Best interests: how the Supreme Court restored the law for incapacitated patients

"We cannot always have what we want," said Lady Hale in Aintree University Hospitals NHS Foundation Trust (Respondent) v James (Appellant) [2013] UKSC 67, the first Court of Protection case to reach the Supreme Court. Indeed, "a patient cannot demand a doctor administer a treatment which the doctor considers is adverse to the patient's clinical needs" (see R (Burke) v GMC [2005] EWCA Civ 1003 at 50).

While a patient's wishes or likely wishes can never prevail, a decision taken on behalf of an incapacitated patient requires consideration of any ascertainable wishes and feelings, beliefs and values - "the things which were important to him". This uncontroversial statement of the law was in contrast to the somewhat surprising decision of the Court of Appeal, which propounded a novel 'objective, reasonable patient' test. The Court of Appeal's erroneous interpretation of the Mental Capacity Act 2005 (MCA) Code of Practice bred confusion among legal practitioners who undertake serious medical treatment cases.

Altering the law

Intervening, the Intensive Care Society and The Faculty of Intensive Care Medicine supported the Court of Appeal's decision and argued that to allow the appeal would fundamentally change the law. They were wrong; the appellate court had altered the law as previously understood. Fortunately, the Supreme Court has refocused matters; decision-makers providing care and treatment to the incapacitous must "consider matters from the patient's point of view" (at 45).

The case came to the UK's highest court after David James' sad demise. Permission to appeal was given to his widow due to the importance of the issues. The facts of the case were reasonably straightforward. James, a talented professional musician, was devoted to his family. He had colon cancer, later acquiring an infection complicated by chronic obstructive pulmonary disease, an acute kidney injury and persistent low blood pressure. He was admitted to the critical care unit of Aintree hospital and placed on a ventilator.

During the next few months he suffered a stroke and a cardiac arrest, requiring cardiopulmonary resuscitation (CPR). Recurrent infections led to septic shock and multiple organ failure, and his neurological state deteriorated. He could not sit or stand without assistance, and daily care caused him significant discomfort. He was completely dependent on artificial ventilation and had little prospect of leaving the unit.

Lacking capacity

Since the deterioration in his neurological state, James lacked the capacity to make decisions about his medical treatment. He was diagnosed as being in a minimally conscious state. However, he appeared to recognise and take pleasure from family and friends visiting. He would kiss his wife who attended upon him for four hours daily, and try to reply to her. He also appeared to enjoy watching videos on his son's phone.

In September 2012 the trust sought declarations from the Court of Protection under section 15 MCA that it would be lawful and in James' best interests in the event of clinical deterioration to withhold invasive support for circulatory problems, renal replacement therapy, and CPR. Although all parties agreed that the prognosis was "gloomy", and that there was no guarantee that the "extremely burdensome" treatments would be effective, James' family believed that he gained pleasure from his present quality of life, and his strident fight against cancer evidenced his likely wish to receive invasive treatment.

Despite the unanimous medical views, supported by the Official Solicitor, the judge refused the declarations sought as the circumstances did not yet require an absolute decision ([2012] EWHC 3524 (COP)). The trust's appeal was heard by the Court of Appeal two weeks later, by which time James had dramatically deteriorated, again requiring mechanical ventilation. He was unable to move, and invasive treatment clearly caused him great distress and discomfort. The appeal succeeded and a declaration was made, but unfortunately ten days later James died following a cardiac arrest.

The sanctity of life

"A profound respect for the sanctity of human life is embedded in our law and our moral philosophy" (Airedale NHS Trust v Bland [1993] AC 789). Nonetheless, the strong presumption that it is in a person's best interests to stay alive is not an absolute. The Courts of Protection and Appeal differed as to what would amount to 'benefit', and to 'burdensome' and/or 'futile' treatment. In their grounds, the treatments in question were described as futile because there was "little prospect of any meaningful recovery" for James.

Peter Jackson J did not equate futility with a lack of likely recovery . Rather, the judge defined futility as ineffective treatment, or that which would only restore a quality of life not worth living. Observing that two of the treatments previously attempted had been successful, he held that despite the very great burdens of invasive treatment for James, it was not futile when weighed against the benefits of continuing to live.

