Pandemic & Response
By Richard Danford
In just over three months there have been over 50,000 deaths of residents and staff in nursing homes in this country. In the eyes of the general public this tragedy has come about as a direct result of the pandemic and its devastating effect on seniors. After all, these were the same places where we had entrusted the well-being of our beloved family members. For a citizenry trying to cope with this pandemic on numerous levels, thousands of deaths in long-term care facilities are unfortunately and conveniently being viewed by most as just more catastrophic results from an unprecedented crisis.
The truth is that many, if not most, of the fatalities in nursing homes from COVID-19 did not need to happen. The fundamental problems that have fueled this epic devastation have existed for decades. What should have been done to correct those problems has been recommended by the experts since the 1980’s, if not before. Actions taken in response to the virus have not only increased resident vulnerability to infection, they have caused great harm to all residents, their families, and the staff responsible for serving them.
We don’t need to retrace the entire history of nursing homes to know that thousands of deaths could have been prevented. In reality this pandemic in nursing homes has been like pouring gasoline on a smoldering fire, then having those in charge fan the flames and choose not to call the fire department until the devastation reaches epic proportions. And now the conversation is shifting towards how to build back the building, with the loudest voices being that of those who built the building and started the fire in the first place. As our country anticipates soon having a third of all citizens being over 65 and potentially in need of Long-Term Care, we have a compelling reason to understand what has happened and why.
Failure to enforce the law & efforts to weaken standards
Long before Covid-19, conditions in nursing homes had become seriously problematic, largely due to the lack of meaningful oversight. Ever since the passing of the Federal Nursing Home Reform Act in 1987, when the first real standards of care were established, there has been a problem putting those requirements into practice. Since that time consumers, family members, Ombudsmen, and advocates have been calling for the law to be upheld and for further reforms to be made. Those calls have gone largely unanswered. Where steps forward had been made, much more was needed that didn’t come.
Where the 1987 Act did establish a number of important regulations, enforcement of those regulations was left primarily to state survey agencies to monitor facilities and issue penalties for substandard care. The Federal Government retained final control through leverage via funding for the Medicare and Medicaid programs. Yet, for years far too little was being done to uphold the necessary standards or accurately monitor what was happening in nursing homes. That was until Medicare expenditures for Skilled Nursing Care exploded from $12 Billion in the year 2000 to $28 Billion in 2011.
In response to the huge cost increases, in 2014, The Department of Health and Human Services, Office of Inspector General issued the results of a comprehensive study; “Adverse Events in Skilled Nursing Facilities: National Incidence Among Medicare Beneficiaries.” Some of the findings from that lengthy study included:
22 percent of Medicare beneficiaries experienced adverse events during their nursing home stays. An “adverse event” indicates harm to the patient as a result of medical care, including the failure to provide needed care. Adverse events include medical errors and general substandard care that results in resident harm, such as infections caused by the use of contaminated equipment.
11 percent of Medicare beneficiaries experienced temporary harm events during their SNF stays.
59 percent of these adverse events and temporary harm events were clearly or likely preventable.
Despite the findings sited from the Inspector General’s report, failure on the part of State Surveyors to adequately enforce standards continued. As reported by the Center for Medicare Rights Advocacy, “Historically, infection control deficiencies are cited at nearly two out of three nursing facilities in the country, making infection prevention and control the most frequently-cited problem in nursing homes nationwide. However, less than one percent of the deficiencies are classified as actual harm or immediate jeopardy (that would expose them to being fined); more than 99% are called no harm.” Even when deficiencies were being identified before the pandemic, the enforcement tiger had no teeth and thousands of residents continued to be put a risk.
Ignoring the clear evidence that avoidable unsafe conditions in Nursing Homes were wide spread, jeopardizing resident safety and costing billions of tax payer dollars, the Whitehouse:
Reduced fines for harmful violations by facilities by 30%.
Proposed rule changes that would further weaken resident protections and eliminate the requirement that facilities have an infection control specialist on staff.
