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Charlie Gard - Medical Ethics and Law

2018-01-27 · Long video (solo, talking head or whiteboard) · Ali, Abi 5A9Ae87434 · recording, 28:08 · watch on YouTube

Topic: Medicine and his doctor years · mode: Explanation and tutorial · tags: Aimed at students

In a video of his medical ethics series for medicine interviews, Ali and his fellow Cambridge medical student Abi explain the legal side of the Charlie Gard case, a dispute over the boy's best interests settled by the courts, and five ethical issues it raised, arguing it was not euthanasia.

What is said

The parts of the video and what is said in each (★ — how much it matters to the video).

00:00:00 — Ali and Abi introduce the video on the Charlie Gard case

  • ★★ Abi 5A9Ae87434: Abi says Charlie Gard was born in August 2016 with MDDS, one of a group of neurodegenerative conditions that cause brain and muscle damage and get worse over time. — 00:00:29 · Charlie Gard case

00:00:38 — What happened in Charlie's case: a summary

  • ★★ Abi 5A9Ae87434: Abi says conditions like MDDS usually cause death within the first year of life. — 00:00:58
  • ★★★ Abi 5A9Ae87434: Abi says an American doctor offered Charlie Gard an experimental treatment; his parents wanted to fly him to the US, Great Ormond Street Hospital said this was not in his best interests, and a court battle followed. — 00:00:58 · Charlie Gard case, Great Ormond Street Hospital, Best interests
  • ★★ Abi 5A9Ae87434: Abi says the Charlie Gard case caused a huge media storm and was very highly covered both in the UK and, interestingly, in the US. — 00:01:27 · Charlie Gard case, United Kingdom
  • ★ Ali says the Charlie Gard case was very controversial and captured the attention of everyone from Donald Trump to the Pope. — 00:01:27 · Charlie Gard case
  • ★★★ Ali says the Charlie Gard case hinged on his best interests: Great Ormond Street Hospital, backed by many experts, held that continued or experimental treatment was not in them, while his parents wanted to give him a chance. — 00:01:58 · Charlie Gard case, Great Ormond Street Hospital, Best interests
  • ★★ Ali recommends a BBC News article as a very readable account of what happened in the Charlie Gard case for anyone unfamiliar with the details. — 00:02:28 · Charlie Gard case

00:02:56 — Opening words of Mr Justice Francis's statement

  • ★★ Ali says Mr Justice Francis presided over the Charlie Gard case, saw the evidence from both parties and on 24 July 2017 wrote a statement of about 20 parts. — 00:02:57 · Charlie Gard case
  • ★★ Mr Justice Francis (quoted): Mr Justice Francis wrote that a lot had been said about the Charlie Gard case by people who knew almost nothing about it but felt entitled to express opinions. — 00:03:34 · Charlie Gard case
  • ★★★ Mr Justice Francis (quoted): Mr Justice Francis wrote that Charlie Gard's parents had accepted his life could not be improved and that the only remaining course was palliative care, letting him die with dignity. — 00:04:05 · Charlie Gard case
  • ★★ Ali says Charlie Gard died on 28 July 2017, after the judge's statement of 24 July. — 00:04:05 · Charlie Gard case
  • ★★ Ali says any discussion of the Charlie Gard case must remember the parents' incomprehensible loss, but media amplification made it an issue worth discussing more widely. — 00:04:33 · Charlie Gard case
  • ★★ Ali recommends Iain Brassington's article on the Charlie Gard case in the blog of the Journal of Medical Ethics as a readable, more opinionated account. — 00:05:11 · Charlie Gard case, Medical ethics
  • ★★★ Ali agrees with Iain Brassington that legally the Charlie Gard case was very straightforward. — 00:05:11 · Charlie Gard case

00:05:12 — The legal side and Dr Hirano's experimental treatment

  • ★★★ Ali says Charlie Gard's parents wanted continued and experimental treatment while the hospital thought it futile, so the courts were brought in as an independent body to hear both sides and decide his best interests. — 00:05:41 · Charlie Gard case, Best interests
  • ★★ Abi 5A9Ae87434: Abi says Dr Hirano, a US doctor, said he could help Charlie Gard and offered nucleoside bypass therapy. — 00:05:41 · Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi understands that nucleoside bypass therapy was quite experimental and had not yet been tested in a child. (hedged) — 00:06:10
  • ★★ Abi 5A9Ae87434: Abi thinks Dr Hirano had not necessarily seen up-to-date scans of Charlie Gard when he gave his initial assessment. (hedged) — 00:06:10 · Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi says it is commonplace for doctors, for example at Addenbrooke's, to discuss cases with colleagues in other countries. — 00:06:10 · Addenbrooke's Hospital
  • ★★ Ali says commentators have often criticised Dr Hirano as the main person who gave Charlie Gard's parents undue hope by offering the experimental therapy. — 00:06:39 · Charlie Gard case
  • ★★ Ali says nucleoside bypass therapy had never been tested on Charlie Gard's strain of mitochondrial disease, only on mice with a variant, and his condition was worse, affecting brain and muscles. — 00:06:39 · Charlie Gard case
  • ★★★ Ali says the judge agreed with Great Ormond Street's experts that the evidence was not there, so the best-interests decision was against the experimental treatment and for withdrawing Charlie Gard's life support, as each day meant suffering. — 00:07:29 · Great Ormond Street Hospital, Best interests, Charlie Gard case

