Cancer-related symptoms most concerning to parents during the last week and last day of their child's life.
OBJECTIVE
Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the child's parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care.


METHODS
Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the child's life, speaking English, being willing to participate, and having access to a telephone.


RESULTS
Eighteen symptoms of concern were identified as occurring during their child's final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice.


CONCLUSIONS
This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.
Pritchard
Michele
M
Department of Oncology, St Jude Children's Research Hospital, 332 N Lauderdale, Memphis, TN 38105-2794, USA.
Burghen
Elizabeth
E
Srivastava
Deo Kumar
DK
Okuma
James
J
Anderson
Lisa
L
Powell
Brent
B
Furman
Wayne L
WL
Hinds
Pamela S
PS
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000503:physiopathology* / Q000523:psychology* / Q000628:therapy; D010166:Palliative Care; D010290:Parents / Q000523:psychology*; D013727:Terminal Care