Joint Committee on the Draft Mental Incapacity Bill First Report

Conclusions and recommendations

1.  We recommend that consideration be given to a new procedure for setting deadlines for Joint Committees carrying out pre-legislative scrutiny to enable them to give full and proper consideration to all the issues involved and to allow those wishing to offer evidence to the Committee a fair and adequate opportunity to do so. (Paragraph 22)

2.  We appreciate that this Inquiry has given the Government much more food for thought about the Bill. We also recognise that the difficulties and implications raised later in this Report will need to be dealt with in consequential amendments. Nevertheless, we would be extremely disappointed if the Government felt unable to continue to give the Bill due priority. Those whom it is intended to help have waited long enough and deserve to have the benefits which the new legislation can bring in the very near future. (Paragraph 23)

3.  We concur with the widely-held view that a new Bill is needed to provide a comprehensive statutory framework for assisting those lacking capacity to make decisions for themselves wherever possible and for proper decisions to be made by others on their behalf where that is not possible. Even so, legislation can only go so far. It must be accompanied by changes in attitude which recognise the rights of those lacking capacity and the need to instil respect and good practice in dealing with them. The Bill must aim to preserve a satisfactory balance between enablement and protection (Paragraph 30)

4.  We welcome the Department's commitment to give further consideration to the possibility of incorporating a statement of principles on the face of the Bill. We believe that such a statement inserted as an initial point of reference could give valuable guidance to the Courts, as well as helping non-lawyers to weigh up difficult decisions. Evidence given to us indicates this would be welcome to a wide range of those who have to deal with the problems of substitute decision-making in practice. We also believe that such a statement would be valuable in helping to frame the Codes of Practice based on the Bill. (Paragraph 43)

5.  We further recommend that the statement of principles should include the following:

  • Every adult has the right to make his/her own decisions and must be assumed to have capacity to do so unless it is proved otherwise
  • Everyone should be encouraged and enabled to make his/her own decisions, or to participate as fully as possible in decision-making, by being given the help and support s/he needs to make and express a choice
  • Individuals must retain the right to make what might be seen as eccentric or unwise decisions
  • Decisions made on behalf of people without capacity should be made in their best interests, giving priority to achieving what they themselves would have wanted
  • Decisions made on behalf of someone else should be those which are least restrictive of their basic rights and freedoms". (Paragraph 44)

6.  We are of the opinion that under the proper interpretation of article 2, the State has a secondary obligation to protect life, but an individual can choose not to uphold that right. Accordingly, the mechanisms under the draft Bill, which permit the refusal of consent to the carrying out or continuation of treatment, in accordance with the wishes of the patient, do not contravene article 2 of the European Convention on Human Rights. (Paragraph 53)

7.  Although we have made recommendations that access to the Court of Protection should be further enhanced for persons lacking capacity. we are of the opinion that there are sufficient mechanisms provided under the draft Bill to ensure that persons lacking capacity receive a prompt, fair and public hearing. (Paragraph 57)

8.  Accordingly, we are of the opinion that the arguments put to the Committee that the draft Bill violates the rights enshrined in article 3 are without merit. In agreement with the Joint Committee on Human Rights, we conclude that the draft Bill provides sufficient safeguards to ensure that the right to be free from degrading treatment is protected. (Paragraph 61)

9.  We agree with the definition of capacity and the additional clauses under Clause 1 of the draft Bill. We support the principle of presumption of capacity which underpins the draft Bill. We note the functional approach adopted by the draft bill when allied to Best Interests is intended to provide protection to those lacking capacity. In this context, we believe that every effort should be made in both the Bill and in the Codes of Practice to ensure that this Bill is seen as enabling rather than restricting. (Paragraph 66)

10.  We recommend that the current clause 3 in the draft Bill before us becomes either clause 2 of any new draft, if our recommendations as to the inclusion of the general principle is accepted; or if not, then the current clause 3 should be clause 1 of any new draft Bill. This is because it better reflects the positive nature of the Bill's purpose and will increase confidence in the operation of this legislation. (Paragraph 67)

