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


Office of the Child Advocate, 900 King St., Suite 210, Wilmington, DE 19801, USA. Electronic address: [Email]


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.
UNASSIGNED : 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.


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

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