“She was oversleeping, disheveled, not eating, not caring for self!”
This short scrawl from a psychiatrist was all it took to send Yulia Mikhailova’s daughter into involuntary hospitalization.
A college professor herself, Mikhailova knew to check for signs of her college-aged daughter’s well-being from afar: Her professors say she attended class on time, and her meal plan receipts reported regular meals. Yet, when her daughter experienced a psychological crisis, a friend called a crisis hotline. She was not considered a danger to herself or others; nonetheless, police entered her room when she was asleep and took her to the hospital.
Mikhailova claimed her daughter’s condition worsened significantly during hospitalization, yet she was not allowed to switch doctors or seek a second opinion. Mikhailova’s fierce battle was what ultimately led to her hospital release. Even then, her prescribed medications did not appear beneficial, and their many side effects, never mentioned by her doctor, included constant fatigue and extreme weight gain.
Her mental health decline was reversed by a clinical psychologist trained in Open Dialogue. Mikhailova reports that she has now graduated from college, entered the workforce, and is thriving medication-free. Her case is not unique.
Psychiatric patients are sometimes denied informed consent, the legal right of all patients to be informed of their condition, all treatment options, and their potential side effects. Kathy Flaherty, the Executive Director of the Connecticut Legal Rights Project (CLRP), argues that psychiatric patients face a conundrum: if they disagree with a psychiatrist’s suggestions, they may be considered to lack capacity. “That’s profoundly disrespectful to patients and their autonomy and humanity,” adds Flaherty.
While many organizations push for more access to mental healthcare and medications, there is an alarming inconsistency regarding regulations for involuntary hospitalization and informed consent for psychiatric patients. A 2020 study analyzing data from 25 states spanning from 2011 to 2018 investigation shows that involuntary hospitalizations are steadily increasing without updated legal protection. Protection of informed consent for psychiatric patients varies across states: In Connecticut, where CLRP is based, the head of a hospital with two physicians can deem a psychiatric patient incapable of giving informed consent; alternatively, in another state such as Michigan, one physician or licensed psychologist alone can petition a court to detain someone for 24 hours for observation.
As someone who has experienced psychosis, Claire Bien believes it is imperative to create safe spaces where patients can feel comfortable sharing what they really think and feel, and thereby actively participate in decision-making. This can be best achieved by centering patients as integral members of a treatment team including psychiatrists, prescribers, and diagnosticians. Bien is currently a Research Associate at the Yale University Program for Recovery and Community Health, and the President of the U.S. chapter of the International Society for Psychological and Social Approaches to Psychosis (ISPS-US).
Dedicated to promoting psychological and social approaches to psychosis, ISPS-US provides education, training, and opportunities for dialogue between service providers, people with lived experience, family members, advocates, and researchers. One approach, Open Dialogue, which helped Mikhailova’s daughter, emphasizes listening and engaging the patient’s entire social network in dialogue with a team of professionals, and increasingly, peer professionals, trained professionals who also bring their lived experiences to the table. Soteria houses surround patients with a supportive community within an unrestrained rehabilitation space. ISPS-US endorses the lowest possible medication dosages for the shortest time and is firmly opposed to involuntary hospitalization.
Following their ordeal, Mikhailova has continued to advocate for a better mental healthcare system, serving as the chair of the ISPS-US Advocacy Committee, and the chair of the faculty Mental Health and Wellness Committee at New Mexico Institute of Mining and Technology, where she still teaches.
“People are convinced that mental illness makes people destructive. Which, long story short, is not true. But this is very entrenched.”
She believes crucial reforms need to occur. First, public discourse needs to be changed. “People are convinced that mental illness makes people dangerous. Which, long story short, is not true. But this is very entrenched. Connected with this widespread idea is the enforcement of the taboo of discussion of any mental health treatments, that it is irresponsible to talk about any problems in the side effects of medications… because this will deter people from seeking help,” she says.
The major discrepancies in existing legal frameworks across states also allow for inconsistencies in the protection of psychiatric patients. Mikhailova says we need to restructure our mental health system to follow the WHO Quality Rights Initiative, which recommends supported decision-making rather than stripping individuals of their ability to choose their treatment plan. Individuals are instead provided with support options, such as family, peers, and lawyers, to help with decision-making.
“The issue of informed consent, and its inconsistency, would not be so great if there were a greater understanding of the need for asking about what happened, establishing a sense of safety and trust, and taking the time to hear what’s going on.”
“The issue of informed consent, and its inconsistency, would not be so great if there were a greater understanding of the need for asking about what happened, establishing a sense of safety and trust, and taking the time to hear what’s going on. And if there were not so much misinformation, fear, stigma, all things we’re trying to address,” Bien says.
This story is published in partnership with the National Association of Science Writers David Perlman Virtual Mentoring Program.
