right to refuse treatment | Child Protection Resource

How do we make decisions for people who can’t make them for themselves?

There are very many reasons why a person may lack capacity. This can be a condition present from birth or as a result of an accident. It can be enduring or it can be intermittent. All these circumstances will inform a decision about what is in the best interests of the person lacking capacity at any given time.

How to make decisions for people who lack capacity is particularly difficult when a person has an enduring lack of capacity and there is little evidence about their wishes and feelings. Theses cases raise the starkest issues around what ‘best interests’ should really mean. This is particularly so when we examine the extent to which ‘substituted judgment’ still forms part of the decision making process.

Different ways we can make decisions for people or ourselves

Advance decisions – MCA section 24 – 26

It is possible to set out your wishes when you still have capacity with regard to refusing medical treatment. But this is a very limited field; it only applies to a decision made in advance to refuse treatment; it does not give you the right to demand any other form of care.

Lasting power of attorney – MCA section 9

If you are over 18 and have capacity at that time, you can choose someone who will make decisions for you, should you lose capacity in the future. This person then has authority to make decisions about your personal welfare and property affairs. taking into account your wishes but making a decision using the best interests framework.

You can also make a written statement about your wishes and feelings which would be considered as part of the best interests decision making process but which would not have any legal authority.

Decision making before the MCA

Parens patriae and substituted judgment

Until 1959 the ancient doctrine of ‘parens patriae’ set out the legal basis for making decision on behalf of incapacitated adults. It means ‘the parent of the country’ and conferred on the Crown a power to protect the person and property of those who could not protect themselves. The exercise of this power transferred from the Crown to the chancery courts in the seventeenth century. It is not easy to discern how this power was exercised in early cases, but it is clear that the focus was meant to be on protecting the person who lacked capacity.

The Mental Health Act of 1959 abolished this jurisdiction. Unfortunately the new Act provided a framework for decisions to be made about financial matters, but did not set out how to deal with welfare issues, such as decisions about medical treatment.

The House of Lords in Re F [1990] 2 AC 1 decided that the way round this was to invoke the inherent jurisdiction and the doctrine of necessity to make declarations regarding the lawfulness of proposed medical interventions for those who lack capacity. However, that does not deal with the cases where ‘necessity’ is not the issue but a choice needs to be made between competing welfare aims.

Substituted judgment

‘Substituted judgment’ is one way of making decisions, by trying to make the choice that the person would have made, if they had the capacity to do so.

The test of ‘substituted judgment’ was part of the parens patriae jurisdiction with regard to financial/property issues, a landmark decision being that of Re Hinde in 1816 where Lord Eldon argued that the Court ‘looking at what it is likely the Lunatic himself would do, if he were in a capacity to act, will make some provision out of the estate for those persons.’

However, the obvious criticism of this method of decision-making is the enormous difficulty in trying to make a decision that a person ‘would have made’ if that person has never been competent and never expressed a view. Not only can that lead to contorted ‘reasoning’ but there is a clear danger is that it is instead the views of the decision maker, which will come to the fore, such views being formed by all the prejudice and assumptions of that person. This is particularly dangerous if the decision maker has some personal investment in any particular outcome.

The view of the Law Commission

The Law Commission Consultation Paper No. 119 (1991) (Mentally Incapacitated Adults and Decision-Making: An Overview) considered the ‘best interests’ and the ‘substituted judgment’ tests as two conceptually distinct standards. Not only is there is a different historical development and scope of application between the two tests, but also the ‘best interests test is ‘more paternalistic and restrictive’ and emphasizing what the decision maker thinks is objectively best for the patient.

The Law Commission preferred the ‘best interests test’ due to the difficulties inherent in substituted judgement but recognized that the ‘distinction between the two tests may be little more than a matter of language.’

Example from case law – ‘best interests’ before the MCA

Re A (medical treatment: male sterilisation) [2000] 1 FLR 259.