Estimates from the Centers for Medicare and Medicaid Services (CMS) projected savings to the Nursing Home industry from the proposed regulatory changes of around $640 million a year.
These actions clearly exposed this Administrations’ priorities when it comes to nursing homes. In an interview with the New York Times, the administrator at CMS, Seema Verma, denied that the proposed rule changes were about easing up on nursing homes. Instead she claimed they were; “about not micromanaging the process” and “we have to make sure that our regulations are not so burdensome that they hurt the industry,”
What happens next in terms of these kinds of changes will play a huge role in mapping the future. Will it matter, as reported in testimony before the Ways & Means Committee on June 25, that 91% of the nursing homes that have had COVID-19 were all found in violation of infection control laws, before the virus struck?
Failure to deal with inadequate staffing
The issue of inadequate staffing in long-term care facilities is well known, well documented and yet unresolved. In July 2000, Phase I of the Report to Congress on Appropriateness of Minimum Nurse Staffing Ratios in Nursing Homes was delivered and confirmed the gravity of this longstanding problem.
The report called out staffing deficiencies as a potential root cause of the many problems, including:
malnutrition,
dehydration,
pressure sores, and
abuse and neglect.
Phase II of the Report to Congress was delivered in December 2001, and took the issue one step further. The report to Congress found: “Strong and compelling” statistical evidence that nursing homes with a low ratio of nursing personnel to patients were more likely to provide substandard care.” (emphasis added) Consequently, a minimum threshold for adequate staffing standards was recommended. Furthermore, the researchers were able to determine that 52 percent of all nursing homes failed to meet all of those recommended standards and 97 percent failing to meet one or more.
After the compelling findings from researchers and years of debate there still is no federal regulation that establishes a minimum staffing level in nursing homes. The current law (CFR 42 § 483.35) reads:
“The facility must have sufficient nursing staff with the appropriate competencies and skills sets to provide nursing and related services to assure resident safety and attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident,”
Under this language there are serious problems with enforcement because there is no definition as to what constitutes “sufficient” staffing. Consequently, as stated in the Center for Medicare Advocacy report in 2014; Deficiencies for “Sufficient” Staffing; “Insufficient nurse staffing is rarely cited and even when the deficiency is cited at the highest level of harm to residents – immediate jeopardy – nursing facilities may not be sanctioned in any way. The federal enforcement system cannot be effective in improving care for residents if it is not used.”
As any Long-Term Care Ombudsman can tell you, it’s not uncommon to see as few as 2 Certified Nursing Assistants (CNA’s) trying to work a unit of 35 medically needy seniors and disabled residents. Yet there is nothing that can be done about it because there are no minimum requirements. Even under such obvious and extreme circumstances there is no violation of a regulation to report unless a resident is measurably harmed, a formal complaint is made about it, and an outside investigator substantiates that the particular harm was a result of inadequate staffing.
Further exacerbating the problem is the fact that the majority of hands-on personnel are so poorly compensated. According to national reports on salary averages, CNAs are compensated a mere $13 dollars an hour with little or no paid sick leave and few benefits. Needless to say, this makes it very hard to recruit skilled workers. Furthermore, these workers are often forced to work in multiple facilities just to make ends meet, thus substantially increasing the risk of transferring infections from one place to another.
Because staffing is such a big-ticket item for facilities owners have fought tooth and nail to prevent there ever being any minimum requirements. The primary side of their argument has been that staffing levels are most appropriately determined by the level of medical need of the residents, not just by how many residents you have at a given time. The other side of their story, the one they don’t want to talk about, is that a minimum staffing requirement would seriously interfere with the facilities ability to manipulate staffing levels based on the financial needs of investors, instead of the medical needs of the residents.
In 2015, the Kaiser Family Foundation published Nursing Facilities, Staffing, Residents, and Facility Deficiencies, 2009 Through 2014. They found that; “About 70% of U.S. nursing homes are for-profit facilities with an orientation to maximizing profits for owners and shareholders. The profit incentive has been shown to be directly related to low staffing. For-profit nursing homes and for-profit chains operate with lower staffing and more quality deficiencies (violations) compared with nonprofit facilities. Facilities with the highest profit margins have been found to have the poorest quality.” (Emphasis added)
To date, the arguments put forth by facility & stock holder lobbyists have clearly won out over the researched testimony of the medical experts.
