This is an easy read version of an article about people who cannot make a decision. You can read the original article in the Journal of Social Welfare and Family Law.
Part 1: When do we have to make decisions for other people?
The law in England says sometimes people cannot make decisions for themselves. Sometimes people cannot make decisions because they do not understand things. Sometimes people who are very sad or very angry cannot make decisions because their feelings are so strong. Sometimes people cannot make decisions because they cannot remember what they need to know to make decisions.
When we cannot make a decision the law says other people can make the decision for us. Usually this will be someone we know well and who knows about the decision too. If someone does not understand whether they need medicine a doctor may make the decision for them. The doctor must make a decision that is in the person’s best interests.
The law says that in deciding what is in someone’s best interests the person making the decision must think about what the other person would like. If the doctor gives someone medicine she must think about what the person likes. For example some people do not like tablets. The doctor could give them a medicine which comes as a syrup instead.
Part 2: What is this article about?
Sometimes we do not know what is in someone’s best interests. When this happens the person who has to make the decision can ask a special Court to tell them. This court is called the Court of Protection.
Judges in the Court of Protection make decisions for people who cannot make a decision for themselves. I wanted to know how the judges think about what people who cannot make decisions would like.
I looked at lots of decisions that the judges had made. These decisions are called cases. Cases are very important. Judges have to look at cases that have already been decided when they make decisions. This is to make sure we treat cases that are the same in the same way.
In most of the cases the judges do not talk about what the person who cannot make a decision would like.
There are some cases where the judge does look at what the person who cannot make a decision would like.
I looked at those cases carefully. Continue reading
The following post is a guest blog by Amanda Keeling and re-blogged from the blog of the Institute for Mental Health.
The Mental Capacity Act 2005 provides a framework for making a decision for an individual who is found to lack capacity to make it him or herself. Where an individual lacks capacity to make a decision, a decision must then be made in their best interests under s.4 of the Act. Section 4(6) provides that, when making a decision in someone else’s best interests, account must be taken of any past or present wishes or feelings, beliefs or values that would have influenced their decision, and any other factors they would have been likely to have taken into account if they had capacity.
Since the MCA came into force (and indeed, prior to the MCA as well), it has long been a subject of debate as to the weight that an individual’s wishes and beliefs carry in this process. Munby J (as he then was) gave two judgments in the years just after the MCA came into force which dealt with this factor, the first being Re MM; Local Authority X v MM (by the Official Solicitor) and KM  EWHC 2003 (Fam), at paras -, the second being ITW v Z & Ors  EWHC 2525 (Fam), which restates Re MM and adds several elements. Re MM noted that P’s wishes and feelings should always be a significant factors, but were not necessarily determinative. He pointed to the need to consider the degree of P’s capacity when expressing wishes and feelings, and the impact of not giving effect to them. ITW v Z and others added the caution that the relevance of wishes and feelings will be case by case, and that additional factors to consider are the strength and consistency of those views over time, how rational, sensible, responsible and pragmatic the views were, and the possibility of actually implementing the action necessary to respect the views.
Munby J was, in that case, specifically dealing with P’s current wishes, when he/she lacks capacity, but those factors are equally applicable to thinking about the relevance of past wishes and beliefs; in particular, where someone has made a strong statement refusing a particular treatment, and subsequently loses capacity, what weight should that statement be given?
Sections 24-26 of the MCA outline the process of ‘advance decisions’ – these are decisions which are binding on medical professionals with regards to refusal of treatment where the issue arises once P has lost capacity. For advance decisions to be binding on professionals, they must be ‘valid and applicable’ to the circumstances, and must be signed by both P (or P’s representative) and a witness – any other written statement is simply something to be taken into account as part of s.4(6).
However, a recent decision in the Court of Protection, published a few weeks ago, suggests that spoken statement can have a similar effect as advance decisions, although presumably they are not legally binding in the same way.
