connecticut nursing homes found that depression, unplanned weight loss, and severe bed sores among nursing home residents worsened during the pandemic.

The pandemic exposed many existing gaps in nursing home regulation, particularly around staffing. Academic research has found that nursing homes are chronically understaffed. Staff, administrators, and independent experts told Human Rights Watch that during the pandemic, shortages became particularly acute, undermining some nursing homes’ ability to provide quality care.

One certified nurse aide who has worked in nursing homes for decades told Human Rights Watch that during the pandemic, “We’re working [with] anywhere from 12 to 15 residents in the morning now, [when] we are supposed to have 7 or 8. You give [residents] five minutes each to eat so that you can feed everybody, but if… they’re not taking it in, you have to move on. If you want to do oral hygiene you have to shortcut it in some way in order to get to everybody.”

These challenges were exacerbated by the absence of family visitors, who prior to the pandemic often helped with essential tasks such as eating and hygiene, emotional support, and communication with staff. In March 2020, the Centers for Medicare &Medicaid Services (CMS), the federal regulator for nursing homes, restricted all visitation in response to the coronavirus, with the exception of end-of-life situations. CMS expanded visitation somewhat in September, though family members told Human Rights Watch that visits remained limited. In March 2021, amidst high vaccination rates among nursing home residents, CMS reauthorized most visitation.

Other policies contributed to reduced transparency into nursing homes’ operations. In March 2020, CMS barred long-term care ombudspersons from visiting facilities, with limited exceptions, and suspended all routine inspections by state surveyors except for infection control. Standard ombudsperson visits and state inspections were resumed in September, although some ombudspersons reported barriers to entry due to limited personal protective equipment or testing, and inspections have been inconsistent across states.

Despite serious concerns about the treatment of nursing home residents during the pandemic, 32 states have passed laws or executive orders shielding nursing homes from civil liability during the pandemic, making lawsuits more difficult. Several states have included criminal liability protections as well.

Even before the pandemic, many nursing home residents faced obstacles to accountability through the courts. In July 2019, the administration of President Donald Trump authorized nursing homes to use pre-dispute arbitration clauses in their contracts with residents, forcing them to waive their right to sue. CMS had previously stated such clauses were “fundamentally unfair” for residents and had a “deleterious impact on the quality of care.”

Under international human rights law, everyone, including nursing home residents, has the right to the highest attainable standard of health and to an effective remedy for violations of their rights. Older people also have the right under US and international law to be protected from abuse, mistreatment, and neglect.

“The arrival of vaccines to long-term care facilities undoubtedly brings great relief to a population that has suffered disproportionately from Covid-19, but there needs to be accountability for neglect and abuse,” Mills said. “The pandemic should serve as a wake-up call to everyone that we need systemic reform to prevent this from ever happening again.”

 

Methodology

From October 2020 to March 2021, Human Rights Watch interviewed 61 people, including six nursing home residents, 30 relatives closely involved in residents’ lives, seven non-medical and two medical nursing home staff, three nursing home administrators, six ombudspersons, and leading long-term care advocates, lawyers, and experts in the US. The Centers for Medicare & Medicaid Services, LeadingAge, and the American Health Care Association/National Center for Assisted Living (AHCA/NCAL) responded in writing to Human Rights Watch inquiries.

Human Rights Watch also distributed a survey to online groups for relatives of long-term care residents in October and November 2020. The survey received 564 responses from people in 45 states. The survey was not intended to capture a representative sample of nursing home resident family members and therefore cannot be used to generalize about the experiences of nursing home residents across the US, but the results largely echo the accounts from people Human Rights Watch interviewed.

 

Critical Staffing Shortages and Inadequate Worker Protections

Insufficient staffing in nursing homes is a longstanding problem. CMS has failed to set minimum staffing requirements, despite repeated calls from advocates and experts. The agency says that facilities must have sufficient staff to provide “the highest practicable physical, mental, and psychosocial well-being of each resident,” but leaves that determination to facilities. Staffing has a direct impact on quality of care: a 2018 Human Rights Watch report found that serious understaffing contributes to abuses such as the inappropriate use of antipsychotic drugs.

Several analyses of national staffing data during the Covid-19 pandemic recorded that shortages at many nursing homes became even more acute at this time: from April to June, more than 300 nursing homes with Covid-19 outbreaks reported at least one day in which staffing levels fell 40 percent below levels on a comparable day in 2019. Even as late as December 2020, 20.6 percent of nursing homes reported shortages of certified nurse aides. A January 2021 report by the New York Attorney General’s Office found that already low staffing levels in New York State “decreased further to especially dangerous levels in some homes.”

Longstanding concerns for staff—the vast majority of whom are women— include lack of health insurance, paid sick or family leave, and low wages, all of which have contributed to extremely high turnover rates and understaffing. The pandemic exacerbated those issues. It also left many workers exposed to the virus without sufficient personal protective equipment (PPE), particularly early in the pandemic. A survey conducted in May and June by the Service Employees International Union (SEIU), which represents nursing home workers, found that 78 percent of surveyed workers felt their lives were at risk at work.

Nursing home staff and administrators said staffing shortages influenced their ability to provide sufficient and consistent support to residents, including with eating, drinking, hygiene, and emotional support.

A certified nurse aide in a facility in the northeastern US said that typically she cared for 10 residents during a shift, but in 2020, she often had to care for 12 to 14 people, undermining her ability to perform all necessary tasks:

If you have 16 patients you definitely have to scale back, you can’t spend 15 or 25 minutes getting each patient up [like you usually would]. If you have 2 or 3 patients that need a shower on the day when you have 16 patients, you may skip a shower. Male patients that need a shave? You may skip it.

A nurse aide in another northeastern nursing home said she was now often responsible for about 30 people each night shift, and it therefore sometimes took her an hour to respond to residents’ requests for bathroom assistance. Some residents also said they noticed fewer staff. “Jan,” a resident in a nursing home, who requires assistance getting dressed and out of bed, said in October: “There have been issues because we just don’t have the staff…. I used to be up by 10 or 10:30, but recently I am not usually up until 11:30 a.m.”

Even in facilities where staffing levels were relatively stable, staff said the absence of family visitors led to increased workloads. One nurse aide in the southeastern US said:

[Before the pandemic] some families [came] every day, some twice a day. It impacts our job…. Let’s say you have three or four patients who you need to feed. When one of those patients has a daughter who comes to feed her every day you get more time to feed others. It takes time because with some [people] you have to encourage them, talk to them, tell them a story.

