Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

  1. the patient autonomously refuses it. (autonomy)
  2. continued life is no longer in the patient’s interests (best interests)
  3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

Sometimes treatment is withheld or withdrawn because it is “futile.” Dominic Wilkinson and I have argued that although futility is often said to refer to “best interests”, it is more appropriately interpreted as a justice justification for limitation, that is, criterion 3. The reason we have argued this is that the best interests justification (2), requires that doctors establish that life is no longer worth living. That is, that the person would be better off dead. This is a very difficult standard to establish, even if the concept of a life not worth living is coherent. Justice does not require that we establish where the line of of a life worth living is. It only requires a comparative judgement – that compared to other uses of a limited medical resource, this use is not justified. The NHS has thresholds for cost-effectiveness that it routinely employs. A justice justification for limiting life prolonging medical treatment only requires an extension of this every day approach. For example, a treatment which has a 1/10,000 of prolonging a person’s life is a lower priority than a treatment which has a 50% chance of extending life. We need not say that the first treatment is “futile” or confers no benefit to the patient. We need only say that it is very poor value for money.

Decisions about Children and Other Incompetent Patients

In cases involving children, babies (such as Charlie Gard), or others without capacity, the first justification is not available – that is, the patient lacks capacity to autonomously refuse further treatment. In such cases, the court is asked to make a decision about what is in the best interests of the patient. This is a different decision than a substituted judgement for what the patient would want if they had capacity, although of course when adult patients lose capacity, their prior known wishes are an important factor. Explaining the basis on which he could override the parents, the judge said:

“although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

Best interests apply across a number of decisions around children, for example in family law cases, when two parents might reasonably disagree about decisions affecting a child the court is asked to choose which option is in the child’s best interests: which on the balance of probabilities will lead to the best outcomes. However, in a case involving limitation of life prolonging treatment, one option ends the life of the child.

The judge relied on best interests as laid out in a previous judgement (Wyatt v Portsmouth NHS Trust):

“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term “best interests” encompasses medical, emotional, and all other welfare issues.”

The critical issue is in this case is how to define “best interests.” For example, here is a UN definition of best interests:

According to the UN Convention on the Rights of the Child, assessing the best interests of a child means to evaluate and balance “all the elements necessary to make a decision in a specific situation for a specific individual child or group of children”.[1] Due to the diversity of factors to consider, usually more than one profession or institution is involved in the assessment process, bringing together various perspectives and areas of expertise from the country of origin and destination and, in particular, the perspective of the child. The following aspects are relevant for the best interests of the child:
The child’s views and aspirations;
The identity of the child, including age and gender, personal history and background;
The care, protection and safety of the child;
The child’s well-being;
The family environment, family relations and contact;
Social contacts of the child with peers and adults;
Situations of vulnerability, i.e. the risks that the child is facing and the sources of protection, resiliency and empowerment;
The child’s skills and evolving capacities;
The rights and needs with regard to health and education;
The development of the child and her or his gradual transition into adulthood and an independent life;
Any other specific needs of the child.[2]

None of these criteria clearly direct us to answering the question of when a child would be better off dead.

When Is Death in a Patient’s Best Interests?

In Charlie Gard’s case the possibility of experiencing pain from ventilation, suctioning, and other medical reasons was cited as a negative aspect of his well-being. But there are highly effective forms of analgesia, sedation and anaesthesia for these routine medical procedures. No one suggests that the discomfort associated with such procedures is a reason not to offer them.

Perhaps there is some other negative aspect to Charlie’s life such that it makes it the case he would be better off dead. Epileptic fits, perhaps. But again, these can be controlled with deep sedation.

Perhaps the argument is that in other cases of severe illness, the positive aspects of medical treatment outweigh these negative aspects, but in Charlie’s case there would be no positive aspects because of his profound cognitive impairment.

There are some conditions which I would regard as a life not worth living. One such condition is severe dystrophic Epidermolysis Bullosa. This is one of the candidate conditions for neonatal euthanasia in the Netherlands. In this congenital condition, the skin relentlessly peels off, causing extreme pain and infection. In the most severe forms, the child often dies of infection in the first year of life, even with maximal medical therapy. It seems wrong to live a very brief life of severe suffering (even if it can be almost entirely relieved) for no benefit.

