Being able to make decisions about one’s life – including the right to choose one’s own mental.
Health care – is key to a person’s autonomy and personhood.
The United Nation’s Convention on the Rights of Persons with Disabilities (CRPD) commits countries to recognizing that people with mental health conditions enjoy legal capacity on an equal basis with everyone else. And yet involuntary hospital admissions, and care against the wishes of someone experiencing a mental health condition, are routinely and widely practiced across the world. This coercion is facilitated by laws and practices that give guardians of people with mental health conditions extensive substitute decision-making powers.
Voices of experience
Through substitute decision-making, people experiencing mental health conditions lose their rights to informed consent, confidentiality, privacy and communication with family members. Frequently, people end up in institutions and exposed to seclusion or restraint.
People subjected to care without their agreement report feeling dehumanized, often with long-term effects on their mental well-being. Coercive practices undermine people’s confidence and trust in mental health services and can stop people from seeking help when they need it.
Involuntary treatment can also amplify existing conditions. Alexandra M Schuster from the United Kingdom was diagnosed with a mental illness when she was seven. “Throughout my childhood and adolescence, I had no say in my own recovery: my own ideas of what would work well for me were often dismissed,” says Alexandra. “This lack of autonomy eroded my already-low self-esteem and worsened my mental illness.”
By the age of nineteen, Alexandra says she was a shell of an individual. “Years of being forced into specific care pathways and bubble-wrapped by caring adults had shattered my confidence. I barely believed I was capable of making basic decisions, let alone helping myself.”
Positive partnerships for care
Respecting people’s autonomy can be challenging but it good practices around the world show that is it possible, especially by involving people in their own health care planning, assessment and management, for example through shared decision-making, advanced planning, supported self-management and person-centred recovery approaches to care.
Empowering people to have control over their life and mental health care instils personal dignity, value and respect. It can increase self-esteem and confidence. It also gives people a level of choice and autonomy they may not have received otherwise.
“Receiving autonomy over my mental health care was the greatest contributor to my recovery,” says Alexandra. “My current therapist sees me as a person rather than a mental illness. [When I first met her], she asked me about interests, wanted to know my work style, and was eager to work together to construct a pathway to mental well-being.”
Meaningful engagement of people with lived experience builds trust and understanding among those providing and receiving care. The potential result is better therapeutic relationships and more equal and effective partnerships of care. Individuals and health care providers can work together to map out the options for care and select those that are most appropriate and acceptable.
“We started small,” remembers Alexandra, “but with [my therapist’s] guidance, I gradually gained the confidence to make complex decisions about my health and well-being. Her willingness to collaborate with me, create care plans that suited me as an individual, while still giving me the space to make autonomous decisions, helped me build the confidence to thrive not only mentally, but in all other areas of my life. To this day, I attribute my recovery to her collaborative nature.”
Moving from care that ignores people’s perspectives, priorities and human rights towards person-centred, human rights-based and recovery-oriented care that engages people as active participants in, rather than passive recipients of, care is one of the twelve key shifts needed to transform mental health for all.
