Mental Capacity Act (MCA) NI Draft Code of Practice informal consultation

Transcription

1 Mental Capacity Act (MCA) NI Draft Code of Practice informal consultation GMC commentary Chapter 2: Principles 1 It is clear that according to the law an adult should not be regarded as lacking capacity to make a decision simply because their choice appears unwise to others, and the freedom to make unwise choices applies to people who for example have a learning disability or mental health condition if they have capacity to decide. 2 However, it s also highlighted in the draft Code that making an unwise decision could be a signal that the individual s capacity may be impaired to some degree. So there is a tension between the obligation to respect unwise but capacious choices, and the need for a professional (or other decisionmaker) to recognise when an individual lacks capacity so that the Act s safeguards are applied to support them. This tension leaves open the possibility that in practice some decision-makers may presume a lack of capacity to decide on the part of people with a learning disability or mental health condition. The risk of this happening may be heightened by the Act s capacity test which includes a requirement that an individual can appreciate the information they are given and the implications of their decision explained in the draft Code as the individual not showing signs of distorted or confused thinking (paragraphs ). So professionals (and other decisionmakers) are likely to benefit from additional advice about how to work with the principles in a non-discriminatory way. 3 We welcome the fact that paragraph 2.15 describes various factors, relating to an individual s behaviours and decisions, which it might be reasonable to treat as triggers for considering whether the individual lacks capacity.

2 4 Unavoidably, these factors are very subjective - essentially relating to whether the person concerned is repeatedly making a choice that puts them at risk, or their decision seems irrational or out of character, or they can t explain the decision. We see this as an area where it would be helpful to provide illustrative scenarios, to demonstrate ways in which professionals might approach shared decision-making with people who have learning disabilities or mental health conditions without putting those individuals under pressure to prove that they have capacity (paragraph 2.7). Chapter 3: Support 5 It seems helpful to reframe the requirement to take all reasonable steps to support an individual, as essentially a three step process. We know doctors (and other professionals) with very busy workloads value being able to quickly check and reassure themselves about any key legal requirements in their area of practice. 6 However, the rest of the chapter is unclear about how the three steps should be applied. It focuses on people who lack capacity to decide, and says little about how to engage with people who are presumed to have capacity but need help to absorb information and reach a decision. In addition, the language of the chapter is quite legalistic, and it tends to position individuals as passive for example, it refers to decisions being explained to the person concerned and doesn t describe ways in which they might be enabled to participate and make decisions where they can. This doesn t sit well with the standards we set for doctors on they should approach shared decision-making with patients. And since our standards were endorsed by the Supreme Court in 2015 (the Montgomery v Lanarkshire Health Board case), we think it might be helpful to explain how the MCA obligation to provide all reasonable support fits with the common law requirements on informed consent. 7 Paragraph 3.17 is not entirely accurate in what it says about the scope for sharing information about an individual who has capacity to consent and refuses permission for confidential information to be shared. Depending on the circumstances, there may be a legal duty to share or the public interest test may apply and provide a basis for sharing. We have covered this in our updated Confidentiality guidance and it may be helpful to signpost users of the Code to relevant professional guidance. 8 Paragraph 3.20 seems surprising in its advice that the duty to provide support - to enhance an individual s capacity to make a decision does not include support for everyday decisions such as when to eat and what to wear. It s possible that some patients with mental health or physical impairments will need support with some everyday decisions, even though the support may be fairly unobtrusive and routine. For example, a confused and vulnerable elderly patient in a hospital ward or care home may need help with eating and 2