Yet Charlie Gard’s case is different. He would not necessarily die in the first year and we don’t know for certain what level of cognitive function he might finally gain. It is true doctors are confident but it is important to remember that at one stage, according to the summary of the judgement,  “Great Ormond Street Hospital, where Charlie was being treated, got as far as deciding to apply for ethical permission to attempt nucleoside therapy, a treatment that has never been used on patients with this form of MDDS. But by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all there was that his epileptic encephalopathy was such that his brain damage was severe and irreversible, that treatment was potentially painful but incapable of achieving anything positive for him.” This delay, if caused by the ethics process, would be another example of “lethal ethics”.

But can we be certain it is too late for anything positive to come about from treatment. To be sure, the odds are vanishingly small. But if they are not zero, why not have a trial of treatment for several months, or a year, under strict pain control (which we are told is so effective in palliative care)? The parents seemed to accept that Charlie’s current state was not one which was worth prolonging and if no progress was made, one could stipulate that treatment must be withdrawn. (There are clearly problems with jurisdiction in the US but the resources anyway would be finite as Charlie presumably does not have US health insurance.)

Is a month or year of experimental treatment that offers a slim chance of improvement clearly against his interests? This seems a different kind of case to the case of severe Epidemolysis Bullosa, where death and suffering are inevitable.

It is important to remember that this is no longer a choice between two futures. After death, there is no future that the decision can enhance. There is no patient and they no longer have any interests. There is only one pathway that the patient can be placed on.

If the treatment might be successful but will lead to a very severely impaired future, perhaps with multiple disabilities, it would still be in the patient’s best interests to proceed. There is no other future available to the patient. In order for treatment to be withdrawn on this ground, it would have to be shown that the individual is not merely severely disabled but living a life which is worse than death. This is both conceptually and empirically very difficult to prove.

The judgement thus seems to assume that a life with severe cognitive impairment is a life which is not worth living. This is highly controversial and difficult to defend in any precise way. I have spent over 20 years studying these issues and although I believe there are some lives which are not worth living, such as epidermolysis bullosa, I can’t say how cases like this can be said to be not worth living.

The basis on which many adult patients are allowed to choose to die is different. Adult patients may choose to have treatment withdrawn, even if that means their death, and it is not unusual for patients to make this choice. I have argued that voluntary euthanasia should be legalised in addition, so that patients whose suffering is unbearable for them, but whose disease is not immediately fatal without treatment may choose to die. The argument for both of these is based on the autonomous choice of the patient. Whilst euthanasia- where patients could make an autonomous choice to die –  is still controversial, it is a basic tenet of medical ethics that patients should have the ability to autonomously consent to – or refuse- treatment, and more broadly dictate how their life goes, and ends.

If we reject best interests as a basis for withdrawal of treatment, it would not mean that the decision to withdraw treatment could never be justified. If treatment is “futile”,-that is there is a vanishingly slim chance of meaningful improvement-, then treatment might be withdrawn on reasons of justice, so that the resources can be used for others with a better chance of survival, or a longer life, or a much better quality of life. That is, it is not worth spending hundreds of thousands of pounds trying to achieve a tiny improvement.

But now we arrive at the problematic aspect of the case of Charlie Gard. The most appropriate justification for limiting his life prolonging medical treatment would be on grounds of distributive justice. However, if an individual, or his parents, are willing to fund that treatment themselves, then arguments for limitation of medical treatment on distributive justice grounds would not apply. This was precisely what Charlie Gard’s parents were proposing. It would have been a very plausible argument that there much better uses of severely constrained NHS resources than providing continued artificial ventilation and expensive intensive care, together with experimental treatment to Charlie Gard. But that was not the argument of Great Ormond St, the doctors or the judge. Instead, they relied on the concept of death being in Charlie’s interests. While I believe that is a possibly sound argument, I have to admit I am not convinced it applies in the case of Charlie Gard.

