THE Assisted Decision-Making (Capacity) Amend Bill 2022 is making important amendments to our new capacity legislation (the Assisted Decision-Making (Capacity) Act 2015), which is scheduled to be commenced in early 2023. This is an important piece of legislation, which will replace the Lunacy Regulation (Ireland) Act 1871, and may apply to any one of us now or in the future.
The new Assisted Decision-Making (Capacity) Act 2015 provides a range of supported decision-making agreements for anyone who may need support in making decisions for any reason, including a disability, a road traffic accident or a period of mental distress. This legislation may apply to any one of us, either now or in the future.
The legislation also includes important provisions for advance healthcare directives, which will allow all of us to outline our future healthcare treatment preferences and/or to appoint a trusted decision-maker in a legal document. In these circumstances, the advance healthcare directive will help your healthcare provider and people close to you understand your wishes regarding treatment – and to make decisions in accordance with your beliefs and values. This will allow people to be treated in accordance with their wishes and lead to better outcomes for everyone. Advance healthcare directives are an important supported decision-making tool, which allow people to communicate their wishes in relation to their future healthcare treatment to people close to them and to their healthcare providers. This helps build trust in therapeutic and family relationships and provides an alternative to coercion. As one member of our group stated “What doctor would not want to know your healthcare treatment wishes?”
However, the impending legislative provisions on advance healthcare directives excludes people who experience extreme mental distress and are involuntarily detained under s 3 (a) of the Mental Health Act, 2001. People in this group are not being afforded equality before the law on an equal basis with others, even though they clearly need the protection of advance healthcare directives to provide control over their future healthcare treatment and for their recovery. The exclusion of people in this group is clearly discriminatory under the UN Convention on the Rights of Persons with Disabilities and reinforces stigma against people who experience mental distress. The advance healthcare directive exclusion impacts everyone who is admitted to the mental health system due to regrading powers under mental health legislation, where a person can be regraded from voluntary to involuntary and/or the grounds for detention can be changed. Given, that one in four Irish people experience some form of mental distress during their lifetime, this may apply to any one of us.
Similar legislation in the United States was litigated as discriminatory under the Americans with Disabilities Act, 1990 in the case of Hargrave v Vermont in 2003. After filing a legal challenge for differential treatment in the US court of appeal, Nancy Hargrave asserted that
“It seems fundamentally unfair that I choose or refuse chemotherapy which is saving my life, but I don’t have the same right to choose or refuse psychiatric medication.”
The equal inclusion of advance healthcare directives in the Assisted Decision-Making (Capacity) Act 2015 is crucial in promoting respect, reducing stigma and protecting people admitted to the mental health system from human rights violations. According to the research, people who experience extreme distress are 10 times more likely to be victims of violence than perpetrators. We need to challenge assumptions and stereotypes we have about people who experience extreme mental distress and the justification for this exclusion, which is not based on evidence of increased risk. Any other approach will lead to further discrimination and alienation for a group of people who live in fear of being subjected to unwanted treatments with serious long term side effects should they become unwell again in the future. This deters people from seeking help when they need it. The importance of having an advance healthcare directive is summed up in the words of a woman who has been involuntarily detained under mental health legislation in the past.
“I would finally feel safe if my advance directive was legally binding — it is an awful feeling to know your liberty and rights can be taken away from you at any time and that you have no say whatsoever in your treatment.”
The basis for this exclusion in the law is unfounded fear, stigma and discrimination, and it can be no longer justified in legislation that claims to provide equality for everyone. In the words of St Augustine used by Martin Luther King Jr, “An unjust law is no law at all”.