House of Lords - Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005

Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005 Contents

Chapter 3: The five core principles: Is the Act working as intended?

40. We have already set out our overall finding that the Act is widely supported, but that it is not well embedded in practice (see chapter 1, paragraphs 12-13). The Act was described by a wide range of witnesses in glowing terms: "progressive,"[40] "positive,"[41] "a wonderful piece of legislation"[42] and "a force for good".[43]

41. A case can be made that in terms of establishing the system and structures required by the Act, its implementation has been effective. As Paul Gantley, former Implementation Manager for the Mental Capacity Act at the Department of Health, told us:

"There was a new Court of Protection, a new Office of the Public Guardian, a new IMCA service from scratch in about 150 or so local authorities, each commissioned on time, a new offence was put into place, a code of practice that had three versions at different times, there were lasting powers of attorney and so on. From a narrow perspective, we were effective and we achieved those targets".[44]

42. But Mr Gantley also conceded that "that is not the same as saying the Act is fully implemented or understood. That is a different test".[45] This accords with the evidence we received. The test that was being applied by witnesses who argued that the Act was widely not complied with, was whether the core principles, which underpin the empowering ethos of the Act, had been widely understood and embedded in practice; in effect, had there been a revolution in public attitudes and practice, as the Government predicted in 2004? We find this to be an appropriate test. This chapter considers in more detail where, how and why implementation is lagging behind the legislation.

CONTEXT OF THE HEALTH AND SOCIAL CARE SECTOR

43. Most of our evidence concerning the implementation of the core principles focused on the health and social care sectors. We set out briefly some context concerning those sectors, which provides the backdrop to our findings.

44. Standards of care, and especially of care for those with learning disabilities, have received renewed public attention following a number of high profile failures, such as those found at Winterbourne View Hospital. Over the course of our inquiry the Government published its response to the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD)[46], concerning preventable deaths which had occurred due to a failure to provide equality of care to those with learning disabilities. That inquiry followed on from an earlier report Healthcare for All, published in 2008, which reported on access to health care for people with learning disabilities.[47] The report found that although the legislative framework was clear, there was a failure to deliver adequate services resulting in avoidable suffering and deaths.[48] The report, sometimes known as the Michael review, after its chairman Sir Jonathan Michael, also pointed to ineffective monitoring of compliance with the (then) legislative framework comprised of the Disability Discrimination Act and the Mental Capacity Act.

45. Also during the course of our inquiry, the Government published its final response to the Francis report,[49] which had identified systemic, organisational and individual failings which had contributed to "the normalisation of cruelty"[50] in care at the Mid Staffordshire NHS Foundation Trust. The 2012/13 Annual Report by Healthwatch England cited research in which 94% of the public agreed that the NHS and social services could be improved.[51] Furthermore, 1 in 3 of those surveyed said they knew someone who they believed had experienced a serious mistake, abuse or a preventable illness or death in a health or social care service. While these reports do not relate directly to the Mental Capacity Act, they reveal significant current concerns about the context within which the Act is expected to apply.

46. The role of the Care Quality Commission as regulator for health and social care services in England has also been under scrutiny. The quality of its inspection regime was questioned following the revelation that it had failed to respond to the concerns raised by the whistle-blower at Winterbourne View Hospital in 2010.[52]

47. There have also been structural changes to the commissioning of health and social care services following the Health and Social Care Act 2012, which moved responsibility for commissioning from Primary Care Trusts and Strategic Health Authorities to NHS England and Clinical Commissioning Groups, from April 2013. Clinical Commissioning Groups are required to work with Local Authorities and others to provide and commission health and social care in each area based on a strategic needs assessment. All Clinical Commissioning Groups are required to have a lead for the Mental Capacity Act as a condition of their registration with NHS England.

48. Straitened times and straitened resources are in evidence across the health and social care systems, and many of our witnesses touched on this. It is worth noting the impact which this has had on the voluntary sector. A wide range of organisations representing service users and carers have provided advice and guidance on the Mental Capacity Act since before its implementation. As some elements of public services are reduced or discontinued, there is a corresponding surge towards providers of information, advice and advocacy in the voluntary sector. Not surprisingly those organisations are similarly affected by the economic climate and are not always able to meet such demands.

49. We also note the Report by the former House of Lords Select Committee on Public Service and Demographic Change, Ready for Ageing?,[53] which pointed to a significant shift in the population, and the likely impact on public services, including health and social care. The report identified that England would see a 51% rise in the number of those aged 65 and over, and a 101% rise in those aged 85 and over, between 2010 and 2030.[54] It forecast that the number of people in England and Wales aged 65 and over with dementia, would increase by over 80% to 1.96 million between 2010 and 2030.[55]

50. The declining confidence in the standards of care, the very recent structural changes in the commissioning and delivery of health and social care, the growing pressure on services from an ageing population, and the impact of austerity on the public and voluntary sectors, form the backdrop to our inquiry.

CHANGES IN THE HUMAN RIGHTS FRAMEWORK

51. In December 2006 the United Nations adopted the final text of the Convention on the Rights of People with Disabilities. The Convention seeks to remove obstacles which prevent disabled people from accessing the rights enshrined in the Universal Declaration of Human Rights 1948, and to deliver dignity, equality and inclusion for disabled people. The United Kingdom ratified the Convention in June 2009.

