As many of you know, NPR has been running a 3-part series this week on the overuse of antipsychotic drugs in nursing homes, particularly among people living with dementia. I dutifully sent a listener comment to the website, but the advantage of having a blog is that I can express some ideas here in depth, without having to worry if it will ever get read at NPR.
First, the positives: The first two installments (Part 1 and Part 2) correctly identified the scope of the problem in nursing homes and the government initiatives to try to reduce the use of the drugs. While the first two parts were fairly investigative in tone and implied that the government wasn’t doing enough to enforce the guidelines, reporter Ina Jaffe correctly expressed the concern that much more progress needs to be made.
In addition, Jaffe finished on a positive note with Part 3, profiling the efforts of Ecumen homes in Minnesota to drastically reduce their antipsychotic use (currently down to 5-7% in their leading homes).
So what’s missing? Admittedly, it is difficult to get all the nuances into three 5-minute news segments; but there are some very important aspects to this story that need to be mentioned.
First, and perhaps most important, is the fact that this is NOT a nursing home problem. Even though Jaffe bemoaned the fact that there are still over a quarter million people in nursing homes taking these drugs, the best evidence we have suggests that there could be a million or more taking these same drugs in the community. Nursing homes get the attention because their use is monitored and reportable, whereas those who live in elder communities—or in their own homes—have no such reporting requirement.
The point is that this is a problem with our societal view of dementia and the narrow biomedical approach that drives the use of such drugs. Nursing homes are merely the tip of the iceberg. And unlike nursing homes, no initiative is being pursued to reduce the use of these drugs in the community, where much more potential harm is being done!
My second point is that the drugs were not started by uncaring people. Those who provide care and support struggle to do so in a system that does not give them adequate education or support for better approaches. In fact, the majority of comments that were first posted after Monday’s early broadcast were pro-drug—from numerous care partners who are often overwhelmed by the distress of those they serve and feel they have no other options.
So (as I have said many times before) even though the drugs are largely ineffective and dangerous, they cannot simply be removed without some insight as to how to care differently. People in all living environments need the kind of education and support that was demonstrated by Ecumen in the third installment in order to succeed.
This leads to my third point. I was somewhat alarmed by the vehemence with which NPR criticized CMS for lack of enforcement and pooh-poohed their attempts to work proactively to educate nursing homes on the issue. There are two problems with increasing enforcement: The first problem is that the guidelines are very easy for physicians and other staff to blur, so any documentation that loosely applies terms like “delusional,” “hallucinating,” or “a danger to oneself or others” can be used to justify the drugs in a way that makes it very difficult for a surveyor to challenge.
The other problem with increased enforcement is that deficiencies and fines don’t work! They lead to quick band-aid plans of correction in order to get back into rapid compliance, without producing any real change of organizational attitude or operational shifts to drive deep systemic change. In fact, I applaud that CMS has leaned on education and has not been too heavy-handed with the penalties.
There is a real role for enforcement. But in order for it to work there must be clearer guidelines by which to cite homes, and there must be heavy educational and “culture change” components to the corrections that are applied.
So thanks to NPR for identifying this ongoing issue, but we need to also broaden the discussion to look at how our society views dementia, how we have chosen to care for our elders, and the systems that regulate and reimburse that care. And we need to realize that the problem is not confined within the walls of our nursing homes—it lies within every one of us.