Living Independently

Consent

Consent and decision making

It is a complex task to judge the ability of a person with learning disabilities to make decisions. In order for an individual to make a decision, they must be able to comprehend and retain relevant information and material, especially the consequences of making (or not making) the decision.

Giving consent for medical treatment requires the individual to gather information on the benefits and risks of the treatment, what it involves, alternatives to the treatment and consequences of not having the treatment.

Questions about an individual considered to be mentally incapable and their legal ability to consent can be complex. A number of various physical or medical factors can cause mental incapacity, e.g. head injury, cerebral haemorrhage (stroke), psychiatric disorder, learning disability and dementia.
This section concentrates on the issues from a learning disability perspective. It is not meant to be definitive, as the question around such issues appears to be constantly evolving with new legislation for use in England not far away (The Mental Capacity Bill).

More up to date guidance is already in place in Scotland where the Scottish Executive introduced the Adults with Incapacity (Scotland) Act 2000. This Act is referred to separately in the latter part of this section.

Choice, capacity and rights

Consent and decision making are intrinsically tied up with the concept of choice and personal rights. Making choices for most people is a natural part of everyday life. It is also a fundamental part of being recognised as an individual and being respected as a person. Whether these choices are minor or major, they all contribute to having control over our lives.

The definition of a 'choice' and a 'decision' depends on the importance of the options. Making a 'choice' generally describes a situation where the options may not be too important or consequential. A 'decision' describes a more fundamental form of choice that can have a greater impact on a person's life. Whilst 'choice' has figured in the lives of many people with learning disabilities, wider and more major 'decision' making has not featured as frequently for most.

For a 'decision' to be made, the individual must have the necessary capacity to be able to do so.

'Capacity' is a legal concept and is considered as the ability to:
- comprehend and retain information and material relating to a decision, especially as to the consequences of making (or not making) the decision
- use and weigh this information in the decision making process

The Department of Constitutional Affairs has produced a series of six booklets aimed at different groups - including legal professionals, health workers and families - entitled, 'Making Decisons: Helping People who have Difficulty Deciding for Themselves'. The nature of decision making and what constitutes personal capacity is discussed within these.

The British Institute of Learning Disability (BILD), in its submission in 2004 to the government regarding the proposed Mental Incapacity Bill (later changed to The Mental Capacity Bill), said it did not believe that the concept of 'capacity' was the right one to serve the interests of people with learning disability. BILD favours a 'functional approach' to decision making. A functional approach would recognise that everyone (whether or not they have a learning disability) seeks information and advice from others before making an important decision. In general, the more important the decision, the more extensive and formal the process of seeking information and advice. People with a learning disability need more help than others. The greater the severity of the learning disability, the more help someone would need. The concept of 'incapacity' as an arbitrary cut-off point is also likely to reduce participation in decision making for those who are most disabled and not considered to have capacity.

Currently, the law sees doctors as the most appropriate group able to offer an opinion on a person's capacity. However, in the field of learning disabilities, psychologists also have a role to play, especially as they are seen to be the only profession trained to measure a person's intelligence level.

An adult with a learning disability has the same rights and freedoms as any other person, with a few exceptions (more later). Relatives do not have any legal right to make decisions on their behalf. The concept of 'guardian' can be informally used when referring to parents or carers, but only carries any legal meaning regarding adults (in England and Wales) when used under the 1983 Mental Health Act. In reality, the strict provisions required for a Guardianship Order under this Act means it is only used for a few people with learning disabilities and then it usually relates to a behavioural issue rather than a consent issue.
(There is a Guardianship Order of a different nature found in Scotland which is created under the 'Adults with Incapacity Act (Scotland) 2000' - see later)

The exceptions where the law (in England and Wales) allows another person to make a decision on behalf of a person with a learning disability are:
- Financial affairs. An 'appointee' can be nominated by the Department of Work and Pensions to manage a person's benefits and financial affairs. A 'receiver' can also be appointed by the Court of Protection in some cases to manage larger assets and finances
- Medical treatment. A healthcare professional can give medical treatment to an adult with a learning disability who is unable to consent, if the treatment is judged to be in the best interests of that person.

Medical treatment and 'best interests'

The matter of 'consent to treatment' can be potentially fraught but there are guidelines to assist healthcare practitioners. 'Seeking Consent - Working with People with Learning Disabilities' is a Department of Health document published in November 2001 which focuses on the particular issues arising when seeking consent from adults with learning disabilities. (There is a separate booklet for those working with children.) It states that for a person's consent to be valid, the person must be:
- Capable and competent of taking that particular decision (i.e. have the capacity)
- Acting voluntarily and not under pressure or duress from anyone else
- Provided with enough information to enable them to make the decision
The way people are presented with information will be crucial as to whether they are likely to understand it. The 'capacity' of an individual will appear to vary, depending on how accessible the information is to them.

