Ethical dilemma: what have we learned from the Charlie Gard case

• Published in: Hong Kong medical journal = Xianggang yi xue za zhi Vol. 29; no. 4; pp. 360 - 362
• Main Authors: Ho, B S H, Fong, B Y F
• Format: Journal Article
• Language: English
• Published: China Hong Kong Academy of Medicine 01-08-2023
• Subjects: Bioethics; Children & youth; Court decisions; Crowdfunding; Families & family life; Hospitals; Human rights; Medical ethics; Mitochondrial DNA; Palliative care; Parents & parenting; Patients; Professional ethics; Professionals; United Kingdom > UK; Hong Kong China; China; Bioethics; Palliative care
• ISSN: 1024-2708; 2226-8707
• DOI: 10.12809/hkmj2210183

The final decision of the court seemed inevitable, but there may have been room for improvement, especially as most children with mitochondrial DNA depletion syndrome die before the age of 4 months.6One solution might have been to set up a time-limited trial of treatment with distinct termination criteria, such as no improvement or adverse effects, especially given the unpredictable efficacy of experimental treatment7 and Charlie's deteriorating health. Mitigation more preferred than court decisions Charlie Gard's case demonstrates that the judicialisation of medical decisions can lead to unsatisfactory outcomes. [...]the court has an overriding legal power, potentially resulting in an irreversible decision that all must abide by. Conversely, the crowdfunding process transfers community-funded health services to individual beneficiaries because it allows unique patient groups to benefit from special treatment, which aggravates medical inequalities. [...]crowdfunding is based on external factors, such as perceived social values, instead of conventional indicators such as medical needs.