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Can it ever really be in your ‘best interests’ to be left by doctors to die?

About The Author

Emily Clements (Former Team Member)

Emily is a Durham University Law graduate due to start as a paralegal in the London Banking & Finance Department of a Silver Circle firm in October 2014, and currently has her targets set on qualifying as a solicitor.

When can it be in the best interests of a living patient to withhold treatment from him that would keep him alive? The instinctive reaction of most people when faced with this question is to say ‘never’; however, like many ethical questions, in considering the position, it is imperative to try and eschew the influence of one’s own personal circumstances. The question can be phrased in a way that appears more empathetic: when can it be in a patient’s best interests to have severely invasive treatment inflicted upon himself, which will bring him virtually no positive benefit?

This was the crux of the debate in Aintree University Hospitals NHS Foundation Trust v David James (2013). As the first case under the Mental Capacity Act 2005 to have come before the Supreme Court, it is extremely noteworthy before we even take into account the magnitude of this type of decision.

The Case & Issues at Stake

To briefly outline the facts of the case, Mr James, aged around 68 years old, had been a colon cancer sufferer. In May 2012, complications arose and he was admitted to an intensive care unit. During his time there, he suffered multiple organ failures, numerous infections and even a cardiac arrest. He required artificial ventilation and received clinically assisted nutrition and hydration through a nasogastric tube. His diagnosis qualified him as being in a minimally conscious state, which Peter Jackson J described as meaning his general awareness was ‘very limited’. As a result of his condition, it was undisputed that Mr James had lost capacity to make competent treatment decisions for himself under the Mental Capacity Act 2005 ss (2) & (3). The main basis of the application was whether it would be lawful to make an order under the Mental Capacity Act Section 1 (5), allowing life sustaining medical treatment to be withheld, using the best interests test. The court would effectively be required to act on behalf of Mr James (the incapacitated patient).

Therefore, it is important to note that, as it is settled in law that a doctor cannot be ordered by a patient to administer a particular treatment, the court’s position is no different; they are unable to order a doctor to administer a treatment when acting on behalf of a patient. As articulated by Lady Hale in her Supreme Court Judgment, ‘the court has no greater powers than the patients would have if he were of full capacity’. However, the Court could refuse to grant the declaration sought in order to achieve this same effect, as the clinicians refusing to give the treatment would consequently be found to have acted illegally.

The case first came before the Court of Protection when the Hospital Trust issued proceedings in September 2012. The Trust sought two declarations:

  1. Mr James lacked capacity in regards to making his own treatment decisions (this was uncontentious).
  2. It would be in his best interests for specified treatments to be withheld “in the event of clinical deterioration”.

It was this second declaration that became the focus of proceedings. There was no suggestion that the ventilation and clinically assisted nutrition and hydration that Mr James currently relied upon should be withdrawn. Instead, the trust highlighted three particular forms of treatment that they sought to be able to legally withhold:

1)     Cardiopulmonary Resuscitation (CPR):

The judgment regarding the legality of this treatment was of the utmost importance, since if the circumstances were to arise that necessitated CPR, the situation would be urgent, allowing no time for deliberation. Various forms of CPR include the administration of drugs, electric shock therapy and the physical compression of the chest combined with inflation of the lungs, which can involve significant rib fractures. Mr James had previously been treated with CPR in August 2012.

2) Invasive support for circulatory problems:

This includes the administration of strong drugs in order to correct episodes of dangerously low blood pressure. The process is indisputably painful, involving needles and the insertion of a central line, as well as causing severe side effects including the risk of a heart attack. Mr James had previously been subjected to this treatment.

3) Renal Replacement Therapy:

Treatment involves filtering the blood through a machine to make up for the lack of kidney function. Again, this involves strong, risky drugs and unpleasant side effects for the patient. Mr James had never yet required this treatment.

The Mental Capacity Act Code of Practice para 5.31 provides for a limited number of cases where circumstances may arise that renders treatment ‘futile, overly burdensome to the patient or where there is no prospect of recovery’, even if this may result in a person’s death. The clinicians sought to rely on this, proposing arguments such as: the extremely burdensome nature of these three treatments for Mr James, their desire to negate the risk of a ‘prolonged, excruciating and undignified’ death, the simple fact that the treatment may not work and also the prognosis that he would be unlikely to ever achieve independence again or even realistically leave the hospital. 

The family of Mr James contested the views of the clinicians; remaining adamant that treatment should be continued, despite agreed medical opinion that he had no realistic prospect of recovery notwithstanding further interventions. They pinned their hopes and expectations on the fact that the gaps between his episodes of infection had widened and that he still displayed signs of pleasure and enjoyment when in their company. They considered that although his condition was fluctuating (which the judgeemphasised required extra caution to be taken) this did not preclude evidence that there had been improvements, as well as deteriorations, since admission to the hospital. His wife is quoted as having said, “there is no doctor on this earth who can predict when a person is going to die”. Counsel for the family also raised the argument that ‘life itself is of value and treatment may lengthen Mr James’ life’.

