A very small proportion of patients who come through our unit, probably less than 5%, maybe much less than 5%, will wind up being in a state that we describe as a prolonged disorder of consciousness what’s called a vegetative state or a minimally conscious state. And it’s that tiny minority of patients that this module will be a lifeline for. So the first thing I think is to emphasise that the outcomes that were talking about here, and the pathways of treatment, and the resources, may not apply to the vast majority of patients, but they apply to that minority of patients who currently don’t have a roadmap, and they’re stuck in a desperate landscape from which they see no escape. The work that’s been done here I think is very important for patients and their families because it provides a voice from other people who’ve been through the same experience. It’s also important for clinicians like myself, and perhaps more importantly for clinicians at a later stage of patient management, because it allows us to hear those patients’ voices through their families, and the families’ voices, in a way that hasn’t been possible before this.

In a small proportion of cases it’s clear that the patient has sustained a devastating brain injury from which no useful recovery is possible. And in those circumstances either the patient rapidly deteriorates and dies, or we discuss the situation with family members and come to the conclusion that no useful purpose can be served for that patient by carrying on. Again, in a proportion of patients theres absolutely no question but that the outcome is going to be good with aggressive and rapid treatment. And those patients we do everything that we can without really having to consider whether it’s appropriate or not. There is a large chunk of patients in the middle in whom decisions are never as clearly cut as we would like them to be. And we have to make a decision based on the balance of what the likely outcome is going to be and whether or not the patient would have been willing to accept that outcome.

It’s quite difficult to prognosticate at that early stage and the average member of the public might say, weve got very sophisticated hospitals, weve got modern scanners’ but the sad truth is that the sorts of brain injuries that can result in a devastating outcome may not declare themselves on our conventional scans.

Occasionally, the outcomes are not what we would wish. And they can be devastatingly bad without us having made a mistake. We may later on decide that a decision we made was the wrong one, given the outcome that patients achieve, but it’s very difficult to know at that early stage that the decision was wrong

Has there been an effect on you of hearing and seeing these different clips from lots of family members? How have you felt about listening to them, and seeing them?

It’s a difficult thing to talk about because I recognize that what I would want is exactly what these family members want. At the time of the brain injury they would want the doctor, if I was their doctor, to be able to tell them whether their son, daughter, mother, father, brother, sister, was going to do well or not. Or if they were not going to do well. And doing well depends on what that patient’s expectations of life are. If they were not going to do well, if they were not going to reach an outcome that they desired, that treatment that was burdensome and futile was not applied. But I’m also left with a feeling of helplessness. Because I know that we simply cannot make those predictions at that stage with any degree of accuracy and certainly not with the degree of accuracy that would allow us to withdraw treatment from most of the patients that we currently treat. So what is the use of me being involved in this? Well, it is for me to be able to say this to families, and say that your loved one is not in this situation necessarily because someone got it wrong. It’s because the best decisions that were taken at the time- the best decisions that could be taken at that time were taken, but despite the fact that they were the best decisions the outcomes may not have been what we would have desired. But the knowledge that nothing better could have been done must be a source of solace. Because perhaps the worst thing that any family member can feel is that an opportunity to do better by their loved one was missed. And though it’s a bit of a negative point, knowing that that was not the case might be of some benefit to the families.