52. The Convention contains a number of rights relevant to the Act. Most prominent is article 12, the right to equal recognition before the law. Guidance produced by the Equality and Human Rights Commission explains that this "means that disabled people cannot be denied the right to make their own decisions. If they need help to make decisions, then this should be given".[56] The United Nations Committee on the Rights of Persons with a Disability issued a consultation on draft guidance on the meaning of Article 12 in September 2013, after this Committee had begun its inquiry. The deadline for submissions to the consultation was January 2014 and we are not yet aware of its outcome.

53. We have not sought to review the compatibility of the Act with the Convention, although we understand that the Government has commissioned such an assessment, and we await its outcome.[57] Given the time frame of the UN Committee's consultation and the Government's own assessment, it is reasonable to conclude that the position of the Mental Capacity Act in relation to the Convention is not entirely clear at this time. It would not be prudent therefore for this Committee to make specific recommendations concerning the Act's compatibility or otherwise with the Convention, and any legislative changes that may or may not be necessary. However, we have received evidence of how the use of the Act in practice could be better aligned with the Convention, and we refer to that where relevant. Although the issue of compatibility cannot be resolved at present it will be relevant in future, and we have therefore taken the view that better alignment in practice should be regarded as a reasonable aim.

Implementation of the Core Principles

54. During the passage of the Bill, as during pre-legislative scrutiny, articulation of the principles of the Act was seen as central to the reform of the law. It formed one of the first recommendations of the pre-legislative committee, who said that "such a statement [of principles] 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".[58] The Government agreed, saying that the principles were "the fundamental concepts of the Bill," and committed to including them in the legislation and in the Codes of Practice.[59]

55. Many witnesses concurred on the significance of the five principles, which were described as "the pillars for the framework in defining capacity and best interests".[60] North East London NHS Trust said that "the principles are the single best feature of the Act" which had "the potential to revolutionise healthcare".[61] The British Institute of Human Rights said the principles ensured "capacity decisions are made in a way that respects, protects and fulfils people's human rights".[62] Mark Neary, father of Steven Neary, who was found to be unlawfully detained by London Borough of Hillingdon in 2010 (see Box 3), described the principles of the Act as "transformative when applied correctly and genuinely in P's best interests".[63] Nonetheless there was a recognition from some witnesses that applying the principles in practice was challenging: "given the wide range of people and circumstances [the principles] are applied to, these can be in practice, very complex judgements".[64]

BOX 1

The principles of Mental Capacity Act

Mental Capacity Act 2005, section 1, clauses 1-6

(1) The following principles apply for the purposes of this Act.

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

(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

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

(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action

The first principle: presumption of capacity

56. Section 1(2) of the Act embodies the intention to embed in law the principle that everyone has the right to make their own decisions, and that capacity must be assumed until proven otherwise. Evidence to this inquiry suggests that the implementation of this principle is patchy, at best. The principal reasons for this are a tendency among health and social care staff to make assumptions based on impairment; the failure to conduct assessments when necessary; the poor quality of assessments generally, and the failure to take into account the impact of specific conditions on assessment. We also note poor understanding of the principle of presumption of capacity among professionals, and the difficulties experienced in applying the principle in practice. Disconcertingly, there is evidence of the presumption of capacity being used to support non-intervention by service providers.

57. Advocacy Service Cymru told us that in their experience "patients are deemed to lack capacity on 'assumptions' of professionals because of a mental illness, deafness, appearance, age".[65] This finding was supported by the Mental Health Foundation, whose research into best interests decision-making had concluded that people were being found to lack capacity "for reasons which the Act does not allow, i.e. a blanket assumption based upon diagnosis or an unwise decision".[66] Calls to a helpline operated by Sense, a charity for deaf-blind people, had shown that in medical settings especially "there tends to be an immediate assumption of lack of capacity".[67] The same finding was reported by legal practitioners: "There seems to be a discriminatory practice that when dealing with certain client groups, e.g. the elderly or learning disabled, it is for them to show that they have capacity".[68]

58. These views were supported by evidence from parent carers: "The assumption seems to be that if a person has learning disabilities, then they don't have capacity to make their own decisions".[69] One mother of a physically disabled daughter related the following incident:

"My daughter does not lack capacity, however, whilst she was in an intensive care unit she needed a surgical procedure. I arrived at the unit to be seen by two consultants who asked me to sign a form stating that she lacked capacity. I refused to sign the form because she does not lack capacity. I was then told that she was ventilated and sedated so agreed to sign the form with the addition of a statement that the lack of capacity was related to this situation only. I then went into the unit to find her wide awake! On checking with the nurse I discovered that my daughter had not been sedated when the surgeon had been in to see her and that he had made no attempt to discuss the procedure with her or gain her consent. This man had simply observed her existing physical disability and assumed lack of capacity which is contrary to the act".[70]

CAPACITY ASSESSMENTS

59. If capacity is in doubt section 3 of the Act sets out how it is to be assessed (see Box 2).

BOX 2

Assessing Capacity Section 3 of the Act

Inability to make decisions

(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable—

(a) to understand the information relevant to the decision, .

(b) to retain that information,

(d) to communicate his decision (whether by talking, using sign language or any other means).

(2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).

(3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

(4) The information relevant to a decision includes information about the reasonably foreseeable consequences of—

(a) deciding one way or another, or

(b) failing to make the decision.