Newcastle Upon Tyne Hospital Trust v LM  EWHC 454 (COP) centred on the time-honoured issue in medical law of the giving of blood products to Jehovah’s Witnesses. LM had been admitted to hospital in early February, suffering from a duodenal ulcer, which was causing dangerously low haemoglobin levels. During the next few days, LM met with several medical professionals to discuss her treatment options, and she was very clear that she did not wish to accept blood products. She was also seen by a psychiatrist, due to her presenting with confusion on arrival, and a history of depression and schizophrenia. She was found by the psychiatrist to be well, and the physical medical professionals she spoke with felt that she understood the implications of refusing blood products and had capacity to make the decision.
Subsequently, LM’s condition deteriorated significantly, she required intubation, ventilation and sedation, and clearly lacked capacity to make any further decisions. Her anaemia became profound and life-threatening, and it was clear that a blood transfusion was really her only hope of survival, but that even then, her condition may not have improved. In addition to her statements during the preceding days, the clinical team had been aided by information from members of LM’s congregation, who affirmed the strength of her belief, and her views on the issues of blood products, which had been consistent since the 1970s. The medical team decided that her decision to refuse blood products should be respected, and sought a judgment from the Court of Protection affirming this decision, given its life-threatening nature.
Mr Justice Jackson, handing down his judgment sadly after LM had passed away, agreed with the decisions made by the medical staff. He considered that LM’s decision was ‘valid and applicable’, and it was correct to respect it. He considered carefully the issue of her capacity at the time the decision was made, and the long-held and consistent nature of her belief on the issue, and concluded that her refusal of consent ‘was applicable to her later more serious condition. There was no difference in kind and I am satisfied that she intended her decision to be effective in the circumstances that subsequently arose’ (para 21).
This is not a decision being made within the framework of s.4(6), but rather a clear spoken refusal of consent being treated with the same respect as a written, valid advance decision. Although not clear from the judgment, one presumes that such spoken words are not binding on professionals in the same way as a valid advance decision under ss. 24-26 of the MCA are, but it does give much more weight to such clearly stated advance statements. This is to be applauded – LM was making a decision about the specific treatment relevant to her condition with capacity, and very close to the time when the treatment actually needed to be given. Further, there was clear evidence that this decision was not being taken on a ‘whim’, but a long-held belief; why should it not have been respected, simply because it was not written in a specific format?
However, Jackson J does note that, had there not been such a clear, valid and applicable decision, and the issue had to be decided under best interests, he ’would have granted the declaration sought on the basis that to order a transfusion would not have been in her best interests. Applying s.4(6) in relation to the specific issue of blood transfusion, her wishes and feelings and her long-standing beliefs and values carried determinative weight. It is also of relevance that a transfusion might not have been effective to save her life’ (para 23, emphasis added).
We are now in a position where, when refusal of consent stems from clearly stated and long-held beliefs, it seems to have a ‘determinative weight’ when considering best interests. Further, where that refusal is made clearly, with capacity, with regards to specific treatment, it will be treated like a valid advance decision. However, there are still some questions; Jackson J adds in the point that it is ‘also of relevance that a transfusion might not have been effective to save her life’, but we are left wondering what the decision of the court might have been had it been a more certainly life-saving procedure. There is also the issue that this is an issue of religious conviction – would a long-held belief founded on other grounds be given the same respect?
I teach tort law to first year law students, and coincidentally last week our tutorial was on trespass and issues of consent and capacity, and even more coincidentally, the problem question we dealt with concerned the refusal of consent for a blood transfusion. However, the woman in the problem question was refusing the transfusion due to a fear of contracting CJD, despite the negligible risk of this happening. When we were discussing ‘Grace’s’ refusal of consent for the blood transfusion (claiming, somewhat dramatically, ‘I’d rather die than contract CJD!’), my classes were often split as to what they thought the doctors should do with regards to respecting that statement once Grace lost consciousness and the giving of a transfusion became a matter of life or death.
