Check Your Bias: Providing Decisional Support for Incarcerated Surrogate Decision Makers

Area of Science:

• Medicine
• Pediatrics
• Bioethics

Background:

• Pediatric palliative care (PPC) is crucial for complex decision-making in seriously ill children.
• Effective communication with caregivers, typically parents, is essential in PPC.
• Parental incarceration introduces unique challenges to communication and decision-making in pediatric care.

Purpose of the Study:

• To present a case study of an infant with complex medical needs whose parents were incarcerated.
• To describe the interdisciplinary team's approach to supporting decision-making for parents affected by incarceration.
• To raise awareness of the complexities and challenges in providing PPC to families with incarcerated caregivers.

Main Methods:

• Case report of an infant with congenital heart disease, neurological impairment, and respiratory failure.
• Description of the interdisciplinary team's process in addressing biases and logistical issues.
• Analysis of communication strategies used to support parental decision-making regarding life-prolonging care versus end-of-life care.

Main Results:

• The case illustrates the multifaceted challenges faced by incarcerated parents in pediatric end-of-life care decisions.
• The interdisciplinary team successfully navigated biases and logistical barriers to provide support.
• The team facilitated shared decision-making despite the complexities introduced by parental incarceration.

Conclusions:

• Providing optimal pediatric palliative care requires addressing the unique needs of incarcerated parents.
• Interdisciplinary teams must be aware of and mitigate potential biases and logistical hurdles.
• Further research and awareness are needed to improve care for this vulnerable population.