Medical Futility in Paediatrics. Interdisciplinary and International Perspectives
Medical Futility in Paediatrics. Interdisciplinary and International Perspectives
Contributor(s): Kartina Aisha Choong (Editor)
Subject(s): Christian Theology and Religion, Philosophy, Social Sciences, Law, Constitution, Jurisprudence, International Law, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Social Philosophy, Theology and Religion, Islam studies, Religion and science , EU-Legislation
ISSN: 2630-8185
Published by: Trivent Publishing
Keywords: Law; Medicine; Medical Ethics; Theology; paediatrics; paediatric palliative care; Health Policy and Management; English Literature; Nursing and History; Charlie Gard; Alfie Evans
Summary/Abstract: This book addresses the issues and challenges raised by the high-profile cases of Charlie Gard and Alfie Evans. The individual chapters, which complement one other, were written by scholars with expertise in Law, Medicine, Medical Ethics, Theology, Health Policy and Management, English Literature, Nursing and History, from the UK, Australia, Canada, the Czech Republic, France, Germany, India, Spain, Turkey and the USA. The following are among the key questions explored in the book. Is the courtroom an appropriate forum for resolving conflicts relating to medical futility in paediatrics? If so, should parental rights be protected by confining judicial powers only to cases where there is a risk of significant harm to the infant; or should the “best interests” test continue to be recognised as the “gold standard” for paediatric cases? If not, should mediation be used instead, but how well would this alternative method of dispute resolution work for medical futility conflicts? Further, should social media be deployed to garner support, and should outsiders who are not fully acquainted with the medical facts refrain from intervening? And, how are comparable situations likely to be managed in different countries? What lessons can be learned from them as well as from religious perspectives?
- E-ISBN-13: 978-615-81353-1-3
- Print-ISBN-13: 978-615-81353-0-6
- Page Count: 329
- Publication Year: 2019
- Language: English
Charlie Gard and Alfie Evans: Their Medico-Legal Journeys
Charlie Gard and Alfie Evans: Their Medico-Legal Journeys
(Charlie Gard and Alfie Evans: Their Medico-Legal Journeys)
- Author(s):Kartina Aisha Choong
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:2-25
- No. of Pages:24
- Keywords:Charlie Gard; Alfie Evans; Paediatrics; NHS; Law; Medicine; Medical Ethics; Theology; Health Policy and Management;Nursing and History;
- Summary/Abstract:Charlie Gard and Alfie Evans were two desperately ill children born to young first-time parents. They were treated at two renowned publicly-funded paediatric hospitals in England, namely the Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) in London and the Aldey Hey Children’s NHS Foundation Trust (Alder Hey Hospital) in Liverpool. The cases first captured public attention when both sets of parents vehemently opposed the court declarations sought by the hospitals that it would be in the infants’ best interests to have their life-sustaining treatment (LST) withdrawn after the treating medical teams decided that the continuation of LST was futile and may even lead to the prolongation of pain and suffering. In each case, the declaration was granted by the High Court. In both, the parents appealed to the highest court in the land as well as to the European Court of Human Rights (ECtHR) in Strasbourg. However, none of the appeals managed to overturn the initial court declaration, and both infants died shortly after their LST was discontinued. This context-setting chapter chronicles their medico-legal journeys and concludes by reflecting on their legacies for similar cases in the near future.
- Price: 4.50 €
The Vexed Question of Best Interests in Decisions Relating to Infants and Medical Futility
The Vexed Question of Best Interests in Decisions Relating to Infants and Medical Futility
(The Vexed Question of Best Interests in Decisions Relating to Infants and Medical Futility)
- Author(s):Jo Samanta
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:27-50
- No. of Pages:24
- Keywords:Paediatrics; Law; terminally ill; seriously ill; infant; children
- Summary/Abstract:Intractable disputes between doctors and parents relating to seriously ill infants are neither new, nor unusual. These tragic situations are invariably played out in very public arenas with potential repercussions for all parties concerned. The decision making standard employed by the courts is that of best interests, as objectively assessed by the court and taking all relevant matters into consideration. This chapter provides an examination and critique of the evolution of the best interests test when used in this area. It ends with a brief consideration of the possible role of mediation as a vehicle for alternative dispute resolution.
- Price: 8.00 €
Best Interests: The “Gold Standard” or a Gold Plating?
Best Interests: The “Gold Standard” or a Gold Plating?
(Best Interests: The “Gold Standard” or a Gold Plating?)