Involuntary Transfers, Discharges and Planning
The Long-Term Care (LTC) Ombudsman program, authorized under Title VII of the Older Americans Act, works to resolve problems related to the health, safety, welfare, and rights of individuals who live in Long-Term Care facilities, including nursing homes. Among other duties, the Ombudsman is charged with identifying, investigating, and resolving complaints made by or on behalf of facility residents. Where State Surveyors generally visit facilities once a year, Ombudsmen are required to provide regular visits, usually every week, to observe conditions and meet with residents as their advocate.
Each year, Ombudsman programs across the country receive and respond to thousands of complaints from residents and their family members on a wide variety of issues. Consistently for the past several years the number one category of complaint has been unlawful transfers, discharges, or inadequate discharge planning. According to the Administration on Community Living, Ombudsman programs worked to resolve over 14,000 such complaints in fiscal year 2017 alone.
Out of concern for the volume of these cases, in December of 2017, CMS issued a memo to State Survey Agency Directors (Ref: S&C 18-08-NH) which stated:
Discharges which violate federal regulations are of great concern because in some cases they can be unsafe and/or traumatic for residents and their families. These discharges may result in residents being uprooted from familiar settings; termination of relationships with staff and other residents; and residents may even be relocated long distances away, resulting in fewer visits from family and friends and isolation of the resident. In some cases, residents have become homeless or remain in hospitals for months. Analysis of federal deficiencies indicate that some discharges are driven by payment concerns, such as when Medicare or private pay residents shift to Medicaid as the payment source.
(Medicare and private insurance pay substantially more per day than does Medicaid)
As we will discuss later, circumstances around unlawful discharges set the stage for this problem to cause great harm to residents and their families during the pandemic.
The Pandemic Hits
On February 29, the first two deaths from coronavirus in the U.S. were reported at the Life Care Center nursing home in Kirkland, Washington. As later covered on CNN, “first responders dispatched to the scene found an understaffed facility with inadequate gear attempting to serve dozens of patients vulnerable to catching the virus.” (emphasis added) Since then, more than 40 more deaths from COVID-19 have occurred at the nursing home.
The Federal Response
On March 13, 2020, CMS issued instructions to State Survey Agency Directors regarding COVID-19 in nursing homes, suspending numerous regulations.(Ref: QSO-20-14-NH) As a result of implementing the CMS instructions most if not all residents had the following rights taken away: (See 42 CFR §483.10(f)(4), and Appendix PP of the State Operations Manual).
To privately visit, communicate and associate with family and/or persons of one’s choosing.
To be free from involuntary seclusion.
To have regular visits from a Long-Term Care Ombudsman.
Freedom to participate in organizations and activities of choice.
Freedom to socialize and participate in facility activities and events.
In addition to waiving regulations regarding resident rights, the CMS March 13, memo:
Made recommendations for nursing homes to admit individuals with COVID-19 individuals from hospitals, thus denying residents the right to a safe environment.
Directed state and federal surveyors not to cite nursing homes for failing to have supplies of PPE, respirators and surgical masks.
Suspended the requirement that facilities report their staffing levels through the verifiable payroll system.
As a direct result of the directives issued by the Trump administration, even the most fundamental resident rights principles were essentially taken away. Those principles included the denial of:
The right to a dignified existence,
The right to self-determination,
The right to resident centered care,
The right to be fully informed,
The right to privacy.
Regardless of this pandemic, denial of these fundamental rights has to have taken a substantial toll on all nursing home residents. The guiding principle of nursing home regulations has always been that no resident should decline in health or well-being as a result of the way a nursing facility provides care. Suspending these critical protections assured that this goal was going to be extremely difficult to attain for residents in over 15,000 nursing homes, infections or no.
