Abstract
When parents refuse beneficial treatments for their children, it creates a unique set of ethical considerations for the clinician. This dilemma pits respect for parental authority and recognition of the parent–child relationship as an important childhood interest against the clinician’s obligations to promote and protect the health-related interests and wellbeing of the child. This chapter examines the ethical considerations central to this dilemma and provides practical guidance for responding to parental refusals of treatment.
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Notes
- 1.
I will use the term “parents” to refer to those who stand in the role of primary caregiver and decision-maker on behalf of the child. We should recognize that though in a majority of cases parents are the decision-makers for their children, some children are raised by people filling this role that are not their biological parents—say, grandparents, foster parents, adoptive parents, or appointed guardians—who then also act as medical decision-makers for these children. I will use the catch-all phrase “parents” both for simplicity sake and to reflect that the decision-maker stands in the parental role.
- 2.
In this chapter I will focus on the ethical issues related to parental refusal for treatment. This assumes a situation where the child lacks the capacity for autonomous decision-making, and the parent is the designated decision-maker for the child. In cases where children are considered to be mature minors or to have the capacity to make their own decisions autonomously, the usual considerations familiar to clinicians apply. That is, patients may autonomously refuse beneficial treatments if they have the necessary decision-making capacity for an autonomous refusal.
- 3.
Wellbeing is an all-encompassing term, and does not just focus on health, but also on how well someone is doing overall. There are different theories of wellbeing in the philosophical literature; one group of theories equate wellbeing to fulfillment of wishes and desires, so that wellbeing is determined by the person’s own view of the good. Other theories describe objective lists which can be used to measure someone’s wellbeing using the items on the list (Bester 2020). Since children have not developed an independent view of the good and a life-plan, it makes sense to describe childhood wellbeing in terms of an objective list linked to childhood flourishing and development. See for example Powers and Faden (2006), who describe wellbeing as achieving a minimum level over six dimensions: health, personal security, attachments, reasoning, self-determination, and respect. From this concept of wellbeing one can develop a set of childhood interests, components of wellbeing that should be present to protect the child’s flourishing and development.
- 4.
To be clear, these are moral obligations. Parents have the moral responsibility to protect and promote the wellbeing of their children by virtue of the special role and relationship that exist between parents and children. These moral obligations can be grounded in a variety of ways, by reference to different moral approaches. For example, I’ve argued that these could be social obligations by virtue of the parental social role, with society’s justice obligations to provide for childhood wellbeing resting in large part on parents (Bester 2018b). These are not to be understood as legal obligations, though it may be that society creates legal frameworks and policies to protect the wellbeing of children that may place similar legal obligations on parents.
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Further Reading
Bester, J.C., M. Smith, and C. Griggins. 2017. A Jehovah’s Witness adolescent in the labor and delivery unit: Should patient and parental refusals of blood transfusions for adolescents be honored? Narrative Inquiry in Bioethics 7 (1): 97–106.
Diekema, D.S. 2005. Responding to parental refusals of immunization of children. Pediatrics 115 (5): 1428–1431.
Lo, B. 2013. Resolving ethical challenges, 5th ed. Philadelphia, PA: Lippincott, Williams, and Wilkins. Chapter 4, Promoting the patient’s best interest and Chapter 37, Ethical issues in pediatrics).
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Bester, J.C. (2022). Parental Refusal of Beneficial Treatments for Children: Ethical Considerations and the Clinician’s Response. In: Nortjé, N., Bester, J.C. (eds) Pediatric Ethics: Theory and Practice . The International Library of Bioethics, vol 89. Springer, Cham. https://doi.org/10.1007/978-3-030-86182-7_9
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