A powerful lived-experience perspective published in the Irish Journal of Psychological Medicine sets out why everyone living with mental health difficulties should be allowed to have a legally binding advance healthcare directive.
Written by long-time campaigner Rosy Wilson, the account challenges mental health services to move beyond compliance and to embrace genuine respect for service users’ autonomy and agency.
Blending personal narrative, advocacy and policy critique, the article contributes a unique lived-experience perspective to debates often dominated by legal or medical voices.
Currently under Irish law, the Assisted Decision-Making (Capacity) Act 2015, anyone can make an Advance Healthcare Directive (AHD) stating what treatments they do or don’t want — including mental-health treatments like medication or ECT.
However, if that same person is later detained involuntarily under the Mental Health Act 2001, their AHD will not have legal force for treatment decisions made while they are detained. This is because when the person is receiving treatment under Part 4 of the Mental Health Act 2001 (the part that allows treatment without consent for involuntary patients) an AHD “shall not be applicable.”
Ms Wilson chronicles how in 2018, after recovering from a very serious breakdown, acute depression with terrifying psychoses, and six months in a hospital psychiatric ward, culminating in twelve sessions of ECT under anaesthetic for which she was made an involuntary patient as I did not consent, she redoubled her efforts to campaign on this issue.
Campaigning on this issue is based on the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which states that no one should be detained or treated against their will in any kind of mental health facility, and World Health Organisation guidelines which espouse moving away from coercion towards a more human rights based approach.
AHDs align with Ireland’s obligations under the UNCRPD by respecting people’s will and preferences, rather than making decisions based on perceived “best interests.”
As noted in the article, research shows that cooperation, mutual respect and belief in recovery shared between staff and users of a mental health service result in more positive outcomes. Currently a high percentage of admissions to psychiatric facilities are re-admissions. Coercion by, for example, chemical and physical restraints or ECT, without consent may have immediate results but, because underlying causes remain, these may be temporary and have side effects, loss of memory, of autonomy, of confidence.
As Ms Wilson highlights, creating an AHD allows people to articulate their treatment wishes when they are well, ensuring their voice is respected if they later lose decision-making capacity.
However, Ms Wilson notes confusion and resistance within health services — many clinicians have never seen an AHD, and some are unclear about their legal status.
Despite legislative progress, practical awareness, training and uptake remain limited; the gap between rights on paper and rights in practice persists.
“All this campaigning and activism is exhausting,” Ms Wilson says. “It necessitates revisiting very painful episodes and exposing our mental health issues which still carry stigma both within the medical profession and the wider society. It is time consuming and nearly always unpaid. We do it because we know from our experience how terrifying both our episodes and current treatments are and believe a human rights centred mental health service is kinder, more effective and beneficial to all concerned, to patients, their families and the nurses and doctors treating us.”