Commentary by Chris Vadeboncoeur
Feature Article: Eskola, K., Bergstraesser, E., Zimmermann, K., & Cignacco, E. (2017). Maintaining family life balance while facing a child’s imminent death-A mixed methods study. Journal of Advanced Nursing, 73(10), 2462–2472.
Other Articles Referenced: Stajduhar, K. I., Allan, D. E., Cohen, S. R., & Heyland, D. K. (2008). Preferences for location of death of seriously ill hospitalized patients: Perspectives from Canadian patients and their family caregivers. Palliative Medicine, 22(1), 85. doi:10.1177/0269216307084doi:10.1177/0269216307084612612
Niswander, L. M., Cromwell, P., Chirico, J., Gupton, A., & Korones, D. N. (2014). End-of-life care for children enrolled in a community-based pediatric palliative care program. Journal of Palliative Medicine, 17(5), 589-591. doi:10.1089/jpm.2013.0576
Bergstraesser, E., Zimmermann, K., Eskola, K., Luck, P., Ramelet, A., & Cignacco, E. (2015). Paediatric end‐of‐life care needs in switzerland: Current practices, and perspectives from parents and professionals. A study protocol. Journal of Advanced Nursing, 71(8), 1940-1947. doi:10.1111/jan.12650
There were a number of articles in this month’s citation list which caught my eye. “Maintaining family life balance while facing a child’s imminent death-A mixed methods study.” by Eskola, Bergstraesser, Zimmermann & Cignacco was the one which I found presented the most family centred, clinically based original data. This data is the second of three components of a larger nationwide survey, ‘Paediatric End-of-Life Care Needs in Switzerland’. The other two components of the study included 1) examination of practices of care in the hospital and the home setting and 2) exploration of perspectives of healthcare professionals concerning the provision of end-of-life care. In the study I am reviewing here, the authors extracted quantitative data from patients’ medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in a hospital by computing generalized estimation equations. They then thematically analyzed interviews with parents who provided end-of-life care at home. They found that parents who cared for their child at home strove to create a sense of normality for the child, but were exhausted by the extraordinary effort required. The researchers concluded that the parents’ needs could be better met by a hospital-based pediatric palliative home care team with paid housekeeping help and psychological support.
There have been several Canadian studies on preferred location of death. In 2008 Stajduhar, Allan, Cohen, and Heyland reported on “Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers”. Their findings (in an adult population) suggested that only half of all patients and family caregivers reported a preference for a home death. In Canadian study done in children in 2008, Siden, Miller, Straatman, Omesi, Tucker and Collins; “A report on location of death in paediatric palliative care between home, hospice and hospital”, showed that children followed by a Pediatric Palliative Care Team were equally likely to die in hospital, at home or in a pediatric hospice (where one was available). More recently, Niswander, Cromwell, Chirico, Gupton, and Korones describe “End-of-life care for children enrolled in a community-based pediatric palliative care program” and concluded that children who die of complex chronic conditions spend the majority of their last 6 months of life at home. Community-based pediatric palliative care can contribute substantially to their care and comfort.
Given that a significant number of children and their families are displaying a preference to be at home during the end-of-life period, the Swiss study challenges us to develop both physical and psychological supports to allow the families remaining at home to have as normal a life as possible.