There has been some progress on end-of-life decision-making
Eight years ago, in the case of W v M  EWCOP 2443 the Court of Protection held that it was in the best interests of a woman who had been in a minimally conscious state for 8 years to continue to be kept alive by clinically assisted nutrition and hydration (CANH), even though her family were clear that this was not what she would have wanted. With no written Advance Decision to Refuse Treatment - a mechanism for preserving autonomy after the loss of mental capacity enshrined in the Mental Capacity Act (MCA) 2005 - the court did not feel able to do anything other than fall back on the presumption in favour of life. The decision caused great distress to her family. M died years later, never having emerged from her minimally conscious state.
It was my involvement in M’s case that drew me to Compassion in Dying, a charity that supports people to plan ahead and record their wishes for their end-of-life care and treatment, in the hope that cases like this can be avoided. As my term as chair comes to an end, I have reflected on the significant and welcome changes that have occurred in this area of law in the intervening years. While organisations including Compassion in Dying and campaigners like the family of Polly Kitzinger have been working to raise awareness of Advance Decisions, Lasting Powers of Attorney for health and welfare decisions and the need to put one’s wishes in writing, the Court of Protection has, fortunately, developed a more person-centred approach to decisions about treatment at the end of life.
In the case of Mrs N in 2015, withdrawal of CANH was held to be in the best interests of a woman with multiple sclerosis who, like M, had never put her wishes in writing or signed an Advance Decision. The court relied on the Supreme Court decision in Aintree University Hospitals NHS Foundation Trust v James and others  UKSC 67, which had confirmed that, whatever doctors might recommend, the medical treatment that was in an incapacitous patient’s best interests depended on that patient’s perspective and likely wishes. That might be a wish to continue treatment which doctors considered to be of no likely benefit, or a wish not to start or continue treatment that was being offered. If the person’s wishes could be reliably ascertained by speaking to friends and family, then they should be followed. The same approach was taken the following year in the case of Paul Briggs, a police officer who had sustained a catastrophic brain injury in a road accident, whose condition might have improved with continued rehabilitation. The court found that even if the best possible outcome was obtained, that would still have left Mr Briggs with a quality of life that he would not have valued or wanted, and so withdrawal of CANH was eventually authorised following a lengthy court battle, against the views of the treating doctors.
Subsequent cases adopted the same approach, approving the withdrawal of CANH from a patient with advanced Huntington’s disease (Re M  EWCOP 19) and a 79 year old woman who had suffered a severe stroke but had not been diagnosed with a prolonged disorder of consciousness (PL v Sutton Clinical Commissioning Group & Anor  EWCOP 22).
Important procedural changes have also occurred. In Re M, and then the following year in An NHS Trust & Ors v Y  UKSC 46, the courts confirmed that where a patient’s family and the treating doctors are in agreement about best interests, there is no legal obligation to refer decisions to the Court of Protection – a practice that had been in place since the case of Tony Bland in 1994 and had often caused considerable distress to the parties involved. The British Medical Association, General Medical Council and Royal College of Physicians have since published extensive guidance aimed at ensuring best interests decisions in such cases are made in accordance with the requirements of the MCA 2005.
Outside the Court of Protection, in 2014, the Court of Appeal considered the duty to inform patients when putting in place a Do Not Attempt Resuscitation order in the case of Tracey v Cambridge University Hospitals NHS Foundation Trust & Ors  EWCA Civ 822, saying that ‘since a DNACPR decision is one which will potentially deprive the patient of life-saving treatment, there should be a presumption in favour of patient involvement. There need to be convincing reasons not to involve the patient.’ This case brought into sharp focus the difficult relationship between the exercise of clinical judgment and the rights of patients and their families to be involved in decisions that affect them. Its effects continue to be felt – in 2017, a new process for documenting DNACPR decisions called ReSPECT was piloted, and there has been a steady stream of reports, guidance and social media campaigns urging people not to shy away from discussions about the end of life, and to involve patients in decisions about ceilings of treatment.
The developments in the courts have been matched by an increased interest more generally in end of life issues, from Atul Gawande’s book Being Mortal and his Reith Lectures in 2014, to podcasts like You, Me and the Big C, and the Grief Podcast, to Kathryn Mannix’s recent bestseller ‘With the End in Mind’ which describes the natural processes of death based on her work as a palliative care doctor. It is hard to believe now that in the early days of my work with Compassion in Dying, the charity was refused advertising space in a magazine aimed at the older generation because they were afraid that the word ‘dying’ would be off-putting to readers.
It has been an enormous privilege to work in this area, both as a barrister and as a trustee of Compassion in Dying. Inevitably, there is much more to do. Still only around 4% of the population of England and Wales have an Advance Decision or a Lasting Power of Attorney for Health and Welfare, and most people are unaware that their ‘next of kin’ is not automatically the decision-maker should they lose capacity. There is no streamlined NHS-wide system for assisting patients to make advance plans including Advance Decisions and appointing attorneys, or for storing and accessing Advance Decisions. Conflict in decision-making about withholding or withdrawing treatment at the end of life persists. Fear of inappropriate care is understandably generated by scandals such as Gosport, contributing to the difficulties in conveying information about the realities of invasive treatment for dying patients to their families and friends so that compassionate decisions can be made. Hospice services have not been fully integrated into the NHS and properly funded so that everyone can benefit from them. Though I am sceptical that more policy documents and reports will generate change, I am optimistic that patients and their families will continue to force improvements to ensure they are at the centre of end-of-life decision-making, inside and outside the courts.
Victoria Butler-Cole QC is a barrister at 39 Essex Street Chambers and the outgoing chair of Compassion in Dying