It’s not as if I didn’t want to or couldn’t write myself anymore. But after years of writing about what has been happening to Pádraig. After years of despair. After years of wondering how those responsible could sleep at night. After years of wondering: what is it that I have to do to get people’s attention so that we can not just agree to but act to end this horrific injustice that is leaving behind our loved ones with severe acquired brain injury. I have found experts supporting what I have been trying to say. Doing to our loved ones what the health system is doing is not just negligence but it is a grave violation of their human rights – in the full knowledge of what recent research, as well as personal experience, has been telling us about how sABI survivors should be treated.
Here is an extract from an article by… wait!
Joseph J. Fins
The E. William Davis, Jr., M.D. Professor of Medical Ethics and Professor of Medicine, Chief Division of Medical Ethics Weill Cornell Medicine and Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law, Yale Law School, Cornell University
“In the end, the vast majority are placed in a nursing home or institution, which is euphemistically called “custodial care.” Fewer than 15 percent of people with moderate to severe TBI get in-patient rehabilitation.
“For years, we thought this was the end of the story. These patients were deprived of skilled and sustained rehabilitation because we thought there was no hope.
“But in the last decade, neuroscience has made great breakthroughs in our understanding of the brain and its resilience. With proper and state-of-the-art rehabilitation, 21 percent of the most grievously injured can achieve functional independence. That might not seem like a big number, but no one would have predicted this when these people rolled into the emergency room. But with devoted care and sustained rehabilitation, this level of recovery was achieved.
“One of the most distressing realizations has been that many patients who are thought to be permanently unconscious or vegetative – and thus ignored and neglected – are in fact conscious and aware. In fact, one study found that two out of every five patients in nursing homes who have a traumatic brain injury and are thought to be vegetative were actually conscious when carefully assessed. It is a staggering error rate, which would be unthinkable if we were talking about making a credible diagnosis of heart disease or cancer.
“What does it mean to write these people off? What does it mean to mark a patient as permanently unconscious when he is in fact aware and in the room? Imagine what it must be like to lie in a nursing home bed and be ignored as if you weren’t there, estranged from your family and the broader human community. Could anything be more isolating?
“It suggests we cannot think of this as simply a health care financing question, but something deeper and more fundamental. To me, it’s a civil rights issue and one that gets to the core of whom we value and who counts.”
I have been trying to explain the above to politicians, to health professionals, and to the media. – Is anybody listening? Is anybody actually doing something about this? Can you believe that our one and only traumatic brain injury rehab centre in Ireland does not have even a simple EEG – never mind the sophisticated equipment Prof Fins is referring to? That there is not one neurologist working in this field? That there are three beds – not to treat but to diagnose the injuries sustained by sABI survivors? That their treatment is confined to three months and that they are then discharged with no, absolutely NO recommendation as to the therapy required by them?
I have been told to be reasonable. I have been told to be calm. I have been told not to make this personal. I have been told not to name anyone in this blog. That’s because we are all civilised and we want to work together to help Pádraig and others like him.
When is that help coming?
There are huge resources available. But they are either under-used or wasted in many ways. We need access to these resources. Now.
Pádraig had two of his good friends visiting him today. It was lovely. Relaxed. With really good conversation and communication going on. Later on in the afternoon and evening, one of his grand aunts celebrated her 90th birthday and he joined the party with the rest of the family. I am writing this because this is not what the health system had in mind for him. This is not what health professionals expected when they told us that they were surprised that the surgeons operated on him after the accident (keep in mind that this was a life-saving operation); when they were wondering speaking to us whether it wouldn’t have been better had he died (at his bedside, with him understanding every word); when they said on national radio that scarce resources couldn’t be wasted on severely injured like him.
But there he was again today, sailing the Dreamboat up the stream. Celebrating life. An Saol!
PS: Thank you to one of Pádraig’s friends who sent me a link to the article by Prof Fins!