The medical director of two nursing facilities in the southern US said that his facilities had not experienced major shortages, but staff were still stretched thin: “The idea of [family] visitation being some luxury is woefully mistaken. Family members provide an awful lot of care…. When there are no visitors, there is more work for everybody else.”

The administrator of a small not-for-profit nursing home in a western state said her facility avoided staffing shortages by providing hazard pay, benefits, and a base pay above the state’s minimum wage as incentives for staff. She said US federal Coronavirus Aid, Relief, and Economic Security Act (CARES Act) payments helped to cover additional staffing expenses.

Others were not as successful: the administrator of a nursing home in the northeast said the facility had more than 10 positions open after several people retired or quit during the pandemic. “That’s a significant number,” he said. “We’re usually fully staffed. I think the pandemic… took a mental and physical toll on a lot of people.”

In response to an inquiry from Human Rights Watch, CMS said in a February 2021 letter that the issue of chronic understaffing in nursing homes was “paramount,” and that it had waived training requirements for certified nurse aides in March 2020 in an effort to ensure stable staffing levels during the pandemic. Similarly, in response to inquiries from Human Rights Watch, the American Health Care Association/National Center for Assisted Living (AHCA/NCAL) and LeadingAge, the two trade groups, expressed concerns about staffing.

 

Concerns About Neglect

Nursing homes recorded a high number of non-Covid-19 deaths during the pandemic. Academic researchers and the Associated Press estimated that there were at least 40,000 excess deaths not from Covid-19 between March and November alone.

A nurse practitioner who works in several nursing homes said: “I’ve lost a lot of my patients to Covid-19, but I’ve lost a lot of other patients from other conditions that I didn’t expect that they would have declined so rapidly from. I don’t know what the data is going to show, but we’ve lost a lot of people [from non-Covid-19 causes].”

Human Rights Watch spoke with six ombudsperson offices, which reported that complaints had increased significantly, including regarding neglect. Pennsylvania’s ombudsperson reported an 80 percent increase in cases between the 2020 and 2019 fiscal years. The Michigan ombudsperson reported twice as many calls, many related to quality of care, depression, anxiety, weight loss, psychotropic medications, and requests for ombudsperson intervention. One ombudsperson’s office stated, “We’ve seen neglect because relatives can’t provide support.” Another shared information about cases involving weight loss and falls, including due to the absence of staff available to help a resident use the bathroom.

An independent assessment of the impact of Covid-19 in Connecticut nursing homes that was released in September found that depression, unplanned weight loss, and severe pressure ulcers were more frequent during the pandemic. The National Consumer Voice for Quality Long Term Care, a leading advocacy group, reported that relatives had seen physical and emotional decline, poor hygiene, and significant weight loss.

Residents, family members, and nursing home staff shared concerns about significant weight loss, dehydration, untreated bedsores, inadequate hygiene, and worrying changes in prescribing of psychotropic medications. In the most extreme cases, doctors treating nursing home patients, as well as death certificates seen by Human Rights Watch, suggest that these conditions may have contributed to deaths.

Interviewees also described physical, mental, and emotional decline among residents. Due to visitor restrictions, family members faced serious difficulty monitoring their loved ones’ conditions and advocating for them. Many respondents to Human Rights Watch’s online survey also said they had observed signs of possible neglect, including bedsores and the deterioration of a loved one’s hygiene and physical appearance.

In its response to Human Rights Watch, CMS said, “restrictions on visitation as well as limited survey activities has led to some concerns of increased instances of neglect or decline amongst nursing home residents,” and that the agency was taking action to increase inspections, as described below.

Weight Loss, Dehydration, Bedsores

Before the pandemic, “Alice” visited her mother “Hannah,” who was in her 80s, daily in the nursing home where she lived, helping her eat and open the lids on her meals. After Alice was no longer able to visit, she noticed on video calls that her mother gradually stopped smiling and laughing.

In the late summer, Hannah was admitted to the hospital with low blood sodium levels. Alice said the hospital doctor told her that Hannah was either severely dehydrated or had not eaten any protein for a long time. Hannah died a few weeks later. Alice said: “I don’t know if she just gave up and stopped eating or whether they weren’t helping her [to eat]…. We weren’t in there to watch what and how she was eating or drinking.”

“Anne,” who had dementia and lived in a nursing facility, went from 106 pounds to 82 pounds over the course of eleven months according to her daughter, Clara. “We started calling them every day and asking how much of her meal she ate,” said her daughter, “Clara.” “Most meals it’s: ‘25 percent.’ They said she spits out her food or refuses it.”

Clara lobbied to visit so that she could support Anne to eat, but said she was not allowed to. In December, Clara recalls she was notified that her mother had not eaten for three days. Anne was discharged to home hospice care and died several days later.

“Nina,” whose mother “Sally” is in her 70s, has dementia, and lived in a nursing home until October, received regular phone updates from staff, who told her over many months of a gradual 20-pound drop in her mother’s weight after the start of the pandemic. But when Nina attempted to obtain medical records from the facility so as to lobby for permission to visit, she says she hit a wall. “I started [by asking] my [nursing home] social worker [for documentation]. Then I went to the [director of nursing] and nurse practitioner and they just said, ‘No.’”

Nina decided to enlist the help of long-term care ombudspersons, who she said were similarly unsuccessful: “They asked and asked and asked. Finally [the facility] sent her medical notes, but only one week’s worth.” Nina insisted that Sally be discharged to a hospital, where she says doctors said she was malnourished and had bedsores on her buttocks and toes.

Bedsores, or pressure ulcers, are painful and when not properly treated, can lead to serious infection or even sepsis, a body’s overactive response to infection that can lead to organ failure and death.

“Robert” lived in a nursing home after having a stroke in his 60s. While Robert could not always communicate easily, his daughter “Jill” said during one telephone call in July, he began to cry out in pain: “He was screaming, ‘My heel, my heel, my heel!’ Three days later they told us he had a surface bedsore on his heel.”

His daughter said that when Robert was hospitalized in August after what staff worried was a stroke, Robert had four bedsores, including on his heel, ankle, lower back, and his buttocks, the last of which was infected with antibiotic-resistant bacteria (MRSA). During a second hospitalization in September, Jill said doctors indicated Robert had a total of nine bedsores on his body, including the four found earlier. Human Rights Watch reviewed September hospital medical records that confirm the first four bedsores and MRSA infection, and photos of the additional five bedsores that corroborate Jill’s information.

Several family members of residents in other nursing homes expressed concerns that other types of wounds may also not have been fully or appropriately treated.