11.  We see the need for recognising the issue of 'general incapacity' in the draft Bill in a way that will not undermine the primacy of the functional approach and have recommended accordingly. We endorse the criteria of capacity set out in Clause 2 of the draft Bill for assessing whether a person is unable to make a decision and therefore lacks capacity. But we recommend that consideration be given to recognising the issue of 'general incapacity' in the draft Bill in a way that will not undermine the primacy of the functional approach. (Paragraph 68)

12.  We recommend that the Codes of Practice should state clearly that all relevant parties must use appropriate strategies to maximise the chance that persons will have the capacity to make decisions. This might include using specific communication strategies, providing information in more accessible form, or treating an underlying mental disorder to enable a person to regain capacity. (Paragraph 70)

13.  We endorse the functional approach to the determination of incapacity and the need to demonstrate 'an impairment of or a disturbance in the functioning of the mind or brain in asserting whether a person's capacity is temporary or permanent. We do not see the need to distinguish in the Bill between the temporary or potentially permanent nature of incapacity. (Paragraph 71)

14.  We recommend that the Codes of Practice should set out clearly the need for evidence on both ' impairment of or disturbance in mental functioning' and of lack of capacity, as defined in the draft Bill, and the appropriate means of determining that evidence in the best interests of the person concerned so that the criteria against which an appeal might be judged are transparent. (Paragraph 76)

15.  We recommend that the Codes of Practice should make clear that those acting under the General Authority or an LPA must appreciate the concept of capacity/incapacity and be fully aware of the responsibilities thus placed on them when carrying out or assisting decision-making on behalf of any person who is considered incapacitated. While it would be unreasonable to expect all those acting under the General Authority to have the necessary knowledge to determine that person's capacity to make any given decision, it reasonable to expect them to take appropriate advice and have appropriate people to assist them where necessary. The Codes of Practice must set out a framework on these matters which is readily understandable to lay persons. (Paragraph 77)

16.  We considered carefully the dilemma created when a person with apparent capacity was making repeatedly unwise decisions that put him/her at risk or resulted in preventable suffering or disadvantage. We recognise that the possibility of over-riding such decisions would be seen as unacceptable to many user groups. Nevertheless, we suggest that such a situation might trigger the need for a formal assessment of capacity and recommend that the Codes of Practice should include guidance on:

  • whether reasonable doubt about capacity and the potentially serious consequences of not intervening indicated the need for an appropriate second opinion;
  • circumstances in which the statutory authorities should be responsible for providing a level of support as a safeguard against abuse; and
  • where there was genuine uncertainty as to capacity and an urgent decision was required to prevent suffering or to save life, the benefit of doubt would be exercised to act in that person's best interests in relation to any assessment of capacity. (Paragraph 78)

17.  We take the view that the general principles set out at the start of the Bill should confirm that any act done for, or any decision made on behalf of a person who lacks capacity must be in the person's "best interests", and agree that statutory guidance on determining best interests should be included in the Bill. (Paragraph 83)

18.  We agree that no list of 'best interest' factors can ever be comprehensive or applicable in all situations. We therefore endorse the approach recommended by the Law Commission that a checklist of common factors to be considered in all cases should be set out in statute. However, it should be made clearer in the Bill that, in addition to these common factors, all other matters relevant to the particular incapacitated individual and the particular decision must also be considered. (Paragraph 85)

19.  In the context of the comprehensive decision-making framework created under the draft Bill, we concluded that the concept of benefit may be too prescriptive if added to the checklist. (Paragraph 86)

20.  we concluded that the addition of the word personal to best interests would not provide any better clarification and indeed might cause confusion. (Paragraph 87)

21.  We do not recommend any weighting or giving priority to the factors involved in determining best interests. It will be important for the Codes of Practice to provide guidance on how judgements about best interests may be reached, particularly where there are conflicting or competing concerns. (Paragraph 89)

