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. 2022 Mar;107(3):282-287.
doi: 10.1136/archdischild-2020-320866. Epub 2021 Jul 26.

Palliative care for children with complex cardiac conditions: survey results

Sidharth Vemuri  1   2 , Ashleigh E Butler  2   3 , Katherine Brown  4   5 , Jo Wray  4   5   6 , Myra Bluebond-Langner  7   8
Affiliations

Palliative care for children with complex cardiac conditions: survey results

Sidharth Vemuri et al. Arch Dis Child. 2022 Mar.

Abstract

Objective: To explore perspectives of paediatric cardiac and palliative care professionals on providing palliative care to children with complex cardiac conditions.

Design: A national survey including closed-ended and open-ended questions as well as clinical scenarios designed to capture referral practices, attitudes towards palliative care, confidence delivering key components of palliative care and perspectives on for whom to provide palliative care. Responses to closed-ended questions and scenarios were analysed using descriptive statistics. Open-ended responses were analysed thematically.

Participants: Paediatric cardiac and palliative care professionals caring for children with complex cardiac conditions in the UK.

Results: 177 professionals (91 cardiac care and 86 palliative care) responded. Aspects of advance care planning were the most common reasons for referral to palliative care. Palliative care professionals reported greater confidence than cardiac colleagues with such discussions. Clinicians agreed that children with no further surgical management options, comorbid genetic disorders, antenatal diagnosis of a single ventricle, ventricular device in situ, symptomatic heart failure and those awaiting heart transplantation would benefit from palliative care involvement.

Conclusions: Components of palliative care, such as advance care planning, can be provided by cardiac care professionals alongside the disease-directed care of children with complex cardiac conditions. Further research and training are needed to address confidence levels in cardiac care professionals in delivering components of palliative care as well as clarification of professional roles and parent preferences in delivery of family-centred care for children with complex cardiac conditions.

Keywords: cardiology; palliative care.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Attitudes towards palliative care. CCP, cardiac care professional; PCP, palliative care professional.
Figure 2
Figure 2
Self-reported confidence in delivering key components of palliative care. CCP, cardiac care professional; N/A, not applicable; PCP, palliative care professional.
Figure 3
Figure 3
Referral practices related to clinical scenarios. CCP, cardiac care professional; ICU, intensive care unit; PCP, palliative care professional.
See this image and copyright information in PMC

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