P3.121: Check Your Bias: Providing Decisional Support for Incarcerated Surrogate Decision Makers

Introduction:

Introduction:
Pediatric palliative care (PPC) routinely supports complex decision making for critically ill children. This process involves the acknowledgement and mitigation of implicit and explicit biases. An incarcerated caregiver adds complexity for decision making and increases potential for bias. In the United States, incarceration is a known contributor to health disparities. Incarcerated parents struggle to maintain parental identity due to lack of communication with the healthcare team and exclusion from the decision-making process. We present the case of a medically complex newborn (J) who was impacted by caregiver incarceration.

Case Description:

Case Description:
J was born with multiple, severe congenital anomalies. His caregivers faced the difficult decision between tracheostomy placement or compassionate extubation. J’s mother supported extubation whereas J’s father, who was incarcerated during this period, did not, explaining that he wanted to meet his child before he died. The palliative care and psychosocial teams recognized biases towards J’s father and incarceration that were delaying J’s care. This acknowledgement led to strategies to mitigate these biases and provide compassionate care to J and his family.

Discussion:

Discussion:
The PPC team’s communication with this family initially centered around J’s mother, given her presence at the bedside. Following discussions with the psychosocial team, we acknowledged this approach was heavily influenced by implicit biases; biases against the system of incarceration, by not attempting to communicate with the incarcerated caregiver given the perceived complexity; and biases against the incarcerated individual, in assumptions around parental rights resulting from incarceration. Acknowledging these biases led to mitigation through the practice of individuating, perspective taking, open dialogue and advocacy.
To provide equitable care to J, significant time and resources were required to include J’s father in decision-making. This included working with prison administration to arrange contact, arranging for the review of relevant paperwork, the transfer of J to a hospital in the state where J’s dad was incarcerated and facilitating a prison furlough for J’s father to meet his child prior to compassionate extubation. These necessary processes caused delays in J’s care which required intensive advocacy and resources that are not possible for all care teams and families.

Conclusion:

Conclusion:
This case demonstrates the ethical, emotional and logistical challenges encountered by PPC when there is caregiver disagreement regarding limitations of care, compounded by the unique complexity of caregiver incarceration. Furthermore, it highlights the impact of clinician bias against the incarcerated caregiver and the existing inequalities amongst parents and families affected by incarceration. We demonstrate the importance of naming biases and using strategies to mitigate and reduce their impact on patient care. This requires honest communication, interdisciplinary collaboration, and family-centered care. We aim for this case discussion to raise awareness of an under described issue in the literature.