Peer-reviewed article
Reflecting on ‘Hannah’s Choice’: Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Kirsty L Moreton ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This paper examines a landmark case of Hannah Jones, a 12-year-old girl who refused a life-saving heart transplant, to explore how children can meaningfully participate in end-of-life medical decisions. The author argues that current legal frameworks are too restrictive in assessing children's competence to refuse treatment, particularly in palliative and end-of-life care. Using an Ethics of Care framework designed for children in mid-childhood, the paper advocates for a more creative and holistic approach to child decision-making in healthcare that goes beyond traditional legal standards.
Key points
- Hannah Jones was permitted to refuse a potentially life-saving heart transplant at age 12, representing a significant case in children's participatory rights
- Courts maintain reluctance to find children Gillick competent to refuse medical treatment despite progress in children's participatory rights over the past decade
- The Ethics of Care framework offers an alternative to traditional paradigms for assessing child participation in healthcare decisions
- Current legal approaches are unsuitable for end-of-life and palliative care contexts where children face their own deaths
- The paper calls for law to accommodate greater and potentially determinative participation of children in end-of-life decision-making
Limitations
This is a conceptual and legal analysis based on one case study narrative rather than empirical evidence of outcomes or effectiveness. The paper cannot demonstrate what actually happens when children have greater participation in end-of-life decisions or how such participation affects clinical, psychological, or family outcomes.
Abstract
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.