60. Witnesses reported that "in the majority of cases the process of conducting a formal capacity assessment is not completed and not formally recorded".[71] Furthermore, Toby Williamson, from the Mental Health Foundation, told us that staff appeared to struggle with how to apply the principle of assumption of capacity in practice, and that this could lead to a failure to conduct an assessment:

"There is an example of a lady in a care home who had significant dementia, who was refusing to change her clothes at all and was becoming quite soiled, and staff were not sure what to do. They had been led to believe that they must allow people to have autonomy and make decisions themselves, and did not understand that they could use the Mental Capacity Act to assess capacity and potentially intervene to improve the person's quality of life by making decisions for the person if they lacked that capacity".[72]

61. Kirsty Keywood, senior lecturer at Manchester University, referred to the "unanticipated consequences"[73] of the empowering ethos of the Act from the perspective of adult safeguarding. She gave examples where vulnerable adults had been left at risk of harm, in some cases leading to their deaths, after having disengaged from services, and where that decision to disengage had not been sufficiently examined by social workers to understand whether the person making it had capacity to do so. When professionals involved in such cases were questioned, their response was that "Well, there is a statutory presumption of capacity".[74] Ms Keywood concluded that "there is something about the presumption of capacity as it is currently worded in the Mental Capacity Act that has obscured the thinking of a number of people working at the grass roots".[75] Such difficulties in understanding how to apply a statutory duty in practice are not unique to the Mental Capacity Act. The Independent Inquiry into Access to Healthcare for People with Learning Disabilities found that, in relation to the Disability Discrimination Act 2005, health service staff "commonly fail to understand that a right to equal treatment does not mean treatment should be the same".[76]

62. There appeared to be other reasons for failing to conduct an assessment: Michael du Feu, a Best Interests Assessor, described a "strong reluctance" by some nurses and social workers to undertake an assessment due to a fear that their decision "might be tested by the legal profession in a court of law".[77] We also received evidence from a GP, Dr Andrew D. Hardie, who argued that capacity assessments as set out by the Act required a legal rather than medical decision, which was "disruptive to medical assessment" and "liable to cause confusion".[78]

63. We were told of a worrying tendency among local authorities to use the presumption of capacity to avoid taking responsibility for a vulnerable person. Nicola Mackintosh, representing the Law Society, told us that she had seen "lots of cases where a person has been neglecting themselves, and the local authority or the relevant health agency has used the presumption of capacity to allow that to continue".[79] This was echoed by the submission from Irwin Mitchell LLP, who suggested that the assumption of capacity was on occasion deliberately used by local authorities "as an excuse to do nothing on the basis of someone being a conscientious refuser of services, on the basis that P is expressing a view and 'they must be assumed to have capacity'".[80]The Law Society referred to the principles of the Act being "applied perversely", using the presumption of capacity to avoid assessing capacity, "with the implications for associated support and resources".[81] The British Association of Brain Injury Case Managers put it more starkly: "assessment of capacity is used as an economic tool to justify lack of provision, leaving the disabled person unprotected and those trying to protect them with no means to provide services".[82]

64. Such points were echoed in the submissions from family carers who expressed frustration at the misappropriation of the assumption of capacity by health and social care staff to justify poor care. Two separate witnesses who were relatives of adults with learning disabilities reported a failure by care staff to conduct capacity assessments when those adults continued to make unwise choices which risked serious health consequences, including type-2 diabetes.[83] One of them referred to the Act as having "a paralysing effect on medical and social care professionals, preventing them from giving the best possible care".[84] The Down's Syndrome Association also reported concerns expressed by families regarding "the simplistic manner in which choice is interpreted by support staff leading to concerns over health and welfare".[85]

65. Conversely, there was also evidence that a lack of capacity was sometimes assumed in order to justify a decision made by the local authority, which was often resource-led. Nicola Mackintosh told us that she had handled "many, many cases" where "clients have been deemed to lack capacity because the outcome is going to be that the state spends less on them".[86]

QUALITY OF CAPACITY ASSESSMENTS

66. The quality of capacity assessments was also criticised. Serjeants' Inn Chambers told us: "A recurring feature of cases we see is low-quality capacity assessments, requiring the capacity assessment to be carried out afresh".[87] A group of barristers and solicitors who jointly submitted evidence reported their shared experience that health professionals had a "much weaker knowledge and awareness" of the Act, which led to their capacity assessments being "less thorough and less compliant with the MCA and the Code of Practice, including on basic issues such as the need for an assessment of capacity to be decision-specific".[88]

67. The British Association of Social Workers conceded that some social workers did not feel equipped to undertake capacity assessments, and that a lack of confidence was to be found more widely among professionals working in hospitals and care homes. As a result there was a tendency to involve specialist services, such as mental health social workers, to carry out the assessments.[89]

68. The carers for HL, whose case in the European Court had led to the introduction of the Deprivation of Liberty Safeguards (see Box 7: The Bournewood Gap), told us that: "on many occasions [assessments] are not carried out by the best person to understand the decision that needs to be made, [and] not in a setting that suits the person and with insufficient relevant information to allow the person a reasonable chance to make an informed decision".[90] This was the experience of Mr Mark Neary, father to Steven Neary who was found to have been unlawfully detained by the London Borough of Hillingdon in 2010 (see Box 3: The case of Steven Neary).[91]

"There is a huge pressure on P in these assessments; they are having to demonstrate many things that a non learning disabled person would never have to be assessed on. The Act requires P to be supported through the assessment but if the assessor is meeting P for the first time, they won't have the knowledge to provide adequate support. At the three assessments Steven had whilst he was detained, neither myself nor his regular support workers were allowed to be present (in case we led Steven, or prejudiced the outcome). This puts P at a considerable disadvantage and from the outset, shows that a supportive process has turned into an adversarial one".[92]

BOX 3

The case of Steven Neary

Steven Neary, a young man in his early 20s, has autism and a severe learning disability. He lives at home with his father, with high levels of support funded by London Borough of Hillingdon Council. In December 2009 his father reported to Hillingdon that he was having difficulties coping, and asked to bring forward a scheduled visit to respite care. The council arranged for Steven to stay in a residential support unit. However, staff found Steven's behaviour very challenging and were concerned about his return home. His father wanted him to stay at the unit for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the council had already decided that Steven should not be allowed to return home and kept him at the facility for nearly a year, including a period when he was subject to the Deprivation of Liberty Safeguards. During this time plans were made to send Steven to live permanently at a facility in Wales. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father.

