I can’t move or speak but I can hear and feelBMJ 2018; 363 doi: https://doi.org/10.1136/bmj.k4036 (Published 12 October 2018) Cite this as: BMJ 2018;363:k4036
All rapid responses
Brian Boyle, writing ‘with the expertise of having been the patient’, has written an article which has attracted rapid responses from two people, Nick Clarke and Kate Allatt, who having themselves had strokes, have gone on to acquire understanding and expertise which they have attempted to use for the good of other patients. They are both [I am not certain in the case of Nick Clarke] individuals who became involved ‘as laymen’, and who have acquired expertise: certainly in the case of Kate Allatt, one of her objectives has been ‘education of the clinicians’. Kate Masters, has become ‘a lay expert’ in some ‘NHS issues’, notably the issue of ‘DNACPR Orders’ and communication between clinicians and families about CPR. Kate has written ‘with feeling’ (1) about how some clinicians seem resistant to ‘her expertise’:
'I have spoken to, and worked with doctors for three years since the legal ruling – on and off Twitter - explaining why, in the current challenging healthcare landscape that offers many real barriers to this discussion, it is so important to families that it is offered, because of the choices and chances the discussion offers. I am continually told that dad’s ruling has had unintended consequences, yet have consciously avoided criticising the misplaced blame that is constantly placed on the ruling, choosing instead to factually correct the misconceptions. Yet at every turn I see blame coming back at me in the form of articles such as this.'
So, we have some lay people who ‘become quite expert’ and try, often without much success, to ‘inform the professionals’: I must admit to ‘an interest’ here, because I do the same.
Dr Kathryn Mannix, seems to have written her book ‘With the end in mind’, with the aim of demystifying the clinical processes involved when people are dying for lay readers: perhaps surprisingly, the Royal College of Physicians has suggested (2) that healthcare professionals might read Kathryn’s book as part of their professional development.
I drew Kate Allatt’s attention to Brian Boyle’s article, via Twitter, and when I did Kate almost immediately tweeted back to me (3):
‘Omg how long have I been saying the exact same thing? Why don’t industry, researchers use me more for my knowledge?’
Indeed – why is this ‘lay expertise’ not fully utilised, to improve the NHS? I know there are many individual clinicians who seek to learn from patients and other lay people: but doctors, nurses, paramedics, etc, work ‘within the NHS system’. They are ‘constrained by protocol and guidance’.
And I am not suggesting that the ‘lay understanding and expertise’ which I am writing about, somehow turns those lay people into doctors and nurses: we definitely should not be debating how surgery should be performed – that ‘is clinical’. A suitable term for the lay expertise I am describing, might be ‘epi-clinical’. In the context of a comatose patient, ‘epi-clinical’ would include the reasons for and nature of discussions between clinicians and relatives, and how such discussions should be ‘documented’. One lay expert I am in contact with, believes that relatives should use mobile phones to record discussions between relatives and doctors: I would promote the shared-creation of any written record of a discussion which involved relatives and clinicians, and the co-signing of the written record by relatives and clinicians. Neither of us is at all happy with ‘the traditional NHS approach’, which seems to be that the clinician writes a description of the conversation, and then the clinician alone signs that record. And one of the reasons for that discussion, in the context of coma, would be to ensure compliance with the Mental Capacity Act: I have been in dispute with what often feels like ‘the entire medical establishment’ for some years, as to ‘what compliance with the MCA amounts to’.
‘We’ also often ask different questions – for example, in a piece I recently wrote (4) partly in response to Kathryn Mannix’s book, I asked:
‘Why, is the transition-point before which a dying loved-one and friends and family can still 'say their goodbyes', and the time after which saying those goodbyes has become impossible, any less important than the transition-point at which future CPR changes from having a chance of being clinically-successful, to almost certainly being clinically-unsuccessful?'
And, I am firmly of the opinion, that those protocols are NOT sufficiently influenced by ‘lay expertise’. It seems to me, that what ‘the NHS’ usually wants from lay people, is descriptions of their experiences: then ‘the professionals’ believe that analysing the issues, is ‘their job’. That introduces an inevitable bias – a bias, that I ‘see all the time’. The ‘bias’ is not within the ‘understanding and expertise’, which very often everyone agrees on: the bias, to probably express it somewhat imperfectly, is introduced ‘when the balance-points between competing objectives are settled on during ‘protocol design’’. Put simply, it isn’t sufficient for the professionals to ‘listen to the lay side’ and for the professionals alone to then ‘think out the solutions’: somehow, we need to get laymen inside the groups which actually ‘do the thinking out’, and the subsequent design of the professional protocols, or else those protocols ‘will never be perspective balanced’.
I admit – I do not understand, how we achieve that [for my issues, it requires a pool of lay people who understand the MCA, who have not been over-influenced by the assertions of clinicians, and who are willing to become involved: I am not certain that enough such people exist]: but averting your ears, when expert lay people such as Kate Masters and Kate Allatt are trying to talk to you, definitely will not achieve it.
It does seem to me, that when service users move beyond simply describing the problems they experienced, by acquiring ‘expert understanding’ and then trying to discuss with the NHS not only the problems they experienced, but also the changes they see as necessary for the solution, the NHS ‘is deeply ‘unsettled’’ by that.
