Three years ago, I had to make a decision that broke my heart: I had to move my 88-year-old mother into a nursing home.
Eight years earlier, my mom, Lenora, was diagnosed with dementia. For years, I cared for her in my home but after she fell and broke her hip in January 2015, the hospital where she received treatment would not release her to my care. They told me it was no longer safe to have her at my home. Reluctantly, I found my mom a spot in a nursing home just outside of Los Angeles. At least she will be safe there, I told myself.
But soon after she got there I started to see disturbing signs of neglect. I would visit my mom, leave for a few hours, and come back to find her in the exact same position. Once, I found her sitting in her bed having soiled herself. Even the mattress was soaked. She frequently had urinary tract infections that would go undiagnosed until I insisted on a urine test because something was clearly not right.
In 2009, the Legislature passed a bill that would have explicitly required nursing facilities to obtain free and informed consent for the use of these kinds of drugs from residents or their representatives. Unfortunately, then-Gov. Arnold Schwarzenegger vetoed the bill. It is time to try again.
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My mom quickly earned a reputation among the staff as a “difficult” resident. Throughout her life she always knew what she wanted, and could be demanding.
That led to problems. For example, my mom insisted on going to the bathroom when she had to relieve herself. As she could not go alone, she would call for help. When staff ignored her calls, she would start screaming. Similarly, when staff left her sitting in her wheelchair in the facility’s corridors for hours she would act out. She could not tolerate the noise.
Instead of accommodating my mother’s basic needs, the facility put her on powerful antipsychotic drugs. These drugs were developed to treat conditions such as schizophrenia. They have never been approved for dementia patients. In fact, they pose such risks for these patients – including an almost twofold increase in risk of death – that the U.S. Food and Drug Administration requires manufacturers to include a so-called “Black Box” warning on the drugs’ label about the dangers of their use in older people with dementia.
But these drugs also have a strong sedative effect in many people, which makes them attractive for overworked staff at nursing facilities. A new report by Human Rights Watch found that more than 179,000 people in nursing facilities across the country who do not have schizophrenia or other relevant diagnoses routinely get these medications, often for the convenience of staff rather than to treat a specific medical problem.
When I raised concerns about these medications, staff at my mother’s nursing facility threatened that if I did not consent to the drugs, they would move my mother into a room with a notoriously unruly resident or throw her out altogether. I was left with no choice but to consent. When I later discovered that these medicines carried a Black Box warning and confronted the staff – who had withheld that information from me – I was told that “every medication has a Black Box warning.” In fact, they are very rare.
It is easy to blame the caregivers at her facility, but that would not be fair. I believe that staff often rely on antipsychotic drugs because they are chronically overworked and don’t have sufficient training to care for people with dementia. The other day, I spoke with a nurse at my mother’s facility who told me she had 23 residents in her charge. How is one person supposed to provide adequate care for so many people at once?
My mother is no longer on antipsychotics or other psych drugs because I eventually put my foot down. But many other people in nursing homes are.
It is unacceptable that nursing home employees give residents dangerous drugs without their or their representatives’ knowledge, or coerce people into agreeing to these medications. We need to put an end to that abusive practice.
In 2009, the Legislature passed a bill titled “SB-303 Nursing facility residents: informed consent” that would have explicitly required nursing facilities to obtain free and informed consent for the use of these kinds of drugs from residents or their representatives. Unfortunately, then-Gov. Arnold Schwarzenegger vetoed the bill. It is time to try again.
It’s hard enough to watch a loved one develop dementia. No one should be given dangerous drugs of questionable benefit without their knowledge or against their will.
Laurel Cline is retired office worker who lives in Los Angeles County. Reach her at Laurel_Cline@hotmail.com.