Ethical dilemmas in cancer care: Who supports the families?
Children with cancer and their parents are not offered ethics support.
Children with cancer and their parents often face difficult ethical dilemmas related to the child's treatment and care. Healthcare staff can turn to clinical ethics support when faced with difficult decisions, but families do not have access to similar services – at least for now.
Pernilla Pergert is senior lecturer in caring science with a focus on care ethics
In Sweden, clinical ethics support is mostly directed at healthcare professionals and when they deliberate on dilemmas. The perspectives of the child (the cancer patient) and the parents are usually only included via proxy. In in the US, ethics support is also offered directly to children and parents to help them navigate their own dilemmas. Developing similar support in Sweden could provide families with tools to reflect, share the burden, and make shared decisions that feel more sustainable over time.
A paper recently published in BMC Medical Ethics reports on a study of how ethics support personnel perceived potentially including patients and parents and offering this kind of support to them.
“Involving children with cancer and their families in ethics conversations is not about whether to do it, but how it should be done,” says Pernilla Pergert, senior lecturer in caring science with a focus on care ethics at Uppsala University’s Centre for Research Ethics & Bioethics (CRB), and one of the authors.
Pernilla Pergert and her co-authors highlight a widespread concern among ethics support staff: that raising difficult issues might do more harm than good. As a result, the risks are often seen as outweighing the potential benefits of inviting children with cancer and their parents into conversations about ethical dilemmas. But these children and their families have a right to information and participation.
“The situation will remain difficult regardless, and they might still be uncertain about what they feel is right” Pernilla Pergert explains. “Being included in the conversation gives them an opportunity to share their perspectives, supports their reflections on what matters to them, and helps them sort through their thoughts.”
Protecting the relationships at stake requires sensitivity to hierarchies, family dynamics, and vulnerability. Offering both shared and separate spaces for conversations about ethical dilemmas – and making sure interactions stay respectful and balanced – can strengthen trust between families and care teams. When participation is adapted to each person’s capacity, context, and role, it becomes possible to hold meaningful conversations without causing harm, overexposure, or undue burden.
According to Pergert and her colleagues, it is essential for healthcare organisations to make ethics a natural part of everyday practice. By demystifying ethical discussions, building confidence in ethics support staff, and ensuring that conversations are well-structured, safe, and grounded in trust, healthcare providers can create the right conditions.
In the end, the authors argue, structured, respectful, and safe ethical conversations are not just helpful – they are fundamental for safeguarding integrity, trust, and dignity for patients and their families.
By Anna Holm Bodin
Billstein, I., Bartholdson, C., Castor, A., Molewijk B., Pergert, P. Ethics support personnel’s perceptions of patient and parent participation in Clinical Ethics Support Services in pediatric oncology. BMC Medical Ethics 2025;26(1):104. DOI: 10.1186/s12910-025-01267-5