Here is a thought experiment to put pressure on that argument. If life is really not worth living, it is cruel to allow an individual to continue to live. It is better for that individual to die. Now imagine euthanasia was legal in the UK, as it is the Netherlands. And imagine Charlie does not need medical treatment to keep him alive, though his cognitive impairment is the same. His parents are willing to feed him and keep him alive. If his life were really not worth living, the Court ought to order  euthanasia in his interests. But that would be wrong.

Of course, one might respond in this fictional version, there are no burdens of medical treatment to cause Charlie to suffer. But are the burdens of medical treatment, with modern pain relief, sedation really that great? I find it hard to believe, especially when we see people who spend their lives on artificial ventilators saying their lives are worth living.

Here is another thought experiment. Imagine that we discovered a baby like Charlie Gard in the US with an identical condition. However, he was already being treated with experimental treatment. Would we think it cruel and unusual, a kind of torture, such that treatment should immediately be stopped so that he could “die with dignity”? I doubt it. Such experimental treatment, under sedation and analgesia, would continue for a period of weeks or months until it was clear whether it was providing a benefit.

Taking best interests alone, the slim chance of life is almost always more in the patient’s interests than a definite death. Where an experimental treatment exists, steps ought to be taken to minimise the suffering and side effects of the treatment. However, when the alternative is death, the most appropriate justification for denying treatment is justice, not that it is in the best interests of the person to die. And when an individual, or others on their behalf, is willing to fund the full costs of the treatment, the argument from justice does not apply.

Of course, in the case of Charlie Gard, it is possible that the treatment might have some effect or that he could continue to live for a long time in a severely brain damaged state with the support of mechanical ventilation. If long term mechanical ventilation does not provide sufficient benefit to warrant its high cost, that would be a reason to deny life prolonging medical treatment. But it is not a reason to prevent his parents taking him to the US to take the one chance of a better life, even if that chance is very small.

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24 Responses to Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

  • Jane Cain says:

    I’m at work – will comment later, but this makes sense!

  • Isabella mackay says:

    This is exactly what I have been trying to say all along, Charlie was denied medication very early on if he had received the proper medical care he would not be in this condition now.. the so called specialists said his parents were a spanner in the works stopping them from taking Charlie off support. I am so angry this little boy has been let down by the British courts and the NHS..

    • Aleksander Mazurek says:

      ~ That’s what we believe also Charlie should be in America long ago x
      So very ANGRY he is still in the UK. Our love to Connie, Chris & all the family in London.
      Dear Lord listen to our prayers for Charlie our niece’s son & give him a chance in life x

      • Lisa Irvin Chisnell says:

        Many are praying for baby Charlie, here in America, also.
        Many!
        Will keep praying for Connie and Chris, and appeal, and, of course, for sweet Charlie!
        They were denied legal aid, I read. Might that be a legal angle for appeal?

        • Lisa Irvin Chisnell says:

          To add:
          Justice must be DEMANDED for the LIFE of this child–NOT requested!

  • Becks says:

    Can you help Julian if there was an appeal representing the family re ethics? If so contact charliesfight.org or Facebook group Charlie’s Army. Thank you

    • Julian Savulescu says:

      Thanks David. I agree he is very unlikely to benefit. But could you, or someone, tell me exactly how the extra burdens outweigh the small chance of improvement. If it were me, I would want 6 months of intensive care (with sedation and analgesia – we are always told how effective palliative care is) for a 1/10 000 or 1/100 000 chance of living. Such treatment is “futile” in the sense of not being cost-effective, but it is not obviously against my interests. One judge said the standard should be that the child’s life should be “demonstrably so awful that the child is condemned to die.” I guess I am not certain that Charlie’s life will cross that threshold. We ought to be pretty reluctant to condemn someone to die who doesn’t want to die. The reaasons why resources are important is that if one infant’s life costs £2million, and there are 10 others whose treatment costs £200,000, we are faced with the choice of giving one infant a chance, vs 20 others, if our resources are fixed. However, resources are not an issue – Charlie’s parents have raised funds to have him treated outside the NHS. Justice, not interest in death, is the better ground for limitation of treatment.

