Mental Capacity Act 2005 (Select Committee Report)

Baroness Finlay of Llandaff Excerpts

Tuesday 10th March 2015 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

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.

--- Later in debate ---

[Baroness Warnock (CB)]

My Lords, the Government are right in their response to insist that the Mental Capacity Act is innovative, in that at the heart of the Act lies the so-called empowerment ethic. This is entailed in principle (3) of the Act, which states:

“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”.

This suggests that it is recognised that mental capacity, as my noble friend Lady Finlay said, is fluctuating and depends on when the person is being assessed. But when the time comes that a decision has to be made on a person’s behalf, then principle (5) comes into operation—namely, that the decision must be made “in his best interests”. Here, like my noble friend Lady Finlay, I find the troubles really begin.

The Government apparently agreed with the committee that more social workers principally—but other people as well—needed to be trained to be assessors of best interest. Of course, this is very difficult because, even with the best training in the world, to make a determination of somebody’s best interest is to make a value judgment; and whatever the training, it remains true that the values of the person making the determination of best interest may be different from those of the person whose interest is in question. For example, it is perfectly possible that the person who is the trained assessor of best interest may think that it is always, or nearly always, in the best interest of a patient who is incompetent to stay alive. On the other hand, the patient himself, if he had been able to make a decision, may have disagreed with that and may have preferred to be allowed to die sooner rather than to live on in a state of incapacity, humiliation, distress and, of course, pain.

It cannot be overemphasised how slippery and evasive the idea of best interest actually is, and lawyers have long disputed—certainly since the Bland case, and probably before—what actually counts as best interest and whether, in the case of Bland, for example, he could be said to have had any interest at all, being in a permanent vegetative state. This is a huge difficulty that really cannot be brushed aside. We need more trained people. The notion of best interest must be addressed in a different way. This is what makes the question of advance decisions—although I infinitely prefer the new title that my noble friend suggested—a matter of enormous importance. Therefore, the question of so-called advance directives is central to the interpretation of the Act and what the Government propose next to do.

It is not only the public at large who are ignorant of, and therefore careless of, making such advance directives but, disgracefully, the medical profession and other professionals who will be involved with people trying to make such decisions. It is also true that these professionals, including doctors, are unwilling to discuss any such matter. I remember the acute embarrassment of my own then GP when I asked him to keep a copy of the living will, as it was then called, that I had made. He did not want to think about it.

In their response the Government were right to say that the royal colleges have a great part to play, particularly the Royal College of General Practitioners. The college will not like being told what it ought to do, but it has a duty to influence all GPs to keep in their surgeries information about how to make such an advance decision. This is genuinely a matter of urgency because, whatever the status is thought to be of an advance decision, it must be taken into account, at the very least, if it has been made properly, if it seems to be applicable and, most important, if it is known at the time of the patient’s deterioration, or first entry into hospital or care home, that he or she has made such a decision.

This is part of the difficulty. There must be an easily accessible register which shows who has or has not made such a decision. As my noble friend suggested, there must of course be a way in which the person, whatever his capacity, can show that he has made such a decision. Therefore one needs something like a donor card or a bracelet that he can wear to say that he genuinely has made such a decision. This will have to be formalised so that it is known to be genuine, and this will be backed up by the register. These matters are of enormous importance because the question of the early, well formed wishes of the person under consideration must be taken into account. After all, this is the heart of the Mental Capacity Act.

It is a rather fiddly little reform that must be taken and GPs are, whether they like it or not, at the heart of it. After all, their surgeries are absolutely stuffed with leaflets and instructions about what to do if you have got diabetes or a mad mother and so on, but not anything about how to record your wishes about your own care and your own decision to refuse treatment in certain circumstances. There is nothing about that at all and I honestly believe that most people do not know that they have, first, a right to refuse treatment and, secondly, that there is a way of making this known. This is the most important issue that the Government must address through general practitioners.

I entirely support what my noble and learned friend Lord Hardie said about the disappointment that it seems that only a forum will be set up. The word “forum” sends shivers down my spine because it means nothing except a talking shop with no powers that will finally wither away out of alienation and boredom.

[Baroness Finlay of Llandaff]

I listened with great interest to what the noble Baroness said. Will she clarify whether she agrees with me that a so-called best interest decision that leaves a patient in pain and distress is actually not a valid best interest decision because it is not in the interests of the person to be left in pain and distress? That decision would, therefore, be open to challenge?

[Baroness Warnock]

I entirely agree with my noble friend.