3 drinking and other everyday decisions around self-care. In recognition of this, we set expectations on doctors to act to ensure that patients are receiving basic care such as support with eating and drinking (see Good medical practice 25(a) and End of life care 116). Chapter 4: Protection from liability 9 The opening paragraphs give the impression that only consent from an individual permits a decision-maker to take action. There is no reference to the possibility that other legal authority may exist, until much later in the chapter. Necessity 10 Paragraph 4.6 states that the provisions of the Act replace the common law principle of necessity (also in the emergencies section at 4.26). However, we note that the Explanatory Memorandum to the Act seems to take a different position? In healthcare settings where many urgent decisions must be made every day, any uncertainty about the legal authority to act would be unhelpful to staff and potentially impact the standard of care received by patients. Perhaps these paragraphs could be revisited? 11 Paragraph 4.8 is unclear but seems to suggest that protection from liability is only relevant to actions taken which directly intervene in a person s life, and this protection doesn t apply to decisions not to initiate an act or intervention. We reach this conclusion when we go on to read paragraph 4.12 which says that decisions not to provide a treatment which is medically unjustified do not need and do not qualify for protection. If this is an accurate understanding of the draft; we think this would be problematic for healthcare practice. 12 A clinician might decide not to offer a particular treatment as an option because they judge that, while the treatment may be clinically appropriate and successful in some cases, it would not be clinically appropriate and/or successful in the case of the particular patient. However, these clinical judgements are not always straightforward and different clinicians may reach different conclusions. So a decision not to offer a treatment to a patient on clinical grounds (i.e. the treatment is not clinically appropriate for them) may lead to disagreement and challenge as illustrated by high profile court cases involving DNAR orders which were made on clinical grounds. Bearing this in mind, it s not clear to us why decisions not to offer or initiate a treatment should be excluded from the Act s safeguards and the protection from liability it provides for healthcare staff. Reasonable belief 13 Paragraph 4.10 describes the factors that may provide evidence that a decision-maker had a reasonable belief to support them taking a particular 3

4 course of action. However it s unclear how these factors would apply to a doctor or other healthcare professional since they are so broadly described: What another reasonable person under similar circumstances would do. This might be problematic if there is no established norm or the norm does not represent good practice. More activity is needed for more serious acts. It would be difficult for a doctor to comply unless there is some explanation of what more activity might look like in different contexts. More is expected of a person with greater than average skills or special duties to society. This suggests that professionals would be held to a higher standard than an ordinary person but without explaining what the ordinary standard might be. 14 We think it s important that doctors have greater clarity in this area exposure to legal jeopardy in relation to the Act s requirements also exposes doctors to a risk of regulatory action if it is found that they have failed to comply with a legal duty. Role of the court 15 Paragraphs 4.17 and 4.22 do not make clear what role the court might play in support of effective decision-making. In recent cases in the English courts the judges have highlighted the significance of the Code of Practice to the MCA 2005 as a source of advice when they are reviewing cases, and they identified a gap in the advice the Code provides on when to involve the court. Young people and the Act 16 Paragraph 4.25 is not sufficiently clear when it comes to young people aged 16-17yrs and protection from liability for professionals making decisions about their care. Read with the fuller section on children and young people ( ) it seems that the Age of Majority NI Act only grants 16-17yr olds the right to consent to acts and interventions, so they might accept but not refuse treatment. 17 However, it is not made clear what this means for how professionals engage with 16-17yr olds under the MCA. Would doctors be expected to take all reasonable steps to support a 16-17yr old to understand the decisions they face, to be able to express their wishes and preferences, and to make a choice (following the principles in the Act), but then be able to turn to their parent to override the young person s choice if they say no to what the professional 4

5 believes to be best for them? If this is the case, then it s likely to damage trust between the doctor and young person. But it would also be out of step with the standards we set for doctors in our 0-18 year s guidance. 18 Since our 0-18 years guidance was published; the case law in England has continued to emphasise the increasing weight to be attached to the decisions of a maturing child, and the important role of the court in resolving difficult cases where there is disagreement between a young person and those who have an interest in their welfare. We also know from doctors feedback that decisions involving mature young people who want to refuse treatment can be very difficult to manage, especially if life-prolonging treatment is involved. So we think it would be helpful for the draft Code to lay out more clearly, how the different laws affecting the decision-making rights of mature young people will interact and, what that means for decisions about approaching the court for a ruling. Chapter 5: Capacity to decide 19 In paragraph 5.5 it is suggested that, as long as the relevant information has been provided to an individual in a tailored way, then they need only demonstrate an overarching understanding to be deemed to have capacity to make the decision concerned. The terminology might need further explanation, and we wonder whether English case law precedents may be helpful here, for example the case of LB of Redbridge v G (2014) P_17,_(2014)_MHLO_ You might want to consider in addition providing advice on what to do in situations where the individual concerned is reluctant to discuss their situation in any real detail or engage with a capacity assessment. We cover this in our Consent guidance where we say: 14. If, after discussion, a patient still does not want to know in detail you must still give them the information they need in order to give their consent to a proposed investigation or treatment. This is likely to include what the investigation or treatment aims to achieve and what it will involve, for example: whether the procedure is invasive; what level of pain or discomfort they might experience, and what can be done to minimise it; anything they should do to prepare for the investigation or treatment; and if it involves any serious risks. Appreciates information as relevant 21 Paragraph 5.9 does not offer a sufficiently clear explanation of how a decisionmaker (D) may reach a view that the individual (P) does or does not appreciate the information provided to them as being relevant to the decision they face. The draft gives two examples of factors to consider: 5

