Mental Capacity Act 2005 (Select Committee Report) — House of Lords, 2015-03-10
Topic: Health
Ilora Gillian Finlay (Crossbench, Unknown): My Lords, this important report shows that the laudable principles of the Mental Capacity Act have clearly not been realised as was hoped. I will focus on a few failures of the rollout in routine NHS care, particularly in relation to advance decisions to refuse treatment, advance statements of wishes and the issues around best interest decisions. I have a Question for Short Debate on DoLS next week, which this debate will inform The Government’s response and Box 1 of the excellent post-legislative scrutiny report both highlight the underlying principles for the purposes of the Act. They are clearly written, and when the Bill was going through this House they seemed clear. However, misunderstandings have continued, with a failure to acknowledge that mental capacity is decision and time specific, and frequently fluctuates in those who are seriously ill and undergoing treatment. Indeed, even small doses of commonly taken medication can sometimes alter and distort a person’s thinking One difficulty is that healthcare professionals are not trained to assess capacity over time. There is a risk-averse culture across the NHS, which leads staff such as nurses and social workers in particular to be fearful of assessing capacity in case their decision is subsequently tested or challenged. It becomes easier to delay or defer or say that it is somebody else’s responsibility, even though the Act very clearly states that the healthcare or social care professional with the patient should consider and act to enhance capacity for the particular decision to be taken. Why have expectations not been met? Perhaps it is partly through failure to deliver effective training. I have been involved in teaching medical postgraduates about the Mental Capacity Act and participated in training programmes run by others for health and social care professionals. I have been repeatedly struck by the ability of trainers to make this ever more complicated. Then the principle of empowerment of the individual becomes lost, as risk-averse staff excessively focus on process and on the duty to protect. We know from other aspects of healthcare that simple messages are effective, while complex messages create muddle, yet many of these training programmes seem inordinately complex. Trainees often seem to have a patchy understanding of the principles and keep searching for a tick-box type of framework, because they are risk averse; the culture around risk aversion has sapped their confidence in their own ability to assess, and they hesitate to enable others to meet the patient’s needs and wishes, particularly when these may seem unusual or could be classified as possibly a competent but unwise decision. The requirement to take all practical steps to help a person to take a decision are often inadequately attended to, so someone is labelled as lacking capacity when the decision could be deferred until acute delirium is resolved, for example, and even a hearing aid repaired I turn to the issue of advance decisions to refuse treatment. The terminology is indeed confusing, as the report highlights. The term "advance directives" is dangerous, because a person cannot direct somebody to do something to them at some time in future should they lose capacity. For example, a person with cancer cannot direct that they will have radiotherapy or neurosurgery in the event of getting a brain metastasis, but they may state in advance of the event of that happening they would not want surgery or another specific treatment. In other words, they can refuse treatment in advance. Perhaps the shorthand should be "advance refusals", not the misleading terminology of "advance directives" or "living wills", or whatever The principle of an advance refusal underpins "Do not attempt cardiopulmonary resuscitation" and also can underpin good care planning. A person may not want CPR, but simply to say "Do not attempt resuscitation" cannot be considered valid, because it is so non-specific that the clinicians cannot be held by law to withhold absolutely everything unless the documentation states what that absolutely everything is. Is it fluids in the event of dehydration, blood in the event of a massive haemorrhage, or antibiotics in the event of sepsis, and so on? All are resuscitative measures In Wales, our new national DNACPR policy will ensure that the patient has a copy of the form and that one form is used across all care settings, in line with the spirit of enforceable advance decisions to refuse treatment. An advance refusal must also be included in the electronic patient record as part of their care plan and must be available to everyone in hours and out of hours who might be involved in a patient decision. For example, an ambulance crew must know of a DNACPR decision when they are on their way to respond to a call. That is how it will be possible to avoid the distressing situation when an ambulance crew feels that it has to attempt CPR while the family are objecting Many people are fearful of heroic measures being undertaken in the event of them collapsing in the street, and I have explored whether a medic-alert bracelet or pendant might be a way of a person carrying their DNACPR policy with them. However, until its validity can be assured, there is little appetite for this idea. Advance statements of wishes were included in the Act, thanks to the tireless efforts of the noble Baroness, Lady Barker, who is speaking after me. She rightly argued for equipoise around advance decisions, and it is these advance statements of wishes that have formed the basis of good individualised care plans In my closing time, I want to deal with best interest decisions, which are poorly understood. As the report highlights, there is confusion between best interest decisions and clinical decisions; families do not understand why they are not a proxy decision-maker automatically, particularly as they will be asked to consent to organ donation, for example, after a person’s death. It is striking how often families want more intervention and treatment, not less, when end-of-life decisions have to be made, and how many times they have a complete misunderstanding of what is going on One difficulty often for patients and their families is lack of clarity over who exactly is in charge of care—in other words, which clinician at the end of the day takes the decision. I hope the initiative of the Royal College of Physicians of having the consultant’s name over the bed will help deal with this. It is important for all the disciplines in the clinical team to recognise that, ultimately, that one consultant will carry the can when a best interest decision has to be made and will be answerable for it As my colleague, Dr Regnard, who gave evidence to the committee, argued, a central role of this Act is when decision-making must determine best interests, as distinct from best clinical practice judgments. A best interest decision must be in the interests of that person and, when in doubt, there is a principle of default to life. Indeed, when somebody is dead they are no longer a person. Death is inevitable for us all, but as a corpse we have no personal interests. It was because of the anxiety over what happens if somebody is brought into an emergency department, and their family, or another person, come in waving an advance decision to refuse treatment and the inability to determine its validity, that we felt when the legislation was going through that the ultimate default to life was the safest option There is ongoing tension between safeguarding and empowering. There is an ongoing tension between confidentiality and openly discussing issues with people important to the person who has lost capacity for one or more decisions. I would suggest that we need to roll out clear straightforward messages across health and social care if we are to clear the current fog that surrounds this well intentioned and laudable piece of 2005 legislation.