The Littlest Voice
In pediatric clinical settings, patient information is funneled from care teams to parents than expectedly to their children, tasking the parents with providing surrogate consent. Despite this chain of communication, truth-telling between children and parents presents a unique dilemma for many parents prompting evasive maneuvers to avoid the difficult conversation with their children. Foregoing communication with parents ultimately interferes with a child’s autonomy in clinical settings. Despite its developmental-related imitations, pediatric autonomy in clinical settings can be understood as access to basic prognostic and diagnostic information that allows the opportunity to assent to procedures and care plans.
The decision for parents to withhold prognostic and diagnostic information from their children stems from a fear of further distressing the child amid serious or terminal illness. The element of terminality adds finite pressure to guardians facing the choice between transparency or deception in communications with their dependents. This disconnect between parent and child raises questions regarding pediatric autonomy and how much children should be entrusted with receiving information about their bodies or steering their care. Respecting child autonomy is integral to arguing that children have rights that develop in adulthood but can be violated in the present before they have the opportunity to use them (Hubbard 2019). The right to autonomy is a violative right; children do not have full autonomy, but their ability to inherit it in the future makes it wrong to disregard the limited but growing sense they presently possess. Despite the likelihood of patients diagnosed with a terminal illness reaching an age at which they have the opportunity to exercise full autonomy over their care, the neutrality and respect for future must be preserved as it would be for any child in clinical settings.
Children, fundamentally unable to exercise the full extent of their potential autonomy, depend on adults to act in accordance with the rights and needs they possess currently (Schapiro 2003). As such, parents are responsible for upholding their child's autonomy in a clinical setting. By leaving youth voices unattended to, physicians and parents disregard the child’s investment in their care and the budding autonomy they have. Obtaining assent from youth patients displays respect for their developing autonomy and addressing the fact that this child is the agent experiencing care (Unguru 2011). Respecting the pediatric patient as a person, with equal interest in their wellbeing and future, is integral to maintaining patient dignity.
During the pediatric end of life, with hospice and palliative care prioritizing patient comfort, psychological support throughout the dying process is integral to managing the child’s needs during end-of-life. If the child’s need for communication and support are neglected, the child will feel emotionally isolated, being left to cope with their death and other feelings alone. Complicated by their inability to comprehend the medical terms of their health and future, the process of coping with separation and death becomes overwhelming to children. These unaddressed concerns overshadow the child's quality of life throughout their final days (Muris et. al 1996), rendering their palliative care incomplete and ineffective in the absence of prognostic and diagnostic disclosure.
A qualitative study conducted retrospectively reflecting on their decision to communicate with their children uncovered that all parents that did discuss their child’s imminent death did not regret their choice. The interactions during a child’s final days remain indelible on parent’s perceptions of their relationship; engaging in these difficult conversations to facilitate a dialogue about their child’s death promotes healing after the loss of their child (Kreicbergs 2004). In order to enhance their child’s quality of life and reserve their rights, caretakers must be as honest and transparent as age-appropriate, letting the child guide this discovery. The term “appropriate” stems from ensuring that information is presented in a manageable and processable way for the child to open up a discourse about. This varies by age, of course, but the solution to the question of appropriateness is not resolved by neglecting the conversation in general. Parents must understand that though their child may seem immature, their young developmental age does not preclude them from experiencing fear and having a basic understanding of their future.
This article was written by Halle Paredes of Connecticut College. References and acknowledgements can be found in our journal, under "Current Issue"