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LEGISLATION & CLINICAL PRACTICE IN INTELLECTUAL
DISABILITY
Tony Holland
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.
References
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
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