Hygiene

Many family members expressed concerns about shortcomings in supporting residents with regular hygiene.

One woman said that nursing home staff did not promptly manage her 89-year-old mother’s hygiene: “My mom said she was left in a wheelchair in a diaper for hours and her bottom hurt so bad she wasn’t able to sleep. I had to write into her care plan that they couldn’t leave her sitting for more than two hours without checking if she needed a change.”

In some cases, family members said they noticed that their loved ones were rarely dressed or out of bed during video calls. One relative said that the facility lost all her father’s clothes and shoes, did not inform the family, and instead had him wear a hospital gown for over a week: “[A worker told us], ‘He has nothing in his closet.’ He had no shirt, no shoes, no pants... Stuff goes missing all the time but there’s never a point where everything is gone and stays gone,” she said.

Many family members said their relatives’ hair appeared unwashed and their fingernails and toenails were long and dirty.

“Susan,” whose 86-year-old mother “Emily” has dementia and lives in a nursing home in the midwestern US, said she often supplemented staff care before the pandemic by cleaning her mother’s dentures and hearing aids and washing her face, which would otherwise develop a filmy residue. Susan said she noticed changes in her mother’s appearance during online calls and later during outdoor visits, but could not fully understand her mother’s condition because she was wearing full PPE.

When Emily was hospitalized in October, Susan found her face caked in more yellow residue than she had ever seen before. She feared the facility had not washed her face for an extended period. Human Rights Watch reviewed photos of Emily’s unwashed face.

 “Joan,” whose husband “Michael” lives in a residential facility in the southwest and has dementia, said she had serious concerns about her husband’s hygiene when she saw him for the first time in September after six months apart:

He did not have any toothpaste. The toothbrushes were worn out and tinged a brown color. He didn’t have what he needed to brush his teeth with. It’s very possible that they asked him once a week if he needed anything, and he said no. But [because he has dementia] you need to take [the questions] further than that.

 

The Impact of Isolation

Research outside of the US, including in the Netherlands and in France, has found an association during the Covid-19 pandemic between isolation and negative impacts on older adults’ mental health. Studies have shown that isolation and loneliness more broadly are linked to negative physical and mental health outcomes in older adults, including premature death.

One ombudsperson told Human Rights Watch that through video calls, “I definitely noticed decline, people were not as happy, and not as understanding, very frustrated. I did see weight loss. I did see people [in distress].” Another reported, “We have so many family members who say, ‘I was able to talk with my mom a few times a week, now she just isn’t interested, says, ‘Why bother?’ She’s depressed.’”

Relatives and staff told Human Rights Watch that they saw increases in depression, anxiety, and other mental health concerns among nursing home residents during the pandemic as well as physical and cognitive decline. Many respondents to Human Rights Watch’s online survey reported similar concerns.

A doctor shared his experience treating older people in nursing homes during the pandemic: “I’ve had patients die of loneliness, basically. People often become withdrawn, they don’t want to eat or drink… they become depressed and don’t respond to treatment of depression, and just sort of give up.”

The social services director of a nursing home in the south said residents were experiencing mental health distress in much greater numbers than before the pandemic: 

[Residents] are acting out. … They’re calling their families while they’re hallucinating. There were patients who may have been psychologically delicate, but they never hallucinated, and now they are. We’ve gone from being a vibrant and living community back to the psych wards where people lay until they die.

One resident who is over 100 years old and has mild dementia, described how she missed seeing family in person and was saddened by video calls:

I like personal meetings. [During video calls] the part where everybody disappears is so sad, it’s like you were talking to someone and they died…. All of a sudden, they disappear, and you wonder, where did they go?

“Blanche,” whose 94-year-old mother, “Kathy,” lived in a nursing facility in the southwest, described how Kathy struggled with isolation and was increasingly dejected in the months leading up to her death in the fall. “She felt abandoned,” said Blanche. “She would say, ‘I’m just an old piece of junk. Nobody comes to see me.’”

“Shirley” said her husband, “Joe,” who was in his 80s, had post-polio syndrome and lived in a nursing home in the west, was an active participant in the facility’s happy hours and taco nights before the pandemic. During the pandemic, Joe became depressed:

I’ll ask how his afternoon went, and… mostly he says he makes himself sleep to pass the time. I’ve heard him say frequently, in a really sad voice, ‘This is no way to live.’ He will cry during video calls … He was never like that [before].

Shirley said she asked the facility over the summer to allow Joe to see a therapist, but staff said they only allowed “psychiatric support,” which she understood to mean medication. Shirley said she was allowed to see Joe four times for 15 minutes each between March and November, when he died.

Increased isolation and the lack of stimulation and physical activity during this time appeared to have an impact on some residents’ physical and cognitive abilities, in addition to their mental health. Staff said that being confined and isolated to their rooms meant less physical activity for nursing home residents. “Even going to a group activity or meal is going to involve some exercise,” said a doctor who works in nursing homes, whereas in the absence of such activities, “There’s been even more loss of physical function.”

Relatives described many ways in which their loved ones lost physical function, including losing the ability to sit up in a chair, stand up, use their walker or wheelchair independently, or grasp objects in their hand.

“Luisa,” whose 93-year-old grandmother has dementia, uses a wheelchair, and lives in a nursing facility in the southwest, said: “Even [in April] she was wheeling herself around, but now she needs help to get into bed or into the wheelchair. She’s in bed all day.”

Family members, particularly those whose loved ones had dementia, described declines in their memory, ability to speak, or ability to participate in activities such as phone calls. “Beatrice,” whose mother has dementia and lives in a nursing facility in the northeast, said that her memory declined during the lockdown:

Before lockdown she knew me, knew my name. She could list all her children and ask relevant questions about them. She can’t do any of that now. She doesn’t know any of us.

Increased isolation during the pandemic was a direct result of restrictions on visitation by family members and limits on group activities within nursing homes. While some limits on visitation were reasonable and necessary public health measures to contain the virus's spread, the blanket ban on visitation by CMS in March 2020 was overly broad, as it was not tailored to specific contexts and needs and left no space for alternative approaches.

Even when restrictions were eased somewhat in September, relatives, residents, and staff said that in many cases nursing homes continued imposing restrictions that may have been unnecessary, contributing to residents’ isolation. Given the apparent harm from prolonged isolation during the pandemic, CMS and other authorities should review their approach to visitation policies and their enforcement, to assess whether they could have better mitigated the harm of isolation while also providing necessary protection from infection.