      • Julian Savulescu says:

        Sorry that comment was meant for David Jones. Becks, I am happy to help if I can. I have written a Comment for a medical journal. If that gets published, Charlie’s lawyers could use that. I will also write another blog.

        • Joanne says:

          The parents refusal to face the reality of things fundamentally caused their child more re suffering than he needed to. He is a living being who is suffering and will always suffer tremendously. The parents naive selfish wants overtook what was right.

      • David Albert Jones says:

        Dear Julian, I do not know enough about Charlie’s medical condition to know whether, in his case, the proposed experimental treatment would be futile. Even though this is the consensus of the GOSH medical team, doctors can be influenced by value judgements about disability and it has sometimes happened that courts have decided that doctors underestimated the benefits of continuing treatment. I also think the courts do not give sufficient weight to the views of parents in such cases. Unless it is very clear, beyond a reasonable doubt, that the parents are behaving unreasonably, then I think they should make the decision. I have argued this in print. http://www.catholicherald.co.uk/news/2017/04/11/judge-says-doctors-can-withdraw-babys-life-support-against-parents-wishes/

        Nevertheless, at some point we will all die, and often we will be undergoing medical treatment before we die, and as the chances of recovery fade, the burdens and side effects of the treatment are a reason to forego attempts at cure and to focus on symptom control. This is true of dying children just as much as dying adults. It is not just about the money (though I also agree that distributive justice is a reason for limiting expensive treatment). It is also a question of acknowledging the limits of medicine and the potential of medicine to inflict harm.

        I am heartened that you are arguing in favour of the right of the parents, if they have raised the money, to seek treatment for Charlie. I agree that there should be a strong presumption in favour of sustaining life and a strong presumption in favour of liberty. However, I do not think that every possible attempt at cure is always justified, however slight the prospect of benefit, and I do not know enough of the details in this case to say whether in this case the prospect of benefit for Charlie is a real. I am sure that for some dying children it is in their interest to shift from attempts at cure to focus on symptom-control.

        • Julian Savulescu says:

          I agree with all you have said, David. Thanks. I too don’t know the precise details of the case so maybe I am off target. If there really is no hope of improvement, then it is not in his interests. But I guess I am just not that confident based on what I have seen in the media. I spoke to Peter Singer and Bob Williamson (informally), both advocates of euthanasia, who agree with me about Charlie Gard. None of us are “right to life” (as you know) but I think none of us is impressed by the intolerable suffering argument. I think this is a case where reasonable people (you, me, Dominic Wilkinson, Peter Singer, Bob Williamson, etc) can disagree. In the face of uncertainty about whether the burdens really do outweigh the benefits (and ethical, not scientific or medical issue) we ought to respect the parents’ liberty and interests.

  • Tricia Hidayat says:

    Can you help Chris and Connie Gard? It’s so wrong to let Charlie die without trying this treatment in the US. If you can contact them through Faebook Charlie’s Army. Thanks

  • Alexandra panousaki says:

    Charlie needs to get the treatment he needs to get better please don’t delay any more the chance for him to have a life .

    • Joanne says:

      He would never “get better”. Have you read all the detail? The poor baby could not feel, see, hear, move his arms or legs it swallow. He would never be able to do any of this. IF the trial treatment had worked, he MiGHT have been able to sense movement around him. He would still have been locked in a useless body, probably in co start pain. The parents should have let him go months ago. Now they will find it harder to accept because the believed in a fantasy

  • David Albert Jones says:

    Many of these responses assume that the experimental treatment that a team in the United States would offer has a realistic chance of benefit. The view of the doctors in the UK is that this is very unlikely. Indeed, according to the report from the court, the US doctor agreed that Charlie was unlikely to benefit from the treatment.

    “I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.”

    https://www.judiciary.gov.uk/wp-content/uploads/2017/04/gard-press-summary-20170411.pdf

    The responses also underestimate the burdens that Charlie would suffer both from the journey and from the experimental treatment, along with the ongoing burden of the treatment he is receiving.