Some felt that such a clear decision should be respected, while others questioned the validity of this decision, as they were concerned she did not truly understand the risk. We explored the issue a little more, and considered the circumstances where such a statement might be respected – perhaps she had been a vet during the 1990s and seen many cows suffering with BSE, perhaps she had been a research scientist. I asked what if she had simply developed something of an obsession, and done a lot of research, and decided that death was better than the risk, however small, of living with and dying from CJD. On this, the classes were often split again, and I certainly would be interested in the view of a court. Would a deeply held belief such as this be respected, or would it be considered, in the words of Munby J in ITW v Z and others as not ‘rational, sensible, responsible or pragmatic’? That is a difficult question to answer, and certainly raises questions about the prioritisation of religious belief over others.
I’ve been completing a paper on the location of rationality in medical decision-making and the relationship it has to decision-making capacity.
Decision-making capacity is now a critical concept in English law because it underpins when treatment in an individual’s best interests may be authorised under the Mental Capacity Act.
But the question I want to explore here is what kind of thing is decision-making capacity? It is clearly an assumption of the law that the capacity to make a decision inheres to the individual even if the reason the person lacks capacity relates to undue influence placed upon her by another (see A Local Authority v A). But what kind of property of the person is decision-making capacity?
It could be like height. Height is a straightforward property of bodies. Measurement may still be problematic, because we still have to choose a unit to express the measurement in: inches, cm or hands if the thing you are measuring is a horse. But the idea is uncontroversial.
But decision-making capacity involves at least two parameters. To make a decision I have to understand and retain the information and I have to be able to use and weigh the information in the process of deciding. In the MacCAT-T, a validated clinical assessment tool for measuring decision-making capacity three parameters are assessed: understanding, reasoning and appreciation.
So perhaps decision-making capacity is more like the size and shape of my body. My body has a weight which like my height can be measured in pounds or kilograms. But it also has dimensions. If I only want to know my weight then kilograms are an adequate measurement. But if I want to know if clothes are likely to fit I need to know my dimensions.
And even armed with information about the dimensions of my body I may still struggle to find clothes that fit. Clothes have properties of their own which determine their fit such as their fabric and cut.
To rationalise this process for women the clothing industry applies labels to make it easier for purchasers to work out which ones might be worth trying. Clothes are labelled 8, 10, 12 etc. But the labels can become a source of confusion if they are mistaken for information about the woman’s size. It is widely accepted that it is desirable to fit into smaller clothing sizes because our society values thinness, the number 12 must be better than 14. But sizes evolve, they change over time, according to some people because womens body shapes change and manufacturers make clothes to fit a normal distribution across the population. Others argue this phenomenon is best described as ‘vanity-sizing’ because it is motivated by the manufacturer’s desire to flatter their customers that they remain a size 10 even when they have changed shape or gained weight.
Either way labels like 8, 10 and 12 are a clothing industry construction which women might reasonably perceive as containing more information about their bodies than they actually do [note I have no reason to think the phenomenon is exclusive to women but it is less likely to affect men whose clothing is still predominently sold by reference to physical dimensions].
Finally, how do we understand if a body’s mass is healthy. Here we reach the most troubled water of all. For this the standard tool is the Body-Mass Index, famously based on a equation developed in the mid-19th century to enable comparisons across whole populations. It only began to be used in the clinical assessment of individuals in the late 20th century. The BMI is a troublesome tool because, as with the MacCAT-T, it involves measurements, calculation and then an application to the individual. This application to the individual is based on standardised tables based on actuarial assessments of risk associated with different BMIs carried out in the 1950s. There is ongoing controversy over whether the standard cut-off point for assessing a BMI as overweight actually reflects a significant level of risk to the individual’s health.
Assessments of decision-making capacity run into the same problems, with the added complexity that there is no tool available to measure decision-making capacity which has been as widely validated as the BMI (and I’m willing to assert will not be since the idea is vastly more complex). The MacCAT-T does not give an output in terms of yes or no. It merely provides some numerical outputs concerning understanding, appreciation and reasoning which the clinician can take into account alongside the wider knowledge of the patient’s history, the magnitude of the decision to be taken and any other relevant factors.
Comparing the measurement of decision-making capacity with BMI exposes the socially contestable dimensions of the idea. There will always be borderline cases because the assessment relies ultimately on a judgement that this individual has crossed a threshold which another has not. But unlike BMI, there is no comfortable possibility of recourse to international committee of experts who will defend the idea that 25 is an appropriate threshold for the definition of ‘overweight’. In borderline cases resolution can only ever be achieved through the application of more clinical judgment.