22.  We seek reassurance that the form of words used in the Bill will require a person's values to be given due weight. (Paragraph 90)

23.  We considered it would be too onerous on relatives, carers and other informal decision-makers to require an understanding of human rights legislation when determining best interests. The Codes of Practice and any Departmental guidance issued to the general public should explain the relevant human rights considerations. (Paragraph 91)

24.  We consider that specific provision should be made to confirm that consultation with people close to the incapacitated person will include consideration of their views on what is likely to be in that person's best interests. In advance of the legislation anticipated on the status of civil partners we would expect the expression 'people close to' to include civil partners. (Paragraph 92)

25.  We recommend that the drafting of Clause 4 be amended to impose a requirement on decision-makers to seek the least restrictive option, and to specify that, in determining best interests, account must be taken of all the factors set out in the checklist. (Paragraph 94)

26.  We take the view that a requirement on decision-makers to seek the least restrictive option would involve having to consider whether any intervention at all was necessary. We therefore see no need for a specific "no intervention" provision other than in relation to court proceedings. (Paragraph 96)

27.  We strongly recommend that the requirements of a standard of conduct be included in the Codes of Practice aimed at those exercising formal powers under the Bill. We also recommend that the Department should issue clearly understandable guidance to informal decision-makers on the standards of conduct expected. (Paragraph 98)

28.  We seek reassurance that a common law duty of care would apply to all decision-makers under the Bill and ask that consideration be given to imposing a duty of care through express statutory provision. Here, too, the Department will need to issue guidance to informal decision-makers on the expected standards of conduct. (Paragraph 99)

29.  We recommend that the Codes of Practice should explain more clearly the circumstances in which reasonable belief should be relied upon. (Paragraph 102)

30.  We recommend that clauses 6 and 7 be redrafted to clarify the legislative intent of the general authority, in order to counter what appear to be widespread misunderstandings of the concept and its purpose. It might also be helpful for the Department to consider an alternative to the term 'general authority' which would avoid its misleading connotations and clarify that it is intended to convey permission to act in the incapacitated person's best interests in circumstances currently covered by the Common Law. (Paragraph 111)

31.  We recommend that the Department should clarify the term 'care' in clause 6 (1) and in any guidance given under the Codes of Practice. (Paragraph 112)

32.  In addition, we recommend that a sustained and comprehensive training programme for professionals, and a public information campaign for informal carers should be implemented, in order to provide these groups with an accurate understanding of the general authority. (Paragraph 113)

33.  We recommend that in re-drafting clause 6 the Department should emphasise the over-riding importance of the best interests of the person concerned, as defined in clause 4. (Paragraph 115)

34.  We are concerned that the provision of the general authority should not undermine the 'enabling' ethos of the draft Bill (Paragraph 116)

35.  We recommend that a reasonable belief should be objectively held. (Paragraph 117)

36.  We strongly recommend a redrafting of the clauses concerning the general authority in order to clarify that its use is intended to be limited to day-to-day decision-making and emergency situations. (Paragraph 119)

37.  We recommend that the Codes of Practice relating to the general authority should include a specific reminder that all practicable steps must be taken to help an incapacitated person contribute towards the process of every decision made on their behalf, however minor. (Paragraph 123)

38.  We conclude that the Codes of Practice accompanying the draft Bill should emphasise that all persons undertaking actions or decisions under the general authority must be aware that they may subsequently be called upon to justify their actions. They should therefore maintain sufficient records in order to be able to show that their actions were reasonable and in the best interests of the person in question. (Paragraph 125)

39.  We disagree with Lord Filkin's assessment. We recommend that consideration be given to imposing a statutory requirement for an independent second medical opinion to be sought in relation to the need for serious or invasive forms of medical treatment. Furthermore we conclude that greater availability of advocacy services would provide a counter to the potential for an excessive or inappropriate use of the general authority (Paragraph 127)

