"Consider the Following Situation," Parental Treatment Preferences for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Plans.
Tamiko Younge, Hailey Moore, Jessica D Thompkins and 1 others
PMID 41223093WHAT IT FOUND
In a hypothetical worsening scenario, 13 of 14 families chose to continue all treatments for a child with a rare disease, but 10 of 13 added conditions under which they would reconsider.
Key findings
0113 of 14 families who completed an advance care plan chose to continue all treatments with the goal of prolonging life in the hypothetical scenario.
0210 of the 13 families who chose to continue all treatments added instructions and said they would reconsider in certain situations.
03Among families who added instructions, concerns about poor quality of life and certainty of decline were named as reasons they would reconsider.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was small and from one centre, with only English-speaking parents and few fathers, so themes may not fit other families. Families answered a hypothetical worsening scenario, not a real crisis, so stated preferences may not match choices in an actual emergency. One family did not complete an advance care plan, and for some families in the first group the recorded discussion was not available, so written plans were used. The study describes preferences and themes. It does not show that the advance care planning interview improves outcomes or should be used in a particular way.
The easy way to misread this
Do not treat these advance care plan choices as fixed decisions for a real crisis. They were stated for a hypothetical scenario, and most families added conditions under which they would reconsider.