00:08:08 — Moving on to five ethical issues raised by the case

  • ★★ Ali says medicine interview applicants should be aware of the ethical points raised by the Charlie Gard case. — 00:08:27 · Medicine interview, Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi says the case of baby Isaiah is another, less publicised case of doctors and parents disagreeing over whether a baby's life support should continue. — 00:08:56
  • ★★ Ali says the Charlie Gard case raised five main ethical issues, beginning with autonomy, the balance of beneficence and non-maleficence, and justice or allocation of resources. — 00:08:56 · Charlie Gard case, Four principles of medical ethics
  • ★★ Abi 5A9Ae87434: Abi says that in the Charlie Gard case autonomy means mostly the parents' right to decide, since a young, disabled baby is given little personal autonomy. — 00:09:26 · Four principles of medical ethics, Charlie Gard case

00:09:50 — Autonomy, and the UK and US court systems

  • ★★★ Abi 5A9Ae87434: Abi says the accepted legal position has been that parents normally have the right to choose between the reasonable options offered for a young child. — 00:10:12
  • ★★ Abi 5A9Ae87434: Abi says an option doctors judge unreasonable normally does not come under parental autonomy, partly because the patient has no autonomy of their own. — 00:10:41
  • ★★ Ali says the four principles of medical ethics, autonomy among them, are the structure he always suggests for answering medical ethics questions. — 00:10:41 · Four principles of medical ethics, Medical ethics
  • ★★★ Ali says the parents' wishes do not automatically trump medical opinion: it is about the child's best interests, doctors must take the parents' view into account, and if they disagree an independent court decides. — 00:11:20 · Best interests
  • ★ Abi 5A9Ae87434: Abi finds this area of ethics interesting because someone has to decide what is right, and different parts of the world have decided differently. — 00:11:20
  • ★★ Ali says the Charlie Gard case got much US media attention partly because American courts are very politicised, with political parties appointing judges. — 00:11:52 · Charlie Gard case
  • ★★ Ali says UK courts are specifically designed to be independent from the government. — 00:12:21 · United Kingdom
  • ★★ Ali says many American commentators claimed a US system would have cared about Charlie Gard's parents' wishes, and portrayed the NHS as holding him captive. — 00:12:21 · NHS, Charlie Gard case
  • ★★★ Ali says the NHS did not hold Charlie Gard captive: when parents and doctors disagree, an independent court arbitrates, which is what happened and which he thinks is a pretty good way of doing things. — 00:12:50 · Charlie Gard case, NHS
  • ★★ Abi 5A9Ae87434: Abi says US coverage conflated the state deciding with a national health service, amid American debates about their own health system. — 00:13:19 · NHS
  • ★★ Ali says proponents of the experimental therapy argued that the alternative was to let Charlie Gard die, so even a tiny chance of improvement should be taken. — 00:13:49 · Charlie Gard case

00:14:05 — Beneficence versus non-maleficence

  • ★★★ Abi 5A9Ae87434: Abi says almost any treatment carries harm, and flying a very sick baby to the US for experimental treatment carried real risk, so it was not simply Charlie Gard's one shot. — 00:14:59 · Four principles of medical ethics, Charlie Gard case
  • ★★ Ali says those in favour of withdrawing Charlie Gard's life support argued that every day it dragged on was another day of suffering he could not express. — 00:15:21 · Charlie Gard case
  • ★★ Ali reads Great Ormond Street Hospital's statement saying that since the first hearing in March 2017 it held every day was not in Charlie Gard's best interests, that two international experts believed they elicited a pain response, and that his relationship with the world had been one of suffering. — 00:15:43 · Great Ormond Street Hospital, Best interests, Charlie Gard case
  • ★★ Ali says Dr Hirano's new evidence led Charlie Gard's parents to seek a retrial, which dragged the case on and potentially prolonged his suffering. — 00:16:12 · Charlie Gard case
  • ★★ Ali says it later emerged that Dr Hirano had not examined Charlie Gard or read the judge's statements about him. — 00:16:12 · Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi says the staff caring for Charlie Gard faced an unprecedented amount of media attention and real abuse. — 00:16:42 · Great Ormond Street Hospital, Charlie Gard case
  • ★★ Ali says Chris Gard and Connie Yates, Charlie's parents, fully condemned the abuse the hospital staff received. — 00:17:41

