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Sanctity and futility

The Supreme Court recently gave judgment in

 Aintree University Hospitals NHS Foundation Trust (Respondent) v James (Appellant) [2013] UKSC 67

{This is the first Supreme Court decision on Mental Capacity Act – there’s obviously the Cheshire West decision pending, but this is still quite a big deal} 

http://www.bailii.org/uk/cases/UKSC/2013/67.html

 

 Lady Hale captures the importance of the judgment in one simple opening

 

This is the first case under the Mental Capacity Act 2005 to come before this Court. That Act provides for decisions to be made on behalf of people who are unable to make decisions for themselves. Everyone who makes a decision under the Act must do so in the best interests of the person concerned. The decision in this case could not be more important: the hospital where a gravely ill man was being treated asked for a declaration that it would be in his best interests to withhold certain life-sustaining treatments from him. When can it be in the best interests of a living patient to withhold from him treatment which will keep him alive? On the other hand, when can it be in his best interests to inflict severely invasive treatment upon him which will bring him next to no positive benefit?

 

There’s a really excellent summary over at UK Human Rights blog

 

http://ukhumanrightsblog.com/2013/11/03/supreme-court-weighs-in-on-patients-best-interests-and-the-meaning-of-futility/

 

The Court of course re-emphasised the existing law and the starting point that human life has a sanctity and that making any decision that might hasten the end of life is a very serious one requiring very careful analysis. That’s long-standing authority, of course backed by Article 2 of the Human Rights Act which protects an individual’s right to life.

 

In a nutshell the patient David James had severe medical conditions and complications arising from those. He reached a point where neurologically he was no longer able to make decisions about his own treatment. The hospital took the view that the treatment they were able to provide was not going to cure him or help him recover. He did appear to recognise his family during their visits and take pleasure from them.

 

The hospital sought a declaration from the Court that they should be permitted to not provide Mr James with treatment which would be invasive or painful. The family opposed this, considering that Mr James was still able to take some pleasure from life and that his life should continue.

 

The three treatments that they wished to withhold were these [Note that there was not a suggestion of ending Mr James life through an overdose of pain medication, nor of ceasing to provide him with food or liquid – though of course, if Mr James HAD needed CPR to keep him alive and that would not be provided, it would hasten his death]

 

  1. The three treatments in question, as described by the judge (para 8), were as follows:

(1) Invasive support for circulatory problems. This meant the administration of strong inotropic or vasopressor drugs in order to correct episodes of dangerously low blood pressure. The process is painful, involving needles and usually the insertion of a central line. The drugs have significant side effects and can cause a heart attack. They had previously been used to treat Mr James.

(2) Renal replacement therapy. This meant haemofiltration, filtering the blood through a machine to make up for the lack of kidney function. It too requires a large line to be inserted and an anti-coagulant drug which brings the risk of bleeding or a stroke. It can be very unpleasant for the patient and may cause intense feelings of cold. Mr James had not so far required this treatment.

(3) Cardiopulmonary resuscitation (CPR). This aims to make a heart which has stopped beating start beating again. So the decision has to be taken at once. It can take various forms, including the administration of drugs, electric shock therapy and physical compression of the chest and inflation of the lungs. To be effective, it is “deeply physical” and can involve significant rib fractures. CPR had successfully been given to Mr James when his heart had stopped beating in August.

 

The debate hinged really on the Mental Capacity Act Code of Practice

 

 

  1. The Mental Capacity Act Code deals with decisions about life-sustaining treatment in this way:

“5.31 All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person’s death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person’s death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment.

5.32 As with all decisions, before deciding to withdraw or withhold life-sustaining treatment, the decision-maker must consider the range of treatment options available to work out what would be in the person’s best interests. All the factors in the best interests checklist should be considered, and in particular, the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment.

5.33 Importantly, section 4(5) cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person’s death is foreseen. Doctors must apply the best interests’ checklist and use their professional skills to decide whether life-sustaining treatment is in the person’s best interests. If the doctor’s assessment is disputed, and there is no other way of resolving the dispute, ultimately the Court of Protection may be asked to decide what is in the person’s best interests.” (Emphasis supplied.)

 

 

The issue here was therefore whether the three treatments in question met that criteria of being ‘futile, overly burdensome to the patient or where there is no prospect of recovery’

 

The initial Court of Protection decision was to refuse the hospital’s application for a declaration that they could decline to provide those 3 forms of treatment. That was appealed and the Court of Appeal overturned that, and allowed the declaration.

 

The family then appealed to the Supreme Court.  The Supreme Court actually found that the original trial judge at the Court of Protection had been right BUT that by the time the case got to the Court of Appeal, deteriorations in Mr James condition meant that the Court of Appeal HAD also been right to reach the opposite decision.

 

[But that on two areas of principle, the original judge had been right and the Court of Appeal had been wrong]

 

In particular, the Supreme Court reached two key decisions

 

 

  1. That a treatment was not futile just because it had no real prospect of curing or palliating the illness – a treatment that could improve or restore some quality of life might not be futile

 

Thus it is setting the goal too high to say that treatment is futile unless it has “a real prospect of curing or at least palliating the life-threatening disease or illness from which the patient is suffering”.  ….where a patient is suffering from an incurable illness, disease or disability, it is not very helpful to talk of recovering a state of “good health”. The patient’s life may still be very well worth living. Resuming a quality of life which the patient would regard as worthwhile is more readily applicable, particularly in the case of a patient with permanent disabilities. As was emphasised in Re J (1991), it is not for others to say that a life which the patient would regard as worthwhile is not worth living

 

  1. The test is not an “objective” test as to whether a reasonable person or even reasonable patient would consider the treatment to be futile or burdensome, but a subjective one  – whether that is the case for THIS patient, where the Court should as best as possible put themselves in the shoes of the patient and take into account as much as is known or can be established about what the patient’s own view would have been.

