» The Government. s Proposals
» Advance Statements
» Other issues raised by respondents to Who Decides?
1. This policy statement sets out the Government. s proposals to reform the law in order to improve and clarify the decision-making process for those who are unable to make decisions for themselves, or who cannot communicate their decisions. The policy statement flows from the Consultation Paper Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults which was published in December 1997 (Cm 3803), and the Law Commission. s 1995 report Mental Incapacity.
2. The Government was delighted with the response received to Who Decides? Respondents included charities working on behalf of people without capacity; local authorities; doctors; professional organisations; and those working with the law. We also received a large number of contributions from members of the public, many of whom had personal experience of caring for a person without capacity.
3. The extent of the response to Who Decides? confirmed that this is an important area of social policy which has a significant effect on the daily lives of many people.
4. The initiatives set out in this policy statement
apply only to England and Wales. In relation to Scotland, the Scottish Executive
published a policy statement Making the Right Moves 
on 23 August 1999. A Bill to implement the proposals in the Scottish
Executive policy statement has already been introduced in the Scottish Parliament
this autumn. The approaches being proposed in the two jurisdictions are
broadly similar, although the existing framework of law is different in
a number of respects, and thus the detailed proposals will also differ in
some ways. Similar reforms are also under consideration for Northern Ireland.
5. Since the consultation on Who Decides? took place, the Government has received a Report from the Committee of Public Accounts on the mental health functions of the Public Trust Office (PTO). The Committee has made a number of recommendations about the work of the PTO. s Mental Health Sector. The response to that Report will be published on 18 November 1999. In addition, the Quinquennial Review of the PTO's status as an Executive Agency is also due to be published in November 1999. This Review involves a fundamental consideration of a range of options for the future delivery of the PTO. s functions, including abolition, contracting-out, and partnerships with public, private and voluntary bodies. In the light of the Review. s recommendations, the Government will consider the appropriate role of the PTO or other bodies in meeting the needs of mentally incapacitated adults and their carers.
6. The policy statement should also be seen against the background of the review of the Mental Health Act 1983 being conducted by the Department of Health. That review is primarily concerned with the care and treatment of those with mental illness. The Government will consider carefully the implications of the review of the Mental Health Act for the proposals set out in this policy statement.
7. As a result of the response to consultation, the Government has decided to take forward a number of the issues raised in Who Decides? The Government. s proposals are set out in bold italics in the following chapters. These proposals would apply to people without capacity aged 16 or over, except where otherwise indicated. Clearly, legislative changes can only been made when Parliamentary time allows.
8. The first part of Who Decides? concentrated on three . key principles. : capacity; best interests; and general authority to act reasonably. These concepts, which are discussed further in Chapter 1, are aimed at giving carers and professionals clear guidelines when day-to-day decisions have to be made about the care and welfare of a person without capacity.
• Capacity
The definition of capacity sets out how to decide whether a person has lost capacity. It deals with both a person. s inability to make a decision, and their inability to communicate any decision made.
• Best Interests
The guidance on assessing a person. s best interests sets out a number of factors that should be taken into account when making a decision on behalf of a person without capacity.
• General Authority to Act Reasonably
The general authority will regulate day to day decisions. It states that anyone who needs to take decisions for a person without capacity must act reasonably in the best interests of that person.
Chapter 2: Continuing Powers of Attorney
9. Who Decides? suggested that the current system of Enduring Powers of Attorney (EPA) should be replaced by a new Continuing Power of Attorney (CPA). There was wide-ranging support in consultation for the creation of CPAs.
Chapter 3: Decision-making by the court and the appointment of managers
10. The court. s powers will include the appointment of a manager where ongoing decisions are necessary, and where a person is incapable of managing his or her own financial affairs, the manager will also be able to deal with personal welfare or healthcare issues.
Chapter 4: Modernising the Judicial Forum
11. Who Decides? set out a framework for a modern Court of Protection replacing the existing Court of Protection. The court would be able to resolve disputes where there were doubts about a person. s capacity. It could also resolve disputes about CPAs, the best interests of a person without capacity or whether a general authority was being used inappropriately.
12. The Government has decided, in the light of
the responses to the consultation, that a number of issues raised in Who
Decides? should not be taken forward at this time. These issues are:
• Advance Statements about Healthcare
• Independent Supervision of Medical and Research Procedures
• Public Law Protection for People at Risk
13. In Who Decides?, the Government sought views on whether there should be legislation on the subject of advance statements about healthcare and, if so, what its objective should be. Advance statements (sometimes known as advance directives or living wills) are anticipatory decisions made while a person is capable, which are intended to give effect to that person. s wishes as to how he or she shall be treated or cared for after the loss of capacity.
