Can Parents Restrict Access to Their Adolescent’s Voice?: Deciding About a Tracheostomy

Abstract

Parents are the default decision-makers for their infants and children. Their decisions should be based on the best interests of their children. Differing interpretations of children’s best interests may be a source of conflict. Providers’ biased evaluations of patients’ quality of life may undermine medicine’s trustworthiness. As children mature, they should participate in medical decision-making to the extent that is developmentally appropriate. In this month’s Ethics Rounds, physicians, a philosopher, and a lawyer consider parents’ demand, supported by the hospital’s legal department, that their 17-year-old son be excluded from a potentially life-and-death medical decision.

Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

“…They have a legitimate role in bringing their personal values and beliefs, family life context, and other concerns to the discussion, and a legal obligation to make informed decisions 5,9,18,30,48,59,60 . The child's perspective, when age and cognitively appropriate to contribute, is recognized as critical to preserve a child's emerging autonomy and to promote their interests 30,33,45,48,49,61 . The HCP's role is to inform, advise, and assist the child and family‐caregivers 15,16,23,32–34,45,46,48,59 .…”

“…Some qualitative research suggests that decision‐making experiences in a paternalistic versus a shared‐decision model do not necessarily harm family‐caregivers' moral experiences given the quality of communication was valued above decisional authority 9,22 . Contemporary expert opinion articles, in contrast, warn about a new tendency towards an informed decision‐making model whereby family‐caregivers have full decisional control while HCPs are merely informers, resulting in threats to patient autonomy, professional moral distress, and conflicted decisions 22,30,33,60,61,63,64 . No research, however, has explored children and family‐caregivers' preferences, HCPs' experiences, or societal support for this decision‐making model.…”

“…5,9,18,30,48,59,60 The child's perspective, when age and cognitively appropriate to contribute, is recognized as critical to preserve a child's emerging autonomy and to promote their interests. 30,33,45,48,49,61 The HCP's role is to inform, advise, and assist the child and family-caregivers. 15,16,23,[32][33][34]45,46,48,59 HCPs include the most responsible physician, often in critical care, but also other physicians involved in long-term care (i.e., respirology, otolaryngology, and palliative care).…”

“…9,22 Contemporary expert opinion articles, in contrast, warn about a new tendency towards an informed decision-making model whereby familycaregivers have full decisional control while HCPs are merely informers, resulting in threats to patient autonomy, professional moral distress, and conflicted decisions. 22,30,33,60,61,63,64 No research, however, has explored children and family-caregivers' preferences, HCPs' experiences, or societal support for this decision-making model.…”