436 - Are we Employing Shared Decision Making and Offering Palliative Care in the Neonatal Intensive Care Unit? A 10-Year Retrospective Chart Review

Friday, April 28, 2023

5:15 PM – 7:15 PM ET

Poster Number: 436
Publication Number: 436.147

Gillian MacLean, Queen's University Faculty of Health Sciences, Glenburnie, ON, Canada; Sawyer Karabelas-Pittman, Queen's University Faculty of Health Sciences, Kingston, ON, Canada; Helen Coo, Queen's University, Kingston, ON, Canada; Christine C. Moon, Queen's University, Kingston, ON, Canada; Hannah Lee, Queen's University Faculty of Health Sciences, Kingston, ON, Canada

Presenting Author(s)

Gillian MacLean, MBChB, FRCPC (she/her/hers)

Neonatologist
Queen's University Faculty of Health Sciences
Glenburnie, Ontario, Canada

Background:

Perinatal palliative care is an emerging subset of palliative care and aims to support families who 1) have a fetal diagnosis of a life-limiting condition (an incurable condition that will shorten the lifespan), or 2) are facing preterm labor at the limits of viability (22+0 to 25+6 weeks gestation). Shared decision making is considered the best approach, yet the consistency of its offering is unknown. Similar studies to the one described herein have been done where perinatal hospice and palliative care teams are in place; however, we have neither resource in our center.

Objective:

The objectives of this study were to describe the 1) frequency of referrals and direction of care, 2) timing and style of consult with the NICU, and 3) frequency of shared decision-making among families given a fetal life-limiting diagnoses or facing preterm labour at the limits of viability.

Design/Methods:

We performed a retrospective review of charts covering a 10-year period (Jan 2010-Jan 2020). Clinical records involving prenatally diagnosed life-limiting conditions (Group A) and preterm labour at the limits of viability (Group B) were included. Data related to delivery, fetal survival profile, fetal comorbidities, family discussions, referral details, palliative care received, decisions for pregnancy, and outcomes were recorded. Descriptive statistics were generated to summarize the characteristics of the sample and overall outcomes.

Results:

Group A included 73 patients. The NICU was consulted in 36% of these cases. 15.4% of families who received NICU consults were offered perinatal palliative care, which was accepted in 75% of these cases. Shared decision making was documented in 27% of NICU consults.
Group B included 114 patients. The NICU was consulted in 63% of cases. Families were offered perinatal palliative care in 33% of cases and when palliative care was offered, it was accepted 58% of the time. Shared decision making was documented in 47% of NICU consults.
See attached tables for more detailed results.

Conclusion(s):

Our results provide a snapshot of how perinatal palliative care is being offered at a level 3 NICU in Canada with no hospice or pediatric palliative care team available. Results are likely to be similar in areas with the same resources. Therefore, these results validate the need for standardized NICU consultation and palliative care referral criteria to advance access to and quality of neonatal end-of-life care. A neonatologist or pediatric palliative care provider is not necessary to employ shared decision or provide perinatal palliative care.