This case involved a 28 man who had Down’s syndrome and a severe impairment of his intelligence. He was cared for by his mother who made an application under the inherent jurisdiction hat he should have a vasectomy despite his inability to consent to the operation. This was in case he had a sexual relationship that would result in the birth of a child, as he could not understand the implications of this. A was sexually aware and the mother was conscious that given her age and health she would not be able to provide him with care for much longer and he would have to go into institutional care. She was worried about what would happen once he was no longer subject to her close supervision.

The court at first instance refused to permit this so the mother appealed saying that a vasectomy should be seen as ‘fool proof’ contraception and that was of benefit to A which outweighed the risks of a surgical procedure.

The Court of Appeal carried out a close analysis of the ‘best interests’ of A and considered that:

The concept of best interests is not limited to best medical interests, but includes medical, emotional and all other welfare issues.
A’s freedom would not be more restricted if he did retain his fertility, he would still be under close supervision.
A vasectomy would not reduce the risk that A could be exploited or contact a STI.
The issue of the impact of pregnancy upon his mother or the woman who was pregnant was not a relevant consideration in terms of his best interests, as his relationship with his mother would continue. The birth of a child or anyone disapproving of his conduct was not going to impinge on him.
The operation would cause him risk and discomfort.

Thorpe LJ set out guidance on how to evaluate what is in an individual’s best interests. He said that it is ‘akin to a welfare appraisal’ and that the judge should draw up a balance sheet. The balance sheet should consider the benefits and disbenefits of the decision and the likelihood of each occurring.

Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit. In the present case the instance would be the acquisition of foolproof contraception. Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant

I suggest this approach only because Sumner J’s judgment in the present case seems to me to concentrate too much on the evaluation of risks of happenings, some of which seem to me at best hypothetical. A risk is no more than a possibility of loss and should have no more emphasis in the exercise than the evaluation of the possibility of gain.

This case is a useful demonstration of the dangers inherent in ‘substituted judgment’ as it was clear from the mother’s evidence that she was also motivated by a profound distaste for the idea that anyone should have sex without being married. Issues around disabled people enjoying their sexuality are often very difficult for many people to contemplate and it is not hard to see how those inherent prejudices could infect any attempt by a decision maker to work out what was in the best interests of the particular individual.

Mental Capacity Act 2005 approach to best interests

Therefore, those drafting the Mental Capacity Act plainly rejected the notion of ‘substituted judgment’ and took on board Thorpe LJ’s hope of a statutory checklist.

The Act requires decision-makers to consider the views and preferences of the person who lacks capacity. However, section 4(6)(a) of the Act makes it clear that it is only one of the factors to be taken into account because some people have simply never been in the position to express any views about the issue to be decided.

The Act is designed to direct the focus away from the personal views of the decision maker and direct attention to both the current and future interests of the person who lacks capacity.

Section 1 of the MCA sets out that 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 and 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 Act does not attempt a definition of best interests – which is certainly impossible given the infinitely variable circumstances, which can arise. Instead, section 4 sets out a framework for making a decision in someone’s best interests.

You should consider ‘all relevant circumstances’ which is defined under section 4(11) as those which the person making the determination is aware, and which it would be reasonable to regard as relevant. The statute provides further guidance about what is likely to be a ‘relevant circumstance’, such as whether it is likely that the person will have capacity at some time and when that time is likely to be.

You must so far as is reasonably practicable permit and encourage the person to participate or improve his ability to participate as fully as possible in the decision making process.

If you are considering life sustaining treatment you must not be motivated by a desire to bring about the person’s death.

You must consider so far as is reasonably ascertainable;

The person’s past and present wishes and feelings, in particular whether there is a previous written statement made when he had capacity
The person’s beliefs and values that would be likely to influence his decision if he had capacity

The Act is also clear about what is NOT a relevant circumstance. Under section 4 (1) (a) and (b). You cannot make a best interests determination merely on the basis of:

The persons age or appearance
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.

