Making Decisions for Somone Else: The Relevance of their Views

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 [2007] EWHC 2003 (Fam), at paras [121]-[124], the second being ITW v Z & Ors [2009] 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 [2014] 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.

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Turning realisable rights into real rights

My understanding at this point is that AA is still trying to participate in hearings concerning the placement of her daughter P. This ongoing litigation will take place in the family courts and falls outside both my expertise, and the terms of reference of this blog. There is thorough commentary raising a range of different concerns here, here and here.

There were some really useful points raised on this post and I apologise for not replying to all of them. One which I did not reply to because I did not want to say anything glib was ‘I don’t agree that the innocent have nothing to fear. They may not have anything to fear from the law when it works as it is intended to, – but how was this woman supposed to find someone to defend her interests?’

This is the nub of the problem. As outsiders with no actual knowledge of the situation but considerable knowledge of domestic law all the mental health and family law commentators swiftly realised that the initial reports in the Daily Telegraph and Daily Mail must have been overstated or contain significant omissions. We now know this to be the case as Cardiff Law School summarises.

At the same time we know that even if the law worked as intended (and you’ll gather from my own posts I think that is a moot point) AA did not have opportunities to defend her own views of her situation. Her ‘interests’ were represented by no doubt highly skilled counsel appointed on her behalf by the Official Solicitor. So AA enjoyed a lot of rights to process, but little substantive right to challenge the decisions being made about her.

And there is a cruel irony to this because AA’s rights to a fair hearing and to respect for her private and family life – the two rights which may have been infringed here, were actually protected in turn by a complex package of international legal obligations.

AA’s protection under international law

AA was uniquely vulnerable. She was in the third trimester of pregnancy, in a foreign country away from family and friends, experiencing a mental disorder which may or may not have affected her capacity to reach important decisions about her life and she was subject to detention. Her vulnerability is recognised under domestic law – which is why we have all these procedures before she can be detained under the Mental Health Act, subject to forced treatment under the Mental Capacity Act or have her child removed from her care under the Children Act. Her vulnerability is also recognised under international law because she would have fallen within the scope of the Hague Convention on the International Protection of Adults to which Italy is a contracting party. The Convention does not, in itself, create any rights to respect for AA’s fundamental rights. But Schedule 3 MCA did create an obligation on the UK authorities to ensure that that the Italian authorities were notified of her status and that AA’s interests in her property were secured. I have no idea how these obligations are interpreted within Italian constitutional law. Within domestic law such obligations would have to be interpreted in light of s.6 of the Human Rights Act and would require consideration of the principle of respect for AA’s private and family life under Article 8 of the ECHR, i.e. there may have been a duty on the Italian authorities to consider what steps they could take to keep mother and child together.

AA’s protection under EU law

AA was an EU citizen and a worker when she arrived in the UK and thus exercising rights under the Treaty on the Functioning of the European Union. Her access to emergency healthcare was a right exercised under Regulation (EC) 883/2004 (warning pdf) and presumably Essex Health Trust sought reimbursement for her care from the Italian authorities. If they did then decisions made about her care undoubtedly fell within the scope of EU law. This matters because after the decision in Akerberg-Fransson we know that the scope of the Charter of Fundamental Rights of the European Union (the Charter) extends to the interpretation of domestic legislation which is being used to implement an EU right, so in this case it could be applied to the interpretation of the Mental Health Act and Mental Capacity Act insofar as they are being used to define the scope of AA’s rights of access to treatment under EU law. The key right here is Article 47 of the Charter which protects the right to a fair hearing and incorporates all the procedural rights guaranteed under Article 6 ECHR. You might ask (as Mostyn J. did in another of his recent judgments) how the Charter is of relevance when the UK explicitly derogated from it by negotiating the famous opt-out: Protocol 30 TFEU. The answer is that in a close analysis of the text the Advocate-General in N.S. v Secretary of State for the Home Department found that the Protocol primarily reaffirmed the content of Art 51 of the Charter and clarified the application of the remaining provisions, but was clearly not intended to disapply the Charter to those states which had negotiated it. There is a crucial difference between fundamental rights as recognised under EU law and under the ECHR however. If it is found that a state’s action in implementing EU law has been inconsistent with the Charter then the requirements of EU primacy require the national court to disapply the domestic law, and not merely find the provision incompatible.

This protection is far more problematic, I do not know if Essex Health Trust conceptualised AA as an EU citizen protected by the Charter, but I would argue they certainly should have done. AA’s rights were distinctively affected because she was an EU citizen working in another member state. Had she remained at home in Italy her vulnerability would have been substantially diminished.

These international legal mechanisms for recognising rights apply before you even consider the application of the ECHR to AA’s case, or the rights contained in the UN Convention on the Rights of Persons with Disabilities which the UK has also ratified.

But to transform these realisable rights into real rights AA first had to be an actor with legal capacity and able to define her own interests.

If there is a larger moral to this then it is that the political significance of legal capacity cannot be overstated. Defining rights alone is of little value. The large and as yet unanswerable questions all remain. How do we define who cannot exercise legal capacity or provide appropriate assistance to those who need it? I know of no supported decision-making regime, for example, that has solved the problem of supporting decision-making when someone has current psychosis, and as someone with personal experience of psychosis my imagination struggles to accomodate that.

And how can we begin to ensure that the failsafes our system applies to ensure that when individuals are vulnerable for multiple reasons (pregnant, foreign, seriously ill, detained) we are able to interpret their interests and represent them robustly?