Engage: Mental health disabilities and ‘will and preferences’
The hugely important UN Convention on the Rights of Persons with Disabilities aims to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’. Among its principles are respect for ‘individual autonomy including the freedom to make one’s own choices’.
The reason for this blog is to stimulate some discussion concerning an area of the Convention that is especially important in mental health care, but also arises in other health care settings. Can medical interventions against a person’s wishes be justified?
Consider this situation:
Anne is 23 years old and a talented student at a prestigious school of drama. She has a diagnosis of a bipolar illness (‘manic-depressive’ illness). Her mother committed suicide during a depressive episode when Anne was 14, and she has other relatives with the same condition. She lives with her father, a retired dentist.
Anne’s education has been badly affected by her illness, and she is determined to finish her drama course. Following recovery after a second involuntary admission to a psychiatric hospital she composed an advance statement based on her previous experiences of manic episodes (‘highs’): ‘If I am unable to sleep for more that three hours on two consecutive nights; or, if I go wandering in the centre of town after midnight; or, if I say I am a resurrection of Sarah Bernhardt, then I need to be treated – against my will, if that becomes necessary. If I refuse, I accept that I should be admitted on a compulsory order.’
Unfortunately Anne relapsed six months later. Unable to sleep, flimsily dressed, she went out wandering around 2 a.m. and was picked up by the police four hours later. She said she was a great actress. She refused any treatment intervention.
Anne has a disability under the terms of the Convention:
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
Convention rights thus apply.
In most countries – England and Wales is an example – if Anne, having now relapsed, meets certain criteria spelt out in mental health law, she could be admitted to hospital and treated as an involuntary patient. These criteria are generally that 1. she has a ‘mental disorder’; and 2. she presents a risk of harm to herself or others.
It is clear, however, from an interpretation of the UN Committee on the Rights of Persons with Disabilities, charged with issuing authoritative interpretations of key articles in the Convention, that such legislation is in breach of the Convention (General Comment on Article 12: Equal recognition before the law, 2014) [1].
The Committee insists the Convention requires that we must respect the ‘rights, will and preferences’ of persons with disabilities. Interventions should never amount to ‘substitute decision-making’ (in essence, someone not appointed by the person making making a decision on their behalf, according to what is believed to be in the person’s ‘best interests’ as opposed to the person’s own will and preferences). The Committee takes the view that with the right level of support people with disabilities are able to express their ‘will and preferences’.
The Committee rejects impaired ‘mental capacity’ as a basis for substitute decision-making. Under the Convention, signatory states are obliged to modify or abolish existing discriminatory laws, regulations and practices, as well as to provide programmes to support Convention rights. These would include programmes offering support for people with disabilities who at some time may experience difficulties in expressing their will and preferences.
The question I wish to raise is what ‘will and preferences’ should be taken to mean. The terms are not defined in the Convention nor by the Committee. I am not clear what ‘will and preferences’ might mean in certain problematic situations. Especially difficult are those where a person’s ‘will and preferences’ appear to have changed quite radically. The case of Anne is an example. Which ‘will and preferences’ should we respect? Should it be those stated in her advance statement or those that she is now expressing? Is one more ‘authentic’ than the other? If so, which one?
I would say that Anne’s ‘will and preferences’ expressed in her advance statement is the more ‘authentic’. It was made at a time when she was able to calmly reflect on what was especially important for her.
If that is accepted, would we also have to accept that if Anne had not made a written advance statement, but had verbally expressed the same preferences to her father and close friends, we would draw the same conclusion about which preference should be respected? What if Anne had not previously verbalised a clear treatment preference, as such, but that it was clear to those who knew her well, that completing her acting course was an immensely important goal for her? Would this need to be weighed up in deciding what we should take to be Anne’s real or authentic ‘will and preferences’?
[1] https://documents-dds-ny.un.org/doc/UNDOC/GEN/G14/031/20/PDF/G1403120.pdf?OpenElement).
About the Author
Professor George Szmukler is Professor of Psychiatry and Society in the Institute of Psychiatry, King’s College London. Professor Szmukler is an Associate Director of the NIHR Mental Health Research Network, with lead responsibility for Patient and Public Involvement (PPI). A major aim is to increase the involvement in mental health research of service users and carers as partners in the conduct of research, as well as to engage the interest and support of the general public.
Professor Szmukler was writing on the Disability Rights blog which you can follow here: https://disabilityrightsuk.blogspot.co.uk/
Picture (c) Dominic Lipinski / PA Wire.
