Joint Committee on the Draft Mental Incapacity Bill Written Evidence

129.Memorandum from the Disability Right Commission (MIB 1057)


1.   Background

  1.1  The Disability Rights Commission (DRC) was created by the Disability Rights Commission Act (DRCA) 1999. Section II of the DRCA imposes the following duties on the Commission:

    —  To work towards the elimination of discrimination against disabled persons;

    —  To promote the equalisation of opportunities for disabled persons;

    —  To take such steps as is considered appropriate with a view to encouraging good practice in the treatment of disabled persons; and

    —  To keep under review the workings of the Disability Discrimination Act (DDA) 1995 and this Act.

  1.2  The Commission has given itself the mission of seeking to achieve a society in which all disabled people can participate as equal citizens.

2.   Scope of the response

  2.1  The DRC's response is concerned with the interests of disabled people who could be subject to the provisions in the Bill including:

    —  Disabled people who may lack capacity to make decisions at some times and/or who may lack capacity to make some decisions, including for example mental health service users and survivors and people with learning difficulties.

    —  Disabled people who may be wrongly judged to lack capacity to make decisions due to others' incorrect perceptions of disability.

    —  Disabled people with different methods of communication who may be wrongly judged to lack capacity to make decisions.

  2.2 The DRC also notes that it is vital that the same principles should underpin the Incapacity Bill and any proposed mental health legislation: in particular, both Bills should ensure that no one who is capable of making a decision about their treatment should be given treatment without their consent.

  2.3 We welcome this opportunity to comment on the Bill and would be pleased to clarify any points contained in this response. However the short timescale allowed for written responses (over the summer period when many people are on holiday) has not allowed us to consult stakeholders in the depth that we should have liked.

  2.4 We have raised concerns about the terms "capacity" and "best interests" and whether these can be defined on the face of the Bill. We will be holding a seminar on 22 October to enable stakeholders to discuss these issues further.

3.   DRC response to the draft Mental Incapacity Bill

3.1  Introduction

  3.1.1  Legislation to clarify who can and who cannot make decisions regarding personal welfare and health decisions (as well as financial ones) for someone who lacks capacity, has been lobbied for over a number of years and is to be welcomed. The Commission believes that there is a need to clarify law to underpin decision-making when someone is temporarily or permanently unable to take a particular decision, and to put in place robust safeguards to maximise autonomy.

  3.1.2  The Commission will however resist any attempt to take away a person's right to make decisions on their own behalf and to give that right to others, where they are able to make those decisions. It will be essential to ensure that disabled people are given maximum support to make decisions themselves.

  3.1.3  The Bill addresses a complex area and needs to provide clarity on decision making for a wide range of people with different types of impairments, in different situations. For example, a person with a learning difficulty who is in hospital receiving intensive care must be given every opportunity to make a fully informed decision about their treatment; someone with a fluctuating mental health problem needs to know they will receive support they have specified in advance, or support specified by a person of their choosing, if they become temporarily incapable of making decisions for themselves.

  3.1.4  The underlying philosophy should be that support for decision-making is available but only at points where it is needed. It should not be forgotten that many people with learning difficulties and mental health problems are leading independent lives today who 20 years ago would have been considered unable to do so. Whether we consider people "capable" depends on the context in which people are living and the attitudes of those around them. It is all too easy for well-meaning professionals to take over decisions, to provide "help" with decision-making when it is not required. When people are "helped" in this way they do not gain the confidence and skills to take decisions themselves—which can confirm the view that they are "incapable". This happened on a large scale through institutionalisation; but can also occur in community settings. The belief that people are "incapable" in effect becomes a self-fulfilling prophecy. The DRC believes that a success measure for the proposed legislation would be delivery of greater (not fewer) opportunities for people with mental impairments to take their own decisions.

  3.1.5  In pursuance of this vision we would want to protect a person's right to make decisions irrespective of whether others might believe them to be "wrong". There should not be an assumption that disabled people need particular protection from risk. They should be expected to take risks in the same way that all citizens do. There should be a level playing field allowing disabled people the same level of freedom to make decisions, with their attendant risks, as other citizens. We would also want disabled people, like their fellow citizens, to have the full protection of the law if they were exposed to unnecessary risk or had been victims of crime.

  3.1.6  The underlying principles as stated in the Bill are therefore welcomed:

    —  Capacity must be assessed against a particular decision at the material time.

    —  A person must be assumed to have capacity unless it is established that he lacks capacity.

    —  A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

    —  A person is not to be treated as incapable of making a decision unless all practicable steps to help him do so have been taken without success.