40.  We recommend that the Bill makes provision for a Regulation making power to enable further specific decisions to be excluded from the general authority and therefore always taken to the Court of Protection. This should include:

  • those decisions currently requiring court authorisation such as requests for the sterilisation of people lacking the capacity to consent;
  • the withdrawal of artificial nutrition and hydration from patients in a persistent vegetative state;
  • any procedure of an experimental kind that might carry significant benefits but which also carries significant risks (a situation exemplified by recent attempts to treat a person with new variant CJD); and,
  • significant decisions concerning the management of an incapacitated person's financial affairs. (Paragraph 129)

41.  We recommend that a right to a second opinion in cases of disagreement which have not been resolved through discussion be included on the face of the draft Bill. (Paragraph 130)

42.  We accept the value of mediation services and would like to see reference in the Codes of Practice accompanying the draft Bill to their utility as an alternative mechanism of dispute resolution. In situations where strong disagreements remain over what is in a person's best interests, the dispute should always be referred to the Court of Protection. (Paragraph 131)

43.  We recommend that clause 7 be redrafted to specify that detention can only be justified in a situation of urgency (including an emergency) and that the period of detention should be as short and least restrictive as possible. (Paragraph 132)

44.  We welcome Lord Filkin's acknowledgement that the Department needs to look again at the way in which the general authority is set out in the draft Bill. Unlike the Adults with Incapacity (Scotland) Act 2000 the general authority ensures that all decisions relating to personal care and health matters are brought within a statutory framework. Despite our concerns, we are convinced that with greater clarification of the intention and scope and with wider and more rigorous safeguards, the general authority would significantly improve the legislative framework for substituted decision making in England and Wales. (Paragraph 133)

45.  We recommend that the Bill should make clear whether it is intended that personal welfare decisions, excluding those relating to medical treatment, may be taken when a donor retains capacity. Further, clarification of the extent and limitation of the powers, as well as adequate guidance and training for donees, are also strongly recommended. (Paragraph 144)

46.  Whilst we support the intention of the draft Bill to allow individuals the freedom to choose their donee(s) when making an LPA, we recommend that further guidance is provided to warn donors of the potential for conflict. Furthermore, we recommend the inclusion, in Codes of Practice, of an additional safeguard mechanism by which the Court of Protection or the Public Guardian could monitor the use of LPAs with a view to preventing the abuse and exploitation of a donee's powers. (Paragraph 150)

47.  We strongly recommend that an express duty of care is incorporated into the draft Bill in respect of donees acting under an LPA (and for Court Appointed Deputies). We further consider that a greater degree of accountability is required from those groups in order to limit the potential for abuse of their powers and therefore, we recommend the exploration of effective methods to achieve that end. In particular, we recommend that specific requirements in the form of a standard of conduct should be included in the Codes of Practice, aimed at those exercising formal powers under the draft Bill. (Paragraph 154)

48.  We have concluded that the proposed system requiring the registration of LPAs before use will assist in monitoring the use of LPAs and detecting possible abuse. However, we recommend that donees should be placed under an obligation to notify both the donor and the Public Guardian that the donor is, or is becoming incapacitated, thereby putting this information on the public record and opening it up to challenge. We further recommend that guidance should be provided to assist financial institutions to deal with the operational realities of LPAs. (Paragraph 157)

49.  We believe that the additional safeguard of requiring two additional persons to witness the certification of capacity should be included where there are no named persons for notification of the registration of an LPA. (Paragraph 159)

50.  We recommend that further guidance should be provided to assist the Court of Protection in deciding when a single order is more appropriate than the appointment of a deputy. (Paragraph 164)

51.  We strongly recommend that further consideration is given to the provision of independent advocacy services and other means of enabling people lacking capacity to participate as fully as possible in any hearing affecting their rights and entitlements. (Paragraph 170)