Long-Term Care Ombudsman Banned
In addition to removing important resident rights, the March 13 memo from CMS also removed access to facilities by the one entity specifically authorized to investigate quality of care complaints and rights violations. Despite having unfettered access to facilities by law prior to COVID-19, the Long-Term Care Ombudsman was redefined by the Trump administration as “Non-essential personnel,” and banned from entering any long-term care facility. Residents were on their own. The only set of eyes and ears who could monitor and report what was happening inside the nursing homes couldn’t get in the building. No longer was there any “canary in the coal mine” in case anything bad happened.
Transfer/Discharge Rights Suspended
April 14, 2020 – CMS issues another memo to State Survey Agency Directors (Ref: QSO-20-25-NH) regarding (COVID-19) Long-Term Care Facility Transfer Scenarios. (See 42 CFR 483.10(c) (3-9). This memo waived even more resident protections, including the right to:
Be informed in advance of the risks and benefits of proposed care and to choose the alternative or option he or she prefers.
To receive thirty-day prior notice of transfer or discharge.
To safe transfer or discharge through sufficient preparation by the nursing home.
To advance plans of a change in rooms or roommates.
The waiver of these rights was done in an attempt to allow facilities to more quickly move residents around in order to “cohort” COVID-19 residents in other facilities, even those locations not traditionally utilized as nursing homes. Unfortunately, these changes were short sited in that they also opened the door for exacerbating the problem of residents being manipulated for profit.
By waiving the requirement that notice be provided to people before being transferred, it provided cover for facilities discharging or transferring residents without following the law. This change eliminated any opportunity for many residents to appeal and potentially stop the action. And, it is basically through the appeals process that anyone outside the nursing home would ever question the action or even notice it had occurred. Making matters even worse is that the Ombudsman Program, the entity responsible for monitoring discharges and transfers, has been locked out of the nursing home by the March 13, changes.
Harm to residents doesn’t stop with the lack of prior notice. Too often residents who are unlawfully discharged end up in unacceptable locations. One example was recently quoted in the New York Times on June 21, where the New York City Department of Homeless Services reported that nursing homes had tried to discharge at least 27 residents to homeless shelters from February through May. How often this is happening and/or where people are ending up is impossible to know because there is no tracking system or data reporting requirements that would capture the information.
lack of Accurate Data and Information
Since the time when nursing homes were locked down on March 13, nobody but those who work there has known what’s really been happening inside. Family members and Long-Term Care Ombudsmen had been locked out. Information coming from facilities wanting to protect their reputations was often wildly inaccurate and downplayed. If you asked how many people had died, been infected or was even still at their nursing home, nobody could give a reliable answer. Meanwhile, news reports have been filled with stories of temporary morgues being set up and even U-Haul trucks being filled with bodies. The situation was starting to read like a science fiction script.
Finally, on May 16, after around 26,000 deaths had occurred in nursing homes, CMS finally issued requirements that facilities begin to report critical information regard COVID-19. (Ref: QSO-20-29-NH) They required that facilities must:
Inform residents, their representatives, and families of those residing in facilities by 5 p.m. the next calendar day following the occurrence of either a single confirmed infection of COVID-19, or three or more residents or staff with new-onset of respiratory symptoms occurring within 72 hours of each other.
Electronically report information about COVID-19 in a standardized format specified by the Secretary. This report must include a variety of information, including testing, infections and deaths of residents and staff, PPE supplies, ventilator capacity, staff shortages and other information.
One month later, the results of the CMS directive began being challenged by facilities, researchers and the media. On June 1, the federal governments’ first reported tally of results showed that 25,923 residents in nursing homes had been killed by COVID-19. Meanwhile, an analysis of reports from nursing homes by ABC News showed twelve thousand more deaths (37,600) from just 40 states and the District of Columbia. One facility, Isabella Center in Washington Heights, NY initially reported 13 deaths. In reality it was closer to 100. On June 11, AARP published; How to Track COVID-19 Cases and Deaths in Your State. In that article they stated:
“Most states are releasing some information on nursing home cases and deaths. But “it’s truly a patchwork of inconsistent data,” says Elaine Ryan, AARP vice president for state advocacy and strategy integration. And, “Some states are reporting the names of facilities with cases and deaths; others are releasing just the total number across all long-term care facilities. Certain states monitor all types of long-term care facilities, but others track only nursing homes. Some report daily; others, weekly. In short, the variations are huge.”
