Legislation and Clinical Practice In Intellectual Disability
In almost all situations a competent adult's decision must be respected, and where a person lacks the capacity to make the necessary decisions it would not be unlawful to act, providing it is in his/her best interests. The exception is the treatment of a person's mental disorder.
Tony Holland (UK)
In democratic countries adults have the right to make for themselves those decisions relevant to their own lives. Such decisions include where to live, how to spend one's own money, or whether or not to accept medical treatment. This principle of self-determination has become well established through the development of case law - the most recent case being that of Ms B who, being completely paralysed, decided for herself that she did not wish for further medical treatment in the form of artificial ventilation. Thus, it is for adults to make such personal decisions for themselves, on the basis of the necessary information and free from duress. In the case of healthcare decisions it is the person's consent that makes lawful an act that would otherwise be an offence, such as taking blood or undertaking a physical examination.
However, if this right to self-determination was followed to the extreme it would be unlawful to undertake investigations or to institute treatment for an unconscious adult, or an adult with a severe mental disability who was unable to arrive at or communicate his/her decision. This is clearly unacceptable. At present case law provides the guidance in such situations, and it is established that the necessary action can and should be taken, provided it is in the person's best interests and it is the least invasive option. The pivotal issue that is central to this potential tension between a person's right to self-determination, on the one hand, and the need to treat and/or protect those who may in some way be vulnerable, on the other, is the concept of decision-making capacity. Thus, in almost all situations a competent adult's decision must be respected, and where a person lacks the capacity to make the necessary decisions it would not be unlawful to act, providing it is in his/her best interests. The exception is the treatment of a person's mental disorder under the English and Welsh Mental Health Act (1983). In this situation whether a person has capacity or not, for most of the Act, does not have to be considered. This is a situation to be regretted as it essentially says that respect for self-determination for the capable person requiring treatment for a mental disorder, is irrelevant.
Two legislative processes that are intimately linked are being undertaken for England and Wales at present. One is the revision of the Mental Health Act (Mental Health Bill), under the auspices of the Department of Health and Home Office, and the other is the Mental Incapacity Bill, under the auspices of the Department of Constitutional Affairs. These two Bills overlap considerably in their roles and it has been proposed that only one such Bill is needed - the Mental Incapacity Bill (Zigmond and Holland, 2000). The two key issues are first, the need for a formal framework for substitute decision-making for use under certain circumstances and, secondly, a means of appeal where there is either dispute about a person's capacity or, if he/she lacks capacity, disagreement about what is in his/her best interests. This latter issue was well illustrated in the case of L vs Bournewood NHS Trust (Livingston et al, 1998). With respect to the Mental Health Bill, the Government has not accepted the advice of its expert review committee chaired by Professor Genevra Richardson, and has rejected the central principle of self-determination. For this and many other reasons, these proposals have been almost universally criticised by organisations as diverse as MIND and the Royal College of Psychiatrists.
Although, regrettably, decision-making capacity is unlikely to have been considered when it comes to the new Mental Health Act, it will for the proposed Mental Incapacity Act. Case law has clearly established that a person's decision-making capacity is not fixed, but dependent on his/her ability at the time, and on the complexity of the decision is question. Furthermore, capacity may fluctuate depending on a person's mental state and may be improved by the use of other means of communication (e.g., sign, etc.). It is not sufficient that someone has a mental disorder; it has to be demonstrated functionally that he/she lacks capacity (see Wong et al, 1999).
The legal definition given in the Mental Incapacity Bill includes:
- Understanding and retaining relevant information
- Using the information as part of the process of making a decision
- Communicating the decision
The clinical issue is therefore the translation for decision-making capacity into clinical practice. The process of assessment requires that the above abilities are determined, in the context of what need to be known, in order to make this particular decision. This includes the nature of the decision, why the decision has to be made (purpose), and the outcome of deciding one way or other. Research has shown that, provided a structured interview is used, the assessment of capacity is reliable and that capacity is not necessarily fixed.
For example, pictures can enable a person to understand something he/she may not have been able to previously understand, thus making them capable of making the decision in question (Wong et al, 2000).
This is crucially important as it is enabling rather than restricting, and shows respect for autonomy when appropriate.
Livingston, G., Hollins S., Katona, C. et al. (1998) Treatment of patients who lack capacity: implications of the Bournewood Community Trust ruling. Psychological Bulletin, 22(7): 402-404.
Wong, J.G., Clare, I.C.H., Gunn, M.J. and Holland, A.J. (1999) Capacity to make healthcare decisions: Its importance in clinical practice. Psychological Medicine, 29(2): 437-446.
Wong, J.G., Clare, I.C.H., Holland, A.J., Watson, P.C., and Gunn, M.J. (2000) The capacity of people with a 'mental disability' to make a particular healthcare decision. Psychological Medicine, 30: 295-306.
Zigmond, A. and Holland, A. (2000) Unethical mental Health Law; History repeats itself. Journal of Mental Health Law, February, 49-56.
This article was first published in MuLDReN (Multidisciplinary Disability Research Network) BRENT RESEARCH INTO INTELLECTUAL DISABILITY GROUP (BRIDGE) Volume 4, Issue 4, July 2003