When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care

Abstract

BackgroundParents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.MethodsQuestionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.ResultsOf 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.ConclusionsAlthough positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0098-3) contains supplementary material, which is available to authorized users.

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“…27,28 Parents are physically exhausted from the demands of caregiving and from emotional overload; they are too often overwhelmed and unable to process the information they are being given. Parents want and need emotional support, 13 and clinicians must attend to their shock and emotional distress. Attending to emotions such as anxiety, depression, joy, guilt, and loss is critical to building a trusting relationship and is essential to supporting a family through a difficult decision.…”

“…Whenever there is perceived choice, there is the possibility of guilt and suffering. 13 Relieving suffering, whether physical, spiritual, or existential, is an important tenant of palliative care and is fundamental to supporting a family through decisionmaking. 65 Opportunities exist to provide relief of suffering of the child, parents, and other family members.…”

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“…Parental hope for children undergoing PPC treatment requires concentrated effort and appears alongside such other emotions and attitudes as hope, pain and suffering, fear, anxiety, physical and psychological exhaustion, and uncertainty in light of the child's approaching death and uncertain future (Bally et al, ; De Graves & Aranda, ; Kylmä & Juvakka, ; Zimmermann et al, ). It is worth noting that palliative care as such—with its holistic philosophy of care, including physical, psychological, social, and spiritual aspects—concerns the family as a whole, both during care and in the bereavement period (Mok et al, ; Saunders, ; Saunders, Baines, & Dunlop, ).…”

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