52.  We seek assurances that public funds will be made available to ensure that the Court of Protection is sufficiently accessible for those with limited assets. Furthermore, we seek clarification as to the types of cases for which legal aid will be provided to mentally incapacitated applicants and alternative remedies for those cases which will not qualify. (Paragraph 173)

53.  We believe that further guidance is required for deputies as to the standard of conduct they must maintain in the operation of their duties. (Paragraph 180)

54.  We strongly urge that the provisions allowing deputies to consent to treatment be restricted to exclude the withdrawal or refusal of life-sustaining treatment. Unless there is a valid LPA or advance decision expressing the individual's wishes in relation to the subject, decisions relating to the carrying out or continuation of life-sustaining treatment should be referred to the Court of Protection for determination. (Paragraph 184)

55.  The Committee strongly recommend that it should be made clear on the face of the Bill which decisions or acts should fall under the remit of a court appointed deputy and not under the general authority. Furthermore, guidance should be provided to family members, carers and others exercising the general authority as to the point at which it would be appropriate to apply to the Court of Protection for the appointment of a deputy. (Paragraph 187)

56.  We recommend that the Bill should permit the making of advance decisions to refuse treatment. We recognise the genuine and deeply-felt concern of those who have moral objections to any decision being taken that could end life, but that right is recognised in law for those who are capable of making such decisions and we think it is right that the Bill should provide for those who wish to do so to have the legal means to have that decision respected should they become incapable. In doing so, the Bill should aim to set standards for good practice and ensure a means of challenge under circumstances where there were disagreements that could not be resolved (Paragraph 203)

57.  Many of the fears which have been raised with us about possible connections between the draft Bill and euthanasia appear to be misplaced. Nevertheless, in acknowledgment of the strength of feeling that clearly exists on this issue and in the hope that such misplaced fears do not detract attention from the many worthwhile aspects of the draft Bill, we recommend that additional assurance should be offered by the inclusion of a paragraph in the Statement of Principles we have recommended, or by an additional clause in the Bill, to make clear that nothing in the Bill permits euthanasia or alters the law relating to it. (Paragraph 204)

58.  In most circumstances we believe that it would be reasonable for the Bill to require that advance decisions to refuse treatment should be recorded in writing and witnessed by two independent persons having no financial interest in that person's estate. An exception might, however, be made where the decision was taken during ongoing medical treatment in which case it should be recorded by the doctor in charge of the treatment in the patients notes and independently witnessed. We believe that all individuals should be encouraged to register their advance decision with their doctors. (Paragraph 205)

59.  We recognise that advance decisions which they may not otherwise wish to make may be made by those suffering from depression, stress or other conditions that would affect their judgment. We also fully appreciate the potential for coercion or other malevolent actions on the part of others to secure advance decisions from vulnerable people. We therefore recommend that the Codes of Practice should require doctors to satisfy themselves that any advance refusal of treatment is valid and applicable. (Paragraph 206)

60.  We also recommend that the Department should issue sensitive public guidance designed to promote better understanding of what is involved in making advance decisions. This should explicitly state that any advance decision to refuse treatment should be made voluntarily. It should also include encouragement to seek appropriate professional advice before making such decisions, aimed at ensuring that they were made in the full knowledge and understanding of any relevant medical factors and written in an appropriate form. The Departmental guidance might include a suitable specimen pro-forma. It should also encourage them to update such decisions regularly, especially in the light of relevant medical developments. (Paragraph 207)

61.  We also recommend that the Codes of Practice should set out what should be considered by any doctor, when treating a person who is incapacitated and who is known to have made an advance decision, in determining whether such an advance decision is valid and appropriate. The Code should also state that, under these circumstances, any reasons why such an advance decision was considered valid, invalid or inappropriate must be recorded in that person's health records. (Paragraph 208)

62.  We believe that clause 24(4) in the draft Bill is sufficient to address the specific concern about new and unanticipated treatments becoming available which might have a bearing on an advanced decision. We recommend that specific guidance on this be given in the Codes of Practice. (Paragraph 209)