69. The group of solicitors and barristers who jointly submitted evidence found that "the best capacity assessments are by people who know P, and who have experience and training in communicating with people with disabilities, and who see their task as assisting P to make a decision, not testing P's knowledge".[93] Mr Neary concurred: "the assessor needs a solid understanding of how P communicates and that takes time and commitment that isn't often available. Certainly, in my experience, the time and commitment doing the assessment nowhere near matches the seriousness of the issues at stake for P".[94]

70. Many of the criticisms raised about the way in which capacity is assessed appear to result from assessments being carried out by professionals who are not closely involved with the care of the person affected ('P'). This professionalisation of capacity assessments, conducted by those with no established link to the person concerned, has lead to some requirements of the Act—such as the need to support P's communication, or the condition that assessments are time and decision-specific—being more difficult to fulfil in practice.

ASSESSING CAPACITY IN ADULTS WITH SPECIFIC CONDITIONS

71. Particular concern was expressed regarding the assessment of capacity in adults with specific conditions such as Down's syndrome, autism and brain injury. The Down's Syndrome Association questioned whether social workers had the ability to assess correctly the capacity of people with Down's syndrome, given that "young people with Down's syndrome often have quite good language skills and so they come across as being more able than they actually are because they have learnt lots of different social cues to use".[95] The National Autistic Society pointed out that assessments were carried out very quickly, and that environmental factors ("the language the person uses or even the colour jumper someone is wearing")[96] could have an impact on the assessment; they called for "better understanding of autism"[97] on the part of the assessors.

72. We received a number of submissions from those working with individuals who had experienced a brain injury, expressing concern about whether those without experience in this field were able correctly to assess capacity.[98] The British Association of Brain Injury Case Managers summarised the dilemma thus:

"Clients who have a good residual intellect, who present plausibly and articulate their thoughts well are very likely to be considered to have capacity to manage their own affairs, even despite a lengthy history of impulsivity, lack of social judgement, tangential thought processes, problems with attention and a lack of insight into how their cognitive deficits affect their decision making. Yet this is a client group who can still be extremely vulnerable to malign influence and coercion, particularly if they are in possession of a lump sum of money".[99]

73. Across the submissions concerning brain injury two factors appeared to collide: the difficulty for a non-specialist of assessing the nature of the impairment in a structured interview, and the application of the third principle—the right to make unwise decisions—by social workers, who sometimes interpreted as lifestyle choices what others with expertise in brain injury considered the actions of a vulnerable person suffering from a debilitating injury. One example concerned a local authority who had "found that a very vulnerable client who had sustained 2 brain injuries and was heavily influenced by her boyfriend, had capacity and was simply making a 'lifestyle choice' to partake in street prostitution to fund both their drug habits".[100]

WHAT TRIGGERS AN ASSESSMENT?

74. In general there appeared to be little clarity about when an assessment should be triggered. Professor Jones suggested this should be remedied within the Act or at least the Code of Practice, which currently refers to complex decisions needing a formal capacity assessment:

"That is not sufficient. Many simple, straightforward decisions relating to a mentally incapacitated person can be extremely important for them. They can be crucial. 'Who do I live with?'. That is not necessarily a complex issue, but clearly it should be preceded by a formal capacity assessment and a formal best-interests judgment".[101]

75. Several witnesses expressed concern that in medical settings it appeared that an assessment was triggered in most cases only when treatment was refused. Nurses and other staff working with adults with learning disabilities interviewed by Dr Julie McVey admitted that "if a service user implied consent by not resisting care, treatment or interventions then the MCA was not used".[102] Beverley Dawkins of Mencap and Hannah Barnett of the National Autistic Society, expressed concern about this since it ran the risk of allowing a vulnerable adult to undergo treatment without any of the relevant safeguards provided by a best interests test, as long as they were acquiescent.[103]

76. The written evidence provided by the College of Emergency Medicine seemed to underline this point with a case study of a 45 year-old intoxicated man who had sustained a head injury. According to the case study the man "was not orientated in time or place. He was not able to focus his attention on the interview for more than a couple of minutes".[104] Despite this it was only after the man "became aggressive to staff and threatened to leave"[105] that an assessment of capacity was undertaken. The oral evidence we received from the College of Emergency Medicine appeared to reinforce the impression given by the case study.[106]

77. Conversely, a failure adequately to question a refusal of treatment was also cited as operating against P's best interests. Dr Pauline Heslop, principal investigator of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) gave examples of when the failure to assess capacity following such a refusal had led to delays to treatment that was necessary and urgent, and resulted in deaths which could have been prevented by a timely assessment and a best interests process. She concluded that "the presumption of capacity is a good starting point, but should be questioned more than it is".[107] She added that "a person's over-riding fear of medical intervention is likely to mean that they are unable to weigh up the advantages and disadvantages of investigation and treatment, and a test of capacity should be undertaken in this respect".[108]

78. The British Association of Social Workers told us that in social care settings an assessment of capacity was more usually triggered by a "perception of risk" amongst families or professionals.[109] There was recognition from many witnesses that the instincts of social workers tended to emphasise the need to protect vulnerable adults rather than to enable their decision-making, if necessary by supporting what appeared to be an unwise decision.[110] We consider this attitudinal barrier to implementation in more detail below.

