Talk to me, don’t just starve me to death!


Star post

The late Scott Douglas Routley had a nasty road traffic accident around the turn of the century, which damaged his brain.  By 2012, Scott had been comatose, persistently vegetative, “locked-in” – or however you want to put it – for 12 years.   He couldn’t move, or talk.

Scott suffered from a “prolonged disorder of consciousness” (PDOC).  Scott was therefore fed and watered by means of “clinically assisted nutrition and hydration” (CANH).  In that respect, Scott’s condition was similar to that of the late Alfie Evans, about whose death I am presently trying to take the coroner to court, over his refusal to hold an inquest.

A few days ago, the UK’s Supreme Court ruled in An NHS Trust & Ors v Y & Anor [2018] UKSC 46 that there was no need for hospitals to continue pestering the courts, whenever they wanted to get rid of somebody with PDOC by withdrawing his CANH, causing him to die of thirst whilst possibly beginning to feel a bit hungry too if he wasn’t asleep for the duration.

The Supreme Court explained that the Common Law said the hospitals should just get on with the euthanasia concerned, without bothering their lordships, unless the patient’s stubborn family, for example his parents, couldn’t be dissuaded from objecting to this proposed economy.  That, reportedly, was the gist.  You can read more scholarly and neutrally-worded summaries than mine of the case, which I will abbreviate as NHS v Y (and #NHSvY on Twitter), both here and here.

Both Scott and Alfie were blessed with loving parents who clung to the doctrine that where there’s life, there’s hope.

In Alfie’s case, the parents’ hope resulted in no fewer than eight court hearings ending in (so-to-speak) an “objection overruled”, sustained best-interests child euthanasia order, now endorsed for the second time by the Supreme Court.  To all practical intents and purposes, that is.  (You can probably see now why some niggardly skinflints might think that the NHS v Y economy drive to de-regulate euthanasia hasn’t come a moment too soon.)

In Scott’s case, the consequences of having devoted and optimistic parents were even more remarkable than they were in Alfie’s case, as we shall see shortly.


Essential “What if?” ethical thought experiments

But first, let us pause to ponder what might have happened if Tom Evans and Kate James, the parents of Alfie Evans, had been compliant with the wishes of Alder Hey Hospital.  The hospital’s wishes, that is, to stop attempting to preserve Alfie’s life.  And let us consider in parallel, what might have happened to Scott Routley, if he had lived in the UK, under the NHS v Y regime declared to be the Common Law on Monday, and had he been cursed with parents who were too easily intimidated into despair by pessimistic doctors.

In the light of the judgment in NHS v Y, and the #AlfieInquest decision that I am challenging, Alfie (and likely Scott too) would have been caused to die of neglect secretly, victims of what passes nowadays for a notoriously Liverpool-style “care pathway”.  Neither Alfie nor Scott would have enjoyed the safeguards of public scrutiny, in the courts, of their proposed euthanasia: Neither before their deaths, in hearings before professional judges to determine their best interests based upon the mere predictions and speculation of experts, nor posthumously, in coroners’ courts convened in order potentially to deliver juries‘ narrative verdicts based upon the hard evidence of post-mortem examinations, as to whether or not, with hindsight, the deaths could actually be said to have been in the deceased patients’ best interests.


Was Scott in pain?  Was he awake?  How can we know?

For 12 years, it was simply assumed that Scott was unconscious, and that there was no way of finding out if he was in pain.  That assumption turned out to be wrong though.  The Guardian reported the breakthrough thus:

How science found a way to help coma patients communicate.

Where there was a will, it turned out that there was a way, and it didn’t take long to find it.  Scott was connected to brain-monitoring equipment and asked questions.  He was taught how to answer “yes” and “no” just by thinking in such a way that made his brain data easy enough to interpret, as a “yes” or a “no”, for each question asked.  Scott thus had his first conversation in 12 years.  12 years, that is, throughout which his now flabberghasted doctors had mistakenly been convinced that Scott had been unconscious!

The doctors, if they had been British, would probably have tried to convince Scott’s loving parents that Scott was fast asleep, so he could be euthanased by starvation, painlessly, with their consent.  Scott, who wasn’t asleep after all, would have died a horrible death.

I’d never heard of the specific method used to read the thoughts of Scott that his doctors probably cobbled together ad hoc, I dare say hoping to convince Scott’s parents that Scott was unconscious and that it was in his best interests to die of starvation or thirst.  However, I do know that this particular makeshift method of technological thought reading, is not the only feasible method of reading thoughts technologically.  The reading of Scott’s mind used expensive fMRI technology to collect the data, when humble EEG in conjunction with appropriate software would have done the trick just as well.  Talk about a sledgehammer to crack a nut!