Despite the resolute and unanimous medical view, the judge decided against the trust and refused to grant the declaration sought to allow the withholding of treatment. In reaching this conclusion he applied the best interests criteria, by reference to the Mental Capacity Act 2005 Code of Practice, which concluded that ‘futile’ should be defined in the sense of being ineffective or of no benefit to the patient. It was decided that this could not be said of Mr James since treatment could plausibly be of some benefit, especially in light of his ability to display pleasure towards his family.  

Court of Appeal

The case reached the Court of Appeal just 15 days after the first instance hearing, on 21st December 2012. It should be noted that by the time the written judgment was handed down in March 2013, Mr James had died due to cardiac arrest on the 31st December. His widow had been given permission to appeal given the complex issues and importance of a fair judgment in the case. Clinical evidence showed that during this short period, Mr James’ condition had significantly deteriorated and he had become entirely dependent on mechanical ventilation, unable to move and semi-comatose (arguably comatose) days before the hearing. In his Commentary on the Court of Appeal decision in the Medical Law Review, Stephen Smith characterised the case as setting “at odds a healthcare team trying to do what it thought was best for a patient with a multitude of health issues against a loving and caring family hoping for a miracle”.

In a judgment written by Ward LJ, the best interests test was referred to as “the one and only test”; however, the Court also considered the way in which the previous judge had treated futility and concluded it had been too narrow. Here, ‘futile’ was extended to cover any treatment that did not either cure or palliate his condition. The question they asked was whether treatment would secure a therapeutic benefit to the patient i.e. was it “worthwhile in the interests of the general well-being and overall health of the patient”. In practice therefore, this meant that treatment that would merely save his life, but provide no benefit beyond that, could not be justified under then Code of Practice para 5.13 (see above). “No prospect of recovery” was also narrowly interpreted to mean, “no prospect of recovering such a state of good health as will avert the looming prospect of death”. Again, this posed restrictions on treatment that would purely delay the inevitable. Furthermore, the best interests test was suggested to be objective, with the Court asking, ‘what would a reasonable person in his position consider to be in his best interests?’ rather than focusing centrally on Mr James himself.

In conclusion, by applying their more limited test, the Court of Appeal held that the Court of Protection had made an error and allowed the appeal, granting the trust’s applications.

Supreme Court

Lady Hale (who delivered the sole judgment, with which Lord Neuberger, Lord Clarke, Lord Carnwath and Lord Hughes agreed) asserted that the Court of Appeal had “reached the right result but for the wrong reasons”. She emphasised the level of caution the Court must give towards making declarations in circumstances that were not fully predictable or fluctuating. As aptly identified, the important nuance in this judgment, was that the question to be asked must focus not on whether it would be in the patient’s interests to withhold or withdraw treatment, but rather whether or not it would be in his best interests to give the treatment. Lady Hale approached the case with this question in mind, dismissing the Court of Appeal’s less appropriate question of ‘would it be in the man’s best interests to withhold life saving treatment?’ If the answer to the correctly constructed question was that the treatment could not be described as in his best interests, the court would then be unable to give the necessary consent on Mr James’ behalf, and so it would be lawful to withhold the treatment. Therefore, on the assumption that the healthcare professionals had acted reasonably and without negligence, it would follow logically that they would also not be in breach of any duty of care by withholding treatment.

Determining the best interests of the individual was approached as a multi-faceted question. There are three key points of consideration that can be taken from this judgment:

  1. Clearly, the exact nature of the medical treatment in question, along with its prospects of a successful outcome, would have to be analysed appropriately when weighing up best interests. It was reinforced in the Supreme Court that the benefit of treatment to a patient is not confined solely to treatments that have an effect upon the underlying disease or disability; wider therapeutic benefits can be included.
  2. Lady Hale said that the welfare of the individual was to be considered in the widest possible sense, taking into account both social and psychological interests, as well as the medical effects on the individual.
  3. As per the Mental Capacity Act s4(6), the test includes the requirement that the decision-maker must consider the treatment from the perspective of the patient, taking into account his past wishes and values in determining what his attitude towards the treatment would likely be if he were capacitated and able to communicate such views. Consultation of friends, family and those looking after him will be highly relevant in this assessment. It was affirmed that a subjective assessment must be undertaken here, in which matters are considered primarily from the patient’s point of view. In the absence of evidence as to the patient’s wishes and feelings, the Court is not permitted to accredit those of the reasonable person instead; rather, this limb of the best interests test should be disregarded all together. In this case, with reference to his attitude towards fighting and beating colon cancer previously, his family believed he would have displayed a similar attitude towards his current predicament and a desire to persevere. Emphasis in the Explanatory Notes to the Bill made clear the Act still requires a ‘best interests’ test as opposed to a ‘substituted judgment’ test, but personal preferences of the patient are an important component in the ultimate decision.

