Guest post by Daniel Sokol, barrister at 12 King’s Bench Walk / King’s College London.
Eight years after coming into force, the Mental Capacity Act 2005 has finally reached the scrutiny of the Supreme Court in Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67.
David James was a professional musician, and a family man. He had three children, three grandchildren, and many friends. In May 2012, he acquired an infection in hospital which resulted in his admission to the critical care unit. He was put on a ventilator. In the following months, his condition fluctuated. At one point, his heart stopped and he required 6 minutes of CPR. He later underwent a tracheostomy, and received artificial nutrition and hydration. Two months after his admission in hospital, he lost the capacity to make decisions about his medical treatment. In spite of this, Mr James was able to recognise his wife and son, to kiss them, to follow their movements with his eyes, and, on occasion, to smile. His prospects of leaving the hospital were nonetheless slim.
In September 2012, the hospital sought a number of declarations from the Court of Protection, one of which was that it would be in Mr James’ best interests not to receive certain treatments, including CPR, in the event of his deterioration. The family disagreed. They felt he still enjoyed life and that, each time he contracted an infection, he managed to pull through.
The judge at first instance refused to make the declarations. He did not consider the treatments to be futile or unduly burdensome.
The hospital trust appealed to the Court of Appeal. By then, Mr James’s condition had deteriorated dramatically. He was comatose, or semi-comatose, and completely ventilator-dependent. The Court allowed the appeal and made the declarations. On 31st December 2012, Mr James suffered a cardiac arrest and died.
Mr James’s widow appealed to the Supreme Court.
Lady Hale gave the judgment. She asked ‘How then is it to be determined whether a particular treatment is in the best interests of the patient?’ [23] She examined section 4 of the Act and concluded:
Beyond this emphasis on the need to see the patient as an individual, with his own values, likes and dislikes, and to consider his best interests in a holistic way, the Act gives no further guidance.
However, in s42, the Act requires any person acting in a professional capacity to have regard to the Code of Practice, prepared by the Lord Chancellor, which gives further guidance.
The key provision in the Code was this:
5.32 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 those circumstances, the Code states that it may be in the best interests of the patient to withdraw or withhold life-sustaining treatment.
At first instance, the judge held that the treatments would not be futile. Mr James still had a quality of life which he would regard as worthwhile. Sir Alan Ward, one of the judges sitting on the Court of Appeal, disagreed with this interpretation, holding that the judge should have considered any improvement, or lack of improvement, which the treatments would bring to Mr James’ health. Sir Ward also concluded that the judge was wrong to find that the treatments were not overly burdensome.
After reviewing some of the landmark cases on best interests, Lady Hale summarised lessons that should be familiar to clinical ethicists:
The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be. [39]
She concluded that the judge at first instance was correct in his approach:
[…] he was correct to consider whether the proposed treatments would be futile in the sense of being ineffective or being of no benefit to the patient. […] He was also correct to say that “recovery does not mean a return to full health, but the resumption of a quality of life which Mr James would regard as worthwhile.” [40]
Lady Hale stated that it was setting the goal too high to say that a treatment is futile unless it has a real prospect of curing or at least palliating the illness, as the Court of Appeal had argued. A treatment may benefit a patient even though it has no effect on the underlying disease.
Although the principles put forward by the Court of Appeal were deemed wrong, Lady Hale held that their decision to make the declarations was correct in light of Mr James’s further deterioration.
So does this judgment change the law? No. Does it interfere with the GMC’s advice in their booklet ‘Treatment and care towards the end of life’? No. It does, however, highlight the importance of a broad and patient-centred understanding of best interests, and indeed of futility, a notion so often used as a trump card by clinicians to justify non-treatment.
It is unclear whether this long legal journey, and the significant financial and emotional costs involved, could have been avoided. Some disputes over life-sustaining treatment are no doubt inevitable but nearly all are resolvable without the need to seek a declaration from the court. As most clinical ethicists and clinicians will know, many of the disagreements arise through miscommunication, or lack of communication, between the medical team, the patient and the family.
Parties operate under different assumptions because they possess variable amounts of information on the diagnosis, prognosis and options for treatment and palliation. Sometimes, the new clinical knowledge acquired by the medical team is not communicated in a timely fashion to the patient and relatives. The result is that the expectations of the various groups on the clinical progression and outcome are discordant. As in so many areas of practice (including law), expectation management is key. That is why advance care planning, regular reviews on the developing situation, and encouraging questions from patients and family, are so important. All this takes time, skill, and patience, but the efforts spent here may well prevent heart-ache, conflict and visits to the courts later.