6 P can make a reasoned argument for the consequences P s argument lacks appreciation of normal factors such as other s feelings 22 However, these are subjective judgements which may have a discriminatory impact on individuals who have mental health conditions or learning disabilities. Therefore, it might be helpful, as part of the public consultation, to offer illustrative scenarios to demonstrate how professional decision-making could avoid this risk. Vulnerable adults 23 Paragraph 5.20 flags up the issue of assessing vulnerable adults as a concern, but does not say what particular steps may be necessary to protect their interests when assessing their capacity to decide. We are uncomfortable with the advice that where vulnerable adults have decision making capacity and refuse proposed interventions, nothing can be done. We wonder whether the High Court has inherent jurisdiction to act to protect a vulnerable adult from exploitation, abuse or undue influence, as is the case in England: Judgment Re DL in This was a case about a couple under undue influence from their abusive son where the court emphasised its role in situations where an adult may be incapacitated or disabled from giving or expressing real and genuine consent by reason of constraint, coercion, undue influence or other vitiating factors. The judgment concluded that the High Court has jurisdiction to act to protect vulnerable adults who have capacity under the MCA but who have been deprived of this capacity by undue influence. The primary purpose of the jurisdiction is to create a situation where the person concerned can receive outside help free of coercion, to enable him or her to weigh things up and decide freely what he or she wishes to do. 24 We are also concerned about paragraph 5.27 which addresses the situation of individuals who have fluctuating capacity to make decisions. It suggests that a decision made on their behalf at a particular point in time can be treated as a continuous long term act. This would permit the decision-maker (D) to keep existing arrangements (and treatments) in place, if the person recovers what D judges to be only temporary capacity to decide. This doesn t seem consistent with the spirit of the Act, or the provisions which make clear that fresh capacity assessments should be made if a person s circumstances change. Our guidance to doctors on how they should work with patients who have fluctuating capacity may be a helpful resource in supporting the aims of the Act (Consent paragraphs 66-70). 6

7 Chapter 6: Best interests advises that where a decision-maker has not taken a relevant factor into account when making a best interests decision, they may still be protected from liability if they were reasonably unaware of the particular factor. Professionals may find this a difficult standard to evidence. Is it more likely that the complaint about D would concern whether, in making a best interests judgement, D had deliberately overlooked a relevant factor or negligently failed to make enquiries which would have identified the issue? If so, it might be more helpful for the Code to encourage careful enquiry to establish what factors should inform a decision, and careful recording of the factors which were seen as relevant and how these were taken into account in the decision. Introducing the new best interests test 26 Paragraphs are focused on capacity issues and do not provide help with understanding the new best interests test. It may be possible to delete these paragraphs and start at paragraph Paragraph 6.20 sets out that a best interests decision is in effect a form of substituted judgement where the person making a decision (D) is determining what the individual (P) would have wanted in the circumstances. This doesn t seem quite right, and we are concerned it may be misleading for doctors and other professionals making best interests judgements. This is because: It is difficult to see how professionals who do not know P well would be in good position to make a substituted judgement, unless they simply accepted the views of the people close to P about what P would decide. This isn t consistent with good practice, nor with some elements of the best interests test as set out in the Act. Best interests decisions (as described in the draft Principles section) are decisions informed by and consistent with P s wishes and values which also take account of requirements to prevent harm to a third party and to choose the least restrictive option. This is not the same as making a substituted judgement as described at paragraph We suggest that the introductory paragraphs to this section should provide a brief reminder of why the Act has brought in a new concept of best interests which is very different from the approach in other jurisdictions. Then perhaps go on to set an expectation that people will make careful, well documented judgements (especially around the evaluation of possible harm to third parties and P) to build up a body of good practice in applying the new tests. It may be valuable to healthcare and other professionals, coming to the Act/Code without a good grounding in the history, to have a strong prompt that they may need to rethink ingrained ways of approaching best interests judgements. 7