The second principle: supported decision-making

79. Section 1(3) of the Act specifies that "a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success". The second principle is generally referred to as supported decision-making, and is intended to enable P as much as necessary to be able to make a decision. Our evidence suggests that this is rare in practice. Irwin Mitchell LLP reported that "there is less focus on supporting people with making decisions than assessing whether they can make those decisions or not."[111] The Challenging Behaviour Foundation submitted that "those affected by the Act are not being enabled or supported to make decisions for themselves or in their best interests".[112] Instead, we were told, "there is still a tendency to understand the Act as a framework for making decisions for or on behalf of a person rather than encouraging and maximising their participation in the decision making".[113] The Law Society concluded that "the focus continues to be on protection rather than enablement, and on best interest decision making as opposed to supported decision-making by the impaired person".[114] This was borne out by the Alzheimer's Society, who reported calls to its helpline about "individuals being deemed to lack capacity to make a decision, rather than being supported to make their own decisions as intended by the legislation".[115]

80. The Nuffield Council on Bioethics pointed out that, particularly in cases of dementia, decision-making capacity varied depending on time of day or other circumstances. It advocated a form of supported decision-making which relied on making decisions jointly "with trusted family members".[116]

81. The Sussex Partnership NHS Foundation Trust suggested that the requirement for supported decision-making "placed a significant burden on staff" and that "work pressures at times override ethical and legal principles because of a lack of understanding".[117] Cambridgeshire County Council called for "more emphasis [to] be given to the second principle" but it conceded that this raised issues of resources, both in terms of time, and also staff training.[118] The impact of reduced resources on supported decision-making was addressed more widely by Mind:

"To assess, engage and empower a person who may lack capacity can be resource intensive. It may require help from speech therapists or occupational therapists or for more time to be devoted to that person by the care staff or clinical team supporting them. There is a risk that in a time of austerity when resources are scarce there will be a temptation to cut corners and to fail to properly give effect to the requirements of the Act".[119]

82. The Law Society argued that lack of education, training, time and resources were barriers to the greater use of supported decision-making at present. We did hear examples of good practice however, such as the use of learning disability nurses in acute hospitals, whose presence tended to lead to better implementation of the Act, principally through making small adjustments which enable P to be as involved as possible in decisions relating to his or her care (see Box 4). Such practice underlines the point made by Sir Jonathan Michael that reasonable adjustments, as required by the Disability Discrimination Act 2005, "to make services equally accessible to people with learning disabilities, are not particularly difficult to make".[120] We were also very impressed by the endeavours of one particular family, whom a delegation of the Committee met, to support their adult son with learning disabilities to play an active role in the decisions affecting his life. Apart from choosing his daily activities, he had also been supported to vote in two general elections and two London Mayoral elections. His parents had helped to prepare him for each decision by making scrapbooks of the candidates, providing details of their policies and what they stood for. They had provided this information clearly and in small amounts. Each time, the process had taken three months.[121]

BOX 4

Jim Blair, learning disability nurse consultant & hospital passports

The Royal College of Nursing told us that where learning disability nurses were practising there was an increased likelihood of the Act being followed. An example of this was the work of consultant learning disability nurse Jim Blair, of St George's Hospital in London, who, according to the Royal College of Nursing "raises awareness of the patient's needs to all health professionals involved in care, throughout the care journey of the patient".[122]

In articles for Nursing Management and Emergency Nurse, Jim Blair explained the adjustments that had been implemented at St George's to improve outcomes for adults with learning disabilities: the first and last appointments of the day were always offered so that people who found it traumatic to wait did not have to do so; double appointments were offered to permit a fuller assessment of needs, so enabling more effective treatment; families of patients with learning disabilities were not restricted to fixed visiting times, allowing them to be on hand to provide support and advocacy to their relative.[123] The triage process in the emergency department was slowed down and information provided gradually and in a quiet place to allow patients time to absorb what was happening and to become engaged in their care. The additional time also allowed nurses to assess capacity effectively and to avoid assumptions based on diagnostic conditions.[124]

A key part of the adjustments to enable better care was the adoption by St George's of a hospital passport. The passport is completed by the individual and their family and carers, and it provides information on likes and dislikes and how the person communicates, as well as medical information such as allergies. The passport is held by the individual who brings it to hospital for any appointment or emergency admission. Jim Blair explained in Nursing Management that "Hospital passports ensure that people with learning disabilities are more involved in their care, and that this care is provided in a more personalised and dignified manner".[125]

83. A number of witnesses emphasised the importance of focusing more on supported decision-making in order to enhance compliance with the United Nations Convention on the Rights of People with Disabilities (see paragraphs 51-53 above). The Mental Disability Advocacy Center (MDAC) argued that as an example of a "substituted decision-making regime," the Act is prima facie incompatible with the Convention, but the Act "could be applied in such a way as to reduce the extent of non-compliance".[126] They suggested placing considerably greater emphasis on supported decision-making, to the point that decision-making based on objective best interests rather than the views of P becomes a last resort, limited to those individuals who cannot communicate their wishes and feelings at all. The Law Society concurred with MDAC that "a greater emphasis on supported as opposed to substitute decision making is needed in order to move towards greater compliance" with the Convention.[127]

The third principle: unwise decisions

84. The right to make an unwise decision, enshrined in section 1(4), underpins the empowering ethos of the Act: "A person is not to be treated as unable to make a decision merely because he makes an unwise decision." Across the evidence, the balance between empowerment and protection emerged as the key challenge to the implementation of the empowering ethos of the Act, and this seems most clear in relation to unwise decision-making. The right to make an unwise decision runs counter to the prevailing cultures in health and social care, which present barriers to implementation.

