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Journal of Clinical Oncology, Vol 24, No 13 (May 1), 2006: pp. 2131 © 2006 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.05.5418
Decisional Priority in Pediatric Oncology Revisited: Involving Children in Decision MakingOncologie Pédiatrique, Hôpital pour Enfants de la Timone, Marseille, France To the Editor: I read with great interest the article by Whitney and al 1 in the January 1, 2006, issue of the Journal of Clinical Oncology, regarding decision making in pediatric oncology. Using consequential rationality to select the best action, the authors proposed a new model of decision making in pediatric oncology, in which they distinguish: (1) two steps, decisional priority and decisional authority; (2) two criteria, the existence of one best option, probability of cure; and (3) two actors, the family and the physician. This model brings the complexity of pediatric oncology decision making into the light, and provides help to the clinician to develop partnerships with parents and children appropriately. Nevertheless, to my eyes, the proposed model raises several issues that need to be taken into consideration. Although the authors initially distinguish between parents and children, they are always considered as one actor in the proposed model (see Fig 1 of Whitney et al1). This is a step backward in the recognition of the role of children in medical decision making,2 and a potential risk in undermining their central position. Indeed, we should always aim to involve the child, who nevertheless cannot always be the decision leaders,3 partly because, as mentioned by the authors, of their evolving maturity. Thus, although family and parents' perspectives on a specific decision is fundamental, patient-centered decision making in this context requires a systematic evaluation of the children's needs and requires the will to maintain children and young people at the heart of patient care and to build services around their needs. This is illustrated by a recent study4 that has shown that children as young as 10 years old can be competent in making decisions regarding their own end-of-life treatments in an unexpectedly altruistic way. This finding is almost impossible to realize without deeply incorporating children in the medical decision process. Furthermore, decision making in pediatric oncology can be a source of disagreement, not only between physicians and patients but also between children and their families; the needs and preferences of some young people and parents can be discordant.5-6 As a result, defining and distinguishing parents' and children's wills and needs in a pediatric model is crucial to promote communication and avoid or manage disagreement. Therefore, to make consensual shared decisions in a pediatric setting, a model should propose defining all actors and explaining how to manage possible differences in opinion. Also, a clear definition of decisional authority must be given and potential conflicts between decisional priority and authority need to be explored. According to the authors, it seems that decisional authority is in the parents' hands. In the case of an "easy" situation with one best option, a highly probable chance of cure, but parental refusal of the physician's proposal, would parental decisional authority be stronger than the physician's "definite" recommendations? In other words, when conflicting situations occur, who decides who holds the ultimate and genuine pragmatic authority? Similarly, the authors proposed that physicians can "offer" decisional priority to parents. In these cases, which actor has the effective and real decisional priority? Lastly, the construction of the model tends to give patients (and/or children) the role to carry the weight of decisions with higher uncertainty. Although it is legally sound, it raises an important ethical question. Undoubtedly, this model is an interesting approach toward improvement of decision making in pediatric oncology, and is a guide to shared decision making by trying to delineate for which circumstances one of the actors has decisional priority. It now needs to be validated. Furthermore, it seems that in trying to incorporate the best interests of each actor (including the child) may lead to a more appropriate model and to unveil hidden issues and to promote and preserve the child's best interests. Author's Disclosures of Potential Conflicts of Interest The author indicated no potential conflicts of interest. REFERENCES
1. Whitney S, Ethier A, Fruge E, et al: Decision making in pediatric oncology: Who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol 24:160-165, 2006 2. Massimo LM, Wiley TJ, Casari F: From informed consent to shared consent: A developing process in paediatric oncology. Lancet Oncol 5:283-287, 2004[CrossRef][Medline] 3. André N: Involving children in paediatric oncology decision-making. Lancet Oncol 5:467, 2004[Medline] 4. Hinds P, Drew D, Oakes L, et al: End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 23:9146-9154, 2005 5. Young B, Dixon-Woods M, Windridge KC, et al: Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. BMJ 326:305, 2003 6. Levi RB, Drotar D: Health-related quality of life in childhood cancer: Discrepancy in parent-child reports. Int J Cancer Suppl 12:58-64, 1999[CrossRef][Medline]
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Copyright © 2006 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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