- Author(s):William Seagrim
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:51-77
- No. of Pages:27
- Keywords:paediatrics; law; parental responsibility; public children law
- Summary/Abstract:As a yardstick in paediatric cases, best interests is branded the ‘gold standard’. Some commentators suggest that it insufficiently protects parents from state intervention, calling for an enabling significant harm threshold. In this chapter, I argue that such submissions are devoid of any legal basis and that, in any event, their undergirding justifications are misconceived. Inter alia, I suggest that comparisons to public children law are erroneous and that significant harm proponents overlook routine state interference with parental responsibility. I also argue that the consequences of a threshold are illogical and the gold standard’s detractors miscategorise as weakness its most precious attribute.
- Price: 4.50 €
Charlie’s Law
Charlie’s Law
(Charlie’s Law)
- Author(s):Sarah Sargent
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Court case
- Page Range:78-94
- No. of Pages:17
- Keywords:legal standard; children law; medical decision-making; significant harm; best interests; paternalism
- Summary/Abstract:The case of Charlie Gard highlights an area of law which is in critical need of reform and clarification: which legal standard should be applied in medical decision-making situations for children, when there is an effort to override the wishes of the parents. Charlie’s Law would make clear the threshold is that of “significant harm” and not of “best interests,” ensuring more protection for parental wishes and reducing needless interference, amounting to an exercise of arbitrary paternalism, from medical treaters and courts. This chapter explores the significance and benefits of clearly establishing the “significant harm” threshold.
- Price: 8.00 €
Media Framing of “Medical Futility”
Media Framing of “Medical Futility”
(Media Framing of “Medical Futility”)
- Author(s):Kim McGuire
- Language:English
- Subject(s):Social Sciences, Media studies, Ethics / Practical Philosophy, Communication studies, Theory of Communication
- Page Range:95-115
- No. of Pages:21
- Keywords:Charlie Gard; Alfie Evans; Mass media; media reporting; children; paediatrics; medical futility; court case;
- Summary/Abstract:The cases of Charlie Gard and Alfie Evans in the UK have made public the difficult nature of “medical futility” cases. The media has undoubtedly played a significant role in this global dissemination. This chapter discusses interpretations of the media role, as both ‘negative’ and ‘positive.’ Arguably, for the families, media reporting enabled widening access to avenues of support. For the medical professionals it brought abuse and declining trust, partly due to partisan and limited access to information, and an emphasis upon emotive story telling. How these conflicting viewpoints can be ‘mediated’ and ‘moderated’ in the future will be discussed.
- Price: 4.50 €
Resource-intense Treatments in a Resource-finite Environment
Resource-intense Treatments in a Resource-finite Environment
(Resource-intense Treatments in a Resource-finite Environment)
- Author(s):Richard Wai Ming Law
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Court case
- Page Range:116-142
- No. of Pages:27
- Keywords:Charlie Gard; Alfie Evans; children law; law; ethics; medical crowdfunding; healthcare; paediatrics; childcare; life sustaining care;
- Summary/Abstract:Resource-intense medical treatments place significant financial burdens on healthcare systems especially in the provision of life sustaining care to critically unwell patients. Although decisions on whether to continue life sustaining treatments are typically based on medical need and likely clinical benefit, discussions on available resources and how they are best allocated remain relevant to healthcare professionals. The legal cases of Charlie Gard and Alfie Evans provide an important backdrop to the discourse on resource allocation. Both have successfully utilised medical crowdfunding to raise significant funds of their treatments. This chapter discusses the clinical and legal implications of limited resources and the nature of the impact that medical crowdfunding exerts on resource allocation.
- Price: 8.00 €
Citizenship at the Discretion of the State
Citizenship at the Discretion of the State
(Citizenship at the Discretion of the State)
- Author(s):Alejandra Boto
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, International Law, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, EU-Legislation
- Page Range:143-162
- No. of Pages:20
- Keywords:Alfie Evans; Public Law; Citizenship; paediatrics; law; ethics
- Summary/Abstract:On 24 April 2018 it was announced that Alfie Evans was granted Italian citizenship despite the absence of any Italian lineage. The decision seemed to be based on Article 9.2 of Italian Act number 91, 1992 which allows the conferral of citizenship by a discretionary governmental decision provided there is a special interest of the State. This chapter takes a close look at this provision, known as the privilege of naturalisation, focusing on public law issues such as equity and judicial review, offering also a comparative analysis.