85. In social work, our evidence suggested, the prevailing culture was towards protection, for which the term 'safeguarding' was often used as a short-hand; others preferred to use the term 'risk-aversion'. The Law Society argued that those without capacity were denied "the dignity to make the choices and take the risks that others can".[128]

86. Dr Ruth Allen, representing the College of Social Work, conceded that "the MCA is not yet fully understood across any profession as an enabling piece of legislation … it is often seen as bolstering the desire to protect and, in some ways, control people's choice making".[129]

87. Others argued that the protection of vulnerable adults was a legitimate consideration: "most practitioners would feel more comfortable defending a decision to protect rather than being accused of being neglectful".[130] Mr Robert Nisbet of the British Association of Social Workers said that social workers veered "towards overprotection and safeguarding", giving an example of an adult with learning disabilities who might make the decision to remain in a physically abusive relationship, and expressed the difficulty a social worker would face in response:

"it is very difficult to stand up and say, 'We have assessed this person. We may disagree with what they are doing, but it is their right, as it is my right, to make mistakes in their life and to make unwise decisions.' I have not seen many people able to do that. Organisations do not permit it, because they are very fearful of scrutiny and the media is very, very powerful, as we have seen over many years".[131]

88. Similar pressures were highlighted by Lancashire County Council: "enabling someone to take risks is scary, and workers can be under tremendous pressure from families and within their own agencies—what if something goes wrong? Whose name will be headlined? The MCA has not made us any less risk averse".[132] The role of the media in promoting a culture of risk-aversion was also mentioned by Camden Safeguarding Adults Partnership Board and Cambridge House Advocacy Service.[133]

89. We were told that in health care "the paternalistic, medical model of care is still dominant".[134] The British Psychological Society agreed that "there is still a tendency to act in a paternalistic/authoritarian fashion and make decisions based on the staff's perception".[135] Gloucestershire MCA Governance Group found that a "protection imperative" often existed, especially in hospital settings,[136] while Kent and Medway MCA Local Implementation Network suggested that many clinicians still find it difficult to "let go of their paternalistic ways".[137] A study of health care staff conducted by Dr Julie McVey found a paternalistic model of care where best interests decisions were favoured over someone being found to have capacity and making an unwise decision.[138] This was also demonstrated by the evidence presented in paragraphs 75-76, where capacity assessments were seen to be triggered when a course of treatment was refused. Paternalism in medical settings is discussed in more detail in the following section.

The fourth principle: best interests

90. As with the other principles, the best interests principle is widely praised but its implementation is problematic. The British Institute of Learning Disabilities told us that "The centrality of the person's wishes, beliefs, values and history within a best interest view is very good. However, all too often 'best interests' is interpreted in a medical/paternalistic sense which is wholly at odds with that set out in the Act".[139] Dr Claud Regnard put it more strongly: "the term 'best interests' is probably the most abused and misunderstood phrase in health and social care. It has too often been the vehicle for poor decision-making as described in many of the cases in Mencap's Death by Indifference reports".[140]

91. The best interests principle in section 1(5) requires that "An Act done, or a decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests." The provisions for determining best interests are set out in detail in Section 4 of the Act (see Box 5: Best Interests, section 4). It appears that in many cases these provisions, especially those concerning the wishes and beliefs of P, and consultation with family and carers, are not well known or used.

BOX 5

Best Interests, section 4

(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of—

(a) the person's age or appearance, or

(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.

(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.

(3) He must consider—

(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and

(b) if it appears likely that he will, when that is likely to be.

(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.

(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.

(6) He must consider, so far as is reasonably ascertainable—

(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(7) He must take into account, if it is practicable and appropriate to consult them, the views of—

(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,

(b) anyone engaged in caring for the person or interested in his welfare,

(d) any deputy appointed for the person by the court, as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).

(8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which—

(a) are exercisable under a lasting power of attorney, or

(b) are exercisable by a person under this Act where he reasonably believes that another person lacks capacity.

(9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.

(10) "Life-sustaining treatment" means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.

(11) "Relevant circumstances" are those—

(a) of which the person making the determination is aware, and

(b) which it would be reasonable to regard as relevant.

92. We heard evidence that, especially in medical settings, the concept of best interests as defined by the Act was not well understood, in part because it was at odds with the concept of best interests as it is used in a medical or clinical sense. Headway, a charity for brain injury patients, reported feedback from one of their members whose sister was in a minimally conscious state following a catastrophic brain injury:

"Staff defined a 'best interests' decision as a 'clinical decision'—and just saw it as a matter of clinical judgment. From the moment of my sister's accident it was as if she belonged to them, they were not interested in what we knew about her and her wishes. I can understand this in the immediate emergency but this went on for months and months, it was a constant battle".[141]

93. Moira Fraser of the Carers Trust reported that families had the impression that "professionals pick and choose when to involve them".[142] Furthermore, families who disagreed with the decision being made found they were excluded on the grounds that "they are not acting in the best interests of the person whom they care for".[143] Mencap reported that families of adults with learning disabilities were not being consulted by medical staff as they should be and as a result many "think that the only way that they can assist in the decision-making of an adult with a learning disability is by becoming a welfare deputy".[144]

