End of Life Ethical Considerations for Children of Parents Who Are Incarcerated

Outcomes 1. Utilizing a case-based approach, participants will self-report the ability to analyze and address the complex practical needs of the seriously ill or dying child with an incarcerated parent.2. Upon successful completion participants will be able to analyze and address the complex social and ethical considerations faced when a sick child dies and their incarcerated parent is not granted privileges to be present at the end of their life. Key Message We describe an end of life case of a pediatric patient who's mother was incarcerated during her hospitalization and ultimately her death in our pediatric ICU. This case illustrates a number of important ethical and practical considerations when caring for a child with an incarcerated parent. Abstract Per the National Institute of Corrections, one in fifty children in the United States has a parent in prison. This case illustrates several important ethical and practical considerations when providing serious illness and end of life care for a child with an incarcerated parent.A 5-year-old female, previously healthy, presented after being found unresponsive at home with work-up revealing liver laceration, adrenal hemorrhage, bruising, and a subdural hematoma requiring emergent decompressive hemicraniectomy complicated by likely ruptured AVM causing edema requiring frontal and left temporal lobectomy. Course complicated by hemodynamic instability, adrenal insufficiency, and waxing and waning neurologic exam. The patient clinically worsened and subsequent imaging including functional MRI revealed very severe brain injury. Family was informed that if the patient survived, she would most likely be completely dependent on care for the remainder of her life. Unfortunately, the patient's mother was incarcerated prior to her admission. Our pediatric palliative care team advocated for and was able to include her in decision making via an electronic tablet and the family ultimately decided on compassionate extubation. Despite our efforts, the patient's mother was not granted compassionate release or a temporary release in time to be with the patient at her time of death, ultimately joining via electronic tablet, which raised several ethical considerations for the teams caring for her.This case highlights the importance of including incarcerated parents in medical decision making and end of life care for their children and well as touches on the potential for additionally complex grief for the incarcerated parent whose child dies. Accommodations are often made for dying inmates but unfortunately, in this case, not made for the parent of a dying child. More advocacy work may be needed to promote such accommodations. Keywords Diversity, Equity, Inclusion, Belonging, JusticeEthical / Legal Aspects of Care