Pediatric Palliative Care in Canada and the United States: A Qualitative Metasummary of the Needs of Patients and Families

Abstract

The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.

Caring for Pediatric Patients’ Families at the Child’s End of Life

“…However, perceptions of what parents have found helpful at the time of their child's death have been explored. [8][9][10][11][12][13][14][15][16][17] For example, 56 mothers and fathers whose child died in the PICU were asked what facets of care they found most helpful at the end of their child's life. 18 These parents appreciated staff who were accessible and caring, provided understandable explanations of their child's condition, and recognized that details may need to be repeated for the information to be absorbed.…”

“…1,9 Some parents have stated an overwhelming need for compassionate, sensitive staff, and others have appreciated having members of the health care team maintain contact with the family after the child's death. 1,9,16,[18][19][20][21] …”

“…To honor siblings' presence and unique contributions, nurses may explore with parents how to include siblings in meaningful ways. 16,19,27,48,62 An important aspect is obtaining parental permission and respecting parental preferences about end-of-life communication while providing the siblings with honest, accurate information. 8,10,60,62 Dialogue with siblings should be congruent with the siblings' age and developmental level, and not euphemistic or metaphoric.…”

“…9,12 Additionally, families report feeling lost or abandoned by health care providers after the child dies. 8,16,18,19,43,66 Many parents have a need to continue a relationship with the hospital staff and perceive this relationship as an extension of caring and acknowlegment. 8,10,16,66,67 The ongoing need for support following a child's death is illustrated by the subsequent encounter with Jamie's family.…”

“…16,19,66 This understanding led to the development of a multidisciplinary bereavement committee at University of Florida Health, Shands Children's Hospital, Gainesville, Florida, and the creation of the Life Journey Bereavement Program.…”