I know that there are other and easier ways of reading human thoughts, because sixteen years ago (and, it turns out, “for such a time as this”) I founded the single-issue group called Christians Against Mental Slavery (CAMS).  I published that CAMS website, which includes a science page that publishes some literature review research, some of which suddenly became relevant to the UK’s euthanasia policy on Monday this week, the day of the #NHSvY judgment.  The researcher was my fellow CAMS member John McMurtrey of Baltimore MD, who I think of as a talented scholar.

For present purposes, two in particular of John’s literature review papers are relevant:

Thought Reading Capacity

Physiologic Word Recognition

One of the most important sources John cites is one which God’s providence brought into my possession in a marvelous answer to a desperate, last-resort prayer for a virtual miracle.  The source is dated 1974.  It is the final report of a military-funded research project led by one Dr Lawrence Pinneo, to infer verbal thinking from EEG and/or MEG data.

Feasibility Study for Design of a Biocybernetic Communication System

In 2009, I gave a presentation at the 5th European Symposium on Non-lethal Weapons, summarising John McMurtrey’s work.  Colonel John B Alexander (of Pentagon fame) was present.  Col Alexander confirmed, in answer to the question of a journalist after my talk and his in reply to mine, that the capacity for thought reading from brain data about which I had spoken indeed existed.

My concern in 2002, one half of the overall single issue brought by CAMS, was the ethics of reading the human mind non-consensually.  That remains a concern to this day.


The need for Scott’s law

However, I am today blogging about a different concern.  As a result of the reading of Scott Routley’s mind, it was discovered in 2012 that he was conscious after all.  He was able to understand spoken questions.  He was able to learn the skill of answering those questions just by thinking in a special way.  All this, whilst having a PDOC diagnosis and having been wrongly supposed, for 12 years, to have been unconscious!

The judgment in the Supreme Court in NHS v Y this week could lead to conscious patients suffering terribly, as they are killed slowly by dehydration and malnutrition.  Their deaths would be agonising, like the experiences to which testify those patients who have accidentally undergone surgery without anaesthetic, whilst unable to move or to communicate because of the effect of the muscle relaxant, given just before the intended anaesthetic was inadvertently omitted.

The way to guard against this cruelty, at least partially, is to make it routine and obligatory to attempt, using an effective thought-reading technology, to conduct a conversation with every single patient who is diagnosed to have a PDOC.  Thus we may find out if they are conscious, and ask if they are comfortable (as Scott said he was in 2012), and (of course) ask their consent to have their thoughts read technologically further.

I suggest we need a Scott’s law, named after Scott Routley, requiring the use of thought-reading technology where possible, in order to enrich the lives of patients with PDOC, whilst they wait, unable to move or to speak, for their natural deaths.

Having somebody to “talk” to occasionally whilst in a PDOC, should be a right, now that we know this is technologically feasible, thanks (chronologically) to Pinneo and all the other scientists whose work John McMurtry cites, John McMurtrey for his research, myself for publishing and plugging John’s research, John B Alexander for admitting John McMurtrey was right, and last, but by no means least, Scott Routley, who is, as far as I know, the first patient in a coma ever to have a conversation using the sort of technology I began to be interested in learning about 18 years ago.  And to be asked if he was comfortable, and to answer “yes”.  I’m glad, Scott, if you can hear this from beyond the grave, that at least you were comfortable that day in 2012.

I regret now quenching the prompting of my conscience when it was tugging me towards writing a few words of hope and encouragement to Scott Routley whilst he was still alive.  I just prayed for Scott, for his salvation, and for his comfort, and for either his miraculous healing, or at least a good and happy-ending death.  I hope he is now in a better place, no thanks to my non-existent sharing of the good news of Jesus with Scott (to my shame).  Nor did I get around to sharing with Scott any of my many thoughts about what lessons for the whole world his far-from-unique plight ought to carry.  Procrastination is the thief of time.  It is now too late for me to obey.

I wish Scott had left a legacy, of transcripts of conversations people had had with him, especially if I could have been one of those who had conversed with him myself, after his vocabulary had expanded beyond “yes” and “no”.

I commiserate with Scott’s family, over their loss of a loved one.  I’d be delighted to hear from his parents Jim and Anne, his brother Rich, or his wife Vida.  I never met Scott, but he has a special place in my heart, just as little Alfie has in the hearts of many of those who once clamoured for his “release”, even though (according to the coroner) young Alfie wasn’t even being “detained” in the first place.


