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Charlie Gard: Doing the right thing for the right reasons

Charlie Gard #charliesfight / Facebook

Elizabeth Scalia - published on 07/06/17 - updated on 07/06/17

The staff of the Anscombe Bioethics Centre in England lays out the particulars in a comprehensive way

In March of 2017, Aleteia ran a piece entitled When a baby’s diagnosis is grim, there is a path of hope, written by Michael Wee of the Anscombe Bioethics Centre, located in Oxford, UK. Charlie Gard’s story has brought into sharp focus questions of parental rights, the duties or excesses of the state, and — perhaps the most difficult question of all — not only who can best determine when it is time to continue a fight and when to stop, but what courses of discernment are used in order to arrive at such grave decisions.

There are several distinct issues, and not everyone opining on social media has been appreciative of their distinction. For instance,

  • whether to bring Charlie to America or not is a distinct issue from whether to remove life support or not.
  • whether these two things are allowable is a different question from whether they are in his best interests/should be done immediately.
  • whether the parents are reasonable or not in their request to bring him to America is different from whether the courts should stop them or not.

There has been a great deal of opining on social media and by media pundits; some want Charlie’s parents’ rights to be respected; for some, parents’ rights to decide for their children are so sacrosanct they can never be overridden, whereas in actual fact they can, though one would have to meet a very high bar (to prove that the parents are acting so unreasonably they would likely be causing significant harm to their child). A recent Belgium case of a malnourished 7-month-old baby whose parents fed him a gluten-free diet — and who died weighing a mere 9 pounds — might, for instance, have been such a case.

In a press release, the Anscombe Bioethics Centre has released a statement that our editorial team thought was well done; it presents the dilemmas involved within this case in a brief but readable and comprehensive manner that, while sympathetic to Charlie Gard and his family, helpfully lays out the full issue in a clear-headed manner. Without weighing in on whether the Gard case comes anywhere near the Belgium story, their statement is a reminder that — at least in theory — the state sometimes does have a duty to overrule parental decisions. They do this while emphasizing that parental decisions should always be taken primarily in good faith and with respect. They also note that the court judgement made reference to opinions that are problematic.

Here, for the sake of providing a guide to the many considerations surrounding the case of Charlie Gard, we present the full and complete statement by the  Anscombe Bioethics Centre:

On 27 June 2017, the European Court of Human Rights endorsed the judgements of the UK courts in the Charlie Gard case. The UK courts had upheld the view of the doctors caring for Charlie that it was no longer in his best interests to continue artificial ventilation. The UK courts had also ruled that it would not be in Charlie’s best interest to undergo experimental “nucleoside therapy” in America as this had no realistic prospect of benefit and might have added to his distress.

This is indeed a heart-rending case. The condition from which Charlie Gard suffers is incurable and progressive: even with aggressive treatment he would be unlikely to live for more than a few months.(1) The suffering of the parents in this situation has been compounded by the long legal dispute over what form of treatment would be best for Charlie.

Ethical analysis
There are two things that need to be kept in mind in end of life care: respecting life and accepting death. Respecting life means that every person must be valued for as long as they live. One implication of this is that (at least in a medical context) death should never be the aim of our action or of our inaction. We should never try to bring about or to hasten death. On the other hand, accepting death means that we should prepare properly for death – our own and that of other people. One implication of this is that we should not deny the reality of the situation or flee from the inevitable by seeking every possible intervention, however disproportionate.(2)

While every human life is worthy of respect, not every treatment is worth pursuing. This may
be

• because it no longer serves its purpose (it is futile),
• or because it is excessively burdensome: the burdens may be physical, psychological,
social, or economic,
• or because it promises too little benefit relative to the burdens it entails.(3)

Good reasons and bad
In the case of Charlie Gard, the doctors caring for him believed that he could probably experience pain, but was “unable to react to it in a meaningful way”. (4) Their evidence was that “being ventilated, being suctioned, living as Charlie does, are all capable of causing pain”. (5) It was said that “even before Charlie began to suffer from seizures on 15th December 2016, the clinical consensus was that his quality of life was so poor that he should not be subject to long term ventilation”. (6)

The statements that ventilation could itself be causing suffering and that it was producing only a poor “quality of life” (i.e. state of health and well-being) together constitute an argument about whether this particular treatment is worthwhile. Others may argue with the conclusion, but this way of reasoning is ethically defensible.

