{"id":3202,"date":"2017-08-11T10:17:27","date_gmt":"2017-08-11T09:17:27","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=3202"},"modified":"2018-08-19T12:44:25","modified_gmt":"2018-08-19T11:44:25","slug":"charlie-gard-an-ethical-analysis-of-a-legal-non-problem","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/","title":{"rendered":"Charlie Gard: An Ethical Analysis of a Legal Non-Problem"},"content":{"rendered":"

By\u00a0Iain Brassington<\/strong><\/p>\n

(Cross-posted from EJIL: Talk!<\/a><\/span>)<\/em><\/p>\n

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.\u00a0 A decent pr\u00e9cis<\/em> is available here<\/span><\/a>; but it\u2019s worth rehearsing.<\/p>\n

Shortly after his birth, Charlie\u2019s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.\u00a0 By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children\u2019s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.\u00a0 This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.\u00a0 This was confirmed by the Supreme Court and the European Court of Human Rights.\u00a0 During all this time, Charlie remained ventilated.<\/p>\n

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie\u2019s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.\u00a0 However, as proceedings advanced, it became clear that Hirano\u2019s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.\u00a0 The position statement issued by GOSH on the 24th<\/sup> July<\/span><\/a> barely hides the hospital\u2019s legal team\u2019s exasperation.\u00a0 On the 24th<\/sup> July, Charlie\u2019s parents dropped their request for continued treatment.\u00a0 The details of Charlie\u2019s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.\u00a0 The High Court ruled against this on the 27th<\/sup> July.\u00a0 Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th<\/sup> July, a few days before his first birthday.<\/p>\n

The way this case has played out has not been pretty.\u00a0 Elements of the American media (this piece<\/span><\/a>, which I’ve mentioned before, is one among many) and the political right wing<\/span><\/a> used it to launch attacks on single-payer healthcare systems:<\/p>\n

\n

Our hearts weep for #CharlieGard<\/a> Our prayers are w\/ him. Pls read & ask WHY govt should have power to decide who lives & dies. It’s wrong. https:\/\/t.co\/MsvoJBqJyO<\/a><\/p>\n

\u2014 Ted Cruz (@tedcruz) July 24, 2017<\/a><\/p><\/blockquote>\n

Nigel Farage weighed in<\/a><\/span>, complaining about the state taking away parental rights:<\/p>\n

\n

UK medical establishment closed ranks on #CharlieGard<\/a>‘s parents & the state took away their rights. Change required. What a total disgrace. pic.twitter.com\/TRBWWYTwJb<\/a><\/p>\n

\u2014 Nigel Farage (@Nigel_Farage) July 24, 2017<\/a><\/p><\/blockquote>\n

From the left, Giles Fraser wrote<\/span><\/a> that the case was being dealt with too rationally.\u00a0 None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips<\/a><\/span> on this matter.<\/p>\n

Legally, the case was very straightforward.\u00a0 Under English law, when a patient is not competent to make decisions, they must be made on his behalf, in his best interests.\u00a0 Treatment can be provided only if it serves those interests.\u00a0 \u201cBest interests\u201d generally means medical best interests, but the patient\u2019s values and beliefs also count.\u00a0 (Thus a blood transfusion might be in a Jehovah\u2019s Witness\u2019 best medical interests, but would not be given.)\u00a0 Since children \u2013 especially those who are only months old \u2013 do not have values or beliefs that can contribute to an assessment of best interests, medical best interests are overriding.\u00a0 Medical staff at GOSH held that continued treatment did not serve Charlie\u2019s best interests, and should therefore be withdrawn.\u00a0 This is wholly in keeping with established norms.\u00a0 More, since being on a ventilator is burdensome in its own right, doctors have a positive reason not<\/em> to ventilate unless it serves some greater purpose \u2013 a purpose lacking in Charlie\u2019s case.\u00a0 Merely being alive is not sufficient.<\/p>\n

The case was definitely not a case of euthanasia, despite what some have claimed<\/a><\/span> (and others have \u2013 correctly \u2013 denied<\/a><\/span>).\u00a0 Euthanasia requires the intention to end life, either by withdrawing treatment or administering one.\u00a0 Foreseeing that a life will end when treatment is withdrawn is not the same thing.\u00a0 This is reflected in law, and law probably gets things ethically correct.\u00a0 More, the law is also ethically correct to allow that life for life\u2019s sake is not worth striving for.\u00a0 More importantly, perhaps, Charlie\u2019s parents\u2019 requests that ventilation be maintained were partially motivated by a desire for more time to say goodbye to him.\u00a0 Understandable though this may be, to have acceded to the request would potentially have sacrificed his interests on the altar of their desires.<\/p>\n

So far so good.\u00a0 But it\u2019s worth noting a few aspects of the case that have not received a huge amount of attention, but that are rather interesting.<\/p>\n

    \n
  1. Parental Autonomy<\/li>\n<\/ol>\n

    Some of the commentary on the case has focused on the place of parental autonomy, and the right of parents to make decisions on behalf of their children.\u00a0 Shouldn\u2019t it be parents who get to make the final decision on behalf of their children?<\/p>\n

