{"id":39633,"date":"2017-07-14T11:54:42","date_gmt":"2017-07-14T10:54:42","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=39633"},"modified":"2017-07-21T12:29:27","modified_gmt":"2017-07-21T11:29:27","slug":"daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2017\/07\/14\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\/","title":{"rendered":"Daniel Sokol: The Charlie Gard case\u2014an ethicist in the courtroom"},"content":{"rendered":"

Daniel Sokol provides an ethicist’s point of view on the latest hearing in the case of Charlie Gard<\/p>\n


\n\"daniel_sokol_2016\"\u201cShame on you GOSH!<\/em>\u201d chanted the crowd outside the gates of the Royal Courts of Justice on Thursday, referring to the Great Ormond Street Hospital where 11-month-old Charlie Gard lies in intensive care.<\/p>\n

In Court, the barrister for the parents presented their new evidence in an effort to allow Charlie to undergo experimental nucleoside treatment abroad.<\/p>\n

The parents pinned their hopes on a respected American doctor, a professor of neurology, who gave evidence via video-link. He had also given evidence in the April hearing.<\/p>\n

In the doctor\u2019s opinion, which was based on his team\u2019s recent, unpublished research not available in April, there is a 55% chance of the nucleoside therapy reducing the amount of time on a ventilator, and a 10% chance of complete weaning from the ventilator.\u00a0 The doctor was less optimistic on the impact of the treatment on brain function, but said there was a \u201csmall but significant chance\u201d of improvement.<\/p>\n

The fundamental medical issue, according to the doctor, was whether the brain was merely dysfunctional or whether there was irreversible structural damage. According to the doctor, the MRI and EEG did not answer that question.<\/p>\n

As the American doctor had not examined Charlie, the judge asked if he would be prepared to come to London.\u00a0 He was.<\/p>\n

The highlight of the parents\u2019 case came late in the day, when their Counsel asked the doctor whether a clinical examination could resolve the dyfunction vs. structural damage question. No. \u201cHow then can we resolve this question?\u201d asked the barrister, who surely knew the answer. \u201cThe only way to tell how much of the brain damage is irreversible is by trying the [nucleoside] therapy.\u201d<\/p>\n

A key difficulty with the American doctor\u2019s evidence is that he has never examined Charlie, or seen his medical notes, or all the imaging. He relied on summaries, reports and e-mails.\u00a0 He also said he would defer to the appropriate specialists in determining how much of Charlie\u2019s encephalopathy is attributable to a dysfunction or a structural brain problem.<\/p>\n

After hearing the evidence, the judge told the lawyers that the American doctor was not, at present, sufficiently informed about Charlie\u2019s case to influence the court.<\/p>\n

The outcome of the hearing is that a multi-disciplinary meeting will be held shortly, after which a decision will be made.\u00a0 The details of that meeting, including the date, the attendees, the topics and the format, will be discussed on 14\u00a0July 2017.<\/p>\n

Counsel for the family said that any experimental treatment provided by the American doctor would have to comply with the Hippocratic Oath.\u00a0 However, it is not clear that the Oath would support the experimental treatment.\u00a0 The Oath declares:<\/p>\n

\u201cInto as many houses as I may enter, I will go for the benefit of the ill\u201d.<\/em><\/p>\n

\u00a0<\/em>The author of the Art<\/em>, one of the Hippocratic essays, wrote: \u201cI would define medicine as the complete removal of the distress of the sick, the alleviation of the more violent diseases<\/em>.\u201d[i]<\/a><\/p>\n

The restoration of some muscular movement and some degree of cognitive improvement on what appears to be a severely encephalopathic brain is arguably of no benefit.\u00a0 A greater degree of awareness and sentience could result in more, not less, distress, and more, not less, pain, whether physical or psychological. Cognitive improvement is no blessing if it falls short of the threshold of minimally acceptable cognitive function.\u00a0 The American doctor could not comment on the degree of improvement, but the preponderance of the evidence\u2014and the finding of the Court in April\u2014is that the nucleoside therapy is highly unlikely to confer any benefit to Charlie\u2019s massively damaged brain.<\/p>\n