00:18:02 — Justice and allocation of resources

  • ★★ Ali says Charlie Gard's parents raised £1.3 million through a fundraising campaign to fly him to America for the experimental treatment. — 00:18:02 · Charlie Gard case
  • ★★ Ali says the debate in the Charlie Gard case was never really about allocation of resources. — 00:18:02 · Charlie Gard case
  • ★★ Ali says Great Ormond Street Hospital agreed it would have provided the treatment regardless of cost had it thought it in Charlie Gard's best interests. — 00:18:32 · Great Ormond Street Hospital, Charlie Gard case, Best interests
  • ★★ Abi 5A9Ae87434: Abi says the NHS already provides extraordinarily expensive treatments and flies patients abroad for treatments not offered in the UK. — 00:18:32 · NHS, United Kingdom
  • ★★ Ali says American media outlets still blamed the NHS, presenting the case as what happens with a taxpayer-funded system. — 00:19:01 · NHS
  • ★★ Ali says Ted Cruz and Donald Trump tweeted about the case, and outlets including the normally measured Wall Street Journal treated it as a problem with the taxpayer-funded system. — 00:19:01
  • ★★ Ali says experimentation is really important in medicine: almost none of today's treatments would exist had they not once been tried while experimental. — 00:19:30

00:19:37 — The ethics of experimental treatments on children

  • ★★ Ali says the dilemmas of experimental treatment are amplified for children, who cannot decide for themselves whether to join a trial or receive treatment. — 00:20:04
  • ★★ Abi 5A9Ae87434: Abi recalls a consultant who told her that as a junior doctor she fought her own consultant over early chemotherapy for children with leukaemia, which she called unbelievably inhumane. — 00:20:39
  • ★★ Abi 5A9Ae87434: Abi says the early chemotherapy regimes for children with leukaemia were mostly unhelpful, but without those ten years no child with leukaemia would survive today. — 00:20:39

00:21:38 — Was this euthanasia?

  • ★★★ Ali says the Charlie Gard case was not euthanasia, despite many outlets saying so: euthanasia is acting with the intent to kill, and in Charlie's case the intent was never to kill. — 00:21:38 · Euthanasia, Assisted suicide, Charlie Gard case
  • ★★★ Ali says it was not that continuing to live was against Charlie Gard's best interests, but that the specific treatments, the experimental therapy and mechanical ventilation, were. — 00:22:14 · Best interests, Charlie Gard case
  • ★★★ Ali says life support, mechanical ventilation and artificial feeding are medical interventions, and in the UK, quite properly in his view, they are not given unless a benefit is strongly expected. — 00:22:14 · United Kingdom
  • ★★★ Ali personally believes it was right to withdraw Charlie Gard's medical treatment. — 00:22:49 · Great Ormond Street Hospital, Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi says their medical school lectures told them to avoid the term "passive euthanasia". — 00:22:49
  • ★★ Abi 5A9Ae87434: Abi says by many definitions euthanasia means intending the patient to die, while the UK distinguishes intending death from foreseeing it as a side effect of withdrawing treatment. — 00:23:17 · Euthanasia, United Kingdom
  • ★★ Abi 5A9Ae87434: Abi says, having checked Tony Hope's book, that some people use "passive euthanasia" as a blanket term for withdrawing life-sustaining treatment, which is within medical ethics tradition, though she would rather avoid it. — 00:23:17 · Medical ethics
  • ★★ Ali says that in calling the Charlie Gard case not euthanasia he uses the strict definition, which requires intending death as the main effect of withdrawing treatment. — 00:23:53 · Euthanasia, Charlie Gard case
  • ★★ Abi 5A9Ae87434: Abi says the Charlie Gard case is not isolated but part of bigger issues, one being individualism: everyone is "Dr Google" now. — 00:24:18 · Charlie Gard case

00:24:19 — Wider social issues raised by Charlie's case

  • ★★ Abi 5A9Ae87434: Abi says a culture has grown of people raising a lot of money to travel across the world for cancer treatments not proven by evidence to work. — 00:24:48
  • ★★ Abi 5A9Ae87434: Abi says mistrust of the mainstream was a huge issue while Charlie Gard was alive, with Donald Trump coming to power and Brexit campaigners saying experts and statistics did not matter. — 00:25:13 · Charlie Gard case
  • ★ Abi 5A9Ae87434: Abi says going through medical school is humbling, her understanding of much of medicine is limited, and it is always worth looking to seniors. — 00:25:42
  • ★★ Abi 5A9Ae87434: Abi expects more and more cases of people denied the best supportive care by hopes that experts are wrong. (hedged) — 00:26:20

00:26:45 — Concluding remarks and Great Ormond Street Hospital's closing words

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Mentioned

Central: Best interests · Charlie Gard case · Euthanasia · Great Ormond Street Hospital · Medical ethics

Also: Addenbrooke's Hospital · Assisted suicide · Four principles of medical ethics · Medicine interview · NHS · United Kingdom · University of Cambridge · Wikipedia

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