63.  We believe that people, whether incapable or not, have the right to expect that they will be cared for to the highest standards. We recommend that the Codes of Practice should explicitly state that the duties and responsibilities placed on health professionals must apply equally to capable and incapacitated people. No assumption should be made that life has less value for the latter. (Paragraph 210)

64.  We recommend that the Bill should seek to draw a distinction between basic care (which would include the giving of nutrition and hydration by normal means as well as actions to assist general hygiene and comfort), and the use of artificial means of nutrition and hydration, such as drips or naso-gastric tubes. We support the view that the former falls outside what is normally considered to be treatment and should always be available to people whereas the latter should be regarded as treatment in that the decision to use such artificial means is a clinical one to be made in accordance with best professional practice, and in the best interests of the patient concerned, and having consulted those specified in Clause 4 (2)(d). (Paragraph 211)

65.  We further recommend that the use of such artificial means should be determined by the doctors concerned in consultation where possible with the patient's family, friends or recognised representatives, on the basis of that patient's best interests and having due regard to previously expressed wishes given in any advance decision. If a valid and clearly expressed wish not to have artificial means of nutrition and hydration is expressed, and the advance decision is otherwise valid, then that wish should be respected. (Paragraph 212)

66.  We recommend that priority should be given to introducing the Mental Incapacity Bill so that account can be taken of these provisions in framing new mental health legislation. (Paragraph 217)

67.  We recommend that the drafting of Clause 27 be amended to clarify its intended purpose. (Paragraph 219)

68.  We recommend that the Codes of Practice include clear guidance to govern the choice of legal powers to provide treatment for mental disorder of people lacking capacity to consent. (Paragraph 222)

69.  We request clarification as to whether it is intended to incorporate additional safeguards for compliant incapacitated patients into the draft MI Bill if there is likely to be a delay in implementing the provisions proposed in Part 5 of the draft Mental Health Bill. (Paragraph 225)

70.  We recommend that the provisions for obtaining a second opinion currently available to patients detained under the Mental Health Act should be extended to compliant incapacitated patients requiring specified forms of treatment for mental disorder or for physical conditions, whether in hospital or in the community. The Bill should include a regulation making power to specify the types of treatment requiring a second opinion, which can be amended as new treatments are developed. (Paragraph 227)

71.  Although we re-iterate our anxiety to keep up the momentum and ensure that introduction of the Bill is not unduly delayed, we recommend that the Bill should not be introduced to Parliament until it can be considered alongside comprehensive draft Codes of Practice. (Paragraph 229)

72.  We agree that only those acting in a professional capacity or for remuneration should be under a duty to abide by the Codes of Practice. However, we believe that family members and carers should be strongly encouraged to follow the Codes of Practice. (Paragraph 232)

73.  Given the diverse range of situations which will be covered by the statutory framework for decision-making imposed by the Bill, we consider that the processes and requirements relating to assessment of capacity would be most appropriately dealt with in a Codes of Practice, as required under Clause 30(1)(a). (Paragraph 245)

74.  The Codes of Practice will need to cover, amongst other matters, the concept of best interests itself; the processes and issues involved in considering the factors set out in the Checklist in Clause 4 (including ethical issues such as confidentiality); suggestions of the types of additional factors which may be relevant in different situations and guidance on weighing up competing or conflicting concerns. (Paragraph 247)

75.  The Codes of Practice will need to include, amongst other matters, a clear explanation of the general authority as the means whereby practical and legally relevant decisions can be made, in a manner that is enabling and respectful of the person lacking capacity; guidance and examples setting out when it might be "reasonable" to act; the scope of the authority and how it links with other decision-making powers; and the requirement for all decision-makers to be fully accountable for their actions. (Paragraph 249)

76.  We recommend that specific requirements of a standard of conduct be included in the Codes of Practice aimed at those exercising formal powers under the Bill. (Paragraph 252)