On the other hand, opinions were also cited in court that seem to refer not to the worthwhileness of treatment but to the worthwhileness of Charlie’s life. In the High Court, Mr Justice Francis repeatedly stated, with approval, that “Charlie’s parents accept that his present quality of life is one that is not worth sustaining”.(7) Francis J also cited one doctor as saying that the severity of Charlie’s condition was such that “it could be argued that Charlie would derive no benefit from continued life”.(8)

At best, these are muddled ways of referring to the limited benefits of treatment relative to the burdens. At worst, they express a judgement that life with some disabilities is not worth living at all (the life is “not worth sustaining”). This way of reasoning can have dangerous and far reaching implications and should be repudiated firmly.

Another criticism which could be levelled at the way the UK courts approached this case is that they treated Charlie as if he had no parents or as if his parents had already been shown to be
acting in a very unreasonable, albeit well-meaning way. In a case like this, the first question should not be “What treatment would be in the best interests of Charlie?”, as though making a parental decision on his behalf, but “Are Charlie’s mother and father acting reasonably or at least, not very unreasonably?” Only after parents have been shown to be acting or seeking to act very unreasonably and exposing their child to a risk of significant harm, albeit with good intentions, should such decisions be taken out of their hands.

Flawed reasoning, defensible decisions
There are flaws, therefore, in the way that the courts came to their decisions in the Charlie Gard case, both in negative value judgements made (or cited with apparent approval) on the worthwhileness of Charlie’s life and in a failure to recognise the role and status of his parents. Nevertheless, the final decisions in this case – to withdraw ventilation and not to seek experimental treatment – are decisions that parents in this situation could reasonably make on behalf of their child. The decisions themselves are morally defensible. The Catholic moral tradition does not oblige the use of medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome. (9)

At some point we will all die, and often we will be undergoing medical treatment before we die, and as the chances of improvement fade and the time remaining grows short, the burdens and side effects of the treatment are a reason to forego intrusive and extraordinary means andto focus on symptom control. This is true of dying children just as much as dying adults. There is a time to fight and a time to cease from fighting.

The staff of the Anscombe Bioethics Centre wish to express our solidarity with Charlie’s parents as they go through this deeply painful time and assure them of our prayers for Charlie and for all those around him.
5 July 2017

The Anscombe Bioethics Centre
17 Beaumont St Oxford OX1 2NA
tel: +44 (0)1865 610212; fax: +44 (0)1865 610213
email: admin@bioethics.org.uk website: http://www.bioethics.org.uk
Registered Charity No. 274327

1 For more on Charlie Gard’s medical condition see the website of Great Ormond Street Hospital.
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case
2 Catholic Bishops’ Conference of England and Wales. A Practical Guide to the Spiritual Care of the Dying Person. London: Catholic Truth Society, 2010, paragraph 2.1. http://www.bioethics.org.uk/images/user/guide-spiritual-caredying-person.pdf
3 The Ethics of Care of the Dying Person Anscombe Bioethics Centre, 2013. http://www.bioethics.org.uk/images/user/TheEthicsofCareoftheDyingPersonwebsite.pdf
4 Great Ormond Street Hospital v Yates and others [2017] EWHC 972 (Fam), 22.
5 Ibid., 22.
6 Ibid., 59.
7 Ibid., 48, 14, 61.
8 Ibid., 60, emphasis added. Such negative judgements are also reflected in problematic language used in the current
guidance issued by the Royal College of Paediatrics and Child Health. See Larcher V, Craig F, Bhogal K, et al. “Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice”. Archives of Disease in Childhood 2015;100:s1-s23, cited in the judgement.9 Catechism of the Catholic Church, paragraph 2278; see Catholic Bishops’ Conference of England and Wales. A Practical Guide to the Spiritual Care of the Dying Person. London: Catholic Truth Society, 2010, paragraph 2.4.
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Bioethics

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