The hospital\u2019s rationale is closer to the spirit of the Oath, as described in the hospital\u2019s position statement for the hearing:<\/p>\n

“It has been and remains the unanimous view of all those caring for Charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare.\u00a0 That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life<\/em>.”<\/p>\n

If that is factually accurate, any aggressive care will not be \u201cfor the benefit of the ill\u201d and will be contrary to the Oath.<\/p>\n

An important factor in this case is Charlie\u2019 current level of pain. Professor A, a leading expert in mitochondrial diseases, said in the April hearing that Charlie is likely to have the conscious experience of pain.\u00a0 His treating clinicians believed in April that Charlie was suffering.\u00a0 The American doctor said on Thursday that he saw no evidence of pain, although he acknowledged that the tubes could be very uncomfortable.\u00a0 He deferred to intensive care experts.\u00a0 At present, Charlie is on morphine.<\/p>\n

If Charlie is in pain or distress, every passing day is a cruel one.\u00a0 The doctors are then in danger of violating another tenet of medical ethics: first, do no harm<\/em>.\u00a0 The experimental treatment would only be justified if the harm of keeping him alive in intensive care and the risks and burdens of the treatment (which include the risk of cardiac arrhythmia and the prolongation, even worsening, of suffering) were outweighed by the chance of achieving a quality of life that is worth living.\u00a0 His current quality of life, all agree, does not reach that threshold.<\/p>\n

Let us hope the forthcoming multi-disciplinary meeting\u00a0will help the parties resolve their differences and avoid the need for further legal battles.<\/p>\n

Daniel Sokol<\/strong> is a medical ethicist and barrister at 12 King\u2019s Bench Walk, London<\/em>.<\/p>\n

[i]<\/a> Hippocratic Writings, Lloyd, G. et al, Penguin Classics, p.140, Penguin Books: London (19830<\/p>\n","protected":false},"excerpt":{"rendered":"

Daniel Sokol provides an ethicist’s point of view on the latest hearing in the case of Charlie Gard […]<\/p>\n

More…<\/a><\/p>\n","protected":false},"author":1,"featured_media":39639,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[18886],"tags":[],"class_list":["post-39633","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-daniel-sokol"],"yoast_head":"\nDaniel Sokol: The Charlie Gard case\u2014an ethicist in the courtroom - The BMJ<\/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\/bmj\/2017\/07\/14\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Daniel Sokol: The Charlie Gard case\u2014an ethicist in the courtroom - The BMJ\" \/>\n<meta property=\"og:description\" content=\"Daniel Sokol provides an ethicist’s point of view on the latest hearing in the case of Charlie Gard [...]More...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/blogs.bmj.com\/bmj\/2017\/07\/14\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\/\" \/>\n<meta property=\"og:site_name\" content=\"The BMJ\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/bmjdotcom\/\" \/>\n<meta property=\"article:published_time\" content=\"2017-07-14T10:54:42+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2017-07-21T11:29:27+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/blogs.bmj.com\/bmj\/files\/2017\/07\/charlie_gard_parents.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"540\" \/>\n\t<meta property=\"og:image:height\" content=\"350\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"BMJ\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@bmj_latest\" \/>\n<meta name=\"twitter:site\" content=\"@bmj_latest\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"BMJ\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/\"},\"author\":{\"name\":\"BMJ\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/#\\\/schema\\\/person\\\/ba3da426ed20e8f1d933ca367d8216fe\"},\"headline\":\"Daniel Sokol: The Charlie Gard case\u2014an ethicist in the courtroom\",\"datePublished\":\"2017-07-14T10:54:42+00:00\",\"dateModified\":\"2017-07-21T11:29:27+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/\"},\"wordCount\":974,\"commentCount\":1,\"publisher\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/files\\\/2017\\\/07\\\/charlie_gard_parents.jpg\",\"articleSection\":[\"Daniel Sokol\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/\",\"url\":\"https:\\\/\\\/blogs.bmj.com\\\/bmj\\\/2017\\\/07\\\/14\\\/daniel-sokol-the-charlie-gard-case-an-ethicist-in-the-courtroom\\\/\",\"name\":\"Daniel Sokol: The Charlie Gard case\u2014an ethicist in the courtroom - 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