Using Best Interests Meetings for People in a Prolonged Disorder of Consciousness to Improve Clinical and Ethical Management

Guest Post: Derick T Wade
Article: 
Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management

 

One year ago I wrote the first of two articles on improving the management of people with a prolonged disorder of consciousness. That article was the result of about 18 months writing and re-writing. Now, 12 months later, the sequel promised has arrived. The year has been marked by a continuing tussle between different interested parties over both the making Best Interests decisions and then the execution of the decision. These problems arise because the Practice Direction 9E put out by the Official Solicitor suggested that decisions in all cases of vegetative state and minimally conscious state should come to Court. The harmful consequences have been extensively documented, not least in this journal.

My main arguments have been:

  • It is not possible to be 100% certain about the clinical diagnosis (of level of awareness) or prognosis, and this was the focus of my first paper;
  • Therefore all decisions should be on the basis of Best Interests, as outlined in the Mental Capacity Act 2005 and its accompanying Code of Practice.
  • The major adverse (and unintended) consequences of the Practice Direction needed to be ameliorated, through returning to the process outlined in the Mental Capacity Act.
  • This second article develops a clinical process that should improve care and management whilst re-assuring the many people who did not wish the situation to change – for a variety of reasons.

On July 18th 2017, the article was finished and accepted. Although I hoped it would help the process of changing clinical and legal practice, I felt the legal resistance and process was unlikely to see change in a few years.

On July 24th I and many other interested clinicians attended a meeting at the Ministry of Justice to talk about Practice Direction 9E. The meeting demonstrated several areas of legal inconsistency and clinical concerns. It also showed that some people did not think there was any problem, and were reluctant to allow any change. A working party was proposed, which I thought would delay change for some time; my only hope was that my article would provide a template for any suggested change in clinical practice.

Then, on 31 July 2017, the Court of Appeal (through Lady Justice King) gave a judgement in an appeal relating to the case of Paul Briggs. In that case the family had had to fund their application to the court, their application being concerned with enforcing the Best Interests process. Unfortunately (in my view) the Appeal Court did not agree that Legal Aid should be available to support families when healthcare teams appeared to be failing to apply the Best Interests process.

However there was a major silver lining. Paragraph 26 of Lady Justice King’s submission said:

 

“Insofar as the Code and the Practice Direction appear to be inconsistent the one with the other, it is the Code which must therefore take precedence. In reality virtually all of these traumatic decisions are made by agreement between the families and the treating teams of the person involved. To suggest that every case should go before a judge (even where all concerned are in accord as to what was in the best interests of the patient) would not only be an unnecessary pressure on the overstretched resources of the NHS Trusts and add to the burden on the courts but, most importantly, would greatly add to the strain on the families having to face these unimaginably distressing decisions. In my judgment, the Practice Direction provides valuable procedural guidance but should not be interpreted as introducing a requirement that all cases where a decision is to be made about the withdrawal of CANH must come before a court.”

In other words, sanity has prevailed rather more quickly than I had hoped. Indeed, we have achieved the intent of my first paper – all clinical decisions in people in a prolonged disorder of consciousness, including decisions concerning life-sustaining or preserving treatments, should now be handled as they are in all other cases. A case should only be taken to Court when there is significant doubt about something, and the court’s assistance is considered likely to help, or when there is an irresolvable dispute between various parties.

I hope that the content of this paper will help guide and reassure clinicians in their daily practice, and lawyers and others that this decision, like all other decisions, is considered in a reasonable way.