And the problem of dimensions of the body resembles the problems created by poor information sharing leading to lousy therapeutic relationships leading to mistrust. The person assessed as lacking capacity is like the woman who no longer knows if she is an 8, 10 or 12. Capacity assessment can and should be a robust process founded upon transparent norms which are communicated early on. But it frequently is not.
But does this mean that capacity isn’t just a property of the person after all. It seems to me the answer must be yes and no. We could argue that capacity is interactive and that with support at any given time most people could make a decision. I respectfully disagree. I suspect that more people can make decisions than we adequately support currently. But there are clearly many circumstances where decision-making is impossible. I have epilepsy and sometimes experience psychotic symptoms and I’d say seizures, the immediate post-ictal state and acute psychosis fundamentally undermine my decision-making capacity.
But even if we assume, as I do, that decision-making capacity is at least sometimes a property of minds as well as the social world the tools we use to measure it are inherently social constructions. Just like the tools we use to measure the body. So which tools we select and when we choose to employ them suddenly become very politically-laden decisions.
My own view is that the idea of capacity is as socially constructed as the idea of bodyweight but this does not undermine the need to assess it or make decisions on the basis of these assessments (or as my favourite social theorist Niklas Luhmann put it enigmatically ‘Reality may be an illusion but the illusion itself is real’). But we need to be constantly monitoring the way in which social and political factors interact with our understanding of what it means to have capacity to ensure that current assessment practices remain adequate.
‘I might, if it is published, deplore Mostyn J’s reasoning about the mother’s best interests or her capacity…’
Showing uncanny prescience Mostyn J’s judgment and the transcript of the case of Re AA have now been published and I deplore them (warning pdf).
I wanted them to be better than this. But the judgment does not really explain how the test of capacity in s. 2 Mental Capacity Act applies to AA and reading the transcript my suspicion is that he has not assessed AA’s capacity properly, and may even have confused it with her best interests.
What did the judge know at the point he made his judgment?
AA was detained in hospital under s.3 of the Mental Health Act. She had a ‘schizophrenic disorder which was psychotic in nature’, and she was experiencing delusions.
She had had two previous births by caesarean section increasing the risk of a uterine rupture in this pregnancy to something close to 1%.
At the time of the hearing she was 39 weeks pregnant and it was proposed that the caesarean be performed the following day.
Her doctors favoured a planned caesarean performed under a general anaesthetic because they feared that if she was allowed to go into labour spontaneously she might lie about the onset of labour and interfere with efforts made to help her. Planned caesarean would allow them total control of the process and thus make the process maximally physically safe.
The finding of lack of capacity
In the judgment Mostyn J. tells us that he finds AA lacks capacity ‘within the meaning of s.2(1) MCA. But s.2(1) MCA only tells us that for a person to lack mental capacity in English law they must have a ‘an impairment of, or a disturbance in the functioning of, the mind or brain.’
AA certainly met this requirement. But the judgment does not tell us why she met the further requirements of being unable to make a decision under s.3 MCA. To be unable to make a decision a person must be unable to understand, retain, use or weigh or communicate their decision even after all necessary practical assistance has been provided to them. The judgment contains no discussion of what efforts have been made to discuss birth planning with AA, nor of whether she understands the consequences of refusing a caesarean section.
This does not mean AA had capacity at the time. Only that the judgment does not communicate that she did not.
The finding that a caesarean was in AA’s best interests
He further fails to apply the best interests test in s.4 correctly. He correctly identifies that the interests he is meant to take into account are primarily those of the mother and not those of the child who is, as yet, unborn. This is clearly a difficult task since in late pregnancy the interests of most women are intimately intertwined with those of their baby. There is a suggestion this was true for AA, because it is recorded in the transcript that she wants to see and hold her baby after it is born. Nevertheless the position in law is that we cannot start from the position of healthy baby = happy mother and work backwards to establish what the mother’s interests are.