8 29 Paragraphs are confusing. We think they are intended to establish a point of principle similar to the position we set out in our End of life care guidance, where we say that P s wishes tip the balance where the benefits/harms of an intervention are finely balanced. It may be useful to review the GMC wording at paragraph 65 of our guidance p. 30 Paragraph 6.25 suggests that a best interests decision may take account of the effects on loved ones this is not a term from the Act and no example is given to explain what this might mean in practice. If this is intended to flag up the best interests requirement to consider whether failure to act would result in harm to others causing harm to self (discussed at para 6.31); then perhaps this paragraph could be deleted to avoid any confusion. Least restrictive option 31 Paragraph 6.29 asserts that where there are two or more options with similar effects/outcomes, D should choose the least restrictive. However, in a healthcare context it s possible that an option which is the least restrictive may not be the one which is most closely aligned with P s wishes and preferences. It would be helpful to state whether in such circumstances clinicians could choose to work with the option most closely aligned with P s wishes and preferences over the least restrictive option. Harm to others and harm to self 32 Paragraphs address the issue of how the principle of harm to others causing harm to self should be applied in practice, but the advice does not deal with the concerns raised on previous drafts of the Code. 33 For example, we have queried whether a clinician contemplating treatment for P s health condition and considering whether non-treatment might result in harm to others ought to be concerned only with risks of serious physical or psychological harm? If so, it would mean that this aspect of the best interests test in a healthcare context would be used primarily in managing situations where some form of restraint or deprivation of liberty may be necessary (as well as the proposed treatment) to prevent P causing injury or death to others. These situations might arise most often where individuals have a mental health condition or temporary impairment of their mind or brain, as a result of which they are behaving in ways that pose a risk of serious harm to others. 34 The example in this section of the draft Code concerns an individual who is posing a risk of serious physical harm to others. In such a situation, it might be reasonable to conclude that the potential harm to P (imprisonment and its impact) is a harm that P would want to avoid if P had capacity to make that 8

9 choice. However, this example doesn t help clinicians to understand whether, and if so how, to apply the harm to others harm to self principle in cases where a third party would only be at risk of minor harm and/or the possible outcome of P s actions would not be as serious as imprisonment. 35 We think it will be important for the public consultation to provide some description of whether and how the harm element of the best interests test should be applied beyond the classic cases of risk of serious harm which arise within mental health services and the criminal justice system. 36 There are some specific issues in healthcare, not covered in the draft, where questions about including third party interests in a best interests decision are highly contentious, as we have seen in relation to the MCA 2005 and Adults with Incapacity Scotland Act These include: carrying out a living donor organ transplant to a close family member from a patient who lacks capacity to decide taking a patient s blood and/or testing their blood for HIV+ infection status, when a health professional has a sharps injury that exposes them to the blood of a patient whose infection status is not known. 37 We think that some consideration should be given to addressing these issues in the draft Code, so that the public consultation can explore professional and public views about what may be acceptable in these circumstances. Motivation 38 Paragraph 6.33 states that a limited number of cases involve futile or overburdensome treatment or no prospect of recovery. This doesn t seem right to us and we would recommend exploring this further with doctors in palliative care, intensive and emergency care, and GPs who support nursing and care homes. Chapter 7: Advance decisions 39 This chapter lacks clarity in the way it describes the common law position on advance refusals of treatment. And it doesn t provide a sufficient steer on how in practice professionals should make decisions about the status of advance decisions to refuse treatment, in light of current case law. 40 For example, paragraph 7.2 might be read as suggesting that individuals can only refuse a treatment in advance, if they have specified in advance the future circumstances in which they would they refuse the treatment. Our understanding of the case law (which underpins our current guidance for doctors) is that individuals can express an advance refusal in whatever terms they choose (as stated in your paragraphs ). However, the likelihood of an advance refusal being seen as effective (and therefore acted on) will be 9

