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Treatments and trials for the fetal patient: imposing the burdens of enthusiasm?
Published in Dagmar Schmitz, Angus Clarke, Wybo Dondorp, The Fetus as a Patient, 2018
I hope that we did not recruit any infant to the trial of EDI200 whose parent believed that the child would definitely benefit from participation. They might have hoped that their son would benefit but that is different from believing that he would do so. In this trial, I am confident that no-one in the UK felt pressured by the medical team or the support group involved. However, the potential for pressure in such settings is real and, in larger and more powerful support groups, it would be possible for an atmosphere to develop akin to an emotional coercion. Protecting parents from having to make such decisions, controlling the way in which trials of treatments for rare disorders are structured and how recruitment to them operates, may be represented as paternalistic, although I would support such measures. However, such steps may be ineffective in our global society: the fact that a trial or treatment is unavailable in one country does not mean that it is not available at all (as in the Charlie Gard case).
The Legal Duties of Doctors to Children in Their Care
Published in Jo Bridgeman, Medical Treatment of Children and the Law, 2020
The cases which are the subject matter of this book are not concerned with whether the doctor providing the treatment had met the legal standard of care, although concerns about the treatment the child had previously been provided with may form part of the background to the case,19 or parental concern about the quality of care their child was receiving may have fuelled the dispute about the treatment to be provided.20 The link between the legal duty of care and treatment decisions is that decisions are made as to which treatment option is in the best interests of the child from those treatment options identified as appropriate according to a reasonable body of opinion. As Jonathan Montgomery suggested in his commentary on the Charlie Gard case, the question remained whether the treatment plan of the US doctor would have fulfilled the standard of care so to have avoided liability in negligence, had administration of it caused Charlie harm.21 In the terminology used before the Court of Appeal in that case, the question was whether it was a ‘viable’ therapeutic option.22 A further example is Re AA,23 in which Bodey J made the declaration sought by the Trust that it was lawful to insert an Implantable Cardioverter Defibrillator (ICD) into seven-year-old AA, which was ‘standard management’ to monitor and normalise the rhythm of the heart. All the medical evidence before the court, including the expert for the Guardian, supported this management of AA’s condition. The evidence of Dr K, the consultant paediatric cardiologist treating AA, and his colleagues that this was appropriate treatment was supported by the peer-reviewed literature. Dr K considered that it would be ‘medically negligent’ to discharge AA without implanting an ICD.24 In contrast, there was no doctor before the court willing to prescribe or fit the wearable device the parents wanted for their daughter. Dr K had not, nor would he, prescribe the device for a child with AA’s condition, as it was a temporary measure for patients waiting for other treatment.25 It could not be in AA’s best interests to follow the course her parents sought, given the absence of evidence that it was an appropriate treatment for her condition and supported by a reasonable body of opinion.
Longshot, Fantasy, and Pipedreams
Published in The American Journal of Bioethics, 2018
John J. Paris, Brian M. Cummings
The authors insist that “if only the family had been adequately informed of this impossibility,” i.e., the family had appropriately been provided with the realistic assessment of the patient's medical condition, all conflict would dissolve. Such well known medical cases as Baby L, Baby K, Gilgunn v. Massachusetts General Hospital (MGH), Howe v. MGH, Jahi McMath and the recent highly publicized Charlie Gard case at London's Great Ormond Street Hospital demonstrate that, even within world renowned medical settings, “good communication” of medical facts does not necessarily result in parental-physician agreement. Furthermore, the author's reliance on “rational assessment” seems more oriented to satisfying the clinical team's way of proceeding than showing an awareness that the parents’ goals are frequently more the result of fear, anxiety, desperation or a faith based belief in miracles rather than a “lack of understanding” of the medical situation.
The Road to Clinical Fantasy: A UK Perspective
Published in The American Journal of Bioethics, 2018
Angela Fenwick, Peta Coulson-Smith, Anneke Lucassen
In the United Kingdom, the recent Charlie Gard case illustrates the difficulties surrounding “longshot” treatment options and the differences in opinion about what constitutes “success” and best interests. Charlie Gard was born in September 2016 with encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He was hospitalized at a month of age and soon after intubated and ventilated. The multidisciplinary team caring for him—and those who gave an independent second opinion—agreed that there were no available treatment options that could improve his health outcomes and alleviate his suffering and it was therefore in his best interests to receive palliative treatment. Adopting Weiss and Fiester's four stages, the team was in agreement that there was no chance of “cure” given the available scientific evidence—Stage 4. His parents, however, were determined that they wanted him to receive a novel “longshot” experimental treatment only available in the United States—nucleoside replacement therapy—and sourced crowdfunding to pay for it. Thereafter ensued a protracted legal battle, played out in the UK courts from January 2017 and only ending in July 2017, when his parents agreed to end their fight to take him to the United States for the treatment. Professor Hirano, based in the United States, who developed the therapy, offered to provide the treatment despite no medical evaluation of Charlie Gard's particular circumstances and only making an assessment with pertinent information of the case, in person, in July 2017. Thus, it would seem that Professor Hirano and the parents were still at Stage 1—wanting to try a longshot treatment despite success being “unlikely.”
Twelve tips for using clinical cases to teach medical ethics
Published in Medical Teacher, 2018
Hongmei Dong, Renslow Sherer, Jon Lio, Ivy Jiang, Brian Cooper
Current or recent ethical dilemmas highlighted in the public media are valuable teaching materials, too. Advantages in using such cases are the high level of interest on the part of students, the availability of information on differing opinions, and the awareness that ethical dilemmas can be very complex and controversial. For example, the 2016–2017 Charlie Gard case (Dyer 2017) illustrates, among other things, the conflict between the right of parents to make decisions for their non-autonomous child and the medical team’s professional opinion of the best interest of the child, the court’s involvement and the use of public resources.