Parents' views of their child's end-of-life care: subanalysis of primary care involvement.

BACKGROUND: The medical literature encourages primary care pediatricians (PCPs) to play a role in the care of patients who are dying. Actual involvement has not been investigated.
OBJECTIVE: Our objective was to explore current involvement of PCPs when their patients face the end of life and bereaved parents' attitudes toward it.
DESIGN: Individual, in-depth, semi-structured interviews were conducted using a focused ethnographic technique. Qualitative analysis was performed on the interviews. SETTING/
SUBJECTS: Most (14/16) interviews were conducted in the family's home, involving parents of Massachusetts children who died aged 1 month to 11 years during 2005. MEASUREMENTS: Themes identified through thematic analysis of interview transcripts were utilized.
RESULTS: Interviews were thematically analyzed, revealing four categories of themes: 1) the role of individual PCP in decision making and care at end of life; 2) general attitudes about the care provided by the PCP; 3) the impact of practice infrastructure on the PCP's care; and 4) bereavement involvement. From the interviews we hypothesize that PCPs play a supportive and appreciated role while having limited involvement in decision making and care; an involved PCP acting with knowledge of a family may in some cases provide profound guidance, but that kind of involvement is not typical; and although there is an articulated role for the PCP with the parents' and siblings' bereavement, it is not routinely exercised.
CONCLUSIONS: The interviews suggest limited involvement by PCPs in care at the end of life and subsequent bereavement. Parents overall seem to accept this role. Further research is needed to examine these observations from the perspective of PCPs.