"I’m sorry this is just not the behavior of an experienced politician. It’s also not the behavior of a person whose brain is working normally." When dementia is involved, sexuality can be very complicated.
To:California Assembly Member Robert A. Wieckowski (District 25, Fremont) P.O. Box 942849, Room 4016 Sacramento, CA 94249-0025
California Assembly Member Mariko Yamada (District 4, Davis) P.O. Box 942849, Room 5160 Sacramento, CA 94249-0004
California State Senator Mark Leno (District 13, San Francisco) State Capitol, Room 5100 Sacramento, CA 95814
Sponsors, California Assembly Bill No. 2171
Dear Hon. Legislators,
I am a Stanford and Harvard-trained geriatric specialist practicing in the San Francisco Bay Area. My practice, ElderConsult in Burlingame, specializes in eldercare education and house calls for elderly patients from San Jose to Napa. Though we treat elderly patients with all manner of conditions, we have become known for treating dementia patients who exhibit difficult behaviors.
I have recently read the bill that you are co-sponsoring, Assembly Bill No. 2171. I applaud you for trying to address the very real problems of elders living in residential care. However, I have some concerns about Assembly Bill No. 2171 as it now written.
My main concern is that, however well-intentioned, this bill is too broad and its terms are too ill-defined. As it is now written, the bill blames residential facilities for the problems that arise in residential care, apparently holding the facility responsible for choosing the correct psychoactive medications, which is not in the scope of a facility ( they report events to the physician who chooses medications) . The bill gives facilities very little leeway in resolving problems, other than taking steps to please the elder and/or the elder’s family. Facilities may not even have the ability to evict patients if necessary for safety. The penalties for violating the standards set by the bill are high: as much as $1,000 a day that can be retroactive to time of event.
The problems that you are trying to address with this bill are real, of course. But I am very concerned that this bill will actually make things worse for the most vulnerable patients, those with dementia who become aggressive, angry or delusional.
Dementia is not simply a gradual fading of memory. There are many kinds of dementia; it’s not just Alzheimer’s. Even in Alzheimer’s patients, behavioral symptoms can sometimes worsen suddenly. Even if the patient is exceptionally well-cared for, dementia can result in many kinds of disruptive behavior: aggressiveness, persistent yelling unrelated to discomfort, the need to walk incessantly, hyper-sexuality, paranoia, overwhelming anxiety.
There is a myth in our society that problem behaviors in dementia patients always result from unmet needs. The thinking goes like this: The elder with dementia is frustrated because of some problem that he or she cannot explain and acts out until the problem is solved. Sometimes, this is the case. I always treat pain first. I always try to get rid of medications that cause more behavioral problems. In fact I would say that if the Xanax, Ativan, and Ambien type meds were not used in this population, there would be much less agitation; which often require the use of antipsychotics to allow taper of these problematic medications. I always work to figure out what makes life worth living for our patients. We always try to support our patients’ wishes. We work to find out what activities our patients enjoy and help them to do those things.
But sometimes—more often than most geriatricians will admit—we can try everything and still the problem behavior persists. We can meet every need. We can address every physical ill. We can try to engage the patient. Yet still, they act out.
Already, I get desperate calls from families as far away as Gilroy or the San Joaquin Valley. These families cannot find any facility nearby to admit their loved one because the elder’s behavior is too disruptive. These are families who care for their elders in the spirit that I have described above. These are families who have been pushed to the brink, emotionally and financially (as I understand Medicare will soon not cover antipsychotic medication cost). These are patients who need care. And yet, facilities already are reluctant to admit such individuals. I am concerned that if this bill is passed, it will become even more difficult for vulnerable elders with behavior issues to find a spot in residential care. Specifically, an elder who has been aggressive, the bill states that behavioral measures must be used first. There are elders who must have medications to all any and all care from the start.
There is another myth in dementia care: Anti-psychotic medications should never be used in dementia patients, and prescribing them to patients is an “inappropriate use” or “chemical restraint”; used only to sedate and control the elder.