 

The purpose of the best interests test is to consider matters from the patient’s point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient’s wishes are. Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament. In this case, the highest it could be put was, as counsel had agreed, that “It was likely that Mr James would want treatment up to the point where it became hopeless”. But insofar as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being.

 

The Supreme Court made it plain that there might be circumstances in which medical professionals, or even families, might make the decision that it was right to seek a declaration from the Court of Protection about treatment in such cases, but that it would ultimately be a matter for the Court of Protection to make such a decision, and the court might take a different view to that of the applicant.

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About suesspiciousminds

Law geek, local authority care hack, fascinated by words and quirky information; deeply committed to cheesecake and beer.

5 responses

  1. I know of this family, they have been debating the case on the Local Radio for some considerable time, they take the Judgment as a Moral Victory,

    Nigel Poole Q.C wrote a very good article on his blog about the case back in March of this year when the case was in the COA arena

    http://nigelpooleqc.blogspot.co.uk/2013/03/david-james-v-aintree-court-of-appeal.html

  2. The case is interesting because the current direction for dementia sufferers appears to be a push towards the end of life through witholding treatments that might require repeating due to the chronic health problems of old age many face. One blog site quoted a GP as stating it is ‘not so much the case of not prologing life but of not prolonging death’. But the question is that with interventions normal to much of the public e.g. i.v. antibiotics, rehydration etc. people with dementia may live. Then I have been told by a relative with a very aged ‘terminal cancer’ who has ben the less than 10% surviving more than 5 years the doctors are flabergasted at his not only being alive but continue to treat him entirely due to the fact his quality of life is so vety great and inspite of being riddled with cancer he shows no obvious affects!!. So another issue doctors apply is quality of life. But that is subjective to each persons situation an mental and physical make up.

    I think the danger is that ‘inacpacititated’ aged people are in danger of being allowed to die because someone else decides repeat hospital admissions (expensive) ar not worth it, or because of the notion of low quality of life (- which is not easily definable except by the patient themselves).

    Somehow this is about judgement on the value of another’s life, either by family or judge.

    • There is an interesting anonymous comment under the relevant entry in the UK Human Rights blog:
      “Ma | November 3, 2013 at 9:57 pm

      The appeal may well revolve around the fact that Mr James had only been put in ITU because of a hospital acquired infection – surely part of the damages for that injury should have been the unlimited continuation of support to compensate for the visceral damage they had caused?
      Secondly, the assessment of a deterioration was given by the same team who had sought to remove him from the ITU bed…hardly an ‘impartial’ opinion, and with no ‘evidence’ as such, apart from a clinical opinion and notes in handwriting, the courts appear 100% biased in favour of the medical practitioners in such cases.
      Thirdly, it is surely ridiculous for the law to allow that a patient who has been rendered ‘incapacitated’ by drugs administered by the same people who are seeking to withdraw ventilator support, have any decisions made by the same team? A cynic/someone who has experience in a medical environment, might say that the administration of drugs that render someone unconscious or semi=conscious (sedatives) was a connivance to facilitate withdrawal of expensive treatments from those they considered were on the cusp of suing them for clinical negligence? The damages for a death are significantly lower than those for ongoing care costs.”

    • Regarding this comment from the UK HR blog: I have no idea whether the comment is fair or not, but I have to say that it has appeared to me, for quite a while, that the notion of conflict of interests does not apply in “care” cases in the court of law in the UK. For instance, you read about parents of toddlers being “assessed” in centers run by… adoption agencies! But neither judges nor commenting lawyers seem to have seen a conflict of interests in such arrangement. (An example of such “assessment” can be found in the famous recent case of forced adoption KS vs United Kingdom, brought before the ECHR).

      And in the case of this patient, if the commenter says the truth, it seems, too, that the “assessors” were also the interested parties… but it escapes the judges’ attention.

  3. I think it is a moral victory for the family, in that the original judge was right and applied the right tests in refusing the application.

    It seems an odd thing to me that what most people would imagine the law to be that if your loved one fell into a coma, their family would be the one making the decisions, isn’t actually the case under the MCA.

    Hard to get anything completely right, but I think a starting point would be – in the absence of clear indications to the contrary, the wishes and feelings of the patient’s close family ought to be followed (particularly where it involves a hospital wishing to withdraw treatment).

    Where it is the family that wish to withdraw treatment – i.e believing that the patient has a right to die, that’s probably more tricky. I still think those views are significant and ought to be weighed heavily in any balancing exercise, though I’d fall short of a rebuttable presumption.

    Arkhvista, there would be a conflict of interest there if the assessing agency were likely to go on to be the adoption agency (just as there’s a conflict of interest if a psychologist recommends a form of therapy that only they can provide). Is there a conflict of interest if the assessor recommends adoption and they get no financial benefit from it? Just as if a psychologist recommends a form of therapy that they CAN provide, but that is available from many other sources? Harder to call. It is important to be alive to conflict of interest, and I’d be very surprised if questions were not put if there seemed to be a sniff of it.

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