Some facility administrators took steps to mitigate potential harms of isolation. The administrator of a nursing facility in the west said that the staff psychologist saw five residents regularly before the pandemic, but now saw 15 or 20. A nursing home administrator in the northeast said that in response to increased depression and weight loss during the pandemic, the facility had varied its meal choices: “You have to be creative in a very limited environment,” he said.

 

Use of Psychotropic and Other Medications

Prior to the Covid-19 pandemic, long-term care reform advocates, US government agencies, and others documented serious concerns about the misuse of psychotropic drugs, which include anti-depressants, anti-anxiety medications, antipsychotics, and sedatives, to control the behavior of older people in nursing homes, a practice known as chemical restraint. Psychotropic medications can pose serious health risks, including increased risk of death, for older people.

A 2018 Human Rights Watch report, based on research in six US states, documented pervasive chemical restraint. Facilities administer these drugs in many cases without obtaining informed consent from residents or their families. A July 2020 report by the US House of Representatives Committee on Ways and Means found that approximately 20 percent of all skilled nursing facility residents– about 298,650 people every week– received some form of antipsychotic medication in the last three months of 2019.

The scope of psychotropic drug use in nursing homes during the Covid-19 pandemic is unclear, including because the relaxation of data reporting requirements on medication use and the absence of monitoring and visitors in facilities eliminated key sources of information on this issue.

Ombudspersons and some family members shared concerns with Human Rights Watch about initiation of or increases in psychotropic medication for residents, and changes in behavior that could be linked to those medications. Side effects included confusion, unresponsiveness, lethargy, and excessive sleeping, which can contribute to weight loss and other issues among older people.

Similarly, more than 200 respondents to Human Rights Watch’s online survey reported that staff had initiated or increased psychotropic medications during this time, with many reporting negative side effects. While the perspectives of people interviewed and surveyed for this report do not prove that these drugs were being used inappropriately, they raise concerns about prescribing practices during a time of reduced transparency, inadequate staffing, and lessened oversight.

One certified nurse aide said half of the 10 to 12 residents she typically cares for had been started on psychotropic drugs since the pandemic began. She said: “[Since the pandemic] a lot of them get medicated because they’ve started talking suicidally… They just want to be out and about doing their thing, but most of the time the doctor will go in... and their best bet will be up to the medicine."

In July, “Dana,” whose father “Thomas” lived in a nursing facility in the northeast, noticed he could barely stay awake during video calls:

I asked whether there was something making him groggy. They said it was [an anti-depressant], and that he’d been on it for two weeks…. I had had no idea he was on [it], and there is no way I would have authorized it.

Dana said the facility suggested that in lieu of the anti-depressant, they prescribe an anti-anxiety medication that they would administer only “as needed.” Dana agreed. However, she says doctors later told her that the facility had prescribed the drug not “as needed,” but twice daily.

Between March and August, Dana said, Thomas lost 25 pounds, which Dana worried was connected to him not being awake during meals. Among the most common side effects for anti-depressant he was on are fatigue, drowsiness, and weight loss. Those for anti-anxiety medication are sedation and unsteadiness.

In April, Blanche, whose mother Kathy lived in a nursing facility in the southwest, received a call from a nurse who said her mother was unresponsive, her eyes glassed over, and that she had not eaten in three days. It was only then that Blanche learned that the facility had prescribed her mother an anti-depressant. Kathy died in October. Blanche does not know the exact cause of her mother’s death, but expressed concerns that the medication may have contributed to the deterioration in her health.

“Victoria,” whose mother had dementia and lived in a nursing facility in the northeast, had obsessive compulsive behaviors and thoughts before the pandemic, though Victoria was usually able to support her to calm down. When the pandemic began, Victoria’s mother began hallucinating and shouting more frequently. The facility recommended prescribing an antipsychotic.

Victoria said staff did not inform her of the potential side-effects of the medication. Her mother began sleeping excessively and developed edema—a swelling in the limbs that can be caused by lack of movement:

When I was with her and she had meltdowns, I could talk her through it, re-direct her. I had a lot of techniques. They [staff] were trained in those techniques too, but I don’t think they had the time or the staff to use them.

CMS told Human Rights Watch that facilities are expected to ensure residents’ right to be free from restraint and to use individualized non-pharmacological approaches with residents. The American Health Care Association, one of the groups representing nursing homes, stated: “according to the medical literature, there are still situations where these medications may be necessary and beneficial to certain patients. But we believe in increasing education about the proper use of antipsychotics.”

 

Limited Transparency

Restrictions on visits by long-term care advocates and family members, as well as limited inspections by surveyors and reduced data reporting requirements, contributed to a lack of transparency into nursing facilities’ operations during the pandemic.

CMS contracts with state agencies to monitor facilities for deficiencies in quality of care, quality of life, safety standards, and other categories and to respond to more immediate complaints. On March 4, 2020, CMS announced that it was stopping all routine surveys and would only send surveyors into facilities to monitor compliance with infectious disease protocols, in response to specific complaints, and in “Immediate Jeopardy” situations involving risks of serious injury, harm, or death. In August, CMS reauthorized the routine surveys “as soon as [surveyors] have the resources (e.g., staff and/or PPE) to do so.” Comprehensive surveys should examine staffing levels, as well as issues such as the prevalence of pressure ulcers, weight loss, depression, etc.

Advocates including Consumer Voice expressed concerns with the CMS steps taken in August, including that under the revised guidance, many issues could still go unresolved if classified as minor, or “non-immediate jeopardy low.” The California Advocates for Nursing Home Reform reported that routine surveys had not been consistently reinitiated in that state, with surveyors remaining focused on infection control even almost one year into the pandemic.

In addition to fewer standard inspections, nursing homes’ operations also became less transparent as a result of restrictions on visitations by family members and long-term ombudspersons. Between March and September, visits by families were barred for all situations except end-of-life, and ombudsperson visits were banned outright. In September, CMS reauthorized ombudspersons’ entry into facilities.

Despite this, ombudspersons said that they were significantly limited in their ability to visit facilities even after September, for reasons including limited access to PPE and testing. “We generate many cases while conducting routine visits in nursing homes and without being able to do those in-person visits since March, we had to rely on residents, families, or staff members to reach out to us,” one said. She said their cases had dropped by 33 percent as a result. Another reported, “We have put some really good virtual communication systems in place… It’s good, but nowhere near where it needs to be in terms of accessing information during the pandemic.”

