Publication
"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
Tadros H, Gupta D · Pediatric Cardiology · 2023
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain control, surprise regarding timing of death, and cure-oriented goals of care. Further, those parents whose children had cardiopulmonary resuscitation (CPR) at end-of-life compared to those who experienced cessation of life sustaining therapies had a much higher odds of disagreeing with a “good death.” End-of-life discussions and perceptions are challenging to decipher due to multiple reasons, including parental cultural and religious beliefs, implicit bias of medical caregivers and regulatory oversight. Often, parents may not realize the trajectory of their child’s condition until late in the clinical course, with one study showing this occurred at a median of 2 days prior to death [2]. Also, almost half of parents perceived their child suffered during the end-of-life period [2]. Therefore, honest communication about the big picture and early involvement of palliative care can improve parental understanding and expectations. Early involvement of palliative care has been shown to increase advanced care planning and reduce invasive interventions at end-of-life, including CPR and mechanical support [3]. This is outlined in the recent AHA consensus statement regarding use of palliative care across the life span of children with heart disease [4]. Increasing evidence suggests the role of shared decision making and supporting families when providing end-of-life care. Historically parents have placed more onus on the medical team for decision-making [5]. However, in a recent study on parental perceptions in decision making, a majority of parents desired equal shared decision making with the medical team in scenarios of palliative care referrals, cessation of life sustaining care, and in resuscitation efforts (Fig. 1) showing an evolution of parental preferences in decision-making [6]. Nonetheless, our field provides unique scenarios. For instance, the increasing use of ventricular assist devices (VADs) further complicate the question of timing of palliative care and end-of-life. There is a lack of consensus as to when compassionate deactivation should occur in these scenarios [7]. This may explain why most patients with VADs were still receiving invasive interventions at end of life [8]. Overall, this article by Moynihan et al. exemplifies the importance of open communication between the medical team and caregivers, shared decision making, and early palliative care involvement in the pursuit of improving parental perceptions of a “good death” in end-of-life care.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.