(Mis)understandings and uses of ‘culture’ in bioethics deliberations over parental refusal of treatment: Children with cancer

Abstract

We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic identity was described as important reasons behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of seeking a court order was of significant detriment to many of the children in our cases and that this option should be used sparingly. There is a need for empirical research on the outcome of cases where a court order is sought.

(Bio)Ethics in a Pluralistic Society

“…How do we know the difference between a good and bad compromise? It is equally true that "sticking to your principles" can also lead to bad outcomes, as demonstrated by the children who received no care at all as they died, because the doctors caring for them insisted on treatment that the parents did not want [22]. There will always be value in discussing and debating what the right thing to do is.…”

“…It might be actions such as requiring a patient to sign a "discharge against medical advice" [21]. In paediatrics, the courts can be applied to enforce the clinician preferred treatment against the parents' wishes [22]. If no attempt is made to find out if the patient agrees or disagrees, then there is no possibility of developing a consensus or compromise.…”

Do we understand the intervention? What complex intervention research can teach us for the evaluation of clinical ethics support services (CESS)

“…In MCD as described in Janssens et al (2015), participants with background in healthcare present the case. However, as known from empirical research, a case and underlying reasons for actions related to a case may depend on who describes it [47]. In this respect, case description as starting point for the ethical analysis may differ considerably in different CESS models.…”