What Others say About the Bill
Church of England
Church of England Letter published in the Times 14 December
Loss of capacity to make our own decisions is amongst the worst fates that can befall us and key issues for people in this position arise in the Mental Capacity Bill, with its Third Reading today. The Church of England welcomes the Bill's attempt to provide a consistent framework of decision-making for those without capacity. The Bill maximises the possibility of them making decisions for themselves, and enacts the overriding principle that those who decide for them must act in their best interests and with the least restrictive effects.
Last year The Church of England and Roman Catholic Church expressed concern that no steps should be taken towards the legalisation of euthanasia. We welcome the explicit declaration now in the Bill that it does not change the law on murder and suicide, as well as the strict limitations placed on the applicability of advance decisions to allow for changes in patients' wishes or in their circumstances.
Nevertheless, some difficulties remain with the withholding and withdrawal of assisted feeding and hydration. We have been in touch with MPs about amending the Bill by including a presumption in favour of continuing life-sustaining treatment while not requiring it in inappropriate circumstances. If such clarifications can be put in place we would conclude that the Bill's safeguards in this area are probably satisfactory.
Some think the protection of the vulnerable has been weakened by reducing the meaning of 'best interests' to whatever a person or their chosen decision-maker might stipulate arbitrarily. However, the Bill provides that in determining best interests account must be taken of all relevant circumstances, which is an objective test, but embracing many rights and duties currently recognised in common law. We would welcome any amendments which would confirm the robustness of this test.
This Bill deals with complex and difficult issues on which morally sensitive people can disagree. We believe that Parliament should endorse its overall purpose while continuing to examine its detailed provisions.
Christopher St Albans
Abbey Gate House
St Albans
Hertfordshire
AL3 4HD
Age Concern
Mental Capacity Bill
Briefing on artificial nutrition and hydration
General View
Age Concern is part of the Making Decisions Alliance. The Making Decisions Alliance brings together a wide range of organisations and groups working with people who may, for a range of different reasons, have difficulty in making or communicating decisions. The Making Decisions Alliance was established to campaign for mental capacity legislation and is following the bill closely as it passes through Parliament.
Age Concern and the Making Decisions Alliance strongly support the Mental Capacity Bill. We believe it has the potential to transform the lives of the many thousands of people who lack the capacity to make their own decisions and the people who care for them. It is a bill which has been 15 years in the making and we believe the need for it is clear and urgent.
Age Concern does believe that the bill could be improved, and as a member of the Making Decisions Alliance, Age Concern is putting forward a number of amendments to the Bill which we consider will provide greater safeguards against possible abuse. We want to see provision for an independent advocate, rather than the 'independent consultee' which is currently provided for in the bill. We want provision for 'advance statements' (in which a person can specify the treatment they do want to receive) alongside the current proposals which will clarify the position of 'advance directives' to refuse treatment.
Background
Many of the concerns raised in the Second Reading debate related to the provision or withdrawal of artificial nutrition and hydration. The current law regards artificial nutrition and hydration (ANH) as a form of medical treatment and, as with all other forms of treatment, it carries potential associated risks and side effects. It does not necessarily prolong life or relieve suffering, although it may do so. There is therefore always a clear decision which needs to be taken about either starting or stopping treatment with ANH. People with the capacity to do so are free to decide to refuse or consent to receive any medical or other treatments (with the exception of a person who has been compulsorily detained under the Mental Health Act 1983). This includes a right to refuse treatment which may be life-sustaining.
Specific Points
Supporting Decision Making
Problems can arise where someone lacks the capacity to decide, or to communicate their wishes. Age Concern feels strongly that those individuals should be supported wherever possible to make their own decisions or, at the least, to be able to contribute to those decisions as much as possible. Where someone is unable to comprehend any aspect of the matter on which a decision is to be made, or cannot communicate in any way, we believe it is appropriate for decision-makers to try to make decisions as close as possible to those the individual might make. This means taking into account their wishes and preferences, their past behaviour and their known views.
Advanced Directives and Advanced Statements
The bill introduces the use of 'advance directives'. Whilst advance directives can be used to set out a person's wish to refuse life-sustaining procedures, they cannot authorise a doctor to do anything that is illegal or which a person with capacity could not request. This means they do not allow a doctor, or anyone else, to be lawfully involved in euthanasia or assisted-suicide.
Advance directives are primarily about what treatment a person might want to refuse under certain circumstances; advance statements present the opportunity for adults to declare the care and support they would want to receive. Advance statements are not binding in the same way as advance directives, because they would not of course oblige doctors to use treatments they considered to be inappropriate, but they offer a very good safeguard for people to record views that could, for example, include a wish that life-sustaining procedures be carried out. The Making Decisions Alliance strongly supports advance statements and wishes to see them included in the Mental Capacity Bill.
Burke v GMC
The recent court ruling (Burke v GMC) would appear to provide further safeguards in the way decisions are made about the provision of ANH and this may have a positive impact on the status of advance statements. The court ruled that if a person demanded life sustaining treatment, that person was entitled to it and doctors could only withdraw it if life imposed on the patient was intolerable. It reinforces the case for advance statements to have legal recognition within the bill.