CMS also waived a series of data reporting requirements during the pandemic. From March to May, CMS suspended all requirements for facilities to submit staffing data. Following pressure from advocacy organizations, as of June, CMS required facilities to submit data from April onward. The House Committee on Ways and Means has raised concerns with CMS that Covid-19 and staffing data reported during the pandemic is incomplete and called for improvements to inform health officials’ policy decisions.

CMS also waived the timeframe within which facilities had to report information for the Minimum Data Set, a national database of comprehensive clinical assessments of nursing home residents, including on physical and mental health, indicators of neglect such as the presence of pressure ulcers, and medication use, including psychotropic medications. Advocates reported that this waiver meant that data was incomplete compared with previous years, making it impossible to analyze effectively. In May, CMS implemented new data reporting requirements specific to Covid-19, including rates of infection and deaths among residents and staff, availability and use of PPE, and testing.

 

US and International Law

The Nursing Home Reform Act of 1987 and associated regulations protect nursing home residents from neglect and abuse and guarantee the right to be treated with dignity and freedom from chemical restraint. Nursing home residents are also protected by the Americans with Disabilities Act (ADA), which bars discrimination against people with disabilities.

Under international human rights law, everyone has the right to the highest attainable standard of physical and mental health, including under the International Covenant on Economic, Social, and Cultural Rights and the Convention on the Rights of Persons with Disabilities. The Universal Declaration of Human Rights also protects the right to a standard of living adequate for health. Accordingly, governments are obligated to protect people from infringements of the right to health by others, including through effective regulation of nursing homes. Governments also have an obligation to provide effective judicial or other appropriate remedies for violations of human rights, including the right to health.

 

Recommendations

To the Centers for Medicare and Medicaid Services:

• Immediately ensure all standard facility quality and safety surveys are reinstated with robust enforcement and meaningful penalties; increase the number and frequency of surveys, specifically with the aim of monitoring resident well-being;
• Ensure accurate and usable data on nursing homes and resident well-being:
  • Reinstate preexisting timeframes for all data reporting requirements, including on staffing and the Minimum Data Set, which includes metrics on resident well-being and psychotropic drug use;
  • Implement stronger oversight to improve the reliability of all data collected; and
  • Ensure broad usability of data for the public;
• Strengthen enforcement of existing regulatory requirements to end inappropriate use of antipsychotic medication in nursing facilities;
• Reinstate staff training requirements that were waived during the Covid-19 pandemic;
• Establish stronger and specific minimum nurse staffing levels or ratios to provide residents care that is compliant with federal regulations;
• Support more stable staffing, by encouraging nursing homes to establish a living wage for workers, provide paid sick and family leave, and affordable healthcare;
• Reinstate civil money penalties for nursing homes for all deficiencies on a per-day basis as the default penalty, as a means to promote accountability;
• Ensure that nursing home residents and their family members or representatives have access to courts in the event of a dispute with the facility, by banning the use of pre-dispute binding arbitration agreements.

To the US Congress, including the House of Representatives Committee on Ways and Means:

• Consider investigating the scale and impact of neglect, psychotropic drug use, prolonged isolation, and the physical and mental health of nursing home residents during the pandemic, including by holding hearings;
• Consider legislation on creating a required federal minimum staffing ratio at all nursing facilities;
• Given longstanding issues of insufficient staffing and problems with recruitment and retention of staff in nursing homes, made worse by the pandemic, consider passing legislation that would establish a living wage, as well as paid sick and family leave and affordable healthcare, for nursing home workers.

To the US Department of Justice:

• Consider investigations into allegations of neglect and other harms to nursing home residents during the pandemic.

To the States:

• Repeal immunity laws or executive orders shielding nursing homes from liability during the pandemic;
• State Attorneys General, Health Departments, and other relevant agencies should open investigations into allegations of neglect and other harms during the Covid-19 pandemic, including any longer-term and systemic concerns that may have contributed to harms.

 

Survey Results

 

 

Question #10: Have there been Covid-19 infections at the nursing facility among residents or staff?

	Number of Respondents	Percentage of Respondents
Yes	502	85%
No	87	15%

 

Question #11: Did the facility impose restrictions on in-person visits during the pandemic?

	Number of Respondents	Percentage of Respondents
Yes	587	99.7%
No	2	.3%

 

Question #12: Describe other ways you were able to stay in touch with your loved one. Did staff facilitate video or phone calls, window or door visitations? (select as many as apply)

Yes/No	Number of Respondents	Percentage of Respondents
Door visitations (i.e. through a glass door)	100	11%
Window visitations (i.e. through a glass window)	384	41%
Facilitated video/phone calls	398	43%
Other	45	5%

 

Question #13: How did your loved one react to the video calls, window visits, or door visits? (i.e., Did they become confused, or did they understand why you weren’t visiting?)

Most frequently reported reactions of residents:

• Confused
• Depressed
• Frustrated
• Sad
• Suspicious
• Upset
• Unresponsive
• Understanding

Anecdotes

My mother has dementia and she doesn't understand why I can't come in. She is sad, depressed, and would cry when I leave. It is extremely sad to see her like that.

Confused as to why I couldn't come in. Window visits: They [nursing home staff] would not open the window anymore so she could hear me. Then when I called her on the phone and was trying to talk to her that way, it confused her even more, and she kept hanging up and then trying to talk through the closed window without us being able to hear each other. I asked the nurse if there was a speaker phone on her phone, and she said, “No.” We are very frustrated and devastated by her isolation, and it is killing her.

She cries when we leave the window and the nursing home told us not to visit with her anymore. It upset her.

She's almost deaf, so any form of virtual visitation is impossible. In the recent months, she has signs of dementia that she did not have before and acts depressed when we tell her we can't go in. She wants a hug and to hold our hand so badly. They're saying we will be able to do outdoor visits, observing social distancing, and she will not understand why. She's been bedridden for 5 years, so I don't see how outdoor visits will be possible, either.

Mom was confused why I no longer visited and became very sad. She was frustrated with visits where she was 6 feet away but couldn’t hug me, so she cried and couldn’t see my computer where I had to write everything because she couldn’t hear me or read my lips because of the mask. Virtual visits are difficult because she can’t hear me, so I have to set up a monitor behind me with my words which is difficult for her to see on an iPad.

 

Question #14: How many weeks/months did you go without meeting your loved one in-person?

	Number of Respondents	Percentage of Respondents
Less than 1 month	38	7%
2-3 months	113	20%
4-5 months	119	21%
6 months or more	306	53%

 

Question #15: Did you ask the nursing home about becoming a “compassionate caregiver” or “essential caregiver” for your loved one?

