Responding to the decision on the case of M, Sarah Wootton, Chief Executive of Compassion in Dying, said:

“Today’s judgment is a helpful step towards a clearer, more person-centred view of end-of-life care. When all parties – family, the hospital and treating doctors – are agreed on what someone would have wanted for their care, it seems absurd to require a costly court process to confirm this.

“M’s wishes were clear and have not been contested. M’s mother, stepfather and daughter all agreed that it would not have been M’s wishes to be kept alive without hope of recovery or improvement. Her doctors agreed that being kept alive with artificial hydration and nutrition was not in her best interests and may be causing her discomfort, distress and existential suffering. Nonetheless, court proceedings were at the time deemed necessary so as to protect healthcare professionals due to the uncertain legal situation in these cases.

“While the judgment is likely to be contested by the Official Solicitor, we believe Mr Justice Peter Jackson’s reasoning is sound. It should not be necessary to require court proceedings to respect a person’s wishes simply because they are in a persistent vegetative state (PVS) or minimally conscious state (MCS). That requirement is unduly onerous on families and on the health services, who would need to expend large amounts of money even where there is no dispute as to the right course of action. As the judgment points out, it may even lead to inappropriate treatment continuing against a person’s wishes simply to avoid having to go through the Court of Protection.

“It is clear that the best way to avoid complicated and costly hearings in the court is to ensure your wishes are recorded in an Advance Decision or Advance Statement. These are legally binding and enforceable statements that would ensure anyone who is unable to express their wishes can nonetheless have them respected by healthcare professionals. Anyone who is faced with a chronic and progressive illness should consider completing an Advance Decision or Advance Statement so that they, their friends, their family and their caregivers can be certain that they get the treatment and care that’s right for them.”

Compassion in Dying provides free Advance Decisions, Advance Statements and support to plan ahead through our Information Line on 0800 999 2434 and www.mydecisions.org.uk.

***ENDS***

Notes to editors:

  • M began to show signs of Huntington’s disease in the 1980s and became permanently resident in hospital in 1994. By 2003 she became dependent on clinically assisted nutrition and hydration (CANH) and was mostly bedridden for the past ten years. Her family and doctors believe she is in a minimally conscious state, unable to communicate but showing some signs of response to pain relief.
  • A request to have CANH withdrawn was heard in court in June and the request was granted on 22ndJune. CANH was withdrawn on 24th July and M died on 4th August 2017 at the age of 50.
  • A judgment was delivered on 20th September, dealing with legal issues raised in the initial hearing and subsequent legal arguments.
  • Based on the Bland ruling in the House of Lords in 1993 and in Practice Direction 9E, it has until now been believed necessary that a case dealing with the withdrawal of treatment for a person in a minimally conscious state (MCS) or persistent vegetative state (PVS) should always be heard by a court, regardless of whether there is a disagreement on the right course of action.
  • This issue was recently raised in the case of Paul Briggs, a 43 year old police officer and Gulf War veteran from Merseyside, who was knocked off his motorbike in 2015 and suffered a significant brain injury.
  • The judgment in this case suggests that future cases dealing with CANH for people in MCS or PVS would not need to go to court where there was no dispute as to the person’s best interests. Compassion in Dying has argued for greater clarity on this point, particularly to ensure that where a person has made a valid Advance Decision to Refuse Treatment, there should be no need for court proceedings.

Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care. We provide free support for people to plan ahead for a time that they may lack capacity to make decisions about their treatment, including a Freephone information line 0800 999 2434 and a free website which allows members of the public to make a legally binding Advance Decision or Advance Statement, www.mydecisions.org.uk.