    We do not know the details of the case but in at least some cases treatment is futile, is very unlikely to benefit and is certain to impose extra burdens. The key question is not whether Charlie’s life is worth living. It is worth living. The key question is whether the treatment is worthwhile or whether now is the time to accept that a child is dying and needs care with a different focus.

  • Paul Treanor says:

    Most of Julian Savulescu’s post, and Dominic Wilkinson’s reply to it, has now been invalidated by subsequent developments. The case has become politicised, and therefore decisions must be taken on political grounds. Medical ethics arguments are no longer relevant. Donald Trump’s intervention has highlighted the politicisation of the case, but he is almost certainly responding to prior adoption of the Charlie Gard case as a cause célèbre for the right.

    The right sees the imminent death of Charlie Gard as an example of statist oppression, of pro-death attitudes in western culture, and of betrayal by the elites. These tweets are illustrative:

    @RedheadAndRight
    The leftist death cult, that think nothing about terminating a baby even in full term, are not going to care one whit about #CharlieGard.

    @Patriot_Musket
    The leftist argument on Charlie Gard will be that if he had been aborted this never would have been a problem.

    @Stop_Groupthink
    The MSM/Leftist media complex are silent on #CharlieGard because they love #SinglePayer, zero-choice, anti-FreeWill government death panels.

    @ConserValidity Jul 2
    Here’s the sicko-Leftist Democrat Party’s Inhumane Single-Payer in Action: Charlie Gard’s parents lose final appeal

    @deculley
    Replying to @Pontifex
    This is quite hypocritical when put in context with the statement on Charlie Gard
    You are a Leftist through and through

    @rgreader
    The reality of leftist healthcare…a child sentenced to death #CharlieGard

    The case has resulted in a clearly populist mobilisation on social media. The right identifies the parents as victims of the state, and as opponents of oppression. Since perception determines fact in politics, they took on that role in practice. That have aligned themselves, de facto, with the anti-immigrant alt right, with people like Jack Posobiec and his followers:

    @JackPosobiec
    The EU says “compassion” to the millions of migrants pouring into their borders, but ruled one of their own should die #CharlieGard

    @rickhowell30
    Replying to @JackPosobiec
    EU is a sack of crap. When will true Europeans rise up against this global tyranny.

    @mellocard
    Replying to @JackPosobiec
    EU calls death penalty for convicted criminals barbaric but has sentenced #babycharlie to death innocent as the day he was born

    @PauletteJMurray
    Replying to @JackPosobiec
    This Country is LOST to Humanity, no Hope for Them at all. This is Liberal thinking, poison’s the Soul and the Mind. God Help Them !!!

    ‏@MiloBrady12
    Replying to @JackPosobiec
    They have truly forced #culturalsuicide in every way on the ppl of Europe.

    @Posh_on_tour89
    Replying to @JackPosobiec
    Precisely what is wrong with the EU and the set up of Europe. Brings a tear to my eye to see a young child suffering

    @rawdenredwood
    Replying to @JackPosobiec
    This is why we are leaving the EU it’s on self destruct mode. The liberal elite (incl UK) have destroyed our fabric, our nationhood

    @gsteck74
    Replying to @JackPosobiec
    America does the same thing daily through PP. The left wants to protect illegals while killing our babies! Pathetic!

    @Veteran4DJTrump
    Replying to @JackPosobiec
    They really want the muslim parasites to start killing LGBT community while normalize the west with child bride marriage and pedophilia .

    @jpb3733
    Replying to @JackPosobiec
    EU was created to be a fascist orwellian thug machine meant 2 destroy Europe as a fit home for European families. EuroMen aren’t Manning up

    elgin1marbles
    Replying to @JackPosobiec
    The baby is white, if it had been Muslim or black there would have been outage and rioting in the streets, whites are now expendable.

    This clearly has nothing to do with the medical ethics issues raised by Julian Savulescu and Dominic Wilkinson. It is pure politics, and Charlie Gard’s parent’s seem to be the driving force behind the politicisation of the case. Although they claim to be simply ‘concerned for their child’, their response to negative court decisions was to institute a campaign on social media, which was inevitably populist. Even if they had never heard of Jack Posobiec beforehand, they must have known that their campaign would attract support from people like him. Now that the US alt-right has adopted the case, it is probable that many UK populists will follow, pressuring the Conservative government to intervene.