- Price: 8.00 €
Contested Paediatric Palliative Care
Contested Paediatric Palliative Care
(Contested Paediatric Palliative Care)
- Author(s):Brendan McCarthy
- Language:English
- Subject(s):Philosophy, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Theology and Religion, Religion and science
- Page Range:163-175
- No. of Pages:13
- Keywords:Paediatric Palliative Care; Church of England; decision-making; law; religion;best interest; medical ethics;
- Summary/Abstract:Determining the best interests of children in the context of potentially futile medical intervention is highly complex and must be approached in a fully transparent manner, consistent with other areas of care. The Church of England views medical ethics through the prism of four cascading principles: affirmation of life, care of the vulnerable, creation of a caring and cohesive society, and respect for individuals. Human life is valued not only instrumentally and individualistically, but also inclusively and intrinsically. This does not make decision-making easier, but it does provide a principled, consistent guide for those entrusted with end of life care.
- Price: 8.00 €
The Dynamics of Clinical Judgment, Religious Conventions and Parental Responsibilities
The Dynamics of Clinical Judgment, Religious Conventions and Parental Responsibilities
(The Dynamics of Clinical Judgment, Religious Conventions and Parental Responsibilities)
- Author(s):Mahmood Chandia, Abdulla Al-Shami
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Theology and Religion, Islam studies, Religion and science , Contemporary Islamic Thought
- Page Range:176-188
- No. of Pages:13
- Keywords:Islamic law; paediatrics; fiqh; Islamic fiqh; medical futility; parental rights; Islam; children law; Clinical Judgment;
- Summary/Abstract:This chapter aims to look at the debate from an Islamic legal (fiqh) perspective and present how Muslim parents could ensure that their attempt to discharge parental responsibility can become compatible with religious instruction, in a context where the value base to evaluate medical futility (i.e. to continue medical treatment or not), is determined by medics and the state, rather than any religious underpinning. To this end, this chapter aims to discuss the Islamic theory and practice on this subject: (1) What is the scope of parental rights and responsibilities in Islam (i.e. theory)?; and (2) How would Islamic fiqh (or legal formulations) guide parental thinking in such situations (i.e. practice)?
- Price: 8.00 €
Do Parents Have a Right to Determine Where a Child Patient Dies?
Do Parents Have a Right to Determine Where a Child Patient Dies?
(Do Parents Have a Right to Determine Where a Child Patient Dies?)
- Author(s):Lisa Cherkassky
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:189-207
- No. of Pages:19
- Keywords:medical ethics; Charlie Gard; Alfie Evans; medical futility; paediatrics; terminally ill;
- Summary/Abstract:This chapter will explore whether parents have the legal right to take their gravely ill child home to die in peace surrounded by family. Public anger surrounding the recent cases of Charlie Gard and Alfie Evans suggests that it is morally wrong to deprive parents of this final wish when medical treatment is futile and travel abroad for treatment has been ruled out. The judgments of Judge Francis (Gard) and Lady Justice King (Re C) will be examined to reveal the legal avenues available to parents of gravely ill children and whether their final wish to take their child home should be afforded more weight in futile cases.
- Price: 8.00 €
Serving the Child’s “Best Interests” in Australia
Serving the Child’s “Best Interests” in Australia
(Serving the Child’s “Best Interests” in Australia)
- Author(s):Roslyn Jones
- Language:English
- Subject(s):Philosophy, Social Sciences, Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:209-232
- No. of Pages:24
- Keywords:medical ethics; best interest; Charlie Gard; Alfie Evans; parental control; media; social media; terminally ill; legislation; children law; paediatrics;
- Summary/Abstract:Australia joined with the rest of the world in observing and commenting on the controversial debate over the fate of Charlie Gard and Alfie Evans. How Australia may have responded given similar scenarios will be explored in a number of ways. These will include considering our existing legislation, summarising the case law of comparable matters and analysing these cases in terms of issues of quality of life, professional obligations, parental versus state control and the use or misuse of media and social media in these situations.
- Price: 4.50 €
Medical Futility in Czech Paediatrics
Medical Futility in Czech Paediatrics
(Medical Futility in Czech Paediatrics)
- Author(s):Helena Krejčíková
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, International Law, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:233-249
- No. of Pages:17
- Keywords:Medical Futility; paediatrics; end-of-life decision; decision making; paediatric palliative care; Law; Bioethics; Medical ethics; Charlie Gard; Alfie Evans
- Summary/Abstract:In the Czech Republic, public debates regarding end-of-life decisions have only recently started. With no explicit legislative recognition of medical futility, clinical practice relies predominantly on a vague statutory definition of proper care and two non-binding guidelines, aimed however at adult patients. The situation in paediatrics is further complicated by the complex and often ambiguous legal regulation related to the process of decision making. In her contribution, the author introduces the Czech legal framework and clinical practice, including a new document prepared by the Paediatric Palliative Care Working Group on providing life-sustaining care, which would apply in cases similar to those of Charlie Gard and Alfie Evans.
