End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach

Abstract

Background: Parents have a constitutionally-protected, fundamental right to make decisions concerning the health and well-being of their children, afforded by the Due Process Clause of the Fourteenth Amendment. However, parental rights are not absolute, and may be curtailed after a finding of parental "unfitness" including perpetration of egregious child abuse/neglect. Court intervention may be necessary to assert "parens patriae" authority to protect a child's well-being. Disagreements over medical care for a child (particularly when parent maltreatment resulted in life-altering clinical conditions and parents are suspected of perpetrating abusive injuries) often pose conflicts of interest. End-of-life decision-making involving abuse perpetrators may be influenced by self-interest, due to potential for escalation of criminal charges.

Objective: Discuss medico-legal decision-making for children in child welfare custody using a detailed case example involving a child near-fatally, abusively injured by his parents; review of relevant case law/national legal precedents; and clinical policy statements guiding end-of-life decision-making for pediatric patients.

Participants/setting/methods: Using an exploratory, quasi-qualitative approach, perceived experiences of purposefully-selected taskforce members identified key themes that informed a care de-escalation protocol, implemented across the state.

Results: Key themes included coordinated communication, expedited legal proceedings, and balancing child's best interest (the right not to suffer for a prolonged period of time or sustain complications) with parents' rights and due process concerns, and informed protocol development.

Conclusions: Practicable guidance established in the protocol can be theoretically adapted at the local level to address the complexity inherent in end-of-life decision-making for children in custody.

Keywords: Abuse perpetration; Care de-escalation; Child abuse and neglect; Child abuse victimization; End-of-life decision-making; Multidisciplinary team; parens patriae.