Another investigative report has been published about how residents of nursing homes are not receiving proper care. The New York Times published two recent articles (https://nyti.ms/3lP9Fe2l; https://nyti.ms/3DV9OCD) about increases in schizophrenia diagnoses for residents, with higher rates of diagnoses for Black residents, purportedly to prescribe antipsychotic drugs. For those individuals with legitimate mental health needs and diagnoses, these drugs are important for ensuring their health and well-being. But the increases in diagnoses among nursing home residents are suspect.
There are strict standards on the use of antipsychotic drugs for residents with dementia for whom there is no appropriate corresponding diagnosis. There is a black box warning from the FDA on use of antipsychotic drugs in elderly people with dementia, showing they cause increased risks and death. These drugs are not an approved treatment for dementia, but instead have been used as a means for controlling resident behavior, or for staff convenience.
Use of antipsychotic drugs to control resident behavior, for the convenience of staff, or not used to treat a medical condition, is considered a chemical restraint. It has been a longstanding right in federal law of residents to be free from use of chemical restraints.
Schizophrenia is one of only three diagnoses for which antipsychotic drug use is not publicly reported by the federal government. Despite normally presenting in a person’s 20s or 30s, the Times found that since 2012 there has been a 70 percent increase in schizophrenia diagnoses among nursing home residents.
‘It has been a longstanding right in federal law of residents to be free from use of chemical restraints.’
Further, in a May 2021 study the Office of Inspector General found that nearly one-third of residents who were reported to have schizophrenia did not have any corresponding service claims for that diagnosis. Data also shows spikes in antipsychotic drug usage since the start of the COVID-19 pandemic, where there has been significant staffing shortages and during which families and other caregivers, who provide a significant amount of unpaid care and support, were unable to enter facilities for months.
These trends are troubling not only because of the dangers antipsychotic drug usage causes in residents with dementia, but also because they are evidence of, and perpetuate, the systemic problems that exist in nursing homes—insufficient staffing levels, an underpaid and under-valued workforce with high turnover, ageism and lack of respect for residents, and lack of transparency and accountability for owners and operators of facilities.
Little Oversight, Low Transparency and Lack of Accountability
At what point will we stop accepting the poor to mediocre care that is the reality in too many nursing homes? We know what good care looks like, and minimum federal requirements for nursing homes emphasize individualized, person-centered care.
Calls for more money for the industry are loud and persistent. Increasing the amount of money given to nursing homes, however, is no guarantee of improved quality or services. Adequate controls do not exist for the use of public funds, and there are no assurances that an appropriate percentage of budgets are going toward providing quality care and meeting resident needs.
High administrative expenses, related party transactions and efforts to enhance profits contribute to the often insufficient resources being dedicated to staffing, training and other expenses directly related to resident care and well-being. Better transparency is needed around how public dollars are being used, and accountability requirements must be implemented for current and future dollars.
'Increasing the amount of money given to nursing homes, however, is no guarantee of improved quality or services.'
Also, efforts to hold facilities accountable for failing to meet minimum standards and provide quality care and services are insufficient. When deficiencies are cited, 95 percent are labeled as not causing harm to residents, thus no meaningful enforcement action is imposed. Facilities providing substandard care, including Special Focus Facilities (SFF), regularly rotate in and out of compliance, some maintaining their SFF status for years.
The resulting impact on residents, particularly people of color who disproportionately live in poor quality nursing homes, manifests in unmet needs, avoidable decline and rights violations. The resurgent increases in antipsychotic drugging and schizophrenia diagnoses are examples.
Current policy discussions are largely about expanding home- and community-based care systems. While necessary for offering consumers a range of options for obtaining quality long-term services, we must not, however, forget those living in nursing homes. The catastrophic toll of the COVID-19 pandemic, which resulted in the death of more than 185,000 residents and staff of long-term care facilities, and which highlighted long-existing systemic problems, can lead to no other conclusion.
Solutions to Support Staff, Residents, Families
What solutions can we promote to address the inadequate care being provided in nursing homes and to support residents and families?
Support Staff. Mandate minimum staffing levels, registered nurses 24-hours per day and an infection preventionist full-time in every facility. Numerous studies show the correlation between resident outcomes and staffing levels. Support living wages and benefits for staff, as well as programs to support recruitment and retention. Enhance programs to ensure the necessary education and training for staff to provide quality care to residents, including targeted training around caring for residents with dementia and those with behavioral health needs.
Conduct financial oversight and accountability. Require facilities to submit consolidated cost reports to CMS, which then must implement audits. Impose limits on the percentage of revenue that can be used for administrative expenses and profits.
Improve the survey and enforcement system to adequately hold facilities and owners/operators accountable for meeting quality standards. Ensure the imposition of meaningful enforcement remedies that prompt swift, corrective action by the facility.
Adequately fund the long-term care ombudsman program to advocate for individual and systemic changes that will improve care and services for residents.
Nursing homes are part of the long-term care spectrum for which there will be ongoing need, and the time is now to implement critically needed improvements in this setting.
Lori Smetanka, JD, is executive director of the National Consumer Voice for Quality Long-Term Care, in Washington, DC.