77.  We recommend that the Codes of Practice should provide details of the OPG's supervisory role and the sanctions which may apply in the event of non-compliance with the codes. (Paragraph 253)

78.  we recommend that the Court's powers should include the power to remove a donee or deputy who is acting incompetently or failing to comply with the guidance given in the Codes of Practice as to the expected standard of conduct. It should be made clear to decision-makers that if their behaviour falls below the standard of conduct set out in the Codes of Practice, the court has power to remove them as attorneys or deputies and if their conduct is criminal, they will face the prospect and consequences of prosecution. (Paragraph 254)

79.  We strongly recommend that the statutory authorities should be given additional powers of investigation and intervention in cases of alleged physical, sexual or financial abuse of people lacking the capacity to protect themselves from the risk of abuse. (Paragraph 266)

80.  We recommend that Clause 31 be extended to include the misappropriation of the person's property and financial assets. (Paragraph 272)

81.  We understand that properly-constituted medical research is the process whereby knowledge about a specific disorder or problem is obtained in order to inform the development of new treatments or support strategies that can then be demonstrated to be effective or not through the use of controlled trials. Such information is essential if new treatments are to be developed and if the National Institute of Clinical Excellence (NICE) is to advise whether those treatments should be freely available. If properly-regulated research involving people who may lack capacity is not possible then treatments for incapacitating disorders will not be developed. (Paragraph 276)

82.  We are aware of the stringent arrangements necessary before any medical research, particularly that involving human participation, can take place. Most importantly, there is a requirement that all research must be submitted to an ethics committee for their approval. These ethics committees always include lay representation and specifically address significant ethical questions such as that of informed consent. (Paragraph 277)

83.  We are aware that research sanctioned by the ethics committees will vary in its invasiveness. It may extend from no more than asking questions of informants to the direct physical or psychological assessment of people with incapacity. It can also include specific investigations such as blood tests or brain scans. Such research interventions will carry with them different levels of potential inconvenience or discomfort. Informants are very likely to have the capacity to decide whether or not to participate. Assessments and many investigations of people with incapacity can only take place with their co-operation. (Paragraph 280)

84.  It follows that the inclusion of statutory provisions governing such research would enable the ethical requirements that must underpin research involving people with incapacity to be clearly enshrined in statute. (Paragraph 284)

85.  We conclude that a clause should be included in the Bill to enable strictly-controlled medical research to explore the causes and consequences of mental incapacity and to develop effective treatment for such conditions. This clause must include rigorous protocols to protect incapacitated adults from being exploited or harmed. (Paragraph 288)

86.  We therefore recommend that the Bill should set out the key principles governing research, such as those enshrined by the World Medical Association. Those key principles should include the following:

  • research involving people who may be incapacitated must be reviewed by a properly established and independent ethics committee and can only proceed if ethical permission is granted.
  • where a person has the capacity to consent then his decision whether or not to partake in research must be respected.
  • considerable care should be taken to ensure that under these circumstances consent to participate was freely given and not a consequence of coercion.
  • the inclusion of people in research, who lacked the capacity to consent, must only occur when such research has the potential for direct benefit to those with that particular problem and could not have been done through the involvement of those with capacity.
  • those undertaking research involving people lacking the capacity to consent must respect any indications that a person did not wish to participate (i.e. was dissenting).
  • any discomfort or risk involved in the research must be, at the most, minimal. (Paragraph 289)

87.  We further recommend that the Codes of Practice should set out the specific issues that ethics committees should be obliged to consider when any research includes people who may be incapacitated. These should include:

  • Whether the involvement of people who may be incapacitated is justified given the above.
  • Whether issues of consent and consultation with others has been properly been considered given the nature of the research.
  • Any other matters that seem relevant. (Paragraph 290)

88.  We also recommend that the Codes of Practice should define the duties of research ethics committees in relation to incapacitated adults. The Codes of Practice should state that these committees must include people from outside the medical profession. (Paragraph 291)