We can however, identify in some cases that the mother’s best interests will prospectively be achieved through a healthy delivery and take that into account when making a best interests assessment. This is true when giving birth to a healthy child will be critical to the mother’s mental health for example. Unfortunately, Mostyn J. places a high value on this point but fails to consider any other evidence concerning the mothers past wishes, feelings, beliefs or values. Nor is any evidence from her family concerning her views on childbirth cited. Of course, this may not have been available, but its absence should have been noted and strongly regretted since it makes the decision reached under s.4 MCA largely artificial.
The actual best interests assessment to be reached here was a subtle one. Vaginal birth after caesarean is a normal practice and the risks of uterine rupture cited in the judgment are those given in standard literature given to women considering this. So if AA was refusing a caesarean this did not by itself indicate anything amiss. Many women with capacity with a history of previous caesareans choose to give birth vaginally every day. The case also reinforces the view that adults lacking capacity are not allowed to make the same risky decisions that are permitted to the rest of society.
As Lucy Series predicted, if AA had been present a better judgment might have been reached. There might have been practical difficulties in securing the physical presence of a woman with serious mental distress, currently detained who was also 39 weeks pregnant at this hearing. But the sheer absence of her voice in the decision being reached about her life is utterly inexcusable. We must do better than this.
Finally, the thing that utterly baffles me about this judgment is Mostyn J’s objection to the placement in a Mother and Baby Unit, which is what her treating clinician had recommended and which would have been by far the best option for her since it would have respected the one wish we know her to have had – to have contact with her baby. I cannot make head nor tail of paragraph 7 of the judgment and can only identify uncharitable (to Mostyn J.) interpretations to place upon it. If anyone could help me out I’d be grateful.
This years Socio-Legal Studies Association Annual Conference is to be held at Robert Gordon University, Aberdeen.
Initial Deadline for submissions: 27 January 2014
The past year has been a lively one for those interested in mental health and mental capacity law. The Supreme Court has made its first decision interpreting the Mental Capacity Act 2005 (and presumably its decision on the meaning of ‘deprivation of liberty’ will be handed down before the Conference). The Court of Protection continues to cut new ground, most notably in areas relating to best interests. We continue to see the results of how the Scots legislation and the Mental Health Act 2007 south of the border, are working in practice (CTOs, anyone?). At the international level, it is increasingly clear that the UN Convention on the Rights of Persons with Disabilities is changing what is expected of mental health and mental capacity law.
While these legal developments provide a particularly apt occasion for the stream, papers from all areas of the law relating to mental health, mental capacity and mental disability are welcome, including:
• Civil, criminal or informal mechanisms of control, in hospital or in the community
• The law relating to incapacity benefits, and other issues relating to care and programmes in the community;
• Issues relating to discrimination on the basis of mental disability (be it mental health issues, psychosocial disabilities, or learning disabilities)
• International law relating to people with mental disabilities;
• The role of administration or care-givers in the provision of services;
• The role or experience of service users in mental health care.
We impose no restriction on methodology: papers may be empirical, policy-centred, historical, analytic, traditional legal, or theoretical, in approach.
The SLSA is an interdisciplinary organization, and papers are welcome from any academic background, and from people at any stage of their career.
The stream co-ordinator is also happy to consider joint sessions with other streams in the conference where appropriate.
Please feel free to circulate this call for papers to interested scholars and other interested persons working in any discipline related to law and mental disability.
The stream co-ordinator is Peter Bartlett (email@example.com). Please feel free to contact him with enquiries about the stream. Proposals for papers should be submitted online through the conference website.
About the conference
The Socio-Legal Studies Conference occurs annually, in 2014 at the Department of Law at Robert Gordon University, Aberdeen. It is among the major socio-legal studies conferences internationally, attracting a wide variety of scholars, and subject streams within the conference span the range of topics in socio-legal studies.
All attendees (including presenters) must register for the conference and pay the required attendance fee. Reduced rates are available prior to 7 February 2014, and also for students and SLSA members. Scholarships are also available for students. For more information, see the conference web site.