94. One witness, who subsequently obtained a welfare deputyship for her sister, after a serious accident left her in a coma, described her family's experience of dealing with health care staff:

"We did not know the system and were in trauma from the accident so it was hard to effectively represent her in the face of institutional evasion and obstruction. We also had no status with the treating clinicians and the culture within this setting seemed to be to treat families as volatile and untrustworthy—lacking capacity to represent their relatives' views until proven otherwise. One of the treating clinicians informed me later that it usually took her about a year to get to know a family and decide whether or not to trust their input".[145]

95. According to the Carers Trust and Carers UK, one of the difficulties in challenging the misuse of the Act was the general lack of awareness of its provisions, particularly the best interests decision-making process, among family members and carers.[146] We heard evidence that families were surprised to discover that they were not the decision-maker on behalf of their relative: "many family members still feel they have an inherent right to make decisions on someone else's behalf; this appears to be particularly evident in families of a person with a degree of learning disability".[147] Hft, the charity supporting people with learning disabilities and their carers, said that "Parents (or other family members) need to know that, by law, they are no longer decision-maker by default as is often the case when your son/ daughter, brother/sister is a child".[148] Oi Mei Li, Director of the National Family Carer Network, referred to this change as "a complete culture shock" which had "an enormous emotional impact on family carers".[149] Professor Celia Kitzinger and Professor Jenny Kitzinger pointed out that "even academic audiences are surprised that next-of-kin cannot make decisions for another adult".[150] This is borne out by research cited by Compassion in Dying, which indicated that 53% of the public wrongly believe they have the legal right to make end of life treatment decisions for their next of kin.[151]

96. Tussie Myerson, the parent and Court-appointed deputy of a person with "complex and life limiting" conditions who lacked capacity, argued that not enough was being done to inform families about the Act. She stated that "Leaflets are no good" and that there was a need for "a structured 'marketing campaign' through hospices, schools, social workers and even Consultant doctors to make parents aware".[152]

97. Evidence also revealed confusion over who was responsible for making a decision in a best-interests process. North Yorkshire County Council said that greater clarity was needed, and that "the examples given in the code do not reflect the complexity of circumstances that can surround many decisions to be made".[153] A joint submission from the London Borough of Hammersmith & Fulham, the Royal Borough of Kensington & Chelsea and the City of Westminster concurred, and suggested that ongoing training and support was needed "to ensure that it is clear who the decision-maker is".[154] Toby Williamson said that, particularly in complex decisions involving multi-disciplinary teams, "staff were struggling to understand who a decision-maker is and what is the exact decision that was being made".[155]Evidence from Sense agreed: "in best interests meetings involving more than one agency … it can be extremely difficult to determine who the decision-maker should be".[156]

98. There were also concerns that a decision-maker could assume too much power, and sometimes on the basis of questionable legal authority. Sheffield Safeguarding Adults Board pointed out that "once a person has been deemed to lack capacity to make a decision they become vulnerable to the opinion of the decision-maker and when those decisions are not reflective of their best interests it often leaves them powerless to challenge".[157] This was echoed by other witnesses who expressed concern over the use of the 'general defence'—the term often used to describe sections 5 and 6 of the Act (Acts in connection with care or treatment and Section 5 Acts: limitations)—which provides protection from liability for carers and others to carry out acts in relation to a person who lacks capacity. The pre-legislative scrutiny committee foresaw problems with these sections, which were at the time entitled 'the general authority'. They worried that it would wrongly give the "impression that the general authority would be assumed by a single individual who would then take all decisions on behalf of an incapacitated individual".[158] In response, the Government removed the term 'general authority' from the Bill, but concerns have persisted since implementation. Professor Phil Fennell and Dr Lucy Series described the general defence as providing "tremendous discretionary power" which was "not subject to any routine monitoring".[159] Liberty expressed concern about the very wide range of decisions which could be made under these sections, combined with a "worrying lack of oversight".[160]

99. The centrality of P at the heart of the best interests process has been given a new impetus by the recent Supreme Court judgment in Aintree University Hospital Foundation Trust v James.[161] The importance of this judgment, which was the first time the Supreme Court had considered the Mental Capacity Act, was highlighted by the barrister Alex Ruck Keene, who said that Baroness Hale of Richmond had "emphasised that the purpose of the best interests test is to consider matters from the patient's or from the person's point of view".[162] Mr Ruck Keene suggested that "all those who practise in the area will be emphasising that message loud and clear".[163] Kirsty Keywood told us that placing greater emphasis on the role of P in the best interests process, while simultaneously diminishing the importance of objective criteria, could achieve a closer alignment with the requirements of the United Nations Convention of the Rights of Persons with Disabilities, since the will, rights and preferences of P should be "the starting point for any kind of determination of what is best for an individual".[164] This would ensure that genuinely substituted decision-making was limited to a very small number of people who had no way to communicate their wishes.