10 increased by the person specifying in advance as much detail as possible of the circumstances in which they would want their refusal to be apply. 41 We think it may be worth revisiting this section of the draft Code, to separately explain what an advance refusal may be used for and the range of actions that a person might take which tend to increase its legal effectiveness. Advance decisions about CPR 42 Paragraph 7.3 could be unhelpful in the way it focuses on resuscitation as an example of advance decisions in action. Cardiac arrest may happen in a range of circumstances and an individual patient may want CPR to be attempted under some conditions but not others. So it may be important for an advance refusal of resuscitation to contain more information than that resuscitation is refused in case of cardiac arrest. In addition, it is not clear how the statement that advance decisions often form part of DNAR notes will be helpful to clinicians and other decision-makers. We wonder if the main aim of the paragraph is to convey that advance decisions can apply to a range of treatments including those which may prolong life, and that ADs might be recorded in a range of documents such as patient s living wills/directives, notes in a patient s record and on DNAR forms? Case law on advance decisions 43 Paragraph 7.8 sets out legal principles from the case law. However, 7.8 (f) is really unclear. Our understanding would be that, where a patient has made an advance refusal of a life-prolonging treatment (ADRT) if the details or intentions are unclear, or there is doubt or disagreement about whether the ADRT applies in the circumstances, then before any decision is made to act on their ADRT, it must be carefully scrutinised by the doctor (or other decisionmaker) and ultimately it can be referred to the court for a ruling. Excluded treatments 44 At paragraph 7.9 it is stated that effective advance decisions only relate to treatments that a person with capacity to decide could refuse. However, capacity to decide whether to accept/refuse a treatment does not depend on the nature of the treatment. We wonder if the point being made is that there are specific treatments which can be given to an individual with capacity even though they refuse the treatment, and therefore advance decisions cannot be used as a means of refusing such treatments. If this is the intention, it would be helpful to spell this out more clearly and give examples of the type of treatment concerned. 10

11 Assessing the status of an advance decision 45 Paragraph 7.12 is important for professionals as it is the only advice about how they can determine the effectiveness of an advance decision. However, the advice is limited and it seems to place responsibilities on professionals which (as we understand it) go further than the case law requires and may be difficult for them to meet. It is not clear how a doctor with limited or no previous knowledge about a patient could ensure that their advance decision was made voluntarily when they had capacity and was an informed decision - even if the doctor was able to take all of the steps set out at paragraph Chapter 8: Restraint; Chapter 11: Deprivation of Liberty 46 These chapters closely relate to each other, and it s important that they set out a description of the continuum between restraint and deprivation of liberty (DOL) which provides sufficient clarity for professionals, families and others about when the extra DOL safeguards must be applied. 47 We don t believe that the current draft provides sufficient clarity about the difference between restraint and DOL. For example, paragraph 8.4 mentions that restraint can include withholding information but there is nothing in the chapter to explain how this might be the case. Paragraph 8.13 states that restraint can occur in domestic settings with non-professional carers. This is likely to be very worrying for carers in this situation, and it doesn t seem sufficient to suggest that they seek advice from a professional, unless that professional (e.g. the person s GP) will be able to advise whether restraint or DOL is happening in practice and what the carer can do about obtaining DOL authorisation. Paragraph 8.14 states that whether a situation is restraint of DOL depends on various contextual features, but without some illustrative examples we suspect that it may be difficult for a decision-maker to feel confident about making a judgement call one way or the other. 48 Jumping to the chapter on DOL; we note from paragraphs that an individual may be deprived of their liberty in their own home, if they are bed-bound and receiving round-the-clock care from a health or social care provider, or if a person who lives with them receives carer s allowance to support them. These DOL situations appear to require Trust authorisation (paragraph 11.28)? 49 However, the section on authorisation ( ) says nothing about whether/how a person receiving carer s allowance might apply to a Trust panel. Is there an expectation that there would be some local authority support in place for the carer that might place the local authority under a duty to apply for authorisation? Or perhaps an expectation that the individual would be receiving GP/nursing care at home which would place an obligation on the healthcare professionals to apply to the Trust panel for authorisation? Given the serious implications for professionals if a DOL authorisation is required but not in place for a person who is deprived of their liberty, it seems important to 11