In contrast, on appeal, Sir Alan Ward defined "therapeutic benefit" as that where "the treatment…standing alone or with other medical care…[has] the real prospect of curing or at least palliating the life-threatening disease or illness".

Arden LJ acknowledged the importance of the patient's ascertainable wishes, but held that where they were difficult to determine, the court should make a decision based upon whether a reasonable individual would reject the treatment as unduly burdensome. The court held that a patient had "no prospect of recovery" if they could not return to "such a state of good health as will avert the looming prospect of death if the life-sustaining treatment is given". Thus, treatment which merely delays inevitable death could not be in a patient's best interests.

Best interests

It is trite law that 'best interests' "encompasses medical, emotional and all other welfare issues" ?(Re A (Male Sterilisation) [2000] 1 FLR 549, at 555). Whilst the appellate court recognised this, it held that on an overall assessment, medical interests should prevail over James' wishes or likely wishes because the proposed treatment was futile, burdensome, and would not enable him to he ?go home.

Paragraphs 5.31-33 of the MCA Code states that "[t]here 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 these circumstances it will be in a patient's best interests to withdraw or withhold life-sustaining treatment, even though death will ensue.

However, the Supreme Court emphasised that until such conclusion was reached, all reasonable steps that are in the person's best interests should be taken to prolong their life. The decision-maker must consult professional guidance, consider all available treatment options, and apply the best interests checklist. Previous statements made by the person about their wishes and feelings with respect to life-sustaining treatment must be considered. A decision-maker must not be motivated by a desire to bring about the person's death, "even if this is from a sense of compassion"(section 4(5) and (10) MCA and para.5.31 MCA Code).

Futile treatment

In the case of Bland [1993] AC 789, the court held that treatment for an unconscious patient whose condition would not improve had no therapeutic purpose or benefit, and was therefore futile. Accordingly, no weighing exercise of benefits was required in order to ascertain his best interests. Some case law suggested that where treatment could not be said to be futile, a balancing exercise with a 'touchstone of intolerability' should be undertaken, but it was not a test applicable in all cases (Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421, Re J (Wardship: Medical Treatment) [1991] Fam 33, W Healthcare NHS Trust v H [2005] 1 WLR 834 (obiter)).

The Court of Appeal had wrongly broadened the concept of futility of treatment to that which did not have "a real prospect of curing or at least palliating the life-threatening disease or illness". Yet a treatment may benefit a patient even though it has no effect upon the underlying disease or disability.

The Supreme Court held that Peter Jackson J had rightly defined futile treatment as that which is ineffective or of no benefit to a patient. Further, ?he had correctly understood that "recovery does not mean a return to full health, but the resumption of a quality of life which James would regard as worthwhile".

Great weight had to be given to James' close, meaningful family life. Although the strain of his situation might have altered his views, he would probably have desired treatment until it became hopeless. No-one could say that a life worthwhile to the patient was not worth living (Re J (A Minor) (Child in Care: Medical Treatment) [1991] Fam 33). The extent of the burden of the treatments in question had to be weighed against the benefits of a continued existence. They would not be futile if they enabled a quality of life which the patient would regard as worthwhile.

The 'reasonable patient'

The Court of Appeal had also wrongly held that the wishes and feelings of an objectively reasonable patient should be attributed to an incapacitated individual. A patient's wishes and feelings, beliefs and values were of central importance to ensure a decision was made that was "right for him as an individual human being" . Although the MCA includes no 'substituted judgement' test, decision-makers must try to put themselves in the patient's position and ask what that patient's likely view would have been.

Despite the flaws in the appellate court's reasoning, when it heard the matter James had significantly deteriorated to the point where there was little prospect of his regaining even his previous quality of life. The Court of Appeal had therefore correctly allowed the appeal, and so technically the case had to be dismissed.

Nonetheless, this judgment happily restores the person-specific test as regards best interests, dismissing the fallacious 'reasonable patient' test. The Court of Appeal's extrapolation of the definition of futility is to be welcomed, but arguably more concrete assistance would have been appreciated by busy clinicians making life or death decisions.

However, Lady Hale's description of the current GMC guidance, 'Treatment and care towards the end of life: good practice in decision making', as "sensible advice" and not inconsistent with the judgment may bring them some comfort. SJ