"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
Title
"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
Creator
Tadros HJ; Gupta D
Identifier
Publisher
Pediatric Cardiology
Date
2023
Subject
Palliative Care; child; Decision Making; human; palliative therapy; shared decision making; letter; heart disease
Description
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].
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].
Rights
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Citation List Month
April List 2023
URL Address
Collection
Citation
Tadros HJ; Gupta D, “"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease,” Pediatric Palliative Care Library, accessed April 25, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19040.