Actually, there are some behaviors such as psychosis, delusions and repetitive behaviors that sometimes respond ONLY to anti-psychotic medications. I do not advocate using these medications as a first-line treatment. Of course, pain, underlying medical problems should be ruled out before these powerful drugs are used.
But again and again, I am confronted with patients for whom all other interventions have been tried, and still, the behavior persists. Often, the behavior is so disruptive and disturbing that it is nearly impossible to care for the patient.
Assembly Bill No. 2171 rightly says that patients should be informed of the risks of various medical interventions. Anti-psychotic medications do increase stroke risk by 2 percent, and sudden death risk by 1%. Anti-psychotic medications may hasten decline. But if a patient is so freaked out, so aggressive or so hypersexual that it makes caring for them impossible, then that small increased risk may be worth it. I always inform the families of patients that prescribing anti-psychotics is palliative care and of the risks. We are shifting concern for a cure, to concern for quality of life. After the problem behavior is treated, I always try to decrease the medication to the lowest effective dose as soon as possible.
These kinds of decisions are often complex and nuanced. Sometimes only one drug of a certain class will work for a patient. Often, it requires a bit of trial and error to resolve a case. After we have a behavior in hand, it is a constant process of evaluation and adjustment to keep an elder calm, yet as alert as he or she can be. I am concerned that Bill No. 2171 does not address this complexity, but simply forbids “chemical restraint.”
Actually, there are other drugs that are commonly used in the elderly and the demented which cause far more problems than do anti-psychotics. Anti-depressants—especially Prozac, Cymbalta and Effexor—can make psychosis worse. Anti-anxiety medicines and sleeping pills—especially Klonopin, Ativan and Ambien—are used commonly in the elderly even though they cause more confusion and very often make problem behaviors worse. Again, Bill No. 2171 does not address this complexity.
Finally, I am concerned that this bill will force residential facilities caring for the elderly to resort to a defensive “checklist” approach to care, rather than addressing each patient as the individual that they are.
Take, for example, the bill’s attempt to make sure that elders are safe and do not fall in a residential facility. This is a complex problem, and different for each elder. Often, elders with dementia have poor safety awareness. After a hospitalization, an elder’s need for supervision may temporarily increase. Yet even with 1:1 supervision, falls happen. I have a patient who benefits from private, 24-7 care for in her by dedicated caregivers and yet still she had a fall that resulted in a broken leg. If facilities are held to be at fault every time an elder falls, then costs will skyrocket. Elders will not have access to the care that they need.
Here are some things that I would advocate:
• I would advocate that facilities do offer informed consent, but allow for leeway in urgent situations to avoid otherwise medically unneeded trips to the ER. If an elder is acting out and can be quickly treated in residential care, that’s often preferable, with consent or not. Otherwise, medically unnecessary trips to the ER result, which the hospitals will not tolerate. In addition, I have seen that more trips to the ER results in being referred to hospice earlier than would otherwise be the case.
• I would advocate that elders have a role in care planning, but that it also be recognized that not all elders are cognitively intact and rational. Simply pleasing the elder, or the elder’s family may not always result in better care. This needs to be recognized.
• I would advocate that residential facilities be given incentives to engage elders. Even patients with advanced dementia can find enjoyment. A man who was once an engineer might enjoy playing with toy gears. Another who once loved plants may enjoy sitting in the garden. Facilities should be encouraged to find out what each patient enjoys. Then, facilities should be encouraged to engage patients in activities that they actually enjoy.
• I would advocate legislative measures that encourage facilities to collaborate with medical personnel. The care of the elderly, and especially the care of the elderly with dementia, is complex. We should create a system that encourages caregivers, home administrators, doctors, and nurses to work together.
Thank you in advance for your time and consideration. I would be happy to discuss with you further, 650-357-8834.
Elizabeth Landsverk MD
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.