    —  The need to permit and encourage him to participate, or to improve his ability to take part, as fully as possible in any act done for and any decision affecting him.

3.2  The aim of the draft Bill

  3.2.1  "The Mental Incapacity Bill aims to provide a clear, simple, informal system that will ensure people can maintain a maximum level of autonomy. People would be able to choose someone who can make decisions for them when they cannot do so themselves. And there would be clear rules on how decisions should be taken, making sure that vulnerable people were not left open to abuse." Lord Filkin CBE Parliamentary Under-Secretary at the Department for Constitutional Affairs.

  3.2.2  For many people the Bill will achieve what it sets out to do. This includes, for example, some people with mental health problems who run their own lives successfully when well but when in crisis are sometimes unable to do so; they will be able to nominate someone to make daily decisions about their lives on their behalf.

  3.2.3  However for some disabled people, particularly those with learning difficulties and those in "closed" situations, there is a clear danger that the "general authority" far from enabling choice, control and autonomy, will make it easier to override their wishes.

3.3  The general authority

  3.3.1  The general authority makes it lawful to act for someone who lacks capacity where it is reasonable for the person taking the action to do so and the act is in the person's best interests. No formal powers are necessary. It is envisaged that "Most of the day to day care of adults who lack capacity will take place under the general authority with no need for any formal decision-making authority."

  3.3.2  Historically disabled people have experienced decisions being made for them by others inappropriately (sometimes well-intentioned, sometimes not), and are rightly concerned that the general authority, instead of providing protection from what currently happens (sometimes illegally), will in fact simply legalise such actions.

  3.3.3  While it is recognised that the provisions in the Bill would simplify the job of carers and assist them in dealing with day-to-day healthcare and other problems and also provide safeguards for professionals, such as doctors, nurses and social workers, the rights of the individual must be paramount.

  3.3.4  The general authority, places all responsibility on the carer or professional to judge whether someone lacks capacity to make a decision, and then to decide what is in their best interests. It relies totally on the understanding and goodwill of the carer or professional, sometimes with no independent support for the disabled person. It is therefore open to misuse and abuse, both intentional and unintentional. It offers little protection for the rights of people who may have difficulty making or communicating decisions. In particular the safeguard for the decision-maker that "there is sufficient compliance of acting in the persons best interests if the decision-maker reasonably believes that what he or decides is in the best interests of the person concerned" is extremely weak in protecting the disabled person. The DRC believes that a stronger safeguard is needed in the form of a right to independent advocacy (see below). This would both assist the individual in asserting his or her wishes wherever possible and act as a check on the professional's or carer's judgment where the person could not express any view. Where the advocate and carer/professional could not agree the matter should be referred to the Court.

3.4  Definition of Capacity and best interests

  3.4.1  The Bill lays down some general principles regarding capacity, and some criteria and those people who should be consulted, in deciding best interests.

  3.4.2  The Bill does not address the current lack of a clear legal definition of who does, and who does not, have capacity to make day-to-day decisions. To safeguard disabled people from being wrongly deemed to lack capacity (either in some instances or overall, whether deliberately or unintentionally) what "capacity" means needs to be defined as clearly as possible.

  3.4.3  The Bill includes a list of criteria for use when considering what is in the best interests of the person concerned but there is no clear definition of what "best interests" means or how they are to be decided. Even in cases where the disabled person has a carer who wishes to maximise their decision-making, the terms "best interests" and "capacity" are not sufficiently defined to aid them.

  3.4.4  The lack of clarity surrounding these issues has caused considerable problems for disabled people in access to health services for a number of years up to the present. Do Not Resuscitate (DNR) notices have been posted on disabled people's notes without consultation as the consultant has decided it is in their "best interests".

  3.4.5  What is meant by "capacity" and "best interests" should be addressed on the face of the Bill as far as is practicable, but so as not to restrict flexibility in relation to the range of situations the person might be in; and then reinforced and developed in the codes of practice. This will be crucial in achieving the aims of the Bill.

3.5  Advance Decisions to Refuse Treatment

  3.5.1  Advance decisions to refuse treatment may be used by people who wish to plan for a future loss of capacity and who wish to make clear what treatments they would wish not to receive. An advance decision must be made whilst the person has capacity.

  3.5.2  There are many sound arguments in favour of advance statements. For example Mind has welcomed, "The clear recognition that people will be able to state in advance which treatments they do not wish to have should they lose capacity (eg if someone has experienced bad side-effects from an anti-depressant in the past)."

  3.5.3  However there have also been concerns raised regarding people in "closed" relationships, where the disabled person can be vulnerable to coercion by others who have an interest in the outcome, for example, who would benefit from the death of the disabled person.

