I'm An ER Doc. When My Mom Was At Her Sickest, I Was Powerless To Stop What Happened Next.
A few months before Mom ended up on the streets, she was admitted to the psychiatry ward at the hospital where I work as an ER doctor.
Leading up to that admission, I’d narrowly rescued her from a manic, delusional bender while she was off her psychiatric medication, risperidone. I’d gotten a call from the police: “Your mom has stolen her neighbor’s dog saying they are having a playdate with her cats.”
When I coaxed her to the ER that time, under the guise of getting a prescription refill, she became agitated and started yelling at me as they guided her to the psychiatric lockdown unit.
“You are my daughter, not my doctor!! I am NOT staying here.”
ER security was called. I worried they might put her in four-point restraints. My mom is not a violent person, but she can get animated, especially when off her meds. She’s been the victim of domestic violence and carries the defensive memory of that trauma in her body.
As a health care provider, having to restrain a patient is one of the worst parts of our job ― one of the rare moments when we must use force. I regularly fantasize that someone will invent an aerosolized antipsychotic that will pleasantly knock people out when they are a danger to themselves and others.
Understanding what might happen if Mom escalated, I walked up to her with open arms and stood calmly. Her look gradually softened. I gave her the biggest hug I possibly could.
Out of the corner of my eye, I saw Dr. Liu, a colleague. “Janet, we’re here to help you,” he said in the friendliest voice with both of his palms turned upward. Mom walked calmly into the unit and agreed to dissolvable medication under her tongue.
***
As an ER doc in Toronto, I never thought my own mother would end up overnighting on a bus bench in her late 60s. But in other ways, it was not a complete surprise. According to a recent meta-analysis, around 67% of people experiencing homelessness have a current mental health disorder, like my mom, who has schizoaffective disorder.
My sister and I had an unconventional childhood due to her illness, which involved being on welfare, using the food bank and spending time in foster care after child protection services found us homeless and camping out in a stranger’s backyard. Against all odds, I managed to put myself through medical school and a Harvard fellowship, and I am now a professor at University of Toronto and the mother of two little girls.
***
After a few weeks of having antipsychotics administered daily on the psych ward, Mom transformed into a ray of sunshine, frying eggs in the communal kitchen. The psychiatrist had little to offer in terms of meaningful change to prevent relapse.
My sister and I had been hopeful that with her admitted to my hospital, we might finally be able to get her into an assisted-living facility and put on an injectable medication.
During a family meeting with the hospital social worker and psychiatrist, my sister and I pleaded to be made joint substitute decision-makers. But that would require my mom’s consent, since the team deemed her capable of making decisions as long as she was on her meds. Even though she admitted to only taking her pills “when she felt like it,” she wasn’t disruptive enough to society to be placed on a treatment order.
“Your mom walks independently and can feed and clothe herself,” the social worker said, her eyes full of sympathy. “We don’t have any grounds to keep her against her will or force her into care.”
My sister and I gave each other a knowing look: There was only so much the health care system could do. When someone can perform basic functions and is not physically endangering themselves or others, doctors must award the status of free will. Given that nothing about her environment had changed, we knew having her on the same treatment plan would only produce the same outcome.
Placing those with mental illness on treatment orders or involuntary holds is an area of immense controversy, and rightfully so. Just as every person without a formal psychiatric diagnosis is unique, so, too, is every single person with a delusional disorder.
When patients have been violent, employing an involuntary hold is our last, but necessary, resort. But for someone like my mom, who is generally just making bizarre choices that may or may not cause harm to herself or others, it becomes a gray zone. This kind of gray zone occurs elsewhere in medicine, too. For example, people with very severe drug addictions can struggle to make choices that represent their best interests. People with dementia may or may not be able to execute decisions that serve them.
How do we know when an involuntary hold falls in that perfect quadrant of being both in the patient’s and society’s best interest, and when it falls squarely outside of both ideals?