Under section 4(7), you must take into account, if practicable and appropriate to consult them, the views of anyone the person identified as someone who ought to be consulted and anyone who is caring for the person or interested in their welfare, which includes anyone with a power of attorney and any deputy appointed by the court.

Recent Case Law on Best Interests

The reality is however, that we simply can’t escape an element of substituted judgment in those cases where we have no evidence about the wishes and feelings of the incapacitous person – either because they have never been capable of expressing the same or have never expressed an opinion on the issue in question prior to becoming incapacitous.

In Re X,Y and Z [2014] EWHC 87 (COP) is a neat illustration of how to examine ‘best interests’ when we have little or no idea what P would say about the situation. In this case a mother of three children had suffered a RTA that left her profoundly disabled and with an altered personality. This lead to the children suffering serious emotional harm whilst living in the same household with her and the LA decided that this situation could no longer endure and the children should go into foster care.

All agreed that it would be the best outcome for the children if their current nanny could be that foster carer; all agreed she was doing an excellent job, the children were attached to her and there would be no risk of splitting up the sibling group.

However, the mother’s situation was dire; the money awarded to her for her care after her RTA was running out and she had a normal life expectancy. This was a problem because the nanny was requesting a salary on top of the foster care allowances the LA would pay. Without a salary the nanny would no longer be able to pay into her pension or maintain her own flat which made her prospects on retirement look bleak.

The mother’s deputy thus argued that it was not in the mother’s best interests to secure the services of this nanny, as it would lead to the quicker depletion of her fund.

Baker J considered the case law regarding ‘best interests’ from paragraph 27 of his judgment. He derived the following principles:

There is no hierarchy between the various factors that have to be considered. But in some cases there may be a factor of ‘magnetic importance’ in determining the outcome – see the judgement of the then Munby J in Re M ITW v Z and Various Charities [2009] EWCH 2525 (Fam).
‘interests’ is not confined to ‘self interest’ – a court can conclude that it is in the interests of P to act altruistically. See observation of Morgan J in Re G (TJ) [2010] EWCH 3005 (COP).
P’s wishes and feelings and the beliefs and values that will be likely to be influence her decision if she had capacity must be considered by the court so far as reasonably ascertainable. They are not determinative but must be considered as part of the overall best interests analysis. The weight to be attached to this factor will always be case-specific and fact-specific.
In assessing the weight to be attached to P’s wishes and feelings the court must have regard to all the relevant circumstances.

In considering this issue of ‘relevant circumstances’ Baker J set out and relied upon the observations of Munby J in Re M (op cit) at para 35:

the degree of P’s incapacity, for the nearer to the borderline the more weight must be in principle be attached to P’s wishes and feelings….

the strength and consistency of the views being expressed by P;

the possible impact on P of knowledge that her wishes and feelings are not being given effect to

the extent to which P’s wishes and feelings are, or are not, rational, sensible, responsible and pragmatically capable of sensible implementation in the particular circumstances; and

crucially, the extent to which P’s wishes and feelings, if given effect to, can properly be accommodated within the court’s overall assessment of what is in her best interests.

Substituted Judgment – still relevant

Baker J was clear that the test under the 2005 Act was materially different from the test of ‘substituted judgments’ and agreed that the new approach was more akin to the ‘balance sheet’ approach.

But this does not mean that issues of substituted judgment have disappeared from our deliberations. Baker J referred to how Morgan J traced the evolution of the best interests test in Re G (T) (op cit) by examining the judgments of the Court of Appeal and House of Lords in Airedale NHS Trust v Bland [1993] AC789 (in particular the judgment in the Court of Appeal of Hoffmann LJ) and the report of the Law Commission 231 which proceeded the passing of the 2005 Act. It was the view of both the Law Commission and Hoffman LJ in Bland that substituted judgment can be subsumed within the context of best interests’

Baker J cited paragraph 55 of the judgment of Morgan J, where he observed:

The best interests test involves identifying a number of relevant factors. The actual wishes of P can be a relevant factor: s4(6) (a) says so. The beliefs and values which would be likely to influence P’s decision, if he had capacity to make the relevant decision, are a relevant factor: s4(6) (b) says so. The other factors that P would be likely to consider if he had the capacity to consider them, are a relevant factor: s4(6)(c) says so. Accordingly, the balance sheet of factors, which P would draw up, if he had capacity to make the decision, is a relevant factor for the court’s decision. Further, in most cases, the court will be able to determine what decision it is likely that P would have made, if he had capacity. In such a case, in my judgment, P’s balance sheet of factors and P’s likely decision can be taken into account by the court. This involves an element of substituted judgment being taken into account, together with anything else, which is relevant. However, it is absolutely clear that the ultimate test for the court is the test of best interests and not the test of substituted judgment. Nonetheless, the substituted judgment can be relevant and is not excluded from consideration.

By applying these considerations, Baker J was able to conclude ‘without hesitation’ that it was in the mother’s best interests to authorize payment to the nanny to take on the care of the children.

He observed at paragraph 45:

I accept that the court has power under the 2005 Act to approve payments for the maintenance or other benefit of members of P’s family, notwithstanding the absence of an express provision to that effect in the Act, provided such payments are in P’s best interests. Such payments might be called altruistic, but are more characterised as falling within the broad meaning of the concept of “best interests” under the Act. Where a parent loses mental capacity at a time when she is still responsible for her children, those responsibilities are part of her “interests” which have to be addressed by those making decisions on her behalf, and payments to meet the reasonable needs of those children are manifestly capable of being described as in her “best interests” on all the circumstances, applying the criteria in the Act….

Plainly P’s wishes and feelings are of great importance in determining whether in these circumstances it would be in her best interests for payments to be made. She has expressed the wish that her funds should be used in support of the children. It is said that, in expressing that view, she does not appreciate the fact that her own care needs are now costing more than her income. In my judgment, however, were she to have a full understanding of the shortfall, she would nevertheless support the payment of sums to S to safeguard the future of her children, preferring to make savings in the costs of meeting her own care needs. The new arrangement will significantly reduce the sums being paid towards the children out of her estate, and as a result the deputy and those responsible for managing her affairs will have greater flexibility in adjusting arrangements to enable her to make savings. I find that P’s wishes and feelings are, in the words of Munby J Re M, ITW v Z at paragraph 35, “responsible and pragmatically capable of sensible implementation in the circumstances” and “can properly be accommodated within the court’s overall assessment of what is in her best interests.

Conclusions

This can appear to be a convoluted and artificial exercise. For many inacpacitous people who have never expressed a view about their circumstances, and never will, it seems likely that what we will end up doing is simply imposing what we think is the best thing for them.

It’s clear that we get limited guidance from the case law as each case turns on its own facts – for example, some cases are clear that the ‘best interests’ of P cannot extend to considering what is best for anyone else, whereas in other cases the impacts of the decision on others becomes a factor of key importance.

But the value of the Act is that it forces us into a framework where we really have to stop and think about what we are doing and check our own assumptions. As Lady Hale made clear in Cheshire West – this is simply about ensuring that disabled people have the same respect for their human rights as everyone else. The scales will always tip back and forth between potentially excessive paternalism and a wish to protect to recognition of the right of us all to make unwise decisions. In an imperfect world all we can do is recognize the requirements – and the limitations – of the task in front of us.

Otherwise we end up in a situation such as Somerset v MK (Depravation of Liberty : Best Interests Decisions : Conduct of a Local Authority) [2014] EWCOP B25, where HHJ Marston commented at para 74 of his judgment:

The overall summing up by the senior social work manager was: “There has been a corporate failure and a failure of those on the ground to realise that they are out of their depth, most worrying was that they looked more sure about what they were doing than they ought, … it’s going to be difficult to re-establish that trust (with the family) if it’s rebuilt it is going to be with good practice”.” Mr Justice Ryder (as he then was) in a leading authority on FII cautioned social workers in child care cases not to decide what the picture was and then make the facts fit the picture, it seems to me that is what happened here.

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