  3.5.4 Baroness Findlay of Llanduff quotes an example from her clinical practice.

        "A lady aged 59 was very ill. Her family appeared to be very concerned about her pain and constantly asked for her diamorphine to be increased. However, we remained unconvinced that her pain was really that severe. In fact, the patient declined increasing doses of diamorphine. Her 60th birthday arrived and was passed with minimal celebration, after which the family visited very little. She became depressed and spoke to one of the night nurses, explaining that the problem was that on her 60th birthday, her fixed-term life insurance policy expired. The family would not now inherit what they thought they would if she had died, and if her drugs been duly increased."

  3.5.5 The draft Bill does not contain sufficient safeguards to ensure that disabled people are not coerced into making advance statements.

  3.5.6 If it is possible to legislate sufficient safeguards and Advance Directives are given legal status, then they should include the right to say what positive treatment the disabled person does wish to be taken to sustain their life in the event of accident or illness, for example use of artificial ventilation. This could have a positive effect on safeguarding disabled people's lives. At present the whole debate on advanced directives is biased towards refusal—not acceptance—of treatment. This is an unacceptable bias.

  3.5.7 There is a further risk in advance directives: that someone who has never experienced disability, who has incomplete understanding and who is influenced by negative perceptions of what life with a disability might be like, could decide that—were they to become disabled and incapable of making a decision eg develop dementia or experience brain injury—they would wish to have no treatment. There is a major challenge in ensuring that individuals are provided with substantial, unbiased information before making advance statements concerning conditions that they have not experienced. It is much more difficult for them to know in advance what they might wish than it is, say, for someone with a fluctuating mental health condition who already knows which treatments they do and do not want when their condition recurs.

3.6  Independent advocacy and communication needs

  3.6.1  The draft Bill does not contain sufficient safeguards for some people (especially those in "closed" situations) to ensure that they are able to make decisions for themselves wherever possible, nor does it provide a proper mechanism to support people to make their own decisions or make their wishes known.

  3.6.2  Historically, many disabled people have been excluded from making decisions or have had their wishes overridden. Sometimes this happens inadvertently but, unfortunately, sometimes it is intentional. Other disabled people can be deemed to lack capacity simply because they have difficulty communicating their wishes.

  3.6.3  A particularly important safeguard and support that has not been included in the Bill is the right to independent advocacy. This would: ensure that disabled people are not wrongly deemed to lack capacity, enable disabled people wherever possible to make decisions and be involved in mutual decision-making, ensure their "best interests" are at the heart of decisions when they lack capacity, and ensure they are not open to coercion.

  3.6.4  It is difficult to envisage how the Bill can achieve its aims for all disabled people without a right to advocacy. For example the Bill states that "all practicable steps must be taken to help the person make the decision before they can be regarded as lacking the capacity to make that decision". This is often best achieved through independent advocacy (sometimes simply to aid communication).

  3.6.5  It is essential that disabled people have access to independent advocacy when they need it, to enable them to make choices for themselves. In particular, it is essential at important points of the process eg when making advanced statements, and when the Court is considering whether the person has capacity to make their own decisions, when capacity is being assessed in relation to a major life changing decision, when appointing an attorney to act on their behalf, and when appointing a deputy in the case of disputes.

  3.6.6  Access to independent advocacy is the key safeguard that would strengthen the right of individuals to make decisions for themselves. The General Authority, without a right to advocacy, could leave this right open to threat.

3.7  Consistency with proposed mental health legislation

  3.7.1  The DRC believes it is vital that incapacity law and mental health law should be based on consistent principles. In particular no one who has "capacity" to take decisions about treatment should be given treatment without consent. Please see the attached DRC response to the Draft Mental Health Bill 2002 for a fuller explanation of these arguments and their implications.

3.8  General issues

  3.8.1  The Bill will require sufficient funding to successfully achieve its aims. The DRC will want to see as a prerequisite, a legislated, funded right to appropriate support to enable disabled people to make their own decisions, and protection from having decisions imposed upon them. This will include: access to independent advocacy, effective dissemination of information on the existence of the legislation and its provisions (for disabled people, carers and professionals), and access to communication support. There must be readily available and accessible information for disabled people, on their rights and where to get help.

  3.8.2 The Codes of Practice will be crucial to ensuring that the law protects those it is intended to protect whilst not undermining the autonomy of others. Sufficient time and outreach must be devoted to consultation on the Codes to allow proper consideration of the implications.

  3.8.3 In addition, the working of the legislation will require in-depth monitoring to disclose whether it is effectively enabling the autonomy that has been promised.

September 2003

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