By: Carolann
Introduction: Figuring out when a loved one is in crisis and whether they are competent to make medical decisions is a tough part of caregiving. Caregivers often face complex situations, trying to tell if someone is just being defiant or genuinely can’t cope. Knowing the signs of a crisis and reacting correctly can make a big difference for both the caregiver and the person being cared for.
Recap: Acheron’s story shows the challenges of caring for a brilliant person with a substance use disorder. At his lowest, he couldn’t take care of himself and became isolated, spending his days drinking alone, neglecting his hygiene, and suffering from memory and neurological issues. The medical team saw his ability to walk to the liquor store as a sign he was okay, which shows how hard it can be to address a loved one’s crisis when doctors and caregivers see things differently.
Crisis Not Averted: By the summer of 2023, more than a year into treatment, Acheron’s symptoms worsened. He had Parkinson’s-like tremors, memory lapses, and aggression—none of which were like him. Despite our efforts, the healthcare system blocked us from getting proper care.
A Pattern of Dismissive Treatment: Acheron’s telehealth doctor suggested that if I was “truly alarmed” about his condition, I should take him to the ER. His tone suggested my concerns were exaggerated because I hadn’t taken him to the hospital yet, even though Acheron refused to go.
Despite the ongoing COVID-19 outbreak, I convinced Acheron to go to the ER, sit among possibly contagious people, wear a mask, and wait all day to see a doctor. I provided a written list of his neurological and psychological symptoms, which should have led to immediate help. But since Acheron wasn’t a threat to himself or others, the medical team didn’t see it as a crisis.
The hospital gave a preliminary diagnosis of Wernicke-Korsakoff syndrome, ignored his organ failure, and referred him back to a family doctor, even though he, like many Canadians, didn’t have one. My urgent requests for hospitalization were dismissed with the comment, “You know he’s been drinking, right?”
I sent a letter to Acheron’s telehealth doctor detailing his concerning living situation and his competence. His home was full of flies, cherry pits, orange peels, and disgusting toilets. His short-term memory was nearly totally gone. I expressed my belief that Acheron was no longer competent to make decisions and needed immediate in-patient care. The doctor agreed to a follow-up appointment with Acheron, but I wasn’t allowed to attend.
Despite Acheron’s confusion and drunkenness during the appointment, the telehealth doctor deemed him competent to make medical decisions and allowed Acheron to remove me from his care team.
Competence: A Subjective Determination Deciding if a patient is competent is tough for doctors, who often rely on limited tools and brief meetings. These decisions are usually made quickly, with little input from caregivers, whose insights are often undervalued. Current policies prioritize preventing physical harm to self and others over other important outcomes, like preventing imminent death from organ failure.
I pursued an independent assessment through the Capacity Assessment Office of Ontario to determine Acheron’s capacity for decision-making. This required his cooperation and depended on the hospital respecting my wishes and acting on them.
A Narrow View of Crisis: In Ontario, a mental health situation is generally only considered a crisis if there’s an immediate risk of death or harm to others. This narrow definition lets other serious concerns be ignored or pushed back onto the caregiver.
Advocacy for Systemic Change: We need a broader definition of crisis that includes safety and overall well-being, not just immediate risk of death. We need better enforcement of the Mental Health Act.
We must support the development of efficient, easy-to-use tools for assessing competence in patients with mental health or substance use issues. These tools should include caregiver input and track changes over time.
We need better local support groups and resources for caregivers dealing with loved ones facing substance use disorders and mental health challenges. This includes practical resources and strategies to navigate the healthcare system.
Conclusion: We must advocate for a healthcare system that provides comprehensive support, allowing for early intervention, caregiver involvement, and holistic care. By working together for change, we can ensure that everyone gets the dignity, respect, and appropriate care they deserve.