14. The responses to consultation showed a wide range of views on this complex and sensitive subject. Some respondents believed that legislation was needed to clarify the law, and that the existing case law was not adequately understood by doctors and lawyers. Some believed that the existing case law provided sufficient guidance, and that the development of the common law would provide greater flexibility than rigid statutory provisions. Others believed that advance statements were morally wrong, and that giving them legislative force would compel doctors to withdraw or withhold treatment that could save the patient's life. Concerns were also expressed that doctors would be prevented from providing the best treatment available or using new treatments that may have developed since the patient had made the advance statement.
15. The Government recognises the strength of feeling on this subject and the fact that widely differing views are held with sincerity and conviction.
16. The Government believes that a clear statement of the present legal position concerning advance statements would be helpful to lawyers, doctors and patients. The current law and medical practice is as follows. It is a general principle of law and medical practice that all adults have the right to consent to or refuse medical treatment. Advance statements are a means for patients to exercise that right by anticipating a time when they may lose the capacity to make or communicate a decision.
17. An advance statement contains a person's instructions as to which medical treatment that person would or would not be prepared to accept if he or she should subsequently lose the capacity to decide for himself or herself. An advance statement can request specific treatments. It is an important principle that health professionals are not legally bound to provide that treatment if it conflicts with their professional judgement about the most appropriate treatment to give to a patient just as they would not be bound to give a treatment requested by a patient with capacity. However, the health professional may take the person's wishes into account when deciding the course of action.
18. Advance statements are sometimes concerned with the refusal of life sustaining procedures in the event of terminal illness. They have nothing to do with euthanasia or suicide. They cannot authorise a doctor to do anything which is illegal or which a person with capacity could not request a doctor to do. Nor can they ask for treatment which is clinically inappropriate. Advance statements are simply a method whereby a person can exercise his or her right to accept or reject medical treatment. The Government wishes to make absolutely clear its complete opposition to euthanasia, which is and will remain illegal.
19. Adults with capacity have the right to refuse or withdraw their consent to medical treatment. We do not accept that the decision has either to be reasonable or has to be justified to anyone apart from the individual who is making the decision. It follows that the Government respects the right of people with capacity to be able to define, in advance, which medical procedures they will and will not consent to at a time when that individual has become incapable of making or communicating that decision. The courts have approved this principle and have determined that certain forms of advance statement already have full effect at common law. The judgments in Re T1, together with those in Airedale NHS Trust v Bland2 in both the Court of Appeal and the House of Lords, indicate that an advance refusal of treatment which is "clearly established" and "applicable in all the circumstances" is as effective as the decision of a capable adult. The case of Re C3 provided further clarification. In that case, the High Court held that a refusal of treatment by a patient who had capacity to make that refusal was binding on his doctors for the present and the future until it was revoked. The Government accepts those decisions.
1 Re T (Adult: Refusal of Treatment) [1992] WLR 782
2 Airedale NHS Trust v Bland [1993] AC 789
3 Re C (Adult Refusal of Treatment) [1994] 1 WLR 290
20. Given the division of opinion which exists on this complex subject and given the flexibility inherent in developing case law, the Government believes that it would not be appropriate to legislate at the present time, and thus fix the statutory position once and for all. The Government is satisfied that the guidance contained in case law, together with the Code of Practice Advance Statements about Medical Treatment published by the British Medical Association, provides sufficient clarity and flexibility to enable the validity and applicability of advance statements to be decided on a case by case basis. However, the Government intends to continue to keep the subject under consideration in the light of future medical and legal developments.
Advocacy
21. Many respondents to Who Decides? raised the issue of the role of advocates in supporting the rights of a person without capacity and assisting them in making decisions. This is an issue the Government intends to consider further and is also something that may be considered in the context of the review of the Mental Health Act.
22. Responses to Who Decides? demonstrated that there was much support for a Code of Practice to provide guidance to carers and professionals. The Government fully recognises the importance of giving as much guidance as possible to those involved in the care of people without capacity. It is therefore anticipated that any future legislation would be accompanied by a Code of Practice, which would be quite separate from the Mental Health Act Code of Practice.