- Price: 8.00 €
The Application of End-of-Life Legislation to Minors in France
The Application of End-of-Life Legislation to Minors in France
(The Application of End-of-Life Legislation to Minors in France)
- Author(s):Stephanie Rohlfing-Dijoux
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, International Law, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, EU-Legislation
- Page Range:250-260
- No. of Pages:11
- Keywords:medical ethics; French Law; children law; paediatrics; child protection law; End-of-Life Legislation; incurable illness;
- Summary/Abstract:This chapter explores how French Law would deal with legal problems relating to minors with incurable illnesses. In particular, the rules relating to therapeutic obstinacy, advanced directives and person of confidence would be examined. The question of how to conciliate the country’s special end-of-life legislation with the legal provisions concerning minors in family law and child protection law will be analysed, as will the fundamental rules on collective decision-making procedure in end-of-life situations.
- Price: 8.00 €
Patient Autonomy and Best Interests in End-of-Life Cases
Patient Autonomy and Best Interests in End-of-Life Cases
(Patient Autonomy and Best Interests in End-of-Life Cases)
- Author(s):Peter Elsner
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Constitutional Law, International Law, Human Rights and Humanitarian Law, Ethics / Practical Philosophy
- Page Range:261-269
- No. of Pages:9
- Keywords:medical ethics; Patient Autonomy; human rights; Patient autonomy; German Constitution;Best Interests of the Child; End-of-Life Cases;
- Summary/Abstract:The right to life is entrenched in the German Constitution mandating the state to abstain from unlawful incursions into human rights and to actively protect the enjoyment of human rights. Patient autonomy is derived from these basic rights. Maintaining or terminating medical support measures in end-of-life situation requires the patient’s consent which in minors may have to be decided by the courts based on the presumed will of the patient. Family values will have to be taken into account in establishing the presumed will of a child.
- Price: 8.00 €
Gard and Evans
Gard and Evans
(Gard and Evans)
- Author(s):Abhay Vaidya, Sourabhi Sahakari
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Comparative Law
- Page Range:270-296
- No. of Pages:27
- Keywords:Charlie Gard; Alfie Evans; public hospital; India; healthcare; medical ethics;
- Summary/Abstract:Although Charlie Gard and Alfie Evans were treated in public hospitals where the costs of treatment were borne by the UK’s National Health Service (NHS), the management decisions were not influenced by cost implications, and health professionals acted in their patients’ best interests. By contrast, in a developing country such as India, very few government-funded hospitals match the resources of the NHS. Private healthcare is expensive, and socio-economic, cultural, religious, political and legal issues influence the treatment decisions. In this chapter, the authors analyse why the NHS is unique compared to developing countries such as India.
- Price: 8.00 €
Medical Futility and Parental Paternalism in Turkey
Medical Futility and Parental Paternalism in Turkey
(Medical Futility and Parental Paternalism in Turkey)
- Author(s):Banu Buruk, Berna Arda
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Religion and science
- Page Range:297-313
- No. of Pages:17
- Keywords:Medical Futility; Medical ethics; Decision-making; children law; paediartrics; Parental Paternalism;
- Summary/Abstract:The concept of futility is mainly dependent on the following question: “who will describe which treatment is futile and which is not?” Problem arises when the physician’s authority and the parents’ autonomy stand opposite to each other. There are several unique reasons for such disagreements in communitarian “we societies” like Turkey: relatives’ paternalistic attitude, the social environment, lack of medical information, the effect of the internet, and certain national daily news. Decision-making is also affected by cultural interactions, and of course the urgency of the medical condition of the child.
- Price: 8.00 €
If We Can, Must We? Just Whose Best Interests Are We Talking About?
If We Can, Must We? Just Whose Best Interests Are We Talking About?
(If We Can, Must We? Just Whose Best Interests Are We Talking About?)
- Author(s):Vincent F. Maher
- Language:English
- Subject(s):Law, Constitution, Jurisprudence, Human Rights and Humanitarian Law, Ethics / Practical Philosophy, Religion and science
- Page Range:314-329
- No. of Pages:16
- Keywords:Charlie Gard; Alfie Evans; Jahi McMath; Best Interests;paediatric palliative care; paediatrics; medical ethics; social media
- Summary/Abstract:The recent and tragic cases of Charlie Gard and Alfie Evans, each in the UK, and Jahi McMath in the USA, are proof positive that decisions made by individual clinicians or by teams in conference rooms or even in directives issued from the Court are neither immutable nor unchangeable. This chapter examines conflicts between clinicians and families, the role of social media and of the courts and concludes with recommendations about how to proceed in future similar cases.
- Price: 8.00 €