The broader picture

Alas, technological mind-reading has potential military applications that are worse than Orwellian.  John Alexander, when admitting feasibility in 2009, denied personal knowledge of any actual deployments.  But the Pentagon wouldn’t tell a front-of-shop spokesman of theirs like John B anything it didn’t want spoken.  So-called National Security, which is a paradoxically international thing nowadays, requires the muting of public awareness of the feasibility of technological mind-reading capabilities, which (CAMS has proved) have been around since the 1970s.

Otherwise, I would hope, proven technological thought reading would already be deployed in every NHS hospital by now, to the potential benefit of nearly every PDOC patient, like Scott, or Alfie if he’d grown old enough to have learned to talk before being taken ill.


Filed under Alfie Evans, Disability, Human Rights, Law, Pro-life, Star post, Targeted

14 responses to “Talk to me, don’t just starve me to death!

  1. Ibble

    I do not agree that it is right to kill anyone because they at the moment of asking, so wish it. Many of us experience thoughts of suicide and emerge from them puzzled as to how on earth we could have felt so wretched. Depression can be experienced and I am sure overcome by people with so called PVS as much as anyone else if we but try.

    • “I do not agree that it is right to kill anyone because they at the moment of asking, so wish it.”

      Agree with whom? I haven’t said that that is right.

      “Depression can be experienced and I am sure overcome by people with so called PVS as much as anyone else if we but try.”

      The best way to improve our understanding of what it’s like to be PVS, is to talk to PVS people and listen to them. Never before that past 35 years or so, has it been possible to do that. Now that it is possible, with the aid of technology, if we make the effort, I believe that that is something we ought to do. Do you agree?

  2. Nature has the answer if we allow it to take its course. It may not be what we want, but it is right in the end.

  3. Angela Ronson

    “No” was my 1st word. I am talking a bit n continue to improve. I am still vegetative but hope this will change soon. It’s been 17yrs. My typing is well above.

    • The point of my article was only partly that we shouldn’t assume that those unable to communicate are unconscious, and never going to recover consciousness, who therefore might as well be dead. There was also the point that there are ways of listening to people by analysing their brainwaves, saving them the trouble (for example) of learning to type with one finger. Has anybody tried to enable you to communicate that way?

      As long ago as 1975, this was proven possible, by Dr Lawrence Pinneo and his team. It looks as though the reason that this capability wasn’t used until much later to enable people in locked-in mental states (e.g. Scott Routley) to communicate, seems to be that the military wanted to keep this research to themselves.

      • Angela Ronson

        Way back before my insurance ran out try to teach me communication without speaking happened. This was before thought reading software. I had some head movement and a consistent yes/no was tried with a computer and a headmouse. I was in Silicon Valley, a computer hub, at the time.

        • There was already thought-reading software in 1975. The US military chose to keep the best of it secret.

          However, that’s not your present problem.

          Your brain may be shot to bits, but what’s left of it still puts together comprehensible better English than many of those I come across on the internet day to day. You are still intelligent, whatever anybody else says. I’d say that in court if push came to shove.

  4. Angela Ronson

    “No” was my 1st word. I am talking a bit n continue to improve. I am still vegetative but hope this will change soon. It’s been 17y. @John_Allman

    • Your comment is most welcome.

      When you say that you are “still vegetative”, do you mean that you spend a lot of your time asleep spontaneously, or that you are drugged a lot of the time, or that most of the time nobody is trying to communicate with you, or that most of the time you cannot talk and are not being enabled to read and to write with one finger? That is, what do you mean? I note from your Twitter account @angelar70 that you ask, “Why do u think the govt. keeps me vegetative? Why can’t I be conscious?”

      I’m sorry to ask so many questions!

      • Angela Ronson

        When I say that I am still vegetative, to my knowledge, my current diagnosis is “semi-vegetative.” I am outright diagnosed as vegetative.
        I am not asleep most the time nor am I drugged. I live by myself in a house. My father lives next door, one sister lives in an apt behind me, and one daughter who is my caregiver lives 2 miles away. I am mostly in bed, but a couple times a week, I get up in to an electric wheelchair. I have a laptop n cordless phone. I have a TV with remote. I use remotes.
        When I ask “Why can’t I be conscious?” I am listed as vegetative. The word vegetative has remained with me since I was in a coma. “Vegetative” is not conscious. Inability to swallow now keeps me vegetative.

        • Is the ridiculous labeling of you as “semi-vegetative” something you’d like to challenge legally, in the courts one day? It ought to be easy. Nobody with a mind capable of writing perfect English like yours ought ever to be insulted, by comparing him or her to a mere vegetable, let alone half a vegetable.

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