COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.
Verna Hendricks-Ferguson, Amy R Newman, Katharine E Brock and 4 others
PMID 34452795WHAT IT FOUND
Small pilots of a doctor-nurse goals-of-care program for parents of children with poor-prognosis cancers showed feasibility, more hospice enrollment, and less high-intensity care than national averages, but a randomized trial is still needed.
Key findings
01Bereaved parents of children who died from brain tumors reported receiving hospice information near the child's death (96%) and insensitive end-of-life communication (50%); about 50% wished they had had earlier end-of-life discussions.
02COMPLETE I was feasible and acceptable to 13 parents of 11 children, had 100% attendance at scheduled sessions, and was associated with significantly increased hope, significantly decreased uncertainty, and parent-reported diminished child pain and procedural anxiety.
03Across COMPLETE I and II pilot children, approximately 85% were enrolled in hospice and 15% received high-intensity medical interventions at end of life, compared with national averages of 40% and 60%.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The paper reports development work, small pilots, and a planned randomized trial, not completed IMPACT trial results. COMPLETE I included 13 parents of 11 children, and COMPLETE II included six parents, so findings are preliminary. The pilot hospice and high-intensity intervention comparisons were against national averages, not concurrent control groups, and the small sample was not large enough to test outcomes. Parent-reported child pain and procedural anxiety may not reflect objective clinical measurement. The intervention was delivered by MD/RN dyads with training, conversation guides, and visual aids, so the contribution of any single component cannot be separated. The qualitative parent study focused on parents of children who died from brain tumors, so it may not apply to all poor-prognosis cancers.
Declared interests
The authors declared no conflicts of interest. Prior qualitative work was funded by the Oncology Nursing Foundation, the COMPLETE I evaluation by NIH and the National Institute of Nursing Research, and the current IMPACT trial by NIH and the National Cancer Institute.
The easy way to misread this
Do not conclude that IMPACT reduces child suffering or increases hospice enrollment. The paper reports small pilots and a planned randomized trial, and the pilot outcome trends were not significant because of the small sample.