Braving Difficult Choices Alone: Children's and Adolescents' Medical Decision Making

Abstract

ObjectiveWhat role should minors play in making medical decisions? The authors examined children's and adolescents' desire to be involved in serious medical decisions and the emotional consequences associated with them.MethodsSixty-three children and 76 adolescents were presented with a cover story about a difficult medical choice. Participants were tested in one of four conditions: (1) own informed choice; (2) informed parents' choice to amputate; (3) informed parents' choice to continue a treatment; and (4) uninformed parents' choice to amputate. In a questionnaire, participants were asked about their choices, preference for autonomy, confidence, and emotional reactions when faced with a difficult hypothetical medical choice.ResultsChildren and adolescents made different choices and participants, especially adolescents, preferred to make the difficult choice themselves, rather than having a parent make it. Children expressed fewer negative emotions than adolescents. Providing information about the alternatives did not affect participants' responses.ConclusionsMinors, especially adolescents, want to be responsible for their own medical decisions, even when the choice is a difficult one. For the adolescents, results suggest that the decision to be made, instead of the agent making the decision, is the main element influencing their emotional responses and decision confidence. For children, results suggest that they might be less able than adolescents to project how they would feel. The results, overall, draw attention to the need to further investigate how we can better involve minors in the medical decision-making process.

Managing discomfort and developing participation in non-emergency MRI: Children's coping strategies during their first procedure

“…the practical business of trying to become an active/rational agent in the medical process rather than simply its passive object. [13,21] The above findings highlight how preparing children to handle prospectively difficult contexts requires carefully tailored, individually sensitive action by Significant Others. [22] At the very least, interactions in medical imaging departments are more restricted than in other areas of healthcare, [20] occur in highly unfamiliar circumstances for most patients and are likely to be brief and singular.…”

“…It is widely reported in healthcare psychology that while most adults (including many clinicians) traditionally consider children to natively require extensive preparation and care in most medical contexts [13] , asking the same order of support for an adult is fraught with cultural implications regarding personal weakness/dependency or even time-wasting [27] . For example, masculinity issues are at stake, an inability to show strength when facing a potentially intimidating medical situation [28] .…”

“…[10,11] Relevant work shows that children value being taken seriously and also that they are very capable of exhibiting informed levels of satisfaction regarding medical care. [12,13] It is therefore important for clinicians to develop the ability to understand children's experience during imaging to provide high-quality care and develop meaningful interactions to improve the examination situation for all involved.…”

Improving shared health decision making for children and adolescents with chronic illness: A narrative literature review

“…However, SDM fails to be consistently applied to paediatric healthcare [20,21]. Studies report that many doctors doubt obtaining a child's approval for treatment is important [22], even though research suggests that children want to be actively involved in the medical decision process [23,24]. Furthermore, only little research has investigated interventions to improve communication between doctors and paediatric patients [19].…”

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

“…In addition, although communication is the most common 'procedure' in medicine, the art of communicating with pediatric patients is rarely formally taught [6] and is an area in which health care providers feel poorly prepared [7]. Previous literature has evaluated child and adolescent preferences for learning about the cancer diagnosis [8], engaging in decision-making [9,10], receiving bad news [11] and making plans for end-of-life care [12,13]. We know little about their preferences for learning about possible outcomes of their illness, including whether cure is possible and what their future life may be life.…”