Ending ‘substituted decision making’ in crisis care: lessons from Northern Ireland

In England and Wales, you can be detained in hospital against your will if you are diagnosed with a mental health disorder and it’s deemed that your health would benefit from a stay in hospital. In 2007, the definition of ‘disorder’ in the Mental Health Act was expanded to even include people with learning disabilities, even though learning disabilities are not medically treatable illnesses.

In Northern Ireland, in line with UK-UN agreements, a person’s decisions on care cannot be substituted merely on the basis of any condition that the person has.

Prime Minister Theresa May has appointed psychiatrist Professor Simon Wessely to review the Mental Health Act, though not the Mental Capacity Act. That’s another piece of legislation. However, later this month we may see his team recommend that parliament introduce one new law to replace both. Capacity to make decisions is at the heart of many of the rights-based debates around what mental health care should like in the 21^st Century. 

Colin Caughey, of the Northern Ireland Human Rights Commission, provides an overview of how Belfast approached delivering legislation to support progressive mental health care provision...  

Background

In 2009 the UK signed up to a United Nations agreement that states deprivation of liberty cannot be justified by the existence of long-term physical, mental, intellectual or sensory impairments. Clearly, this challenges the role of ‘sectioning’ in mental health care.

In September last year the United Nations (UN) called on the UK Government and devolved institutions to “abolish all forms of substituted decision-making [through] adopting new legislation and initiating new policies in both mental capacity and mental health laws.”

• See also: In Our Right Mind

England and Wales are currently playing catch up on the other home nations. The Mental Capacity (Northern Ireland) Act 2016 received Royal Ascent – a major milestone in the process towards becoming law – in May of that year.  

The Northern Ireland Model

One law

In Northern Ireland there is now a single legislative framework governing situations where a decision needs to be made in relation to the care, treatment (for a physical or mental illness) or personal welfare of a person aged 16 or over, who lacks capacity to make the decision for themselves. The Mental Capacity (Northern Ireland) Act 2016 is the largest piece of legislation enacted by the NI Assembly and was scrutinised by a joint assembly committee composed of members of the Justice Committee and Health Committee.

Presumption of capacity

The 2016 Act introduces a presumption of capacity in all persons over the age of 16. It continues to make provision for substitute decision making, however an act done or decision made for or on behalf of a person lacking mental capacity must be done or made in their best interests and – innovatively - with special regard to their past and present wishes and feelings. The Act has been described by the Essex Autonomy Project as innovative in its emphasis on supported decision making. Throughout 2017 the Department of Health has been developing a Code of Practice required to ensure the effective implementation of the Act.

• Join Mental Health Today Wales to get up to speed on how new legislation will affect England and Wales.

The Act provides that a person is not to be treated as lacking capacity unless it is established that the person lacks capacity in relation to the matter. The Act makes clear that a determination of capacity is not to be made merely on the basis of any condition that the person has, or any other characteristic of the person, which might lead others to make unjustified assumptions about his or her ability to make a decision. It is hoped that this provision will go some way to addressing paternalistic assumptions regarding person’s with disabilities.

The Act makes clear that a person should not be considered to lack capacity to make a decision unless:

(a) is not able to understand the information relevant to the decision;

(b) is not able to retain that information for the time required to make the decision;

(c) is not able to appreciate the relevance of that information and to use and weigh that information as part of the process of making the decision; or

(d) is not able to communicate his or her decision (whether by talking, using sign language or any other means);

and references to enabling or helping a person to make a decision about a matter are to be read accordingly.

The Act makes clear that a person is not to be treated as unable to make a decision for himself or herself about the matter unless all practicable help and support to enable the person to make a decision about the matter have been given without success. The Act at section 5 sets out the steps that should be taken in providing support to an individual who may have capacity issues.

Duty to support

It is hoped that the presumption of capacity combined with the duty to provide support to individuals who may have capacity issues will address paternalistic approaches to persons with capacity issues. The duty to provide support will be further elaborated by way of the Code of Conduct, which is currently under development. This element of the Act is somewhat unique to NI and there is limited guidance from other jurisdictions as to how an individual can discharge their duty to provide support.

The Act at section 7 sets out the steps an individual must take when assessing an individual’s best interests. The Act makes clear that

The person making the determination [of an individual’s best interests] must not make it merely on the basis of— (a)P’s age or appearance; or (b)any other characteristic of P’s, including any condition that P has, which might lead others to make unjustified assumptions about what might be in P’s best interests.

This provision guards against assessors making determinations solely based on an individual’s condition. An assessor must consider all the relevant circumstances. The assessor must also consider whether the individual will at some time have capacity in relation to the matter in question.

Respecting values and choices

In terms of process, the assessor must ensure the individual participates as fully as possible in the determination of what would be in their best interests and must consult the relevant people about what would be in the individual’s best interests. The assessor also has an overriding obligation to ensure the proposed intervention or decision is proportionate, and must consider if the same purpose can be as effectively achieved in a way that is less restrictive of the individual’s rights and freedom of action.

The Mental Capacity (NI) Act 2016 contains a rather unique obligation for an assessor to have special regard (so far as they are reasonably ascertainable) to —

(a) [an individual’s] past and present wishes and feelings (and, in particular, any relevant written statement made when the individual had capacity);

(b) the beliefs and values that would be likely to influence the individual’s decision if the individual had capacity; and

(c) the other factors that the individual would be likely to consider if able to do so.

The precise implications of the obligation for an assessor to have ‘special regard’ is currently unclear and whilst the Code of Conduct is likely to provide some clarity it is likely that jurisprudence will be required to ensure assessors have a full appreciation for the extent of their duty. However it is hoped that the introduction of this specific duty will go some way to addressing paternalistic approaches to best interest assessments.

• See also: Can I go out for walks? What about my education?Exploring Scottish strides towards securing improved rights in mental health care.

Children’s rights not yet legislated for

During policy discussions regarding the development of the Bill the Department for Health committed to review how the current legal framework, principally the Children (NI) Order 1995, reflects the emerging capacity of children in a health and welfare context. However, during the Second Stage debate on the Bill the Minister for Health stated that there are ‘simply no available resources and arguably no time to undertake such a wide-ranging project at this moment’.

In 2016 the UN raised concern that children under the age of 16 years are excluded from the protection under the Mental Capacity Act (2005) in England and Wales, as well as under the Mental Capacity Act (2016) in NI, including with regard to medical treatment without consent. The UN recommended that the UK review current legislation on mental health to ensure that the best interests and the views of the child are taken duly into account, in particular with regard to hospitalisation and treatment without consent.

The Northern Ireland Commission on Human Rights has highlighted these recommendations to the Department of Health. However due to political disagreement the NI Assembly has not been sitting since January 2017 and political negotiations to restore the institutions have not yet led to a resolution.

• Join the Mental Health Study Day in London to learn about supporting school children's mental health.

The Northern Ireland Commission on Human Rights remains concerned that children under the age of 16 are excluded from the application of the Act. To that end, the Commission continues to call on the Department of Health to conduct a review of current legislation on mental health to ensure that the best interests and the views of the child are taken duly into account, in particular with regard to hospitalisation and treatment without consent.

Cultures changes required to keep up with legal progress

The Northern Ireland Human Rights Commission looks forward to the enactment of the Mental Capacity (NI) Act 2016 and continues to engage with the Department of Health with respect to the Code of Conduct. The experience of reform in other jurisdictions has demonstrated the importance of ensuring changes to legal frameworks are accompanied by cultural changes. There needs to be emphasis placed on the autonomy of disabled people and the societal barriers around supporting disabled people to make decisions for themselves.