Sunday, 23 July 2017

Don't bash GOSH



There is a cruel echo of the judgment of Solomon about Charlie Gard's unknowing passage through the English and the European courts.  Solomon manifested his wisdom by putting to the test a mother's devotion to the preservation of her baby's life at any cost.  For the wise king's latter day descendants the question is whether exactly that devotion should be repudiated.  However the parallel sadly withers fast.  Solomon's psychological acuity reunited a baby with its mother resulting in an unequivocally just and, for the mother, happy outcome.  No judge's ruling can provide what baby Charlie's parents long for which is a cure and a healthy child.  At most the court can confer agency on them or the illusion of agency which, when parents are desperate, can however unfounded seem as sustaining.

Like many around the world I have reflected often upon this helpless, stricken child and his parents' ceaseless quest to prevail in the face of medical and judicial opinion.  However he has been much on my mind long before he became a national talking point and certainly before he became a political pawn shamelessly deployed by Trump and the object of the Pope's prayers.  Indeed on two occasions I have walked within arm's length of his parents.  Not because I happened to pass them en route to the Royal Courts of Justice when Charlie's case was being argued but because I was in the same place with the same purpose, visiting a child in Great Ormond Street Hospital.

GOSH's doctors and nurses are not infallible nor are they angels.  They are however consummate professionals, many of them not merely national leaders in their field but pioneering world class medics.  The hard and pitiless reality is that when a hospital treats the sickest children in the nation not all of them will go home.

You would hope it might not need saying but every single member of its staff dedicates every fibre of his or her being to trying to prevent that from happening.  The terrible media ferment that has accompanied the Charlie Gard case betrays a common tension at the heart of our relationship with doctors.  We can both expect far too much of them and give them far too little credit.  I don't know how the case will resolve but I do know that condemning his doctors as murderous and unfeeling is outrageous and threatening medical staff at the hospital should be severely punished.

It has been reported that a number of donors to the hospital have declared an intention to withdraw their support.  Such a decision heaps injustice on tragedy.  This great hospital and its sick children need all the money you can spare.  In October I am running a half marathon in support of them and if you wish you can donate here.

2 comments:

  1. Is the situation turning into a circus?
    The medics at GOSH, I firmly believe (as a UK doctor myself), would have looked at all the information published world wide and decided on the very best way to manage this terminally sick child. His specific rare Mitochondrial depletion genetic disease in 2017 is untreatable, no matter where he resides in the world. His very short life expectancy unalterable by any treatments available and those still experimental have not proven suitable or effective in a mitochondrial disorder of the type or magnitude suffered by baby Charlie.

    The child has deteriorated dramatically because that is the natural history of that type of disease. Nothing known to his medical team would have reversed or cured his condition. As time has gone on, his organs are ceasing to function and he has no awareness of his surroundings. The doctors would have been told ALL this to his parents, and the same assessment summary has been supported by the judiciary (UK +EU).
    The ventilator keeps Charlie alive and once swtiched off he will die.
    GOSH are managing a moribund child and the kindest most humane action and in best interest of the child, would be to remove the ventilator and let him die peacefully. His rare genetic disorder ravaged his body and brought on his current near demise.Nothing could have prevented that.
    Extremely tragic and the hospital and staff have acted professionally and tirelessly to manage his declining health in the most appropriate way.
    The parents are fighting against the inevitable and looking at the options on where 'to die'- the Hospital is the best place.. taking everything into consideration- with the patient's welfare priority.
    His parents need to let go, release him from his suffering. I have myself had chemotherapy which affected my mitochondrial functioning and the fatigue and exhaustion were horrific. Looking at Charlie I suspect if he has any deep awareness of his physical body, he could well be suffering and prolonging the inevitable is not in his best interest in that state. Home or hospice with Life support equipment and staff and going on for another weekin my view may be what the parents crave but Charlie needs now to rest in peace and humanely have his ventillator turned off within a day or two,just as GOSH have advised. Death is difficult to face and endure as an observer-
    time to stop holding on...

    ReplyDelete
  2. Is the situation turning into a circus?
    The medics at GOSH, I firmly believe (as a UK doctor myself), would have looked at all the information published world wide and decided on the very best way to manage this terminally sick child. His specific rare Mitochondrial depletion genetic disease in 2017 is untreatable, no matter where he resides in the world. His very short life expectancy unalterable by any treatments available and those still experimental have not proven suitable or effective in a mitochondrial disorder of the type or magnitude suffered by baby Charlie.

    The child has deteriorated dramatically because that is the natural history of that type of disease. Nothing known to his medical team would have reversed or cured his condition. As time has gone on, his organs are ceasing to function and he has no awareness of his surroundings. The doctors would have been told ALL this to his parents, and the same assessment summary has been supported by the judiciary (UK +EU).
    The ventilator keeps Charlie alive and once swtiched off he will die.
    GOSH are managing a moribund child and the kindest most humane action and in best interest of the child, would be to remove the ventilator and let him die peacefully. His rare genetic disorder ravaged his body and brought on his current near demise.Nothing could have prevented that.
    Extremely tragic and the hospital and staff have acted professionally and tirelessly to manage his declining health in the most appropriate way.
    The parents are fighting against the inevitable and looking at the options on where 'to die'- the Hospital is the best place.. taking everything into consideration- with the patient's welfare priority.
    His parents need to let go, release him from his suffering. I have myself had chemotherapy which affected my mitochondrial functioning and the fatigue and exhaustion were horrific. Looking at Charlie I suspect if he has any deep awareness of his physical body, he could well be suffering and prolonging the inevitable is not in his best interest in that state. Home or hospice with Life support equipment and staff and going on for another weekin my view may be what the parents crave but Charlie needs now to rest in peace and humanely have his ventillator turned off within a day or two,just as GOSH have advised. Death is difficult to face and endure as an observer-
    time to stop holding on...

    ReplyDelete