Competing interests: No competing interests
Communicating there are ‘no promises just possibilities’ gives patients, but even more importantly, vulnerable family members, HOPE. It’s not false hope, nor is it about quashing all hope of any future improvement either.
Frankly, during the last 8 years of my voluntary, global Locked In Syndrome (LIS) advocacy, I’ve seen a woeful lack of much research on the subject apart from my own 500+ families I’ve helped globally. My passion to help others stems from my own unexpected recovery from my right vertical artery dissection, occlusion and infarction of my Pons in 2010 at 39 years of age. This is my recovery story https://youtu.be/CRjoAt9k5lE.
I believed, tried (and failed a lot) repetitively, frequently and intensively. The only difference is that I called it ‘willing’ in my internationally published book ‘Running Free: Breaking Out of Locked In Syndrome’. I just instinctively knew that I needed to somehow re-wire and re-organise my broken brain myself, after I’d been written-off in terms of any significant recovery. I would will different parts of my body to move over a thousand times a day back then. Then, I would desperately try to increase the range of movement of that limb, until it became stronger and the range of movement increased. I did all this as a desperate mum of three young dependant children and marketer, with no medical training.
The existing research is out of date. Furthermore, scientific prognoses contrast starkly with my own ‘anecdotal’ findings. For example, I’ve witnessed someone eat again after being fed through a PEG for 19 years. I’ve seen a woman turn her arm fully over for the first time, just 9 hours after my bedside visit. I visited a man and his foot and thumb twitched just half an hour after I visited him in hospital. His wife sent me the Whatsapp video as proof. So, its simply not true that in the immediate aftermath of a brainstem stroke patients, are not necessarily ‘the best they will ever be.’
These patients had luck, yes. They had incredibly supportive families too. But most important of all I inspired them to believe and try. I explain to the broken, vulnerable families I visit, that they have nothing to lose and everything to gain if they believe and try. I stress to them, there are ‘no promises just possibilities.’
It is true that not everyone makes significant outcome improvements. But did you know that many long term locked in syndrome individuals are often some of the happiest people you’ll ever be fortunate to meet?
For example, take Kati from Finland a TEDx ‘speaker’ who remarkably got married 16 years after her brainstem stroke. Others study University degrees and most importantly get to be around to see their children grow up.
Because of this I developed the #StillMe social media selfie campaign. A campaign to educate the world that clinicians must not presume to know someone else’s quality of life. Furthermore, we must not project, or presume, what we think it might feel like in a Locked In state. For example, I’ve witnessed a boxer from Belfast do a 360 degree change in his mindset from what he thought he would think if he suddenly became paralysed. As an able bodied man, he thought he wouldn’t want to live and even had a living Will with his wife to that end. So, imagine her surprise when, given the choice to turn off his life support machine off, he surprisingly blinked he wanted to live?
The simplest of pleasures – oral hygiene, the wind on your cheeks, chatting online through eye tracking technology or watching your children grow, seem preferable to dying. Most long term LIS survivors prove that they are not ‘better to be dead’ in actual fact.
I’ve never ever met a patient who is not cognitively aware after brainstem damage, but often medically labelled unconscious or minimally conscious. Surely, establishing a simple system of communication is all that is needed? Please note, I have never met a vegetative, brainstem damaged patient!
ICU staff do a remarkable job of keeping patients alive. Fact. It’s also a fact, that my life, for the last 8 years, would not have been possible without the most incredible NHS ICU staff. THANK YOU. So next to preserving life, is establishing a system of communication really that important? Hell Yes! Communication is a basic human right! I even said this in my own TEDx talk ‘Voicing Inner Thoughts Matters’ https://www.youtube.com/watch?v=SptlyNYjtIU.
I think communicating early with patients will also help them to psychologically and emotionally recover from their often terrifying ICU experiences later. If their feelings of fear, hallucinations, pain, loneliness, boredom and separation anxiety remain uncommunicated, I think this can be costly back in the community for our health and social care agencies.
In fact, I feel so strongly about this that I am now campaigning for communication to be the fifth vital sign in hospitals.
Surely, the key to motivating patients to get the best health outcome and reducing care costs is about knowing and addressing what matters to patients. You know being patient-centred. In order to establish what matters to patients surely you need to communicate to patients, their families and friends more effectively? For me, what mattered to me was to hug my kids and run again.
However, beyond this, we desperately need to do more LIS improvement research into this rare disease/illness. We need to change the conversation about presumed quality of life. Finally, we must conduct systematic case study reviews of some of the many global patients I’ve worked with over the last 8 years to build our evidence-based research. I believe, will try and HOPE to make this happen.
Competing interests: No competing interests
This is exactly why I started my stroke charity and in essence our strap line conveys what we are about #WeCareBecauseWeveBeenThere - I had my severe stroke in Sept 2012 & soon discovered that there is little help, support information and hope for others who have been impacted by Stroke. I pull on my own experiences and those of other stroke survivors not only to advocate strokes but also give the stroke survivor a sense of purpose and well being once again, make them feel useful & if we used a model similar to mine whereby we call on others who have been there (whatever the condition) then nobody could offer this service to the patient & their family
Competing interests: No competing interests
This article is so inspiring and informative. It is so important to think about patients holistically and remember the person within.
Communication is key and addressing this in patients such as yourself is vital in order to improve health and wellbeing.
Thank you for raising this important message and bringing about awareness of the importance of non-verbal communication in healthcare.
Competing interests: No competing interests