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 an 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 children and entrepreneurial 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The existing research is out of date.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 from County Durham eat again after being fed through a PEG for 19 years. I’ve seen a 24 year old Polish woman turn her arm fully over for the first time, just 9 hours after my bedside visit. I visited a mid thirties man in New York 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. Then, there is Bram the DJ or Shane the conference organiser. 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. @KateAllatt