	Number of Respondents	Percentage of Respondents
Yes	254	55%
No	186	40%
I don’t know	24	5.%

 

Question #16 [If Yes to #15]: Did the nursing home grant you “compassionate caregiver” or “essential caregiver” status?

	Number of Respondents	Percentage of Respondents
Yes	70	28%
No	183	72%

 

Question #17: Did the nursing home explain why you were denied “compassionate caregiver” or “essential caregiver status?”

Most frequently reported reasons:

• Nursing home simply said no or ignored the question.
• Nursing home claimed they were following state guidelines and/or CMS guidelines.
• Nursing homes said they weren’t aware of the status.
• Nursing homes said they did not have enough staff to facilitate more visits.
• Nursing home staff said they were “waiting for corporate to answer”
• Nursing home staff said only end-of-life situations would warrant in-person visits.
• Nursing home staff said that a resident’s health wasn’t declining sufficiently to warrant a visit.

Anecdotes

[Nursing home staff] stated they were not allowing unless [my] loved one was “actively dying” as determined by nurse even though my mom is on hospice.

Not really. They said that becoming [a compassionate caregiver] is difficult.   They stated that these visits are very limited and usually apply in situations that involve a family member who previously assisted their loved one with care, showers, or assisted with eating. Well at the time [before visitor bans] my mother could do this. Her cognitive abilities have sharply declined, and she was moved to memory care four weeks ago.

They said, “No,” because they "already provide essential care"

Nursing home told me that my mother did not need compassionate care even though she had lost 20 pounds over lockdown. She went to a little [as] 94 pounds as a 5’8” woman. I even engaged my ombudsman and elder care attorney and still could not get compassionate care or visitation.

Director just said it was a lot of paperwork.

It's a corporate policy that they do not recognize such status.  At this time, Kentucky has not mandated [compassionate caregiver status] either.

 

Question #18: Have you been able to visit your loved one in-person since the pandemic began?

	Number of Respondents	Percentage of Respondents
Yes, inside	149	27%
Yes, outside	232	41%
No, not at all	121	22%
Other	58	10%

 

Question #19: When were you first able to see your loved one in-person?

Month	Number of Respondents	Percentage of Respondents
March	2	.6%
April	8	2%
May	22	6%
June	48	14%
July	65	19%
August	65	19%
September	62	18%
October	73	21%

 

Question #20: How often have you been able to visit them?

Frequency	Number of Respondents	Percentage of Respondents
Daily	48	14%
Weekly	180	52%
Monthly	34	10%
Other	83	24%

 

Question #21: How often were you able to visit them before the pandemic?

Frequency	Number of Respondents	Percentage of Respondents
Daily	296	80%
Weekly	53	14%
Monthly	13	4%
One, two, or a few times (a year)	6	2%

 

Question #22: What reason did the facility give you for not allowing you to visit?

Reason	Number of Respondents	Percentage of Respondents
State guidelines/regulations/law	131	68%
Covid-19 cases in the facility	27	14%
High rate of Covid-19 in the community	25	13%
Other	11	6%

 

Question #23: Has anything changed about your loved one’s cognitive, physical, or emotional state?

Most frequent responses:

• Cognitive: increased confusion, decline in cognitive abilities particularly in people with dementia, forgetting family members and important events/occasions. Some family members noted that their loved ones went from being able to communicate their needs to becoming unable to speak.
• Physical: decline in physical mobility, weight loss, new/more recurrent cases of pressure ulcers (bedsores), more frequent falls, loss of teeth, increased urinary tract infections (UTIs), incontinence, changes in condition of skin, nails, and teeth, decline in appetite.
• Emotional: depression, increased agitation and frustration, increased suicidal ideations, less interested in usual activities, increased anxiety, cries when family comes to visit, new medications prescribed for anxiety and depression, new diagnosis of different conditions, feel like prisoners. Some family members do not know the level of decline because they have not seen or heard from their loved one in a nursing home.

Anecdotes

Mother’s physical and mental state have both changed greatly. She has lost approximately 55 pounds since the pandemic began. Her isolation from other residents and family has affected her cognitive abilities as well as any joy she could find to want to continue living. She cries when we FaceTime [video call].

Dad knew every member of the immediate family and some friends, pre-pandemic. He was social, chatty, always trying to engage others in conversation. Now Dad doesn't remember his daughters, son or wife, sits with his arms crossed and doesn't really speak. On video calls he doesn't register the computer at all. He doesn't engage with us as we try to talk to him. He is unshaven, his hair unkept, and often with new bruises or tears on his skin. Sometimes he even appears without clothes, dressed only in a hospital gown.

She is no longer using the walker and depends on her wheelchair to get around. The staff does not have/take the time to get her up and walking. She now has bed sores on her feet from laying around. She seems to be more confused about where she is, days of the week, and forgets things that just happened, [such as]: Halloween parade inside the facility with staff. She didn't recall clapping, singing, or the parade itself. She cries every time I leave her window.

My mother has become alarmingly depressed. Her eyes are sunken, and she doesn’t respond the way she did before the March lockout. On my recent 1 to 2 hour visits, it takes a long time for her to start responding to me. She’s withdrawn and sad.

Extreme decline. Gone from fully mobile to [using a] wheelchair. Many falls with broken arm and shoulder. Several emergency room visits. Six days in the hospital. Three weeks in rehab. Broken shoulder, severely dehydrated, severe urinary tract infections, constipation, low blood pressure, low oxygen levels. Needs help with all ADLs [activities of daily living]. She can barely feed herself since she can’t use her broken arm/shoulder. Bed sores. Totally incontinent. Alzheimer’s has progressed a lot. Moved from independent living to assisted living July 1. Under palliative care since November 1.

She has declined dramatically and irreversibly. While she was mobility-impaired before and wheelchair dependent, she is now bed bound, has completely lost use of her legs, lost most use of her left hand and arm, and is no longer able to sit up straight--she falls to the right into a "c" shape and slumps forward. She was literally falling out of the wheelchair.… Cognitively she has declined terribly too. Prior to the isolation, she enjoyed talking, visiting with family, keeping up on everyone's lives, and playing games including a strong game of Scrabble. Now she is confused all the time and has zero short term memory. She requires prompting and re-prompting for everything. She rings the call bell (when it's within her reach), but by the time they come, she's forgotten what she wanted. And the staff won't stay but a second if she can't tell them what she wanted. …  By July/August, she had grown so weak and lethargic that we could barely arouse her by phone, and she was refusing outside visits because she was so uncomfortable in the wheelchair.

