By Derick Wade, 30th March 2021
An earlier blog post by Jenny Kitzinger concerns the case of “RS”, a patient in a prolonged disorder of consciousness.
Although his wife supported the Trust’s view that continuing clinically assisted nutrition and hydration was not in RS’s best interests, other members of his family disagreed.
After the judge had ruled that clinically assisted nutrition and hydration could be withdrawn, RS’s niece made a video of RS, an extract from which was circulated on social media. Other short clips were subsequently used as “evidence” in court.
A neurologist (Dr Pullicino) told the court that the video clips showed that RS was (or was becoming) minimally conscious, such that court should reconsider the decision to withdraw treatment.
Neither the treating clinician, nor the independent expert witness (Dr Dominic Bell, Consultant in Intensive Care Medicine) saw any evidence in the videos, or in their subsequent re-examination of RS, to support the view that RS was other than ‘vegetative’.
The judge wrote:
“I did not find Dr Pullicino a satisfactory witness. He was at times disinclined to answer the questions he was asked. He had failed to make any notes of any conversations about the case… He kept no records of how often RS did not respond to instructions given by his niece. He seemed unclear as to what reports he had read… He was untroubled by any of these deficiencies. […]. I do not think I can place any weight on the evidence of Dr Pullicino.” (Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1)  EWCOP 69)
This case raises several very important issues.
Use of video
Like most other people, I consider it is wrong to place any video (or still photographs) of a person into the public domain without legally valid consent. In this case it was both unlawful (in breach of the transparency order) and immoral, and there was no legitimate defence for it.
On the other hand, I do not think that family members or friends, should be forbidden to take photographs or videos of a person in a prolonged disorder of consciousness (or a person otherwise unable to give consent).
Emotionally, from the point of view of family and friends, photographs and videos help maintain a relationship with the patient which will usually, if not always, be in the patient’s interests.
It can also be of great help in establishing a continuing and trusting relationship between the family and the clinical team. Often a family member will report and observation and the team will reply, more or less subtly, “Well, we have never seen that.” with an implication of “We do not believe you”.
If the family can video what they see, the video can then be shared with the clinical team, who can the demonstrate an attitude of collaboration – “Thank you, and I am glad you have got this for us. We can look at this together”. The family feel that they are being believed. The clinician can then review what has been observed and discuss with the family what is recorded and what it means.
In one case [MX] I have seen, where the patient was said to be in a prolonged disorder of consciousness, the family’s observations were repeatedly discounted by the clinical team. I looked at the videos and, in my opinion, they showed undoubted quite complex behaviour only explicable on the basis of full, conscious awareness. When I assessed the patient, my own observation concurred with those of the family.
The case of MX was not a case where withdrawal of gastrostomy feeding and hydration was being contemplated. However the importance of video evidence as part of the whole bundle of evidence was highlighted in a legal case in 2015 – St George’s Healthcare NHS Trust v P and Q  EWCOP 42 – where a video prompted re-evaluation of the diagnosis that the patient was in the vegetative state. The judge said that the video evidence “provided a watershed insight to the proper conclusion in this case.” Although categorisation of a prolonged disorder of consciousness is no longer necessary (and was never really valid), this emphasises that video evidence can give new or better information.
Thus, video clips taken by the family can be invaluable diagnostically, either providing further evidence in support of the existing diagnosis or, on occasion, showing that observations made by others are true, potentially altering the diagnostic evaluation of the patient’s state.
So, I would not only allow but would actively encourage video recording, especially by family members, and especially of observed behaviours the family believe may not have been seen or noticed by clinical observers. If this is openly discussed at an early stage, the clinical team can, at the same time, point out that any recorded material must not be disseminated beyond those people who have a legitimate personal relationship with the patient.
Now, or then?
There is often an elision between the meaning of an observation in terms of a patient’s current state, and its meaning as a predictor of a future state, the prognosis.
In this case, the term ‘minimally conscious state’ may have been used in two ways. The first, straightforward way was to argue that being in the so-called minimally conscious state was, in its own right, a strong reason to continue clinically assisted nutrition and hydration. The argument would be that the actual amount of awareness was sufficient to warrant prolongation of life, even if there were no change.
The other argument, articulated explicitly in this case I think, was that being in the minimally conscious state carried an implication of further improvement so that it was premature to withdraw treatment.
This distinction – that it is the prognosis given his current clinical state that is important – is not unreasonable. Unfortunately, the evidence concerning the prognostic value of being in a minimally conscious state at seven or eight weeks after global cerebral hypoxia is very poor. There are no studies including an adequate number of patients for a sufficiently long time (first six months) with sufficiently frequent and consistent quality examinations to allow any useful prediction to be made.
What evidence there is, coupled with accumulated personal experience of many clinicians, would suggest that the extent of recovery starting seven weeks after global hypoxia would be small (i.e. not to any sustained level of social interaction), and even that degree of change would be unlikely.
In sum, when considering a person’s clinical position, one must separate out:
- what implications the clinical observations have for decisions, assuming it will not change, from
- what implications it has for prognosis;
and when considering prognosis, one must, additionally, consider both:
- what the probability and extent of any change might be, and then
- whether achieving the highest probable future state would alter the current decision.
Coma, responsiveness, and consciousness
Many of the clinical terms used in cases such as this are not clearly defined, because they arose in an era when fine distinctions were not needed.
