By Lynne Turner-Stokes, 30th March 2021
Editorial Note: See also the blog post about the role of the expert witness, Dr Patrick Pullicino, in this case, here.
Jenny Kitzinger’s blog on the role of video in court cases about profoundly brain-injured patients is a very interesting read which resonates with my own clinical experience caring for patients and chairing the Royal College of Physicians’ Working Party that produced the national guidance on Prolonged Disorders of Consciousness. Many of the issues she raises are pertinent to our daily clinical practice, even outside of the legal context.
Videoing patients in disorders of consciousness can be a very valuable addition to the tool kit for assessing consciousness, but it has to be approached with great care and attention by families, healthcare staff and legal professionals, and it must be placed in context.
One advantage of videoing patients is that this can allow family members to capture a moment of responsiveness which might not have been witnessed by the clinical team. A camera phone might show a patient responding to a family event – like being presented with a new nephew – and it may only be those close to the patient, people with emotional salience, who generate such a reaction. It may also be a relative who has been at the bedside hour after hour, day after day, who is able to detect that the patient was able to respond to a question in a brief island of alertness. Sometimes family videos can inform diagnosis, as they offer clear evidence of possible awareness. I’ve had experience of that clinically: for example, in one patient who later emerged into consciousness, the first clear evidence I saw of his ability to engage in interaction was a video taken by his son of him responding to the voice of his sister on the phone from New Zealand.
At other times, however, families believe they have video showing that a patient is aware, and this is simply not what the video shows. The misinterpretation of such video material is understandable. It is, as Jenny Kitzinger points out, not surprising that families (and the general public) may interpret eye opening or spontaneous/reflexive movements as evidence of consciousness, given the dominant media images of what a “coma patient” looks like. And the behaviours of patients in a vegetative state can be very challenging to interpret. This is still true for me even after 35 years of working in this field. I sometimes look at a patient and wonder: “Is she looking at me? Is he following me with his eyes?” It can be extraordinarily tantalising.
Assessing consciousness is even more difficult when you are looking at a video rather than being at the bedside: it is almost impossible to work out, for example, if a patient is tracking with their eyes if you are not in the room with them. Other behaviours can be even more confusing. I remember one patient, who proved to be in a permanent vegetative state, who would chuckle away as if at their own personal joke: if they had had headphones on, you would think they were listening to a particularly funny show. But the giggling was completely unrelated to external stimuli. It was also disturbing, as the behaviour carried on day and night without any respite. We have had many other patients in vegetative states who just weep – and this, of course, is particularly distressing. Although crying can occur in vegetative states, as a clinician one has to be alert to the possibility that it heralds increasing awareness and the patient is indeed experiencing emotional distress at some level.
Hand movements are another common feature of disordered consciousness that can be confusing. When a patient appears to squeeze someone’s hand, this can be interpreted by family members (and even by some non-specialist staff) as evidence of consciousness. But this is not necessarily so. Patients with severe brain injury often demonstrate ‘primitive’ reflexes and one of the most common is a grasp reflex (automatically closing their fingers around anything placed in their hand). But this may look (and feel) even more noticeable if for example, rather than an object, they are holding someone else’s hand. When the other person squeezes or strokes the patient’s hand, the reflex will be stimulated repeatedly and it can feel like a response. Indeed, it can be experienced as an intimate moment of connection.
During the public health pandemic, when video links are often the main (or only) link families have to a patient, it can be hard for families to understand their loved one’s condition. Several families we have worked with via video conferencing platforms have been left with very confusing messages. For example, we have seen nurses and healthcare assistants facilitating the video conference and trying to offer the family comfort by telling them that the patient is responding to them. Not uncommonly they report that the patient is ‘blinking’ or ‘squeezing their hand’ to indicate that they are moved by being able to see and hear their families. This can prove to be misleading when the patient is later systematically tested and reviewed over many months and the movements are found to be spontaneous or reflexive. Disappointment after their earlier optimism can often serve to deepen the family’s distress and, in some cases, they have been unable to shake the belief that the patient has deteriorated in the hospital’s care and that the staff must therefore be hiding something from them.
The pandemic has had very many devastating effects, one of which is that it has denied families the experience of being able to spend time at the patient’s bedside. From the clinical perspective this has had several adverse consequences.
- Firstly, patients are bound to respond most readily to familiar people and so family members form a critical component of the assessment process. Not having them present could lead to misdiagnosis.
- Secondly, catastrophic brain injury does not just affect the patient: a key part of our role is to work with the family and support them to understand both what has happened and what to expect for the future.
At the outset it is often unclear exactly how much recovery there will be. Spending time in person with the clinical team on an almost daily basis helps to build trust and shared understanding between the family and professionals as we work together to examine behaviours and possible responses. Over time, the patient’s trajectory of change (or its absence) becomes clear – but this is a journey that the clinicians and families must take together and in person.
So, useful though a video can be, it should always be seen in context, and understood for what it is: a limited snap-shot. Understanding such clips needs to be put in the context of a patient’s overall state and assessed over time by clinicians with the appropriate skills and experience in this most complex area of healthcare.
Lynne Turner-Stokes is the Northwick Park Professor of Rehabilitation Medicine at King’s College London and Director of the Regional Hyperacute Rehabilitation Unit at Northwick Park Hospital in Harrow.