Lost 24 pounds so far. Due to lack of activity he went from mild Alzheimer’s to advanced in six months as defined by his cognitive memory testing, and he has lost the ability to walk and stand safely. In six months, he went from walking to walking with a cane to needing a walker. I’m watching him mentally and physically atrophying. He went from happy to frustrated to depressed.

Yes, she looks bad. She’s more confused. …She seems depressed, scared and very lonely.

 

Question #24: What has your loved one told you about their experience during lockdown?

Most frequent responses:

• Does not understand what going on or they think it is their fault.
• They feel lonely and say that it feels like being in prison.
• Sad or depressed that they cannot see their family members.
• Stopped doing their usual activities.
• Afraid of speaking out and afraid of having family members visit because the nursing home staff will be upset and will not provide care.
• They are not fed, bathed, etc.

Anecdotes

She was very sorry for whatever she did to be locked down in her room, she's been put in prison.

All they will let her do is stay in her room. She can't visit with other residents. Every time we talk, I ask, “What have you done [lately]?” And her reply is, “Nothing. There is nothing I can do.”

I believe that she is frightened for some reason. When I ask her why she doesn't call on the CNA [Certified Nursing Assistant]  to get something for her, to help her change channels on the TV, to get a glass of tea, for example, she said one time only, "Well, you learn just to keep your mouth shut.”

She feels like she is imprisoned. She would rather risk getting the virus than die all alone. She says the nurses are mean to her and say for her to shut up and sit still. She’s very upset and wants out.

She has no sense of time but hated not seeing her children. She became angry with us and accused us of abandoning her. She said she did not want to die alone without her family at her side.

She said they are seriously understaffed! Sometimes having to wait an hour to go to the bathroom and by then she has already soiled herself. Only getting a shower once every 5 days. Confined to her room, to sit in silence 24/7, because of her being legally blind, she can’t read, watch TV, do a puzzle or anything to entertain herself. Prior to the pandemic, she depended on family visits every day to fill her days.

 

Question #25: What did you usually help your loved one with before the pandemic? (Eating meals, showering, exercise, recreation, etc.) Can you do these things now?

Most frequent response categories:

• Emotional support
• Recreational activities including meals, social activities, exercise, walks, driving, etc.
• Assisted with medical visits
• Grooming and hygiene including trimming finger and toenails, giving haircuts, washing face or hands.
• Daily tasks of living including supporting the person to eat and bathe.
• Ensuring that personal items are replaced when lost, doing laundry, providing cellphones or other technology and ensuring that it works.

Most respondents listed that they cannot do these activities due to visitation bans.

Anecdotes

Keeping her fingernails and toenails clipped, her cyst drained, bringing her to my home for relaxation and seeing her dog, taking her to church, interacting with family when they visit, cleaning and organizing her room, making sure she gets bathed, cleaning her dentures, making sure her cell phone is charged, seasonally decorating her room door so she knows where to go, handwriting her schedule so she has something to go by. I have not done any of the above in 8-9 months.

Staying and eating with her, which was always something she loved.  Keeping her clothes in order and being able to monitor her clothing and personal care needs.  Decorating for holidays and seasons.  With her dementia she is always moving her things around and since I haven't been able to be in her room, things are in total disarray. I don't know if she has proper under garments or anything.

Weekly (sometimes twice weekly) collected her laundry, laundered and returned.  Weather and her moods permitting we would push her wheelchair outside and to the pond.  She would put her face up and soak in the sun/fresh air.  Before [she started using a] wheelchair, would take her on drives, loves clouds.  … [Now] they [the nursing facility] are understaffed, for the most part they take good care of her and the social director extremely engaged in trying to keep them interacting.

The bulk of the time was recreation/exercise and companionship. I also provided skin care, hair, and nail care. And I maintained her room and clothing. The only meaningful activity that they provide consists of one staff member visiting her in the afternoon (except on his days off). He drops off one of the word games that she likes and comes back a half hour later to review it with her for a few seconds. The staff is doing an adequate job with skin care, except her hands and nails are always filthy. When I first got access to her room, there were ants everywhere eating opened candy in her room. They've lost all of her clothes. She needs an entire new wardrobe.

 

Question #26: Have facility staff initiated or changed the dose of psychotropic medications (anti-depressants, anti-anxiety, anti-psychotics) that your loved one takes during the pandemic?

	Number of Respondents	Percentage of Respondents
Yes	211	37%
No	362	63%

 

Question #27: If so, what are they being treated for?

Condition	Number of Respondents	Percentage of Respondents
Depression	89	40%
Anxiety	69	31%
Dementia	25	11%
Sleep/Insomnia	14	6%
Mood/behavior	10	4%
Alzheimer’s	6	3%
Psychosis	5	2%
Parkinson’s	4	2%
Stroke	2	1%

 

Question #28: What was the change in medication and how did it affect them?

Most frequently cited change to medications:

• More medications
• Taken more often
• Dose doubled

Most frequently reported effects of change on residents:

• Less coherent
• Less communicative
• Increase in paranoia
• Subdued; less engaged
• Flat affect
• Drowsiness
• Groggy
• Angry more often
• Loss of balance

Among those who named a specific type or brand of medication that their loved one was given, they said:

Medication	Number of Respondents
Antidepressants (including Bupropion, Citalopram, Duloxetine, Escitalopram, Mirtazapine, Sertraline, Trazadone)	75
Antianxiety medications	28
Sedatives (including Alprazolam, Clonazepam, Lorazepam)	20
Antipsychotics (including Aripiprazole, Pimavanserin, Quetiapine, Risperidone)	15
Anticonvulsants (including Divalproex sodium and Gabapentin)	5

Anecdotes

Dose doubled, she hardly opens her eyes and sleeps most of the time

A combination of Depakote 3/day, a double dose (20mg/day) of Lexapro, a quadruple dose (100mg 2x/day) of Seroquel (antipsychotic) and Klonopin (a quadruple dose - .5 twice daily with 2 more if nurses deemed necessary). All this to make her quiet. The addition of Klonopin made her lose her voice. I complained and now they all avoid me.   They started her on so many meds that she couldn't cry out. They told me she was sleeping every time I tried to talk to her. When I finally pitched a fit and insisted, is when I learned mom was whispering, "help me". She'd lost her voice. The nurses had been telling me she was calm and quiet, when in reality, she COULD NOT physically call out.

