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BY JEANNE M. HANNAH, J.D. In September 2000, my socially active, bright, healthy mother—aged 84—canceled her weekly bridge group. When my sister, with whom she lived, returned home from work, Mom told her that she had had a very frightening day and that there were monsters flying all around the outside of the house and trying to get in the windows, howling at her “Alice, it’s time to go.” Needless to say, my mom was terrified. My two sisters took Mom to the emergency room of a mid-Michigan hospital. They gave a brief history to the ER doctor. This history disclosed an active diagnosis of Parkinson’s disease, which was being treated by Mom’s internist and was under control, hypertension and heart disease (she’d had a triple by-pass a few years earlier), no family history of mental illness, no diagnosis of mental illness by Mom’s regularly treating internist, and a recent fall. The ER doctor did a urinalysis that disclosed a urinary tract infection (UTI). Then he made an error common in treating the elderly. His error was in missing a diagnosis of delirium—confusion caused by the underlying UTI. Sadly, perhaps because he knew that end-stage Parkinson’s disease patients often suffer from psychosis, this ER doctor, without consulting Mom’s primary care physician, diagnosed psychosis as the cause of her auditory and visual hallucinations. He facilitated a transfer to the psychiatric unit of a local hospital. He told my mother and my sisters that if she checked herself in voluntarily, she’d be permitted to leave and that if she did not agree to do so, he’d have her admitted involuntarily. Lack of training in geriatrics often results in misdiagnosis of the elderly Part of what occurred here were common errors made by doctors and nurses. Delirium is extremely common in the elderly and can be caused by a number of conditions, including, but not limited to infections like Mom’s UTI accompanied by fever, medication side effects and interactions, metabolic or electrolyte imbalances, dehydration, malnutrition, retention of urine or feces. The hallmark of delirium is its sudden onset, which family caregivers like my sisters could readily identify. And yet, research shows that doctors miss delirium as a diagnosis 95% of the time! Undoubtedly a primary reason why delirium is missed as a diagnosis is that fewer than 2% of the nation’s doctors are certified in geriatrics. Most doctors and nurses have little or no training in geriatrics. Thus, they seem more disposed to diagnose dementia or psychosis in the elderly than do they seem aware of the diagnosis of delirium. 26% of those patients who become delirious die within one year, usually of the underlying cause of the delirium or, in my mom’s case, of the cascading complications that overwhelmed her beginning with the side effects of the Risperdal, an antipsychotic prescribed for her. Only hours after her transfer from the ER to the psych ward, Mom’s cane—which another patient encouraged her to use to fight off the monsters who “were pursuing her” and scaring her—accidentally came into contact with a staff person. This was interpreted as an “assault.” No cause for Mom’s behavior was considered or explored. Three things next occurred. The nurses took away her cane, which, as a PD patient she used when she was not using a walker. They isolated her for a time. The psychiatrist prescribed Risperdal—an antipsychotic that is not recommended by gerontologists for use in the elderly. And then she fell—twice. The first time she “only” bruised the right side of her face. The second time she broke three ribs and was transported to a hospital briefly, then back to the psych ward. Falling made Mom anxious about falling again. Thus she curtailed her intake of water to avoid having to hurry to the bathroom. This made her urinary tract infection worse, increased her delirium, made her unaware of thirst and confused enough to be unable to drink adequate amounts of fluid. Worse, it led to dehydration and kidney malfunction resulting from an electrolyte imbalance. These serious complications then kept her body from eliminating her medications, most of which were drugs excreted by the kidneys. As a result, she died only 65 days after getting a very common, very simple to treat UTI. She died because other complications resulted from the treatment she received and/or as a result of side effects or interactions resulting from drugs she was given, because the drugs she took weren’t adjusted for her worsening kidney function, and because the simple, inexpensive treatments that she needed were not provided for her. A primary cause of death was “toxic encephalopathy”—brain death—meaning that she was literally poisoned by the medications that had built up in her body. [Of course, it had not occurred to the doctors to reduce any medications despite their knowledge of her electrolyte imbalance and their failure to treat it.] Use of antipsychotics in the elderly population for off-label purposes is unethical Shame on me for not following through. I simply assumed that the doctor and the hospital would follow my directions. I did not check. Therefore, I was astonished to learn four weeks later that Risperdal had only been withdrawn (cold turkey, of course) that morning. My Mom’s medical records revealed that her kidney function was normal for her age upon admission. Nowhere in my mother’s medical records could I find any indication that, upon discovering the electrolyte imbalance three weeks later, there was any effort to treat her. She had signed a piece of paper saying that she gave her “informed consent” to the Risperdal. But I ask you: how can a woman who is that ill, that frightened—one with a primary diagnosis of psychosis—give her informed consent? Nothing in those records reflects that I was consulted as her patient advocate to give or to refuse to give informed consent or to revoke the informed consent they’d asked her to sign. And indeed, there is no indication in her records that she gave her informed consent not to be treated for something as common and simple—worse, fatal if untreated—as an electrolyte imbalance. The failure to treat this readily diagnosed, treated, and easily preventable condition was a major precipitator of my mom’s death. Lab tests that I was given after her death showed that on the morning I transferred her to a nursing home near my home in Traverse City, Michigan, her osmolality level (which measured how well her kidneys were functioning) was 361. One week later, she was admitted to the hospital in Traverse City and her osmolality was 435. A continuing medical education seminar for nurses that I “attended” online while researching the cause of her death and writing my book Taking Charge: Good Medical Care for the Elderly and How to Get It said this:
Informed consent vs. big business While it is true that this information wasn’t published at the time my mom was hospitalized, a study had been published in March 2000 in which Dr. Joseph H. Friedman, MD, a professor at Brown University Medical School and the co-author of Taking Charge, stated his conclusions about the use of atypical antipsychotics in PD patients: “We think risperidone is poorly tolerated and should be used only as a last resort; that olanzapine is better than risperidone but will, in a majority of patients with PD, worsen motor function.” Questionable medical treatment without informed consent is unethical Our family experienced several levels of a failure to obtain informed consent. Lack of informed consent about a diagnosis and a failure or refusal to provide treatment: Three weeks after she entered the facility, lab reports fully documented a serious electrolyte imbalance. Mom not told. I was not told. My sisters were not told. Mom’s Medicare coverage had run out and the facility wanted to transfer her out of skilled nursing where, unlike in the extended care wing, intravenous treatment for the electrolyte imbalance could have been provided. None of us were advised that, if untreated, her electrolyte imbalance would surely get worse and cause her death. Thus, we were deprived of the right to seek appropriate medical treatment for her. We were not asked for and we would never have given our informed consent that she be “warehoused” without treatment until she succumbed to a condition that was already diagnosed, one that could readily and inexpensively have been treated and cured, and could have been prevented in the future.
If I, as Mom’s designated patient advocate, had been given the name of the drug Risperdal and had been given a copy of the package insert, there is no way on God’s green earth that I’d have given any consent to the use of this medication for Mom. The package insert would have disclosed serious potential problems, particularly in a frail elderly patient like Mom with her medical history and with the medications that she was then taking to treat those conditions:
• Insomnia • Neuroleptic Malignant Syndrome, characterised by hyperthermia, muscle rigidity, autonomic instability, altered consciousness and elevated CPK level has been reported with RISPERDAL. In this event, all antipsychotic medicines should be discontinued. Precautions: Caution should be used when prescribing RISPERDAL to patients with Parkinson’s disease since, theoretically, it might cause a deterioration of the disease.
In my opinion, as a layperson looking at this issue, it seems very much like the recently disclosed inappropriate intravenous administration of anti anemia drugs (Procrit, Epogen being prime examples) to fragile dialysis patients. I wrote about this recently in my Blog “Good Medical Care for the Elderly”. I quoted the Boston Globe, which in a series of three news articles, cited research by Harvard doctors showing that if administered by injection, the drugs stay in the patient’s body one third longer. Thus one-third less drug is required. Yet, Medicare guarantees the dialysis clinics a profit of 6%—in other words, the clinic is paid by Medicare 6% more than the clinic pays for the drugs. Sell more drugs, make more money, clinic and drug company alike. The Globe called this activity “profiteering.” The articles cited medical studies revealing a high risk of fatal heart attacks and strokes associated with intravenous administration, as occurs about 95% of the time. Additionally, it costs Medicare about $537 million more annually when clinics administer intravenously. The drugs companies successfully lobbied the FDA so that the package inserts recommend intravenous administration. They successfully encourage clinics to administer intravenously and the patients are likely completely unaware of the risk this poses for them. I am angry because my mom’s death was completely unnecessary. The causes of her death were readily capable of accurate diagnosis and appropriate treatment. Moreover, every condition that developed after the urinary tract infection could have been avoided had we been given accurate information. My mom’s death was harrowing, painful, frightening for her and for us. All of us felt helpless and we floundered as we tried to find a way for her to survive. After Mom’s death, I decided to do something that would hopefully make something good come from something tragic. Once I had done a significant amount of research into the causes of my mom’s death in order to assuage my own feelings of guilt, I learned about how lack of training in geriatrics leads to terrible mistakes in diagnosis and treatment of the elderly. I learned about how family caregivers, despite a lack of medical training, can learn to recognize subtle changes in status of their loved ones and to communicate these to doctors and nurses so that prompt and accurate diagnosis is made and appropriate treatment is begun. I also learned how important it is to work on prevention because all of the six common and potentially fatal conditions I write about are preventable. I decided that what I had learned was too valuable to put away in a drawer. Thus, I have published a book titled Taking Charge: Good Medical Care for the Elderly and How to Get It. Taking Charge is not an indictment of doctors, nurses, care facilities, or drug companies. It is a caregiver manual that tries to put a human face on the issue of family caregiving so that caregivers can identify with what occurred in our family and learn to avoid the mistakes we made. Taking Charge seeks to empower family caregivers so that they can become valuable and valued members of the caregiving team. You can preview substantial portions of Taking Charge on the Internet at http://goodmedicalcare.com/ About the author: Jeanne M. Hannah, J.D. | |||||||||||||||||||||||||||||
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Jeanne M. Hannah, J.D. 