89.  We are convinced that independent advocacy services play a essential role in assisting people with capacity problems to make and communicate decisions; helping them to enforce their rights and guard against unwarranted intrusion into their lives; providing a focus on the views and wishes of an incapacitated person in the determination of their best interests; providing additional safeguards against abuse and exploitation; and assisting in the resolution of disputes. (Paragraph 296)

90.  We agree that it would be inappropriate for us to recommend that resources be committed to provide a statutory right to advocacy for all people affected by the Bill's provisions. However, we recommend that a provision be included in the Bill, similar to that in the Health and Social Care Act 2001, to empower the relevant Ministers to arrange, to such an extent as is considered necessary to meet all reasonable requirements, for the provision of independent advocacy services to incapacitated adults affected by the Bill's provisions. (Paragraph 302)

91.  We recommend that the Government consider setting up an agency, similar to the Advocacy Safeguards Agency in Scotland, with the aim of promoting standards for good quality independent advocacy. (Paragraph 303)

92.  We recommend that the Codes of Practice produced under the Bill provide guidance on the appropriate use of advocacy services, in particular suggesting priority situations when it may be essential for an incapacitated person to have access to an advocate. (Paragraph 306)

93.  We recommend that all organisations commissioning or providing advocacy services to incapacitated adults should have satisfactory procedures in place to ensure that the standards and quality of independent advocacy services are monitored and maintained. (Paragraph 308)

94.  The Department have not produced reliable estimates of the cost of the Bill or adequately consulted on likely costs. They have provisionally estimated a cost equivalent to a present value of £171m over ten years and some witnesses have identified still further costs. However, we recognise that not all the costs predicted by witnesses will necessarily add to the overall burden on taxpayers at national or local level; there may also very well be offsetting savings. (Paragraph 339)

95.  Given that the Bill has been under consideration for so many years, we fail to understand why the Department were not able to produce more accurate figures and do not appear to have carried out adequate consultations on likely cost. We regret that the draft Bill was presented for Parliamentary Scrutiny without the accompanying assessments of the resource implications. We were also surprised and disappointed that the Treasury should have waived the requirement for a full resource impact assessment of costs and benefits to accompany the draft Bill. As a result of these factors, we have been placed in the invidious position of having to carry out our duty of scrutiny without any detailed indications of what the Bill might cost or what the quantum of benefits it will lead to might be. (Paragraph 340)

96.  In the absence of such indications, we regret that we are unable to reach any conclusions on the resource impact of the Bill. Many of the benefits of social legislation are unquantifiable. Nevertheless, the Department's failure to provide proper estimates of costs and likely benefits has impaired the process of pre-legislative scrutiny and made it impossible for us to judge whether the benefits of the Bill may outweigh its costs or whether the likely cost might benefit people without capacity more effectively in other ways. Nor is it clear to us whether adequate trained personnel will be readily available to ensure that the Bill is implemented effectively. We can only urge that these aspects are exposed to the most rigorous scrutiny when the Bill itself comes before both Houses. (Paragraph 341)

97.  We regret that the Department do not appear to have adequately addressed the important, though admittedly complex, issues involving access to information to those acting on behalf of people lacking capacity. We welcome the Department's assurance that work is in hand to resolve these issues and that consequential amendments will be included in the Bill when it is introduced. We hope that the implications can be thoroughly investigated and adequately tackled in the consequential amendments and in the Codes of Practice. But we also hope that this will not unduly delay presentation of the Bill. (Paragraph 356)

98.  We were rather surprised that the Department had not included in the draft Bill any consideration of the jurisdictional implications of the different Scottish legislation for those domiciled in one jurisdiction who suffer incapacity and require decisions to be made while in the other. We acknowledge that legal complexities might be involved in some cases and welcome the Department's confirmation that they intend to provide adequately for this aspect in the Bill when it is introduced. (Paragraph 361)

99.  we recommend that consideration be given to changing the Bill's title to the "Mental Capacity Bill"(Paragraph 365)

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