    The appropriate course of action is to hold the parents accountable for the content of the social media campaign that they instigated. They have custody of a sick child, and complaining about ‘muslim parasites’ does not seem to be an appropriate care strategy. It should also be seen as their responsibility to suppress the campaign that they started, which is disseminating false claims – the EU, for instance, made no decision in the case, as Posobiec claims.

    • David Albert Jones says:

      The parents of Charlie Gard are facing the death of their child and there is no reason to doubt their claim that they are merely seeking one last throw of the dice in the form of experimental therapy before they make their peace with his loss. Because this option takes money and because they have faced a legal battle they have appealed to social media. I do not think it fair to hold them responsible for the fact that Trump and the alt-right have sought to make use of their case. I am not sure if you have children but put yourself in their shoes. If there is a villain in this story you should perhaps look to the clinician who offered unrealistic therapy to desperate parents.

  • Julian Savulescu says:

    Thanks. Very stimulating contribution. I thought there were good arguments against the decisions, internal to ethics and the law. But none of these have appeared in populist wave surfed by the Pope and Trump. Strange times

  • Elizabeth Spencer says:

    “The NHS has thresholds for cost-effectiveness that it routinely employs.” I feel the above statement throws light on the pathetic condition of NHS , that has brought down a human life’s worth to statistics or cost efficiency and which goes against the Hippocrates oath every doctor takes. Administrators and doctors look at a patient differently.
    1) Administrators look at them as a number
    2) Doctors look at them as a life to be saved or helped

    But there’s a third perspective here that of the parent.
    ” A parent or family looks at a patient as the life that leaves a mark on them every day, a life worth saving at any cost, a life however futile worth living. Love is that ingredient that neither the doctor nor administrators can bring to the equation. And scientifically speaking love heals, because of all the good hormones, and philosophically speaking – love finds a way where there is only a thin line of hope. ”

    The Death penalty, Euthanasia, Suicide, Murder, Disease- different deaths but different viewpoints and ethics. Only disease justifies it, but even then that doesn’t justify death when one has an option! An option made the difference- When the doctors put Charlie Gard on ventilator , his parents were not consulted, why did they do it? Because they had hope! And now the doctors don’t have hope , so they want to switch it off, but is it their call to do so or even the court’s call? Now the baton has been passed on to the parents and the onus is on them, it’s their fight to fight to win or to lose.

    “Nature has created that emotional attachment between parents and a child to protect the interests of the child and we cannot fight that instinct or go against nature- it would be wrong to do so. ”

    But it is always good to have balance, the doctors and the court bring a different perspective to the table but whether that perspective is wrong, only time will make us understand. The ethics behind condemning another human to death goes against religious laws, and maybe there is some truth or science to that, as that compassion for life is what keeps us humane. And all these different perspectives makes us understand through our mistakes and experiences , as to what is the right thing to do without just adhering to absolute truths given to us as laws. But is it right to use Charlie gRd’s life or death for our understanding of that truth!”

    So who deserves to choose a human’s death?

  • Per Nilsson says:

    When doctors and courts arbitrarily make decisions over life and death then the very foundations of human rights are undermined. Ofcourse when parents abuse their children they lose the rights as parents. It seems, however,as though the doctors and courts in this case have overstepped their competence. Once life, quality of life, commencement of life, meaning of life become the object of human decision then the judgements of courts begin to compare with the dictates of tyrants.

  • Paul Treanor says:

    The Charlie Gard case illustrates the huge gap in western liberal democracies, between the political and academic elite (the political class), and the rest of the population. They simply don’t share a common language, and communication has more or less ceased. It’s ironic to hear politicians complain about immigrants’ ‘parallel societies’, when they inhabit a parallel world themselves.