It is essential that information is provided in a form that the person with the learning disability can understand. This may involve using pictures, explaining what is involved in simple terms using short sentences and repeating or rewording explanations. Communication aids such as boards where people can indicate 'yes' or 'no' may also be helpful. For example, St George's Hospital Medical School has published a booklet, ' Going into hospital', which uses pictures to explain about hospitals.

People need enough information before they can decide whether to consent or refuse a treatment. They need information regarding:
- The benefits and the risks of proposed treatment
- What the treatment will involve
- The implications of not having the treatment
- What alternatives may be available
- The practical effects on their lives of having, or not having, the treatment

An assessment about a person's level of 'capacity' in understanding the information avaliable, includes:-
- Exploring their ability to paraphrase what has been said (repeating and rewording explanations as necessary)
- Exploring whether they are able to compare alternatives, or to express any thoughts on possible consequences
- Exploring whether they feel the information applies to their own case

Where any doubt exists, the guidelines suggest an appropriate assessment should be made of the capacity of the person to make the decision in question. The assistance of specialists such as staff from learning disability teams and speech and language therapists could be sought as necessary.
Previously we have said relatives do not have the legal right to make decisions on behalf of adults for whom they may be caring. However, generally the law will allow another person to undertake day to day actions on behalf of someone who lacks capacity. This is referred to as the 'doctrine of necessity'. In all cases, the person carrying out these actions should act in the 'best interests' of the person who lacks capacity.

'Best interests' means that the person's known wishes, beliefs and general well-being are being taken into account. In a medical context, 'best interests' has been further defined by the High Court as not only considering 'medical best interests' but also taking into account: 'the patient's values and preferences when competent, their well-being and quality of life, relationships with family or others, carers, spiritual and religious welfare and their own financial interests' (Re S (Sterilisation: Patients best interests) 2000 2 FLR389).

Good practice also suggests that any medical practitioner would consult those who are close to the person (patient) regarding treatment courses, especially if there was an issue regarding consent or capacity, and a decision was being contemplated to be undertaken 'in the person's best interests'.

Adults with Incapacity Act (Scotland) 2000

This Act, implemented in stages, made changes to the law relating to people who may be legally appointed to act for an adult who is 'incapable' of making decisions for themselves.

The definition of the term 'incapable' is given as 'a person who is not able to make, communicate, understand, or retain memory of decisions'. This can be due to mental disorder or physical disability affecting communication skills.

The general principles of the Act are stated as:
- Benefit
Any person intervening in the life of the adult who is considered incapable under the Act must be satisfied that there will be benefit to the person and that such benefit cannot be achieved without the intervention.
- Minimum intervention
The intervention must be the least restrictive option in relation to the freedom of the individual concerned.
- Take account of the wishes of the adult
The views of the person must be sought by any means possible.
- Consultation with relevant others
The views of the nearest relative, the primary carer, any person already appointed to act for the adult and any other person who appears to be relevant must be sought.
- Encourage the adult to exercise whatever skills they have
The adult must be encouraged to exercise whatever skills he or she has concerning property, financial affairs or personal welfare and to also develop new skills.

The Adults with Incapacity Act covers many areas. The following are of particular relevance to learning disabilities:
-Guardianship and Intervention Orders
Guardianship under the Adults with Incapacity Act is intended to help an adult who needs long-term involvement from someone else to make decisions involving their financial or welfare matters, or both.
Under this Act, anyone with an interest in the welfare, property or financial affairs of an adult with incapacity can apply to the Sheriff Court to become the adult's guardian. Two medical reports are required and an additional report from the Chief Social Work Officer (or Mental Health Officer) is required for Welfare Guardianship. A Guardian is usually appointed for three years.

An Intervention Order is intended for a situation where a one-off decision or a specific action is needed and the subject is unable to do it for themselves. Intervention orders are attained by application to the local Sheriff.

Medical consent

The Act allows treatment to be given to benefit the physical or mental health of an adult who is unable to consent. Under this Act, doctors have to certify incapacity and the type of treatment required on a prescribed form in order to use this authority. Special provisions apply where others such - as attorneys - have been appointed with powers relating to medical treatment under the Act.

Where there is disagreement, a second medical opinion can be sought. Cases can also be referred to the Court of Session in certain circumstances. The Act also permits research involving an adult incapable of giving consent, but only under strict guidelines.

Sources for further information:

- Department of Constitutional Affairs
Selbourne House
Victoria Street
LONDON SW1 6QW
0200 7210 8614
www.dca.gov.uk

- Department of Health Publications
PO Box 777
LONDON SE1 6XH
08701 555 455
Fax: 01623 724524
E-mail doh@prolog.uk.com
www.doh.gov.uk

- The Public Guardianship Office
Archway Tower
2 Junction Road
LONDON N19 5SZ
EPA Help Line 020 7664 7327
www.guardianship.gov.uk

- Scottish Executive
Justice Department
Civil Law Division
St Andrews House
Regent Road
EDINBURGH EH1 3DG
0131 244 4212
www.scotland.gov.uk/justice

- The Office of the Public Guardian
Hadrian House
Callender Business Park
FALKIRK FK1 1XR
01324 678300