originally posted 3 AUG 2022
Here is an excerpt:
What about the potential drawbacks?
Medical ethicists worry that self-binding directives might allow involuntary treatment to be imposed on someone at an early stage of illness, while they are still capable of making an informed decision about treatment. How can we be sure that someone lacks what is known, in medical law, as ‘decision-making capacity’ and that we should be turning to the instructions in a document rather than what they are saying right now? Human rights advocates, such as the United Nations Committee on the Rights of Persons with Disabilities, go so far as to state that all involuntary treatment is a violation of an individual’s fundamental human rights.
The debate over self-binding directives has been working through these issues since the 1980s. However, one voice that was largely missing was the voice of ‘lived experience’. The arguments have gone backwards and forwards without asking the opinions of those who have the most intimate knowledge of what it is like to be unwell, and the likely consequences of illness; the very people who have found themselves hospitalized for mental illness and who may well have received involuntary treatment.
As part of ongoing research into mental health advance directives, our team at King’s College London conducted an internet survey in partnership with the charity Bipolar UK. We asked people who have lived with bipolar lots of questions about their views and any experiences of any forms of advance decision-making in relation to their condition. One of the questions we asked participants was whether they thought self-binding directives were a good idea and why they thought this. We found that 82 per cent of participants endorsed the self-binding directive idea, with the vast majority explaining this endorsement in terms of experiencing a determinate shift to distorted thinking and decision-making when they are unwell.
While ethicists might feel that the risk that someone retains decision-making ability is a barrier to self-binding directives, many participants were adamant that their decision-making is impaired when they are unwell, and often mentioned ‘capacity’ in their responses, even though it was not alluded to within the questions themselves. A good example was this response:
You are unwell and lack capacity. I [recognise this now] looking back at when I was last sectioned, but my views were very different at the time due to my illness. It is my well views and opinions that should be acted upon.
Some people described this transition in terms of a shift of ‘self’, suggesting that illness makes them an entirely different person from their well self. As a philosopher working on medical ethics and law, I am particularly interested in questions about personal identity and illness, so it was fascinating to see answers such as this:
When psychotic or manic or depressed you can become another person and irrational. It is easy to make bad decisions when ill that may not be in my best interest.
When participants referred to the practical consequences and risks of illness, they were often related to suicide. People talked about how their ill self impelled them towards death in a way that was utterly inconsistent with their wishes when well.