Many U.S. nursing home residents with a form of dementia are being medicated without informed consent, according to a report released by Human Rights Watch (HRW) on Feb. 5.
While the American Psychiatric Association (APA) recommends antipsychotic drugs only in limited circumstances, they are regularly administered in assisted living facilities to residents with dementia in order to control behavior via sedation, according to HRW’s six-month study of facilities in six states.
“In an average week, nursing facilities in the United States administer antipsychotic drugs to over 179,000 people who do not have diagnoses for which the drugs are approved. The drugs are often given without free and informed consent, which requires a decision based on a discussion of the purpose, risks, benefits and alternatives to the medical intervention as well as the absence of pressure or coercion in making the decision,” the report summarized.
“Most of these individuals – like most people in nursing homes – have Alzheimer’s disease or another form of dementia. According to US Government Accountability Office (GAO) analysis, facilities often use the drugs to control common symptoms of the disease.”
These drugs have significant side effects – from speeding cognitive decline to increasing chances for mortality.
Yet, frequently they are administered not as a measure of “last resort” or based on stringent medical analysis ruling out other treatment options, but rather as a convenient means of controlling resident behavior.
Informed consent procedures vary significantly from facility to facility. When a resident’s family is notified (often after medication has already been given), HRW found that the specific details (including the potential side effects) are often downplayed or glossed over.
In one of more than 300 interviews HRW conducted, a former nursing facility administrator explained how their facility would obtain consent for antipsychotic drug administration.
“They call you up. They say, ‘X, Y, and Z is happening with your mom. This is going to help her,'” she said, explaining that the staffer basically “sells” the drug’s administration to the family by glossing over side effects and risks.
The call is usually placed after the drugs have already been administered, she noted.
HRW did report several positive stories from nursing facilities that have taken proactive steps to reduce the number of patients receiving antipsychotic drugs.
“It used to be like a death prison here. We cut our antipsychotics in half in six months. Half our residents were on antipsychotics. Only 10 percent of our residents have a mental illness,” a director of nursing in Kansas told HRW. “[T]hey don’t have behaviors because they need an antipsychotic. You actually see them decline when they’re on an antipsychotic. … Residents have behaviors because their needs are not met. Not because of a lack of staff. We reduced the rate drastically and haven’t had to change staffing levels one bit. We did increase staff for activities, but not CNAs [certified nurse aides].”
More than 5 million U.S. citizens are estimated to have some form of dementia (a number expected to triple by 2050).
An estimated 1.2 million citizens lived in a nursing facility in 2014 (the latest data available from the Centers for Disease Control and Prevention).
Regulations, such as the Nursing Home Reform Act of 1987, offer protections in theory, but there is little state or national oversight or enforcement of the policy, the report explained.
“An industry entrusted to provide care – and paid billions of public and private dollars to do so – cannot justify compounding the vulnerabilities, challenges and loss that people often experience with dementia and institutionalization,” HRW stated.
The HRW report, titled “They Want Docile: How Nursing Homes in the United States Overmedicate People with Dementia,” interviewed people for the report from the states of New York, Texas, Kansas, Illinois, California and Florida.
The full report is available here.