As to the question of futility, Lady Hale criticised the first instance judge for combining best interests with the concept of futility of treatment. The two were to be considered independently. She felt that it would be setting the bar too high to say that treatment must have a real prospect of curing or at least palliating the life-threatening disease in order to avoid being regarded ‘futile’ (as the Court of Appeal had done). Rather the consideration would be whether the proposed treatment would be futile in the sense of being ineffective or being of no benefit to the patient. Lady Hale would advocate this lower threshold, in recognition that the patient’s life still may very well be worth living; instead, asking whether treatment could resume a quality of life, which the patient would regard as worth living. This was considered particularly relevant to a patient who may have lived with permanent disabilities for a long while - besides, who else is to judge whether their life is worth living or not? This must be a subjective question based on the patient himself. This kind of consideration raises many philosophical issues around the idea of “quality of life” and whether life must be considered intolerable to lose all worthiness. That is a debate for another day; however, it must be mentioned to highlight the importance of a subjective viewpoint here.

Lady Hale decided that the trial judge had in fact applied the right principle but based upon fresh evidence put before the Court of Appeal demonstrating Mr James’ severe deterioration in health, their decision had been the correct one. She found their balancing of the burdens of treatment with the benefits of a continued existence, whilst attributing great recognition to Mr James’ family life, which was “of the closest and most meaningful kind”, was the correct approach to the case. It was a matter of significant change in circumstances that resulted in her coming to the opposition conclusion.

Following the Case…

According to BBC reports, although Mr James’ family had lost the appeal, they felt they had “won the argument of principle”, since they believed as a result of the Supreme Court judgment any similar case in the future would be more thoroughly scrutinised by clinical staff and the opinions of relatives may be accorded greater weight. Reports suggest the family is now considering a further appeal to the ECHR, although it is not clear upon what basis.

Nevertheless, his daughter Julie, speaking to the BBC said, “The Supreme Court had stressed the real value of human life and that’s all we wanted”. This can be identified in Lady Hale’s citation of the Court of Appeal judgment in the infamous case of Airedale NHS Trust v Bland; “A profound respect for the sanctity of human life is embedded in our law and moral philosophy”. This of course coincides with the legal presumption in favour of preservation of life, which should not be seen to carry any less weight following this case. Human life is held to have intrinsic value in the majority of ethical positions, for example we can see varying degrees of value accorded in vitalism, the sanctity of life position and the quality of life view. (See the work of John Keown for further discussion of these).

The current attitude of the courts seems to coincide most closely with the sanctity of life position, which would contend that whilst intentional killing of a human being can never be correct, at the same time there is not a moral obligation to preserve life at all costs. Conversely, the judiciary would not be keen to endorse the quality of life argument due to their assertions that it is not the court’s place to judge upon the ‘worthiness’ of a human life as there can be no objective standard within this domain. Alternatively, the case may be analysed from a virtue theorist’s position, which instead would look to the motives of the actors behind the decision to judge it on its morality. We can be sure to see these different positions manifested in the plethora of academic commentary that will no doubt come from this Supreme Court judgment and different stances taken depending upon an academic’s particular position on the status they accord to human life.

Although the Supreme Court judgment did not in practice influence Mr James’ own case, I believe it positively clarifies the ‘best interests’ test in the MCA which is of paramount important to the Act and now provides a clearer framework for the Court of Protection in any case in which they must assess welfare. On the other hand, Lady Hale has also sought to clarify that best interests cases must be dealt with on a case-by-case basis, so perhaps her judgment should not be taken as a rigid and inflexible criteria, rather a guidance to interpretation. Although a case such as this where the patient finds themselves in a ‘minimally conscious state’ can surely never be clear cut, and it is inevitable family will seek to perpetuate their optimism, on the particular facts of the case I agree that the treatments outlined would have been ‘overly burdensome’ for Mr James. Lady Hale’s judgment presents a well-reasoned and balanced argument, recognising the realities of the situation and, in my view, correctly applying a somewhat discretionary area of the law.

Further Reading

The Supreme Court Judgment, Aintree University Hospitals NHS Foundation Trust v James and others [2013] UKSC 67.

Supreme Court video footage.

Court of Appeal Judgment, Aintree University Hospitals NHS Foundation Trust v James and others [2013] EWCA Civ 65.

Mental Health Law, Online Comment.

Solicitors Journal, Case Summary.

Mark Bennet, BrowneJacobson, When is treatment futile? Aintree University Hospitals NHS FT v David James and others

Daniel Sokol, Journal of Medical Ethics blog, Aintree University Hospital NHS Foundation Trust v James: Best Interests and Futility under the Judicial Microscope.

Katie Beattie, UK Human Rights Blog, Supreme Court weighs in on patient’s best interests and the meaning of futility.

BBC  Reporting on the Case:

David James death: Doctors 'right' to withhold treatment

Liverpool widow takes hospital to court over withdrawal of treatment

Doctors had no right to let David James die, says wife

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Tagged: Medical Law & Ethics

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