Recently, it came to my attention that a Residential Care for the Elderly Act, Assembly Bill No. 2171, has been introduced into the California state legislature. You can read the text of the bill here.
In many ways, the bill, which seeks to amend the state Health and Safety Code, reads like an Elder Care Bill of Rights. It seeks to guarantee that elders are not mistreated while in residential care, and that they have the freedom of choice as long as they are capable. It gives elders, or their caregivers, a law under which they can sue if an elder IS mistreated. It’s hard to argue with that, right?
There’s just a problem. And it’s a BIG problem in my view. This bill, in section 12, says that elders be “free from physical and chemical restraints and the inappropriate use of psychoactive drugs.”
Why is this a problem? For one thing, it’s the only place in the bill where the drafters of the bill presume to practice medicine. Let’s explore what they mean. Here are their definitions, as outlined in the draft bill:
(a) “Chemical restraint” means any drug that is used for discipline or convenience and not required to treat a medical condition. (b) “Inappropriate use of psychoactive drugs” means a psychoactive drug that is given to a resident under any of the following circumstances: (1) Without the informed consent of the resident or the resident’s representative. (2) To treat needs or symptoms associated with dementia or related diseases, unless the facility has first tried and documented appropriate nonpharmacological approaches to respond to the resident’s (3) To treat needs or symptoms associated with dementia or related diseases, unless a physician has directly examined a resident for this purpose and determined that the medication is medically necessary for this purpose. (4) For purposes of discipline or convenience and not required to treat a medical condition. (5) On a pro re nata or as-needed basis.
At first glance, this seems fine, right? I mean, who would advocate drugging elders without their consent, or giving them psychoactive drugs without trying other approaches, or giving them psychoactive drugs before a physician has examined them?
Here are the bits that give me pause: (3) “…Determined that the medication is medically necessary for this purpose…” (4) “…Not required to treat a medical condition…”
Within medicine, there is a controversy over whether certain anti-psychotic drugs should be used to treat patients with difficult behaviors that result from dementia. This bill throws the weight of California law behind the “anti-drug” side of this discussion. The assumption is that psychoactive drugs are not medically necessary in cases of dementia. I think this is completely inappropriate. Why?
First, the California legislature should not be practicing medicine. The question of psychoactive drugs and dementia is multi-faceted. There simply is not one right answer. Many of the items in this bill are well-meaning, but ill-defined. They are likely to create more problems than they solve.
Second, I think this bill will have an absolutely chilling effect on residential facilities. The tenor of the bill is that problems are the facility’s fault. For instance, if the managers of an elder care facility are faced with a $1,000 a day penalty for giving psychoactive drugs in a way that someone may question, then it will simply be easier not to give those drugs at all. How can you accomplish that? By not admitting patients who exhibit the difficult behaviors that sometimes make it necessary to prescribe these drugs.
Third, the bill greatly oversimplifies the factors that are likely to result in problems for dementia patients. The idea of creating certain standards by which all resident of care facilities be treated is a good one. But this bill is so broad and the potential penalty is so onerous—$1,000 a day for a violation—that it’s likely that any elder with a potential problem will be steered away by care facilities.
So that means that, if this bill passes, the patients with the most disruptive behavior, the most vulnerable and suffering patients, likely will not have access to residential care facilities. Already, I see new patients each week who have been turned away from facilities because of aggressive behaviors. What will happen if this bill passes? I fear that even more disruptive patients will be trapped at home, with stressed and overwrought family members. This will result in untold suffering, not only for the elders, but for their families. It can even be dangerous. Even the most caring family will find itself overstretched by a dementia patient who’s veering out of control.
There is a myth in this country about dementia. It goes like this: Dementia is a terrible disease, a gradual fading of mental capacity, a slow fading of the self. When problems arise in dementia patients, it’s always because elders are frustrated. Problems always occur because elders’ needs are not being met.
Very often, this is true. I am the first person to cry out against sedating dementia patients simply to keep them quiet. Of course, it makes to sense to check whether an elder has pain, or an underlying medical condition, that is making them behave strangely. Of course, it makes sense to check whether some facet of the elder’s routine, or living situation, is bothering them.
But, in quite a few cases, this is not enough. I specialize in dealing with behavioral problems that arise in dementia patients. Families often call me after they’ve already consulted four or five doctors, with no satisfactory results. My office fields calls from hundreds of miles away.
These are families who love and care for their elders. These are families who are willing to pay privately to help their elder. These are families who have tried everything: medical detective work of all kinds, occupational therapy, physical therapy, recreational programs, you name it. And still, their elder’s behavior is out of control.
Here are just a few of the situations I have encountered over the years: An elder who was constantly trying to escape from his residential facility, often ending up wandering by the side of the road. An elder who became so violent that caregivers where afraid to bathe her, or to help her dress. An elder who often felt so paranoid that she would refuse to take her medications, even though not taking her meds was life-threatening. An elder who cries, “Help me, Help me!” constantly, even though she is exceptionally well cared for and a caregiver is always sitting by her side. A once-shy engineer who became hypersexual, groping any woman who passed him in his care home.
In cases like these, small doses of anti-psychotic medicines can be transformational. They can be the difference between being kicked out of a residential facility and being able to stay. Or, they can be the difference between staying home and going to a care facility. When elders’ behaviors veer into violence, anti-psychotics can be the difference between life and death.
Of course, anti-psychotics must be used with care. Of course, elders taking them should be monitored closely. But the legislature should not be in the business of banning them.
In a series of blog posts following this one, I will outline, one-by-one, the myths that I believe limit our effective care of elders with dementia. I will explain, in detail, why I think that anti-psychotic drugs have their place in the treatment of dementia patients.
I invite your comments.