    There\u2019s a powerful emotional tug to this kind of position, but it\u2019s uncompelling in the end.\u00a0 Importantly, autonomy means that one can refuse treatment, or choose between offered treatment options.\u00a0 There\u2019s no autonomy-based right in English law to demand treatment, though (as confirmed in Burke<\/em><\/a><\/span>).\u00a0 If the medical staff thinks reasonably that a course of treatment is not justified, that\u2019s the end of the story.\u00a0 Whether that treatment is being requested on your own or someone else\u2019s behalf matters not.<\/p>\n

    More, to the extent that there is such a thing as parental autonomy, it is limited in its scope.\u00a0 Children are not the possession of the parents, as Francis J was at pains to point out in paragraph 18 of his ruling<\/a><\/span>.\u00a0 It is the best interests of the child that take precedence.\u00a0 Parents get to make decisions on the rebuttable assumption that they act in the child\u2019s best interests.\u00a0 But if parents\u2019 decisions are manifestly against the child\u2019s best interest, then there will be a reason to discount them \u2013 maybe by going to court.\u00a0 In effect, parental autonomy allows them to choose between plausible alternatives \u2013 say, whether to go for treatment x<\/em>, which has a certain success rate, or y<\/em>, which has a higher success rate but is more burdensome in the short term.\u00a0 It won\u2019t extend to demanding z<\/em>, for which there is little evidence.\u00a0 In effect, it gives the freedom to acquiesce to expert judgement.\u00a0 It doesn\u2019t supplant it.<\/p>\n

    A mistake about the nature of autonomy is what leads Jakob Cornides to suggest an analogy with education:<\/p>\n

    His parents, whom conventional wisdom would suppose to be best placed to speak for him, are clearly opposed to him being euthanized. [\u2026]\u00a0 An interesting question here: how can it be inferred that an 11-months-old child has opinions that differ from those held by the persons whose natural right is to educate him? Is he already so emancipated from them? Is it implied that their education is in fact a dangerous manipulation which would cause him to have different opinions than he \u201cnaturally\u201d would have?<\/p><\/blockquote>\n

    I leave the euthanasia claim to one side here, since Gard\u2019s was not euthanasia case.\u00a0 What\u2019s arguably more important is that educating their child is not the right<\/em> of parents, but a duty<\/em>.\u00a0 Their right stretches only as far as deciding what kind of education to pursue from a range of options.\u00a0 If the analogy with education is sound, we can bring this point back to decisions about medical treatment.\u00a0 More, we cannot infer that a child\u2019s opinion is different from his parents\u2019 because a child has no opinion; neither can we treat parental opinion as<\/em> the child\u2019s.<\/p>\n

      \n
    1. Mediation<\/li>\n<\/ol>\n

      Several commentators have spoken about a role for mediation or another non-judicial form of decisionmaking in cases like this.\u00a0 There\u2019s a lot to be said for this suggestion, and there are doubtless many cases in which disagreement between parents and medics about the best course of action is resolved amicably through mediation.\u00a0 The Gard case was unusual in that this proved impossible, despite GOSH having offered it, and that the dispute was played out in public.<\/p>\n

      Any mediation process likely would have been intended to ease communication between the parties, not to decide what to do.\u00a0 But this gives us insight into a major problem for mediation: there has to be a willingness from both parties to give ground.\u00a0 Absent that, it\u2019s hard to see how judicial input can be avoided.\u00a0 Besides, mediated solutions still need some kind of enforceability; the Courts, or something appreciably like them, would have to be a background presence.<\/p>\n

      Vitally, as well as a willingness from both parties to give ground, for mediation to work there must be ground to give that will leave participants no worse off than they were at the start.\u00a0 In this way, a solution is constructed by the parties.\u00a0 Charlie\u2019s case was not like that.\u00a0 Either treatment was medically warranted, or it wasn\u2019t.\u00a0 There was nothing to mediate.\u00a0 (Indeed, if you think that x<\/em> would be in Charlie\u2019s best interests, then to be willing to do less than x<\/em> seems like a dereliction of your principles and what you hold your duty to command.)<\/p>\n

      Mediation should be used when possible, ensuring that disputants understand each other and their situation to the greatest extent possible.\u00a0 But when it comes to decisions about whether to withdraw life-sustaining treatment from another person, it strikes me that mediation would be precisely the wrong tool.<\/p>\n

        \n
      1. Experimental treatment<\/li>\n<\/ol>\n

        Michio Hirano\u2019s proposal to use a novel procedure raises a deep problem in paediatric research ethics.\u00a0 Experimental treatments can rarely be said to serve someone\u2019s best interests, otherwise they wouldn\u2019t be experimental.\u00a0 A new treatment might be the best \u2013 but we can\u2019t always say<\/em> so.\u00a0 With adults, this needn\u2019t present a big problem: \u201cWe could use established treatment p<\/em>, or we could use promising treatment q<\/em>, in which we can have less confidence.\u00a0 Which would you like to try?\u201d\u00a0 It\u2019s up to the patient to decide.<\/p>\n