***
Not surprisingly, after discharge from my hospital, my mother continued to avoid regularly taking her antipsychotic medicines and refused to start an injectable medication. That was when she made the decision to abandon the home paid for by my sister and me in Ontario. While off her meds, she secretly sublet her place with a one-time cash deal, using the money to take a flight to our hometown of Edmonton. Unbeknownst to us, she then ended up on the streets.
When she went to the ER in Edmonton after a difficult night at the homeless shelter, the ER doctor called me. I tried to get her on an involuntary hold at the psych ward. I again was told that she was capable of making her own decisions. “You can’t cage the free bird,” the ER nurse said in trying to console me.
Weeks later, she lost her phone, and I completely lost her. A reluctant 911 operator took down her name as a missing person. “We don’t normally put out a search request for homeless people, but we’ll do it for you this one time.”
***
I’d been trying to feed my youngest at the kitchen table when my phone buzzed with an Edmonton number. I rushed to answer, hoping it was my missing mother.
It was Jimmy, a mall security manager at Mill Woods Town Centre Mall in Edmonton, calling to tell me my mother had been “frequenting” the mall during the day. Jimmy managed to coax Mom to the phone.
Mom was paranoid off her meds and convinced I was going to force her to go to the hospital again when I tried to arrange a time to meet up with her. “I’m not doing it unless Jimmy mediates our visit,” she demanded. “I will not be locked up!”
I couldn’t catch a flight until that Saturday, but Jimmy agreed to be present on his day off. He then gave me his phone number and said I could call or text any time to check on Mom.
***
My mom went on to lose five phones I sent her over the two-year period she was without a fixed address. She missed two years of scheduled Sunday video calls with her grandchildren. When her phone was operational, though, she’d call 10 times per day, hoping to get a glimpse of them. “POETRY IN MOTION!” she commented when I sent her photos and video footage of my daughters, ages 5 and 8 now.
Deciding whether to place someone on a forced treatment order or involuntary hold can bear similarities, ethically speaking, to what we must do for end-of-life decision-making in the ER.
The main question we ask family members when they’re suddenly thrust in the position of having to decide for a dying loved one is: What would your family member have wanted if they were in the position to make the decision?
I’ve always wanted Mom to enjoy her life and be free. But the question I always ask myself is: What would Mom want if she weren’t delusional? And generally that answer is that she would want reliable shelter, to be able to shower and to be able to have a relationship with her grandchildren. Off medication, none of these things were possible.
Then again, during those two years, she never harmed anyone and never harmed herself. And she was free to explore wherever she wanted. So who was I to suggest she be forced into treatment and locked up?
***
In 2023, Mom was admitted to the psych ward again, this time at Grey Nuns Hospital in my hometown of Edmonton. A social worker managed to convince Mom to move into a facility and start on Invega Sustenna, an injectable antipsychotic. This time the care team erred on the side of the perspective my sister and I offered. Or maybe my free bird of a mother finally had just decided she was OK with being caged.
It felt like the miracle I’d pretty much given up on. Before she was homeless, as a responsible daughter-doctor, I’d asked her what her end-of-life wishes were. She’d told me she wanted to die surrounded by nature. The next year, when she slept under a tree in a park one night, I thought her dying wish might come true.
It all sounds so simple now: an injectable antipsychotic and supported assisted living. But this story easily could have ended differently, with her being found hypothermic on the streets of a cold Edmonton winter. I’m still never sure if the stability for my mom will be long-lasting, but every day I’m grateful to know where she is and that she’s sleeping in a bed covered by a roof.
Homelessness is complex and certainly not all due to mental illness. With rising inflation and low or fixed incomes, I see many in the ER who are sleeping in cars or shelters while working a full-time job. I’m not here to provide answers but to share one story of how I was powerless to prevent my own mother from becoming homeless due to her mental illness, despite my intimate knowledge of the system.
In a time when federal data in the United States is showing a rise in homelessness in most states, I hope we can use our creativity and political will to reverse these awful trends. People like my mom depend on us.
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