Parents know best: Or do they? Treatment refusals in paediatric oncology

Abstract

Although treatment refusal is an infrequent occurrence in paediatric oncology, it is an important issue that threatens the ongoing therapeutic relationship between the health-care team and families. While there are good reasons to support the decision-making authority of parents in the medical setting, parents' rights in this respect are not absolute. Fortunately, most disagreements between clinicians and parents regarding treatment decisions for children are resolved within the health-care team/family dyad or with the objective advice of other clinicians or clinical ethics services. The increasing appeal of 'natural therapies' and unsubstantiated confidence with which they are prescribed may lead to more frequent refusal of conventional, evidence-based oncology treatment in the future. The harm principle may assist paediatric oncologists in the difficult task of determining when it is justifiable to refer a case for judicial intervention.

Factors associated with abandonment of therapy by children diagnosed with solid tumors in Peru

“…Worldwide, the reported abandonment rates in pediatric cancer seem to be highly variable . According to a previous meta‐analysis of abandonment in pediatric leukemia, a range of 0–74% has been described in LMIC, whereas abandonment remains a rare phenomenon in HIC . Our study shows results comparable to Central American countries where mainly multidisciplinary efforts and institutional support for decreasing abandonment have improved initially high rates .…”

“…According to the type of malignancy, our study did not find a significant association between a higher risk of abandonment and the type of cancer after the multivariate analysis. Several pediatric leukemia studies have described highly variable treatment abandonment rates, whereas studies on retinoblastoma and sarcomas report higher rates of abandonment when compared to other solid tumors …”

Cancer survival in Indigenous and non-Indigenous Australian children: what is the difference?

“…Many adult Indigenous cancer patients simply withdraw from active treatment after their initial experience of it. [32] Although treatment refusal is an infrequent occurrence in paediatric oncology in general, [33] overseas studies have found that treatment adherence ranges from 41-98%. [34,35] Information about treatment refusal and compliance among Indigenous children diagnosed with cancer is not available.…”

Fifty years of paediatric ethics

“…There are two crucial but contestable ethical concepts underlying this debate, which partly explains why it seems not to have advanced very far. One is the idea of the ‘social’ interests of children, which can be distinguished from their ‘medical’ interests in physical and mental health . Put very briefly, boys who are circumcised for reasons of religion or strong family tradition can be seen as benefitting socially, by virtue of becoming a fully accepted member of a family and a social group, even if they do not benefit medically in any way.…”

“…One is the idea of the 'social' interests of children, which can be distinguished from their 'medical' interests in physical and mental health. 12 Put very briefly, boys who are circumcised for reasons of religion or strong family tradition can be seen as benefitting socially, by virtue of becoming a fully accepted member of a family and a social group, even if they do not benefit medically in any way. A constant issue in paediatric ethics is how to weigh up social interests against medical interests, when they point in different directions.…”