Resumo

DE-PANFILIS, Ludovica. The Charlie Gard case: between a shared care planning and ethical decision-making. Rev. Bioética y Derecho [online]. 2018, n.43, pp.277-289. ISSN 1886-5887.

The Charlie Gard case has given space to some readings and positions taken by not only the scientific and medical world but also public opinion. Above all, at the media level, debate, instead of being characterised as a clinical and ethical discussion of moral issues at stake and decision-making processes, has become a sterile ideological confrontation of principles not effectively understood or outlined.

Ethical, clinical and legal issues are many. They concern, i.e. the concept of life worth living, the right not to suffer, the distribution of resources, clinical and ethical decision-making and advance care planning, end of life issues, experimental treatment, the concept of best child interest, the futility of treatments, palliative care, the right to hope, vulnerability and self-determination. Far from the length of complexity of the issues at stake, the primary objective of the article is proposing a review of some of the ethical and clinical profiles listed, starting with the legal history of Charlie and suggesting some critical reflections about.

Palavras-chave : advance care planning; end-of-life care; best child interest; ethical reasoning.

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