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End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach
تصمیم گیری پایان عمر پزشکی برای کودکان در بازداشت: یک رویکرد عملی مشترک چند جانبه-2020 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: Child abuse and neglect | End-of-life decision-making | Care de-escalation | Multidisciplinary team | Abuse perpetration | Child abuse victimization | parens patriae |
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