We hope that this briefing is useful. You can find out more about Age Concern's work at www.ageconcern.org.uk or www.epolitix.com/forum/age-concern or by contacting Helen or Hannah in Age Concern England's parliamentary team (full contact details overleaf)
Mencap
About Mencap
Mencap is the UK's leading learning disability charity fighting for positive change for people with a learning disability, and their families and carers.
Mencap's position on the Mental Capacity Bill
Mencap supports the need for mental capacity legislation and believes this Bill has the potential to positively transform the lives of people with a learning disability. We want the Bill to pass at Third Reading on Tuesday (14 December) and hope MPs with an interest in learning disability issues will support it. However, independent advocacy holds the key to empowerment for many people with a learning disability. For some time we have been saying that the Government will need to invest in more independent advocacy services for this Bill to be effective. In particular, we want to see:
- Helping more vulnerable people - at present the Bill only makes provision for ICs to help those people with impaired capacity who do not have any friends or family when decisions are being made about serious medical treatment or where to live. We believe ICs are just as vital for people who are befriended as they are for people who are unbefriended.
- Clarifying the IC's role in dispute-resolution - the Government has said ICs should help to resolve disputes between the individual, family and health or social services - we agree. The Government intends to do this through regulations but there has been little firm detail on what exactly is planned. Mencap believes proposals for dispute-resolution should be set out on the face of the Bill and that this should cover a range of scenarios - not just in relation to accommodation and serious medical treatment.
- Renaming the Independent Consultee Service - we welcome the Government's shift in position during Committee to make clear that independent consultees (ICs) will function as well-trained independent advocates (as they are commonly understood in the social care world). ICs will use their expertise of the health and social care system to ensure that the wishes and feelings of someone lacking capacity are properly taken into account in best interest judgements. We feel that renaming this service to include the word advocacy would help avoid confusion.
Mencap is concerned that without more access to independent advocacy services, the Mental Capacity Bill will become another missed opportunity to empower more people with a learning disability to take control of their own lives.
What can you do to support the case for independent advocacy?
Please can you express your backing for more independent advocacy services by supporting Rt Hon Tom Clarke MP's amendments (Nos 33, 34, 35 and 36) at Report Stage tomorrow (Tuesday).
NAS
I am writing to you in advance of Report Stage/Third Reading of the Mental Capacity Bill to ask for you to vote for the Bill. The NAS is a member of the Making Decisions Alliance, a consortium of 40 leading voluntary organisations which supports the definite plans for a legal framework for decision-making for people who may have difficulties making decisions for themselves. We are very concerned that recent press reports have suggested that there is a link between the Mental Capacity Bill and euthanasia. This is wholly misleading and misrepresents the purpose of the bill, which is to empower the rights of people and give greater protection when needed. In order to provide a balanced view of the Mental Capacity Bill, this letter sets out to correct some of the claims made.
Purpose of Mental Capacity Bill
The purpose of the Mental Capacity Bill is to empower the rights of people and give greater protection when needed. Millions of people lose their ability to make decisions which affect their own life, either through disability illness or injury; others' lack of capacity to make some decisions is present from birth. Currently families and carers have no right to make decisions on behalf of a loved one who is unable to decide for him or herself. The Mental Capacity Bill puts into law a framework and safeguards for how decisions may be made when someone lacks capacity. The Bill will empower them, their families and friends by making it clear how, who and when decisions can be made on their behalf.
Concerns that the Bill allows euthanasia
Some people have claimed that the Mental Capacity Bill will allow euthanasia. This is not true. The Government has made clear that euthanasia and physician assisted suicide are both illegal in the UK and will remain so. This was confirmed by the Joint Parliamentary Committee which examined the Bill and by Ministers responsible for the Bill. The Government has also introduced an additional clause in the Bill which states that "nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961 (which prohibits assisting suicide)."
The ban on euthanasia and physician assisted suicide is designed to protect the most vulnerable members of society from abuse. And in fact, the Mental Capacity Bill seeks to strengthen this by legally requiring professionals to determine the best interests of a person who lacks capacity. They must find out everything possible about their wishes and feelings and the Bill introduces a new legal duty to consult their family members or carers before any decisions about treatment is made. The MDA therefore considers that the Mental Capacity Bill will enhance safeguards for people compared existing legal situation where there is no right for family members or carers to be consulted.
Advance refusals of treatment
Some people are concerned about the inclusion of advance refusals of treatments in the Bill. This provision simply codifies existing case law. An advance refusal of treatment decision contains an adult's instructions as to which medical treatment that person would not be prepared to accept if he or she should subsequently lose the capacity to decide for him or herself. They cannot authorise a doctor to do anything which is illegal or which a person with capacity could not request a doctor to do. The Bill also sets out specific safeguards to ensure that advance refusals are not misused. In addition, the Bill says that if the doctor has any doubt about whether the advance refusal is valid, he can provide treatment.
The way forward
We hope that this letter has clarified your view about the Mental Capacity Bill and that you will be able to vote for the Bill on 14 December. We also hope that the often mis-informed comments about this Bill will not drown out the many positive points and valuable debates that will continue to be had as the Bill progresses to the House of Lords.
If you have any queries or would like a more detailed briefing on our concerns in relation to this Bill please do not hesitate to contact us directly on 0207 903 3769 or via the Making Decisions Alliance website www.makingdecisions.org.uk.