Other media outlets have reported problems ranging from percentages of facilities not reporting, lack of clarity about how reports are submitted, to staff entry errors and failure on the part of CMS to verify findings. CMS itself has stated cautions as to analyzing the data. In one of its data summary graphics, CMS states: “Due to how some facilities submitted data, and since this is a new program, some data limitations exist and we caution users to consider these limitations when analyzing the data.”
The sad truth is that after tens of thousands of deaths to residents and staff, we still don’t know for sure what has happened, who is still at risk, and what we need to do about it.
Personal Protective Equipment Unavailable and/or Unacceptable
Shortly after the pandemic began to overrun hospitals, pictures of front-line workers in N-95 masks and face shields were all over the news. For many the term PPE was introduced into our daily vocabulary for the first time. Governors began pleading for supplies as the safety of medical staff in hospitals became of paramount concern. Huge controversies emerged as the adequacy of the supply chain was called into question. For several weeks, the topic remained headline news. As problems began to subside somewhat in hospitals, even though problems still exist, the noise began to die down.
When it comes to adequate supplies of PPE in long-term care facilities, in the words of Harvard Health Policy Professor David Grabowski, during recent testimony to the Ways and Means Committee, “nursing homes got pushed to the back of the line.” Finally, on April 2, CMS and the Centers for Disease Control and Prevention (CDC) issued new recommendations to state and local governments to consider the needs of long-term care facilities with respect to supplies of PPE and COVID-19 tests. Yet it wasn’t until a month and thousands of deaths later that any steps were taken by the federal government to address the supply problem in nursing homes. Even then it wasn’t without serious problems.
On May 2, under direction of the White House Coronavirus Task Force, FEMA announced that they were coordinating two shipments, totaling a 14-day supply of PPE to around 15,000 nursing homes nation-wide. When the supplies began arriving, the staff at nursing homes were met with significant challenges. According to Kaiser Health News on June 13:
“But all too often the packages deliver disappointment — if they arrive at all. Some contain flimsy surgical masks or cloth face coverings that are explicitly not intended for medical use. Others are missing items or have far less than the full weeks’ worth of protective equipment the government promised to send. Instead of proper medical gowns, many packages hold large blue plastic ponchos.” And, “Despite President Donald Trump’s pledge April 30 to ‘deploy every resource and power that we have’ to protect older Americans, a fifth of the nation’s nursing homes — 3,213 out of more than 15,000 — reported during the last two weeks of May that they had less than a week’s supply of masks, gowns, gloves, eye protectors or hand sanitizer, according to federal records.”
This isn’t just fanning the flames. This is more like standing back, throwing cups of water at the fire, and watching the building burn.
Lack of Testing
In order to protect the residents and staff in any nursing home, it is crucial to identify the presence of COVID-19 so that steps can be taken to isolate the virus and contain its spread. In testimony before Congress, Harvard Health Policy Professor David Grabowski, claimed that by the time a resident or staff member develops symptoms of the virus it is too late. Therefore, he claims universal testing must begin immediately. However, the CMS, May 18, Recommendations on Nursing Home Reopening (Ref: QSO-20-30-NH) focuses primarily on symptoms assessments rather than on universal testing. Consequently, in the words of Dr. Grabowski, “without universal testing nursing home workers have no idea what they are facing when they come to work.” And, one could add that residents have no idea what the potentially life-threatening conditions are in the place where they live.