100. In the social work context much evidence focused on the misuse of the best interests principle in order to justify decisions taken by local authorities about an individual's care, without carrying out the necessary consultations, and often against the wishes of P and P's carers. Families believed what they were told: "The social worker said they are using Section 4 of the Mental Capacity Act to do this".[165] The Mental Health Foundation argued that there was a risk of the best interests principle becoming "a tool to justify decisions to safeguard people".[166] The case of Steven Neary illustrates this:

"In our case, a decision was made from very early on—that Steven could not return home and instead [should] be sent to a residential establishment. Neither Steven, myself or any other independent person were involved in that decision. Having made that decision, the [local authority] then launched into proving that Steven did not have the capacity to decide where he wanted to live".[167]

101. The overlapping of best interests decisions with capacity assessments has been noted in research carried out by the Mental Health Foundation, who referred to it as the 'concertina effect'—a process whereby the steps set out in the principles of the Act are rolled into one, effectively negating the empowering ethos and being led by the outcome decided on by professionals.[168] The impact of resources on such decisions was raised by Nicola Mackintosh (paragraph 65), as was the perception of risk by many other witnesses (see paragraphs 84-89); both are relevant in illustrating the misappropriation of best interests decision-making.

The fifth principle: the least restrictive option

102. The final principle in section 1 of the Act, often referred to as the 'least restrictive option', requires that "Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action". We received less evidence on this principle specifically, although the evidence we did receive tended to reiterate the themes already identified: the tendency by professionals to protect rather than to empower, the dominance of risk-averse decision-making, the use of the Act to justify decisions already made, and the failure to follow the best interests process and place P at the centre of the decision.[169] The 'least restrictive option' principle was raised explicitly in relation to care for dementia patients. Professor Jones referred to research "which showed that 60% or thereabouts of patients with dementia who were admitted to hospital were admitted from their home, but only 30% were discharged back to their home".[170] This raised the question of whether the least restrictive option in such cases—a return home, with support—was adequately and routinely considered, and the extent to which concerns regarding risk as well as resources were allowed to lead decision-making.

Conclusions and recommendations

103. We acknowledge the wide-spread support which the Act enjoys among stakeholders. It is described in unusually enthusiastic language. It is disappointing therefore that the implementation of the Act has yet to receive the same acclaim.

104. The empowering ethos of the Act has not been widely implemented. Our evidence suggests that capacity is not always assumed when it should be. Capacity assessments are not often carried out; when they are, the quality is often poor. Supported decision-making, and the adjustments required to enable it, are not well embedded. The concept of unwise decision-making faces institutional obstruction due to prevailing cultures of risk-aversion and paternalism. Best interests decision-making is often not undertaken in the way set out in the Act: the wishes, thoughts and feelings of P are not routinely prioritised. Instead, clinical judgments or resource-led decision-making predominate. The least restrictive option is not routinely or adequately considered. This lack of empowerment for those affected by the Act is underlined by the fact that many responsible for its implementation continue to consider it as part of the safeguarding agenda.

105. The presumption of capacity, in particular, is widely misunderstood by those involved in care. It is sometimes used to support non-intervention or poor care, leaving vulnerable adults exposed to risk of harm. In some cases this is because professionals struggle to understand how to apply the principle in practice. In other cases, the evidence suggests the principle has been deliberately misappropriated to avoid taking responsibility for a vulnerable adult.

106. The rights and responsibilities of the different stakeholders which are properly conferred under the Act are largely unknown. This makes the effective exercise of those rights, and the proper discharge of those responsibilities almost impossible.

107. The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P's wishes and feelings.

108. A fundamental change of attitudes among professionals is needed in order to move from protection and paternalism to enablement and empowerment. Professionals need to be aware of their responsibilities under the Act, just as families need to be aware of their rights under it. We consider how this can be achieved in the next chapter.

109. In the first instance we recommend that the Government address as a matter of urgency the issue of low awareness among those affected, their families and carers, professionals and the wider public.

110. We reiterate that our findings on the implementation of the core principles concern the operation of the Act principally in health and social care settings. We have very little evidence on the use of the core principles in other sectors. However, given the poor levels of knowledge and understanding in the sectors on which the Government targeted its implementation programme, we have no reason to believe that the Act is operating well in other areas. We recommend the Government consider urgently the need for assessing usage of the core principles across the range of decisions affecting people lacking capacity, including in sectors such as banking and policing.

40 Q 26. Back

41 Q 74. Back

42 Michael Loftus. Back

43 Peter Edwards (Director, Peter Edwards Law). Back

44 Q 185. Back

45 Q 185. Back

46 Department of Health, Government Response to the Confidential Inquiry into premature deaths of people with learning disabilities, July 2013: https://www.gov.uk/government/uploads/system/uploads/attachment_data/ file/212077/Government_Response_to_the_Confidential_Inquiry_into_Premature_Deaths_of_People_with_Learning_Disabilities_-_full_report.pdf. Back

47 Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities, July 2008 (sometimes known as the Michael Review, after its chair, Sir Jonathan Michael): http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_106126.pdf. Back

48 Ibid., p 53. Back

49 Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry, HC 898-I, II & III: http://www.midstaffspublicinquiry.com/report. The Government response can be found in: Department of Health, Hard Truths: the journey to putting patients first, January 2014, Cm 8777-I & II: https://www.gov.uk/government/publications/mid-staffordshire-nhs-ft-public-inquiry-government-response. Back

50 Patients First and Foremost: The Initial Government Response to the Report of The Mid Staffordshire NHS Foundation Trust Public Inquiry, March 2013, p. 5, Cm 8576: https://www.gov.uk/government/publications/government-initial-response-to-the-mid-staffs-report. Back

51 Healthwatch England, Annual Report 2012/13, October 2013. Presented to Parliament pursuant to section 45 C (2) of the Health and Social Care Act 2008 as inserted by the Health and Social Care Act 2012: http://www.healthwatch.co.uk/sites/default/files/full-report-2012-13_0.pdf. Back