The ability to prevent death through medical interventions has exposed the fact that death is not a single event. As someone dies, different systems stop working at different times; for example, it is well known that hair follicles produce hair for a day or so after ‘death’, and corneas are still sufficiently alive to be used some hours after death.
In this case, four clinical phenomena need to be considered: (a) responsiveness, which needs to be distinguished from (b) (self-)awareness; and, at the same time, one needs to be aware of two characteristics of all living things: (c) fluctuation, in the level of function and activity of all bodily systems, and the occurrence of (d) spontaneous and automatic movements, as a normal phenomenon.
All living things are responsive, in that changes in the environment or changes within the organism cause a response in the organism. A loud sudden noise causes a blink or startle reaction; pain, from pressure on a nail bed, causes withdrawal of a limb; a bright light in an eye may cause the pupil to constrict and the eyes to close; warmth and soft music may cause relaxation; and cold and noise may cause increased muscle tension. There are innumerable other examples of responsiveness.
The great majority of responses are automatic, and we all have them most of the time. You will automatically look at something moving to one side of you, or at a face, without any conscious willing of the movement or intention to move.
There are two important points to remember:
- Someone who is defined at comatose, either through accident or due to anaesthesia, with still show responses;
- Responsiveness does not in itself require any level of awareness. Someone will only be totally unresponsive when they have died completely.
Awareness requires or implies an ability to extract meaning from a stimulus, and then to use this meaning to formulate a movement that itself has a meaning or goal. Being hit by a reflex hammer just below the knee leads to an extension of the leg – a reflex or automatic response. Telling the person to stop, or holding the leg fully extended are two behaviours that show (a) that the subject has appreciated that the other person is hitting him deliberately and (b) that the subject is able to work out tactics that reduce the probability of a recurrence. Being startled when a phone rings is automatic; reaching out to pick it up and place it to the ear requires an appreciation that the noise indicated that someone want to talk, and that the object is more than an object.
The first key point about awareness in clinical terms are that it is manifest by
- a behaviour that depends upon the person extracting information from some stimulus; and/or
- a behaviour that carries meaning of has a goal over and above the direct effect it has.
The second key point is that this is a judgement made by the observer; there is no other test.
It is a characteristic of all living things that their state fluctuates. This is very true of all people, and no-one is completely consistent in how they feel, act, or perform over time. Moreover, there are cycles associated with day and night, eating, menstruation, and so on that particularly cause fluctuation.
Fluctuations in responsiveness and awareness are to be expected in all living things, and are present in people with a prolonged disorder of consciousness.
The consequence is that people may be more responsive at some times than at other times; and more aware at some times that at other times.
(d) Spontaneous movements
Spontaneous movement are also a characteristic of all animal life, and continue until death. They are obvious in terms of breathing and heart-beat, but they affect all movements to a greater or lesser extent. The reason for this is, to the best of my knowledge unknown. It is just a characteristic. Humankind, as a species, is remarkably restless, which is one explanation of its spread over the whole world.
Assessing a patient
The observations above have implications for the assessment of an individual:
- a patient is never ‘in a state’ that will persist unchanged. A patient’s state will fluctuate over short and long-term periods around a mean.
- both awareness and responsiveness form a spectrum. Someone faced with a sudden threat may well be hyper-aware of many things not normally noticed; and later will be asleep and totally unaware. More commonly, attention can wander, people drift into day-dreaming, and so on.
- separation of the ‘vegetative state’ from ‘the minimally conscious state’ s not possible, on the basis of any well-founded, valid criteria.
- judging awareness and the level of awareness is ultimately exactly that – a judgement that can be informed and justified on the basis of experience and observed behaviours, but cannot be validated against any external ‘true measure’.
- it is natural human behaviour to attribute meaning to close association and to behaviours. It is common to hear people attribute implausible meaning to the behaviour of pets, and people attribute improbable cause/effect relationships to all sorts of coincidences. (Witness the alleged cause of blood clots by Covid vaccines.)
- rare behaviours are difficult to interpret, but most are spontaneous and not evidence of awareness.
In the end, the lead clinician or, as in this case, the judge has to take into account the totality of the evidence and to avoid being swayed by any one piece of evidence.
In this case
In this case a relative took some videoclips of the patient during the course of a FaceTime interaction with a neurologist who did not review the hospital notes, or indeed collect any other information. Unsurprisingly the judge discounted the ‘evidence’. Both the clinical diagnosis of the current clinical state of a patient, and the estimation of prognosis require a full evaluation of all the evidence.
At an absolute minimum a clinical opinion of this importance must not be given without:
- full review of all the medical evidence
- interviews with clinicians and carers currently involved with the patient
- interviews with as many family members and friends as is reasonable in the circumstances
- a personal assessment of the patient, preferably face-to-face but, in cases where there are no doubts or disputes and the written and oral evidence is all consistent and beyond doubt, then a video-assessment is reasonable.
The neurologist instead drew strong conclusions from a short FaceTime call with the niece and the patient and about than three minutes of video. The matters discussed above illustrate why this is simply an unacceptable approach. Videos are not in themselves proof of anything; they are evidence to be used and interpreted.
Derick Wade is a Professor of Neurological Rehabilitation in Oxford with more than 30 years’ experience of assessing people with severe brain damage and with a prolonged disorder of consciousness. He has been a witness in the Court of Protection in many cases, has participated in the development of both editions of the National Clinical Guidelines on Prolonged Disorders of Consciousness, and has researched into and written about the assessment of awareness and best interests. He tweets @derickwaderehab and @rehabil11484543