12 provide greater clarity on whose responsibility it is to apply for authorisation and how to do so. Chapter 10: Serious interventions, treatments with serious consequences 50 At paragraph 10.5 the draft points to the fact that the Act leaves a wide margin for the person proposing to do an act to determine what is a serious intervention or treatment with serious consequences. It then states that the intention is for a narrow interpretation to be applied to ensure that most acts do not fall into the category of serious. It would be helpful to reference any public statement by the government which supports this intention. 51 Paragraph 10.6 goes on to state that it is only the person proposing to do an act (D) who can determine whether it is serious (and therefore requires additional safeguards to be put in place).there clearly would be scope for D s view to be at odds with the view of the individual affected or those seeking to represent their interests. 52 Chapter 10 asserts in a number of places that a decision about what is serious will be a matter of professional judgement. However, the examples given of non- serious interventions and treatment consequences (at 10.9, 10.12, and 10.15) are not convincing or clear. For example, the argument that minor surgery is not a serious intervention because it involves little risk to life (10.9) isn t decisive, since the particular procedure might have serious consequences for an individual patient (e.g. prolonged serious pain) which would automatically make it qualify as a serious intervention according to the advice at paragraphs and If professional judgement is paramount (10.22) then it would be helpful to provide a wider range of worked examples - perhaps in an appendix or other guide - to support public and professional understanding of how decisions might be approached in practice. It might also be helpful to give more prominence to the statement sitting within paragraph which advises that a reasoned decision and an act based on a reasonable belief that an intervention is not serious will provide protection from liability, even if it is later decided that the decision-maker s judgement was wrong. 54 There is one point in this chapter which seems rather puzzling. Paragraph defines a treatment as an act involving an examination, procedure or therapy. It is not obvious why a definition may be needed and why it appears here. Chapter 12: Attendance requirements (ARs) 55 The advice here does not sufficiently address the concerns we raised on earlier drafts. 12

13 56 We believe that doctors and other healthcare staff may be vulnerable to criticism and legal action for continuing to impose an Attendance Requirement (AR) in circumstances when it might be unreasonable to expect them to know that the AR had already become invalid (paragraphs ). As we understand it, automatic revocation of an AR happens at the point where the patient recovers capacity to make decisions, or someone responsible for the patient s care decides that it is no longer in their best interests to be subject to an AR. It s possible that these events could occur before a different set of professionals take over the care of the patient, in circumstances where information may not be immediately available about revocation of the AR (e.g. handover from one doctor or multidisciplinary team to another). Are these circumstances where a doctor or team members could claim that they had a reasonable belief about the patient s situation, and therefore have protection from liability? Chapter 13: Community residence orders (CROs) 57 As we understand it, a CRO not only requires an individual to live in a particular place but can also set conditions such as requiring them to attend medical appointments or allow healthcare professionals access to their home. The Approved social worker who obtains a CRO for an individual can revoke the CRO immediately, but they don t seem to be under an obligation to inform the person s healthcare team. Are the healthcare team members able to claim a reasonable belief about the person s CRO status and therefore have protection from liability? Chapter 14: Formal capacity assessments 58 At paragraph 14.10, it seems inconsistent to insist that a refusal of an in person assessment must be respected, but the person s healthcare records can be accessed. Presumably the assessor would need to explore first whether the person had capacity to agree to access to their information? 59 There is no mention of possible informal processes/routes for an individual could challenge the outcome of an assessment (for example local mediation). Although advises that extreme cases might have to be referred to the court. We think it would be helpful to professionals if there were advocacy and conciliation processes to resolve disagreement and reduce the possibility of escalating capacity assessments to the courts. Chapter 15: Named Person 60 We think that this is an area where a flowchart would be helpful to make clearer the different levels of influence that a Named Person and an IMCA can have over decisions about P s capacity and best interests (i.e. that an IMCA s views will trump those of a Named Person). This might also help to draw out key points such as, what might qualify as a reasonable objection by the 13

14 Named Person and how to respond to it (including steps to resolve disagreement) before moving to appoint an IMCA (paragraph ); and the process for P to stand down a Named Person if P recovers capacity. 61 It is helpful that the draft restates the earlier position that, while the Act requires P to sign the form which P has to use to appoint a Named Person, if P cannot sign then a declaration will be acceptable. For avoidance of doubt, it may be helpful to clarify whether a health professional is expected to record a verbal declaration on the form or in a patient s health record. 14