By Elizabeth Landsverk, MD
For the last several years, there has been great public concern about using psychoactive medications (anti-depressants, anti-psychotics, anxiety meds and so on) especially in people with dementia. Now, there is a bill pending in Sacramento—SB938—that would require a court to approve the use of all psych meds changes after the initial approval of “dementia powers” granting the conservator use of psychoactive medication. This affects the person with dementia that is “conserved,” that is, a person who can no longer manage his or her affairs and has a “conservator” as a guardian. Psychoactive medications cannot be given if a person refuses, unless there are “dementia powers” from the court. http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB938
People are right to have concerns. Studies have shown that up to 80% of antipsychotic use can be stopped in elders without serious consequences. But SB938 is not the answer. Bringing courts into the mix of medical decision making will only delay medical decisions that might be life-saving, and protect an elder from eviction for serious behaviors. It will not add to our elders’ quality of life. Rather, it will damage that quality of life for a significant number of elders needing medical treatment.
As a lead educator for the California Coalition for Culture Change, a multidisciplinary group working to decrease ant-psychotic use and improve care of people with dementia, we work to educate the public, facility staff and doctors on best practices. http://www.elderconsult.com/videos . As a geriatric specialist, I focus on the behavioral problems of dementia. I provide house calls around the San Francisco Bay Area, and I always tell the families of my patients that psychoactive drugs should be used with great care. Antipsychotics have a 2% increased stroke risk and a 1% increased sudden death risk. Narcotics can be over-sedating and constipating. Tranquilizers and “anti-anxiety” drugs may increase the risk of falls, which can be life threatening in the frail elderly. Acute withdrawal can be serious as well and look like worsening dementia. We almost never use Xanax, Ativan or sleeping pills in our practice; outside Ativan for a needed procedure or active death.
Because of these risks, many doctors and advocates insist that psychiatric medications should not be used in the care of patients with dementia. Others say they may be used in particular situations: for instance, in some with serious behaviors related to Parkinson’s disease or frontal dementia. In the field, it’s a common adage that when an elder with dementia act outs, it’s because the patient’s needs are not being met. The idea is that if you love and care for a patient enough, the problem behavior will disappear.
Many times, this is true. Dementia patients certainly act out if they’re in pain, if their routine changes unexpectedly, if they’re confused and afraid. The care team should eliminate all those possible problems first. Which brings up the problem with not giving elders with severe pain any narcotics, but that is another discussion.
A number of elders with dementia act out simply because the course of their disease has damaged their brain. No matter how well their care team meets the needs of these patients, some elders will lapse into violent, often disturbing, behavior: They will try to bite or hit their caregivers. They may make inappropriate sexual advances. They may try to climb out a window or over the wall, or be so distressed from delusions each day is a misery; thinking they don’t have money for care, the food is poisoned, their spouse is unfaithful. I see this every day in my practice. In these cases, conservative use of psychoactive drugs may be the only thing that keeps the elder at home, or in their care facility.
If SB938 were to be passed, court approval would be necessary before any change in psychoactive medications could be administered to a conservatee, who has dementia powers. Let’s see how this might play out with a couple examples from my practice:
•One 76 year old woman was conserved, and her appointed lawyer decided (without any medical input) that she did not need any psychoactive medication, despite reports that she was delusional and wandering at night. This patient had been living at home, taking an anti-depressant, Celexa, for irritability and anxiety. She was also taking Gabapentin to help with anxiety, an off-label use, but a drug that can help with pain and sleep without resorting to addictive sleeping pills. She required caregivers for safety.
She became more delusional, and pulled a knife on her caregiver she had previously liked. Judged a danger to herself and others, she was taken to the hospital. She was given Ativan, a tranquilizer, and Seroquel, an anti-psychotic and was so sedated she stopped walking and eating much. Two weeks later, she emerged from the hospital so weak and confused that she could not go home, and had to go to a dementia facility with nurses. It took three months to get her off the Ativan, because the dose must be tapered slowly to avoid behavior flare-ups. With the 1:1 for an increased falls risk and periodic aggressive behaviors toward other residents. The Seroquel was stopped and a small dose of Risperdal diminished her paranoia.
In this case, the correct medication was denied because the court lawyer did not discuss the case with the doctor. A small medication change, Risperdal, at home could have prevented the behavior that led to an expensive (> $30,000 for extra care) and possibly life threatening medical decline that made it impossible for her to live at home. How did this “protect” the patient?
•I recently cared for another woman, who is 90. She had back problems, and serious vaginal itching, Her pain, discomfort and anxiety made her so aggressive with caregivers that she was kicked out of one assisted living facility. She was on Tramadol for the pain, and Ativan for anxiety as needed.
To this, I added a very small dose of Seroquel, an anti-psychotic, and ¼ tablet of Methadone. The patient’s itching, anxiety and aggressiveness disappeared. She became able to ambulate around her new facility, and her mood improved. We were soon able to discontinue the Seroquel.
In my practice, we try to use the lowest effective dose, and to taper down whenever possible. Dementia patients do not manage their medications. There is NO drug-seeking. Patients usually don’t even know what meds they’re taking.
If SB938 had been in force, this patient would have had to wait several weeks or months for a court to review her case. She would have continued to act out. This most likely would have made the hospital team sedate her with Haldol and Ativan. That, in turn, would lead to a referral to hospice and, most likely, an avoidable demise.
That’s exactly what happened in a recent case of an elder woman who had Parkinson’s disease. Her dose of Seroquel left her unresponsive in the afternoon, but the court said that was OK. She died of aspiration pneumonia—a common outcome with over-sedated elders—three months later.
Of course, the medical profession is not infallible. Doctors need much, much more training in how to care for our ever-increasing population of frail elders. Doctors need to be held accountable when things don’t work out. Let’s use big data from insurance companies and credit card companies to address those cases when elders are left on tranquilizers, antipsychotics and other psycho-active meds for years without any attempt to decrease doses. Let’s work to avoid the over-medication of some elders. Data could be collected from pharmacies to get a handle on prescribing patterns without violating patient privacy.
But let’s not pretend that this issue can be solved with a law that requires courts to get involved in each medication change for individual dementia patients. Each patient is particular. Each medication is particular. Each situation is particular. It takes years of medical training and experience to decide what might work in a particular case.
Geriatric trained doctors are much more like likely to have this insight than judges. And what about the deluge of cases that would clog the courts should SB938 pass? It now takes four to six months to get a conservatorship hearing. Many of my patients would die if they had to wait that long for a medication decision.
We need better methods and data to get a handle on outcomes in care of our frail elderly. We need to address the issue of behavioral problems and medication in our elders. But SB938 is not the way.