    The supporters of Charlie Gard don’t understand, and simply don’t care, about the medical ethics perspective, presented here by Julian Savulescu and Dominic Wilkinson. They seem to regard it primarily as a parents rights issue, meaning rights of the parent against the state. That also place it in a broader perspective of European cultural decline, including mass immigration, and the decadence and betrayal of the elites. Here’s the Catholic Herald on the parental rights:

    The Charlie Gard case shows how the state is destroying parents’ rights

    Indeed, more and more it is becoming a legal requirement that parents share the prevailing ideologies of the state. In England couples have, for years, been denied the right to adopt or foster children if they hold views unacceptable to local authorities, like being an Evangelical Christian, or voting UKIP.

    Placed within this wider context, in which parents only care for or teach their own children under sufferance of the state, the death sentence faced by Charlie Gard is far less surprising but no less tragic or outrageous.

    Almost all of Charlie Gard’s supporters see his imminent death as deliberate euthanasia or simply as execution or murder. Almost all of them hold the doctors responsible for the death. Implicitly they assume that there is some way to save his life, perhaps by treatment, and that the parents are being deliberately denied this option. Many of them blame the hospital directly (Great Ormond Street Hospital, GOSH). I have not seen any media reports of threats, but it is very likely that the hospital now has extra security measures in place.

    Here’s some more anger from Twitter to illustrate the climate:

    @conservamother
    Story saddens and sickens me. Proof Socialized medicine hurts the people & they are no longer in control of their own bodies

    @Sam_Colli2804
    You horrible woman @theresa_may who are you to say #CharlieGard shouldn’t be given a chance. Overrule the courts, let him go #charliesfight

    @sagan_paulina
    @theresa_may what can I say? Your trying to be tough? You will go down in the history as the person who allowed #CharlieGard death. Outrage!

    @LanceSilver1
    #ENGLAND’ S #SOCIALIST MENTALITY & MEDICINE SENTENCED #CHARLIEGARD TO DEATH BECAUSE OF PARENTS EMOTIONAL DECISION TO SAVE HIM !

    @ElianaBenador
    @DavidLewis1951 In the U.K. Is also happening. If @theresa_may does not stop the EU they will all kill baby #CharlieGard. That’s Globalism.

    @NaomixThomas
    @theresa_may what a vile human being you are!! Peado protecting but won’t give a little human being a chance #CharlieGard #charliesfight

    @DenverLeonDrew
    They dont report on #CharlieGard because it destroys there socialized Healthcare Utopia the kid faced a death panel they claim doesn’t exist

    @Lonnie_Lala
    EU’s diabolical master plan to assert that it, not the parents, are the “owners” of all children and babies under its satanic control!

    @andyjgoldie
    Great Ormond Street Hospital will kill Charlie Gard in order to cover up the shortcomings of the healthcare they provide. Like Southampton.

    The standard response of the elite to such public unrest is to ignore it. There is enough evidence by now, that this will not work in the long term. Things will only get worse. The elite and the state, in this case the British government, ought to address the central issues directly. What can be done?

    First, Charlie Gard is a political issue, and there should be a referendum on whether he should live or die. It should specifically include a question on whether he should be sent to the United States or Italy, for treatment. I know that liberals will say that you can’t hold a referendum on the life of an individual, but we simply don’t live on a planet where everyone is a liberal and thinks as a liberal. People are angry and frustrated, about the decisions in the Charlie Gard case, and they should be allowed to at least express their political preference.

    Second, the Great Ormond Street Hospital should be closed, because there is no consensus on its ethical practices or the integrity of its medical staff. If a significant section of the population sees them as baby-killers, then the hospital simply cannot function as a medical care location for children.

    Thirdly, the British National Health Service must be broken up. There is no longer any consensus on values in Britain, there are no shared values, no shared politics, no shared ideology, no shared identity. There is no national unity, in the sense that every inhabitant of Britain shares common values and a common culture. A uniform national health service without a nation is impossible. Britain, like other western countries, is polarised, and it needs polarised health care. If there had been a separate right-wing hospital, perhaps a conservative Christian hospital, then Charlie Gard’s parents could have taken their son there, and he would get the treatment that they want, and the whole controversy would never have arisen.

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