Memorandum submitted by the Mental Health Foundation (MH 14)
Supporting choice and self determination through advance decision making
1.1 Choice and self-determination is a cornerstone of health policy. However, the Mental Health Bill limits choice further than the existing Act, but does not place in statute a right to have a person's wishes formally recognised and recorded. This is inconsistent with other legislation. By enabling and supporting the expression of wishes in the Mental Capacity Act through advance directives, but not placing parallel provision in the Mental Health Bill, this will discriminate unfairly against those detained under mental health legislation. We propose that formal provision for advance decision making, through advance directives and advance statements, is made in the Mental Health Bill.
2. The Mental Health Foundation
2.1 The Mental Health Foundation's mission is to help people survive, recover from and prevent mental health problems. We use innovative research and community projects to address issues of mental wellbeing for the whole population as well as to improve the support, services, rights and social inclusion for people with mental health problems. People who use mental health services are at the heart of all our work - as employees, advisors, volunteers, and supporters. We gather and provide information for anyone who is experiencing mild to severe mental health problems, and people with dementia. We also provide information for their friends, families, carers and providers of mental health services. Our work encompasses children, adults of working age, and older people. The Mental Health Foundation incorporates the Foundation for People with Learning Disabilities.
3. The importance of choice
3.1 A wide range of recent health policy initiatives have aimed to increase the extent to which individuals take responsibility for their own healthcare. Patient involvement in decision-making enhances health outcomes by engaging the patient more effectively in the process of making choices about their own health, and by negotiating health and care which meets their needs. The Mental Health Bill should, as one of its key aims, enhance choices available to people within an appropriate therapeutic framework, provide support to them in expressing wishes, and ensure their wishes, where they have expressed them, are considered when decisions are made about their care. We believe this should be achieved by introducing provisions for advance decision making into the Bill.
4. Advance decision making
4.1 The Mental Health Foundation believes that the right to express wishes in advance, and have these acknowledged, should be on the face of the Bill. The Mental Capacity Act 2005 has extended this right explicitly to those who lack capacity to make decision for themselves, stating that an individual's wishes, expressed through an advance directive, must be respected. However, the current Mental Health Bill allows no way for individuals to express a wish for their care and treatment for mental disorder and have this respected. Including this in the Code of Practice does not place sufficient emphasis on the importance of this issue, will not ensure that it is followed, and is inconsistent with the Mental Capacity Act 2005. We therefore argue that provision for advance decision making should be made through advance directives and advance statements.
4.2. Advance directives and advance statements are documents drawn up by individuals when they are well in order to express their wishes as to their future care and medical treatment, in the event that at some point they may be unable to express those wishes themselves. The term 'advance directive' is most commonly used to refer to the anticipatory refusal of medical treatment. 'Advance statements' are more general expressions of an individual's choices about what they would like to happen in regard to their personal and home life, including their wishes related to their culture and religious beliefs, should they come to lack capacity. They may also include reference to particular treatments that an individual does or does not want and specify whom they wish to act on their behalf when unwell.
5. The importance of advance directives and statements
5.1 Advance directives and advance statements are important mechanisms for safeguarding and promoting a patient's interests and health. They should have a significant place in the care and treatment of people who fall under the Mental Health Act. For example, if a person lacks capacity and is in need of care and treatment, an advance directive would indicate whether the patient had stated that a treatment was to be refused. Advance refusals of treatment should be legally binding unless there are extra reasons why this should be overridden.
5.2 An advance directive is binding under common law. However, an advance directive can be over-ridden if the person is subject to compulsory treatment under the Mental Health Act 1983. We believe that this discriminates against people with mental health problems. This seems particularly anomalous when the Government is allowing advance refusals in the Mental Capacity Act which would allow people to exercise some dignity and control at the end of their lives, yet is not allowing similar dignity or control over treatment for people in non-life threatening situations, by virtue of them having a mental disorder and being detained under mental health legislation.
5.3 Enshrining the right to advance decision making in law is likely to assist a patient's recovery through the knowledge that their health, social and personal affairs are being attended to in a way that they have agreed to beforehand. Service users, who have confidence that their doctors will abide by their wishes when they become unwell, will experience less concern and stress about future relapses.
6. Research evidence
6.1 A number of studies of advance directives have been carried out nationally and internationally. American research indicated that potential benefits of advance decision making include increased empowerment of mental health service users, improved communication between service users, their families, and mental health professionals, and increased understanding of the importance of service users' autonomy in decision making as well as potentially beneficial clinical outcomes (Srebnik & La Fond 1999).
6.2 A more recent review of research in the UK (Papageorgiou et al 2004) found that people with severe and enduring mental health problems who were subject to compulsory treatment were able to draw up realistic and logical advance directives, and did not use them as a means of refusing all possible future treatment ( as some mental health professionals had feared). However, there was no evidence of improved outcomes as a result of advance decision making. A main explanation provided was that mental health professionals failed to place sufficient value on advance directives. This had an impact upon service users' faith in advance decision making, as their experience was that their wishes were disregarded in clinical decision making.
6.3 This was also documented by the Mental Health Foundation in a recent development project on the use of advance directives in Bradford. Specific concerns expressed by service users which acted as barriers to the use of advance directives were:
· The lack of legal status and the resulting lack of impact they would have in practice
· Concern about upsetting staff involved in their care as a result of expressing their views about treatment,
· Feeling of lack of control over care and treatment, resulting in a feeling of disempowerment about their care
6.4 Papageorgiou et al's research concluded that it is necessary for advance directives to be legally binding so that service users are re-assured that their preferences will be acknowledged. The Mental Health Foundation, from experience of working with service users on this issue, endorses this view.
7.1 The Joint Committee on Human Rights, in its report on the 2002 draft Mental Health Bill, recommended that, "the rights of patients to give directions about their future treatment, during periods when they are capable of doing so, should be respected where doing so would not present a threat of death or serious harm to the patient or anyone else."
7.2 The Mental Health Foundation concurs with this view. We believe that an important opportunity has been missed to include, as part of primary legislation, a legal basis for the use of advance directives and statements. The importance of advance directives and statements for patients should not be underestimated: they are a means of giving details of the care and treatment a patient would like to receive should they lose capacity at some time in the future; they allow a patient to specify whom they wish to act on their behalf should they become unwell; they can promote individual autonomy and empowerment; they can enhance communication between patients and those involved in their care; and they can protect individuals from receiving unwanted or possibly harmful treatment.
7.3 The Mental Health Foundation therefore strongly believes that advance decisions should be given formal status by making provision for this on the face of the Mental Health Bill.
Papageorgiou, A., Mohamed, A., King, M., Davidson, O., Dawson, J., (2004) Advance Directives for patients compulsorily admitted to hospital with serious mental disorders: Directive content and feedback from patients and professionals, Journal of Mental Health, 13, 379-388
Srebnik, D., & La Fond, J., (1999) Advance directives for mental health treatment, Psychiatric Services, 50, 919-925