Background
Parental decision making is a critical component in the provision of palliative
and end-of-life care, yet factors that parents perceive as influencing this process,
when they are making decisions for their children, have not been well characterized.
Methods
As part of a mixed-methods cohort study, we interviewed 73 parents of 50
pediatric patients who were referred to the hospital’s pediatric palliative care
service. The semistructured interviews focused on “decision making for your
child”; the interviews were recorded and transcribed. A random sample (n
= 13) was first coded and analyzed for core themes, and these themes were then
cross-validated with a second random sample (n = 3) of interviews.
Results
Four dominant interrelated themes permeated parents’ discussions about
the decisions they were making for their children and the process of decision making.
First, Orientation and Direction (including the subthemes of Goals and Hopes,
Spirituality and Meaning, and Purposeful Effort) connotes the parents’ effort to
establish and clarify the broad context of decision making. Second, Defining What Is
Good for the Child (including the subthemes of Quality of Life and Suffering, and
Normalcy and Normalization) conveys how the parents posed questions and pondered what
decisions would be in the child’s best interests. Third, the entwined theme of
Relationships, Communication, and Support reflects how parents reported the social and
interactive nature of decision making. Fourth, the theme of Feelings and Personal
Accountability focuses inward as parents report efforts to deal with their emotional
responses and self-judgments.
Conclusions
Parents report grappling with several influences upon their decision-making
processes that extend well beyond the standard discussions of medical information
exchanges and the evaluation of risks and benefits. Decision support for these parents
should account for these diverse influences.