Made her sleep, then in a zombie-like state. Unable to talk, just mumble and cry until the effects wear off.  Blessing is while they don’t remember happy times, I thank God Mom also forgets these terrifying times.

She was given a medication several times a day that often left her too sleepy to speak with me and other family over the phone.

 

Question #29: Was your loved one transferred to another facility at any point due to the pandemic?

	Number of Respondents	Percentage of Respondents
Yes	95	16%
No	490	84%

 

Question #30: Were you given any warning that they would be transferred?

The majority of respondents responded with a “yes,” although they were required to make the arrangements.

	Number of Respondents	Percentage of Respondents
Yes	49	47%
No	3	3%
Other	52	50%

“Other” includes responses such as: family member was given a call while the resident was in the ambulance or they initiated the transfer themselves or they were not given ample time.

 

Question #31: Have you or your loved one had concerns about their treatment in the facility since the start of the Covid-19 pandemic?

	Number of Respondents	Percentage of Respondents
Yes	411	71%
No	170	29%

 

Question #32: Did you or your loved one raise those concerns with anyone?

	Number of Respondents	Percentage of Respondents
Yes	374	91%
No	36	9%

 

Question #33: If yes, who did you complain to? Did their response resolve your concern?

Most frequently complained to:

• Social worker
• CEO of nursing home company
• Ombudsperson
• Nursing manager
• Activities director
• Nursing home manager/administrator/director

Most frequently reported responses:

• Respondents’ concerns were resolved
• Respondents’ concerns were ignored
• Respondents were told their concerns would be addressed at a later time

 

Question #34: If not, why not?

Reason	Number of Respondents	Percentage of Respondents
I couldn’t reach anyone to discuss this with	1	3%
I didn’t know who to go to	3	9%
I had concerns before and received no response	11	32%
Other	19	56%

 

Question #35: Did you consider taking your loved one out of the facility to live with you or elsewhere in the community during the Covid-19 pandemic?

	Number of Respondents	Percentage of Respondents
Yes	301	64%
No	173	36%

 

Question #36: [If Yes to Question #35] Were you successful in moving your loved one out of the facility to live with you or elsewhere in the community during the Covid-19 pandemic?

	Number of Respondents	Percentage
Yes	24	8%
No	274	92%

 

Question #37: [If No to Question #36] Why were you unable to move them out of the facility?

Most frequent reasons cited:

• Nursing home resident requires more support and care than the family member is able to personally provide or pay for in home support services.
• Moving the nursing home resident has a negative emotional impact on them.
• The family member’s home requires modifications to make it accessible or is not conducive to adequate socialization for the resident, receiving healthcare services, etc.
• In cases where the family member wanted to move the resident to another long-term care facility, the other facilities would not take the resident in.
• Insurance provider would not cover medical services outside of the facility.
• Another family member has power of attorney.
• Family member worried that nursing home resident will be at greater risk of Covid-19 at their home.

Anecdotes

I have to work and can't afford quit and to take care of her, it would be too difficult for me to care for her. Also, what would I do if I got sick with Covid-19, who would care for her then?

We would have liked to have brought our mother home, but her level of care just makes it impossible, as we don't have the funds for 24/7 care at home as we have to work ourselves. Unfortunately, we just don't have enough money.

My house is not wheelchair accessible in any way whatsoever (not even a shower downstairs) and I cannot quit my job to care for her full time. She needs around the clock assistance. I also have been unable to find a place locally that's allowing visitation like we need, so it feels pointless to move her [to another facility], especially because cost of living where I'm at is way higher than where she currently lives. We will blow through her savings so quickly.

 

Question #38: [If No to Question #35] Why would moving your loved one out of the facility not have been an option for you?

Most frequent reasons cited:

• The resident needs 24-hour care.
• The transition would be too difficult for the resident.
• Family member works and is not at home to take care of their loved one at home.
• The family member is not capable of providing the necessary medical care.
• Moving would cause too much disruption for the resident.
• The caregiver’s housing is inaccessible.
• Private care is too expensive.

 

Question #39: If there is anything else you would like to tell us about you or your loved one’s experience during Covid-19, please add it here:

Responses have been redacted.

 

 

Acknowledgements

This report was researched and written by Laura Mills, the older person’s rights researcher in the Disability Rights Division at Human Rights Watch. Subhajit Saha, associate in the Disability Rights Division, provided essential research assistance and participated in some interviews.

The report was edited by Jane Buchanan, acting director of the Disability Rights Division; Maria McFarland Sánchez-Moreno, senior legal advisor; and Babatunde Olugboji, deputy program director. The report was reviewed by Lena Simet, senior researcher and advocate in the Business and Human Rights Division; Joseph Amon, health and human rights consultant; Clara Long, associate director of the US Program; Amanda Klasing, interim co-director of the Women’s Rights Division; and Brian Root, senior quantitative analyst in the US Program. The report was also reviewed by Elise Keppler, associate general counsel (acting), and Neena Fuchs, deputy general counsel, in the office of the General Counsel.

Subhajit Saha, associate in the Disability Rights Division, provided production assistance and support. Layout and production were done by Rafael Jimenez, graphic designer; Travis Carr, publications coordinator; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager.

This report would not have been possible without the generosity, honesty, and courage of people living in nursing homes, their families, advocates, and nursing home staff. Thank you to Mikko Cook and Maitely Weissman of the Essential Caregivers Coalition, Mary Nichols of Caregivers for Compromise, and the many other family caregivers who spoke to us or assisted us with research for this report.

Thank you to all of the advocates and experts who greatly enriched the quality and depth of our research, including: Kelly Bagby, vice president at AARP Foundation Litigation; Tony Chicotel, senior attorney at California Advocates for Nursing Home Reform; Toby S. Edelman, senior policy attorney at the Centers for Medicare Advocacy; Richard Mollot, executive director of the Long-Term Care Community Coalition; Lori Smetanka and Robyn Grant, respectively executive director and director of public policy and advocacy at Consumer Voice; Julia Shenkar, LaDawna Howard, and Pedro Zayas at Service Employees International Union (SEIU). Thank you to the representatives of State Long-Term Care Ombudsmen including Mairead Painter (Connecticut), Patty Ducayet (Texas), Kimberly Shetler and Margaret Barajas (Pennsylvania), Salli Pung (Michigan), and Laurie Brewer (New Jersey).

Samuel Centre for Social Connectedness generously supported this work. Social connectedness is a guiding theme in Human Rights Watch’s work for older people’s human rights. We offer our deepest thanks to Kim Samuel for her unwavering belief in the power of social connectedness.