        But with non-competent patients, that isn\u2019t possible: as I just noted, we can\u2019t say for sure that q<\/em> is in the patient\u2019s best interest, but acting in the patient\u2019s best interests is required.\u00a0 There is no established treatment for Charlie\u2019s condition, so maybe any<\/em> treatment serves his interests \u2013 except that there is still a plausibility criterion to consider.\u00a0 There is a non-zero, but pitifully small, chance that chanting and crystals would work. Hirano\u2019s procedure was more plausible than that, but judging whether something is plausible enough<\/em>, granted the burdens of remaining in intensive care, is a tricky matter.\u00a0 The Courts clearly thought not: at paragraph 52 of its ruling<\/a><\/span>, the ECtHR notes that under the terms of the Council of Europe\u2019s Oviedo Convention, experimental treatment may be provided to incompetent patients, but that \u201cauthorisation [\u2026] may be withdrawn at any time in the best interests of the person concerned<\/em>\u201d (emphasis mine).\u00a0 The Court took no issue with the way that the domestic courts handled decisions about experimental treatment; and so the specification at paras 78 et seq<\/em> that \u201cArticle 2 of the Convention cannot be interpreted as requiring access to unauthorised medicinal products for the terminally ill to be regulated in a particular way\u201d confirmed the propriety of those courts\u2019 decision.<\/p>\n

        This leaves us with a paradox.\u00a0 It is dubiously in a child\u2019s best interest to receive experimental treatment, especially if there is an accepted treatment available.\u00a0 But progress is in everyone\u2019s interest, and relies on new treatments being considered.\u00a0 Someone<\/em> has to be given the experimental treatment; but not any particular<\/em> person.\u00a0 (The same applies to innovative treatments in emergency medicine.)\u00a0 How to resolve this puzzle has provided any number of ethicists with material for a whole career\u2019s worth of research.<\/p>\n

        But this is probably not a question for the Courts to address. \u00a0Once again, the situation in the UK was found to be defensible from the perspective of the ECHR; and it probably stands scrutiny from a moral perspective too.\u00a0 This is not to deny that there is a reason to revisit the legal situation at some point; there is.\u00a0 But the situation as it stands is not evidently unjust.<\/p>\n

        Charlie Gard was a very unfortunate child.\u00a0 But not every misfortune indicates an injustice.\u00a0 It seems to me that the way the law was brought to bear on his case simply drew out his misfortune.<\/p>\n","protected":false},"excerpt":{"rendered":"

        By\u00a0Iain Brassington (Cross-posted from EJIL: Talk!) For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.\u00a0 A decent pr\u00e9cis is available here; but it\u2019s worth rehearsing. Shortly after his birth, Charlie\u2019s health began to deteriorate, and he was diagnosed with a terminal and […]<\/p>\n

        Read More…<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1240,968,511,2148,591,328,475,1544,472],"tags":[],"class_list":["post-3202","post","type-post","status-publish","format-standard","hentry","category-blogosphere","category-clinical-ethics","category-in-the-news","category-law","category-life-and-death","category-philosophy","category-politics","category-the-nhs","category-thinking-aloud"],"yoast_head":"\nCharlie Gard: An Ethical Analysis of a Legal Non-Problem - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Charlie Gard: An Ethical Analysis of a Legal Non-Problem - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By\u00a0Iain Brassington (Cross-posted from EJIL: Talk!) For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.\u00a0 A decent pr\u00e9cis is available here; but it\u2019s worth rehearsing. 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For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.\u00a0 A decent pr\u00e9cis is available here; but it\u2019s worth rehearsing. Shortly after his birth, Charlie\u2019s health began to deteriorate, and he was diagnosed with a terminal and [...]Read More...","og_url":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/","og_site_name":"Journal of Medical Ethics blog","article_published_time":"2017-08-11T09:17:27+00:00","article_modified_time":"2018-08-19T11:44:25+00:00","author":"BMJ","twitter_card":"summary_large_image","twitter_misc":{"Written by":"BMJ","Est. reading time":"11 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/#article","isPartOf":{"@id":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/"},"author":{"name":"BMJ","@id":"https:\/\/blogs.bmj.com\/medical-ethics\/#\/schema\/person\/ba3da426ed20e8f1d933ca367d8216fe"},"headline":"Charlie Gard: An Ethical Analysis of a Legal Non-Problem","datePublished":"2017-08-11T09:17:27+00:00","dateModified":"2018-08-19T11:44:25+00:00","mainEntityOfPage":{"@id":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/"},"wordCount":2130,"commentCount":1,"publisher":{"@id":"https:\/\/blogs.bmj.com\/medical-ethics\/#organization"},"articleSection":["Blogosphere","clinical ethics","In the News","Law","Life and Death","Philosophy","Politics","The NHS","Thinking Aloud"],"inLanguage":"en-US","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/","url":"https:\/\/blogs.bmj.com\/medical-ethics\/2017\/08\/11\/charlie-gard-an-ethical-analysis-of-a-legal-non-problem\/","name":"Charlie Gard: An Ethical Analysis of a Legal Non-Problem - 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