Guest Post by Derick Wade

Re: Back to the Beside: Making Clinical Decisions in Patients with Prolongued Unconsciousness

In 1994, not long after the Bland judgement, I was telephoned one day by the office of the Official Solicitor. “Was I familiar with the vegetative state, and if so would I be prepared to see two people for them?”  I could reasonably honestly answer that I was familiar with it – one sees people left unconscious long after brain injury in my line of work.  I did not claim expertise, and nor was I asked.  I said “yes, to both questions.” and was sent relevant guidelines, and instructions.  With practice I improved, and I wrote my first article on the matter with one of the Official Solicitors, published in the BMJ.  I also saw one case who was definitely not vegetative (and two very well know experts had said that she was); the case has been written up with a ten year follow-up (not by me).

In about 2000, having seen about fifteen or more cases for the Official Solicitor and various NHS hospitals, the next chance event occurred.  Talking one evening with my family about my work, my elder daughter asked me what I thought about the ethics of withdrawing food and fluid.  I replied something like “Well, I have never really thought about it.” which horrified her, and surprised me (though research suggests that actually I am quite normal in that regard, as doctors usually consider matters clinically, not ethically).  Anyway, I decided to research the issue and wrote another article, which was also published in the BMJ.  Interestingly despite making several provocative statements, I only received one letter about it.

I continued to see cases, both for legal proceedings, and also clinically to give an expert opinion and advice. This culminated in being one of three leaders developing the National Clinical Guideline on the management of people with a prolonged disorder of consciousness.

Then about four years ago I came into contact with Polly Kitzinger and her sisters, especially Professors Jenny and Celia Kitzinger.  Our first contact was not perfect, primarily because (as I learned from them) my clinical practice was not proper and I did not follow proper processes.  Once the acute issue was settled, I met with three sisters to discuss events and what I could learn, and over two hours or so I learned much, and I hope that I have improved my practice since.

More importantly we have developed a very good friendship and professional relationship and I have helped a little with work such as recruiting patients for their research, and helping with the absolutely excellent and award-winning healthtalkonline.org website about prolonged disorders of consciousness. I now get to see many patients and families who are suffering delays and other problems.

These experiences, and others have driven me to consider, research and write about the problems with the current clinical and legal processes and how they can be improved.  This paper arose from one particular case; a second paper I am writing also arose from this one case and the collaboration with Celia and Jenny Kitzinger.