Patient-centered care that fails the patient
By Anonymous in Washington state
Author’s note: names and identifying details have been changed.
My wife – the person I pledged to stick with through sickness and health, and always have – now lives thousands of miles away from me, lost in psychosis, because a doctor told her to stop treatment for her severe mental illness.
Why would a doctor do that, you might ask. Well, to the doctor, my wife didn’t seem sick. Why didn’t she seem sick? Well, because the medication she was taking was, in fact, working!
Rebecca’s descent into mental illness began more than a decade ago, when she started believing that she was being followed. “They” had installed cameras and microphones in our house and cars. Any serious conversations had to be outside, “out of earshot.” Eventually, every friend and neighbor fell into her sphere of suspicion.
Over time, Rebecca began mounting a defense. She severed relationships. She unplugged appliances and electronics, put tape over outlets, and covered digital displays. As her condition deteriorated, Rebecca cracked open light switches and wall outlets and disconnected live wires. She dismantled motion sensors and smoke detectors. One day she cried out to me, “I just don’t know who I can trust!”
Rebecca eventually became convinced that both I and our dog were imposter clones, switched out by the CIA, on assignment to kill her. Her behavior was a classic example of Capgras syndrome, a delusional disorder where a person believes that someone they know has been replaced by an identical-looking imposter. This belief can be directed towards family members, friends, or even pets.
Rebecca would ask “where did they bury my real dog” and “what did they do with my husband?” She wouldn’t eat meals with me; if I bought or prepared food, she threw it away for fear of being poisoned. If the dog approached, Rebecca would grab it by the collar and throw it out of the house. Through all of this, Rebecca never believed that she had mental illness (due to a symptom called anosognosia) and was convinced that all doctors were part of the conspiracy to kill her.
I did everything possible to help my wife. I contacted every mental health organization in our area. Psychiatrists coached me on how to stay centered, and I attended family support group meetings. Rebecca was terrified, and often called 911. Mobile crisis teams came often, and I was on a first-name basis with law enforcement. At one point, Rebecca was arrested for behavior related to her psychosis, but charges were dropped before she could get a court-ordered evaluation, diagnosis, or treatment. Rebecca then tried to harm herself with a kitchen knife, which she later denied. Responders shrugged off the incident, explaining that my audio recording of the episode wasn’t strong enough evidence to warrant involuntary detention.
Professionals saw the risk for harm but offered nothing preventive, saying verbatim, “She is obviously experiencing something within the schizophrenia spectrum but unless she’s a danger to herself or others there’s nothing we can do. In the meantime, you should sleep behind a locked door.”
In the span of just two days, Rebecca destroyed our home alarm system with a hammer, continually threatened me, and called the White House to launch a complaint against the CIA. A mobile crisis team finally decided to place her on an involuntary hold.
Rebecca was hospitalized only for a few days, but she finally had a diagnosis and a prescription for anti-psychotics. And the medication worked! Over the next few months, Rebecca was my wife again, and I was her husband. We cooked and ate together, and the dog rested at her feet while we watched TV. Our adult children visited for Thanksgiving and Christmas, the most enjoyable holidays any of us could remember.
It all came apart, however, when Rebecca had a routine appointment with her primary care provider (PCP). Rebecca claimed that she was experiencing side effects from the medication, and explained that she wasn’t sick and didn’t need the pills anymore. The doctor easily could have consulted our family, since Rebecca had listed me and our kids on signed releases of information, but they didn’t.
The doctor could have consulted the hospital or mental health specialists within their medical group. They could have researched alternative anti-psychotics or medications to ameliorate potential side effects. Instead, the doctor simply said “Okay, you can stop taking the pills.” Because that’s what the patient said that she wanted.
Rebecca’s PCP wrote in the notes, “Patient feels she is stable, denies any need for counseling or medications at this time. No evidence of any psychosis during today’s evaluation. She denies any concerns for her husband possibly hurting her.” The PCP simply missed the obvious truth that the medication was working – controlling Rebecca’s delusions, and giving her a chance to live a normal life at home.
It took several weeks for the anti-psychotics to clear, and Rebecca predictably decompensated to her pre-treatment mental state. Now she’s gone from us, and our family has been ripped apart — all because a poorly-informed doctor unraveled everything that Rebecca’s family, a team of mental health officials, and first responders had worked for years to achieve.
As tragic as our story is, it is not unique. Rebecca’s doctor is but one of many who, either ill-informed about or ill-equipped to deal with severe mental illness, prioritize “patient-centered care” over best practices and basic common sense. Doctors who do this fail not only people like me, and my children; they fail their patients too, people like my wife.
