"Advance decision making" refers to people planning for a future when they may become unwell. The opportunity to decide on future treatment options, in advance of becoming too unwell to decide for themselves, offers a number of benefits, in particular ensuring that people living with long-term illnesses have more autonomy over their care.
Yet, at present, people living with mental illness in England and Wales have little reassurance that the decisions they make about future treatments will be respected by healthcare professionals. This includes decisions made during times when they’re well, which are supported by professionals and family. This contrasts sharply to those making advance decisions about treatment for physical health problems as the Mental Capacity Act 2005 ensures all valid and applicable advance decisions to refuse medical treatments are respected and preferences are acknowledged.
This inequality was highlighted and addressed by the Independent Review of the Mental Health Act, which recommended statutory provision for mental health advance decision making in the form of "Advance Choice Documents" (ACDs). This recommendation has been accepted by government. Plans for ACDs were drawn from a report submitted by the Mental Health and Justice Project, working in collaboration with the Policy Institute. This report, summarised in this policy briefing, argues that legal reform should enable a culture shift towards mental health advance decision making which is collaborative, encourages treatment requests as well as appropriate treatment refusal and respects service user expertise borne of lived experience.
What might this mean for people living with severe mental illnesses such as Bipolar and Psychosis? These illnesses often have a course involving fluctuating capacity to decide on mental healthcare, someone might experience multiple severe episodes of illness during their lifetime with periods of marked wellness in between.
Current plans for legal provision for ACDs could mean that during a period of wellness someone could reflect on a previous episode of loss of mental capacity and the treatment they received. They could use their knowledge of what was helpful/not helpful to make advance decisions to refuse particular treatments which healthcare staff would legally have to respect (except in particular circumstances). They could also request particular treatments which staff would not be legally obliged to provide for but would be obliged to take into consideration. This is similar to how the law for advance decision making in physical health works but in physical health care fluctuating mental capacity across a life is less common
So, there is an ethical case for introducing ACDs given they would help to reduce one inequality between physical and mental healthcare. There is also the evidence base to consider. Research shows that people living with severe mental illnesses are in favour of having more access to advance decision making tools, that they are considered clinically feasible by clinicians and they have the potential to reduce compulsory admissions to psychiatric hospitals. Despite this, uptake of various types of advance decision making tools has been low, possibly due to the level of clinical buy in and lack of stakeholder awareness. As one service user put it in a survey, we conducted on advance decision making "why have I not been told about this?".
Are there potential problems with ACDs? The main concerns are that they will add to workload, that it is too complicated to introduce legislation and public interest issues.
The workload concern will require some investment in training, service provision and evaluation. The extra complexity can be managed with clear statutory rules, codes of practice and guidelines. The plans for ACDs tackle public interest concerns by putting in place safeguards around how they could be used and circumstances in which they could be overridden. For example, to prevent serious harm, death or violence.
The Mental Health and Justice Project has carried out research with key stakeholders who would be involved in creating and using ACDs. As a result, it has produced a high quality ACD template which is to be evaluated at the South London and Maudsley NHS Foundation Trust in a clinical study.
Further work will be needed by the Department of Health and Social Care linking with service user led charities, professional bodies and NHS England to provide training and education on ACDs, management of ACD introduction into clinical services nationally and the creation of a specialist body to provide continuing oversight. The Mental Health and Justice Project and the Policy Institute has organised a Westminster evidence session with policy makers to further this important work.
Implementing statutory advance decision making tools in mental health context is a relatively straightforward intervention. But most importantly it offers huge potential to address human rights concerns and inequalities experienced by those with severe mental illness, as well as improving their mental health. To echo the sentiment expressed by our service user participant quoted above, we need to ask ourselves: why have we not done this already?
Read the policy briefing on advance decision making
Read the Future of the Mental Health Act report
Dr Lucy Stephenson is a Clinical Research Associate with the Mental Health and Justice Project doing a PhD on advance decision making in mental health. She is a specialist trainee in Medical Psychotherapy and General Adult Psychiatry at South London and Maudsley NHS Foundation Trust.