What Constitutes the Best Interest of a Child? Views of Parents, Children, and Physicians in a Pediatric Oncology Setting

Background:Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance.Aims:To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research.Design:A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings.Data Sources:The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13–19 years) with cancer.Results:Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making.Conclusion:Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.

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“…20 Parents and adolescents experience a lack of choice because decisions are guided by a medical protocol. 19,35,39,42 …”

Section: Resultsmentioning

confidence: 99%

“…Evidence for treatment decision-making varies with some suggesting HCPs make the decision, 20 others that parents and HCPs decide 22 or, as Talati et al 36 state, 58% of HCPs believed the adolescent (over 16 years) is the primary decision maker.…”

Section: Resultsmentioning

confidence: 99%

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

et al. 2016

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“…This gap is an indicator of the many problems researchers encounter when working with a vulnerable population and underscores the fact that children's voices remain rather marginal compared to those of parents and healthcare professionals (Coyne, Hayes, Gallagher, Regan, ; Ruhe, Badarau, Elger, & Wangmo, ). Studies that have included the minor's point of view have focused mainly on attitudes towards communication and decision‐making (Coyne, Amory, Kiernan, & Gibson, ; Ruhe et al., ), adequacy of cancer services (Gibson, Aldiss, Horstman, Kumpunen, & Richardson, ) and the best interest standard (de Vries et al., ). As far as we know, there are only a few studies that focus on children's lived experiences by analysing their cancer stories.…”

Section: Introductionmentioning

confidence: 99%

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology

2017

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Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.

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“…Both the paternalistic and children's rights views appeal to arguments that touch on increasing children's autonomy and the best interest standard, which is the western standard of care when it comes to pediatric cases. 5…”

Section: Section I: Definitions and Assumptionsmentioning

confidence: 99%

“…However, after the initial shock of the cancer diagnoses subsided, parents and children felt that what is in one's best interests are values outside of medical context like leading a good life, having a sense of control, and maintaining their identities -either through religion or other ways. 5 The paternalist view on decision-making in healthcare might argue that we trust parents to make decisions that are in their child's best interests in general -for example, which schools they attend, and what food they eat. 4 Therefore, Samantha's parents are probably the best equipped to know what is in her health interests as well.…”

Section: Section Ii: Analysismentioning

confidence: 99%

Decision-making through the lens of a pediatric cancer case

Selman

2019

DMJ

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It is crucial to obtain a competent individual’s informed consent in any medical process, including cancer treatments. However, when it comes to incompetent children, it seems to be favourable, but not necessary, to obtain their assent in medical practice.1 This paper considers Christine Harrison’s example of Samantha, an eleven-year-old girl that was treated for osteosarcoma in her left arm. Samantha had previously been treated by amputation and a course of chemotherapy. This cancer later metastasized to her lungs, decreasing her chances of remission with aggressive treatment to 20%. Although she wanted to refuse treatment, she was deemed incompetent to make decisions about her cancer care, and her parents adamantly wanted her to continue treatment.7 This paper considers physicians’ moral obligations in pediatric cancer cases such as Samantha’s. I will define assent, the principles of autonomy, beneficence, and competence as it pertains to children. I consider arguments of two opposing views–a child’s rights view that argues in favour of Samantha’s decision, and a paternalistic view that opposes her. After reviewing the bioethical literature on the risks and benefits of children’s decision making in health care, I argue that Samantha’s wishes to stop treatment ought to be respected.Throughout the paper, I will use the bioethical principles of respect for autonomy and beneficence to defend my position. Finally, I address potential objections my position may face and conclude.

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What Constitutes the Best Interest of a Child? Views of Parents, Children, and Physicians in a Pediatric Oncology Setting

Cited by 16 publications

References 32 publications

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology

Decision-making through the lens of a pediatric cancer case

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