Planning for the Future
On May 14, CMS announced the planned creation of The President’s Coronavirus Commission on Safety and Quality in Nursing Homes. The announcement stated:
“The Commission will conduct a comprehensive assessment of the overall response to the COVID-19 pandemic in nursing homes and will inform immediate and future actions to address the virus in order to safeguard the health and quality of life for an especially vulnerable population of Americans. The Commission will consist of a diverse group of individuals, which may include industry experts, clinicians, resident/patient advocates, family members of individuals residing in nursing homes, medical ethicists, nursing home administrators, academics, infection control and prevention professionals, state and local authorities, and other stakeholders whose expertise can contribute to one or more of the areas on which the Commission will focus.”
It is beyond question that the three categories of people who have been most devastated by this pandemic, day in and day out, are 1) the residents, 2) their family members, and 3) the workers in the nursing homes. To get a sense of how the priorities of this Commission will be focused, it must be noted that at a glance, after their appointments, there are zero family members, one worker, and one resident on a panel of 25 people.
Final Thoughts
Much of the devastation in nursing homes during this pandemic was preventable. Also, the harm that has been caused goes well beyond the fatalities and infections. Just ask the family members of residents and those still living in these facilities. Before we’d heard the word COVID, the trouble in nursing homes, the lack of appropriate care, residents being harmed and placed at risk was well known. It has been well researched and well documented for decades. The fact that people in positions to do something about it have repeatedly chosen not to act, or have acted to make things worse, is inexcusable. In this day of needing to assign blame and politicize, let us acknowledge that there is enough blame to go around for people of all political persuasions for generations. Whatever happens next must take into consideration all of the issues with the history that has led up to this event.
We cannot, in any way, afford to understate or minimize the level of harm that has occurred. The fact that this has happened at all and the way it has been handled since the outset is undeniable confirmation of the fundamental neglect and misplaced priorities that has gone on for decades. The depth of the problems in long-term care facilities surely go way beyond those discussed here. We must demand a new set of priorities and a new model of serving those we love.
How Did This Happen?
Leading up to the Pandemic:
Infection control deficiencies were cited at over 60% of nursing homes in the country, making infection prevention and control the most frequently-cited problem in nursing homes nationwide.
91% of the nursing homes that have had COVID-19 were all found in violation of infection control laws before the virus struck.
One in five nursing home residents experience significant, avoidable harm in areas related to infections, and/or medication, and/or ongoing resident care.
Low staffing has been tied to serious problems in nursing homes, including malnutrition, dehydration, pressure sores, abuse and neglect.
There is no minimum staffing requirement in nursing homes.
Insufficient nurse staffing is rarely cited and even when the deficiency is cited at the highest level of harm to residents nursing facilities may not be sanctioned in any way.
The profit incentive has been shown to be directly related to low staffing.
About 70% of U.S. nursing homes are for-profit facilities and experience more quality deficiencies compared with nonprofit facilities.
The average fine imposed on nursing homes that were in violation of the law was reduced by over 30%.
The Federal Government introduced a set of proposed regulations that would save the nursing home industry $640 million annually, that included eliminating the requirement for facilities to hire an infection control specialist.
Facilities with the highest profit margins have been found to have the poorest quality.
In 2017, 14,000 complaints were investigated regarding unlawful nursing home transfers, discharges, or inadequate discharge planning – many motivated by profit.
Response to the Pandemic:
Residents were denied the right to visits with family or persons of their choosing.
Residents were involuntarily isolated in their rooms.
Residents were denied the right to socialize and participate in activities.
Residents were denied their right to a dignified existence, self-determination, resident centered care, to be fully informed and to privacy.
Facilities were allowed to involuntarily transfer/discharge residents without giving prior notice.
CMS published guidelines for nursing homes to admit COVID-19 patients from hospitals.
CMS directed state and federal surveyors not to site facilities for failing to have supplies of PPE, respirators and surgical masks.
CMS suspended the requirement that facilities report staffing levels through a verifiable payroll system.
The Long-Term Care Ombudsman was redefined by CMS as “Non-essential personnel,” and banned from entering any long-term care facility.
On May 2, two weeks of PPE supplies were ordered to be delivered to facilities by July 1.
Supplies of PPE that were insufficient and/or unusable began arriving at numerous facilities.
There are no universal testing requirements in nursing homes.
Data being reported about infections and deaths is highly unreliable.