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Phil B.FontanarosaMD, Deputy EditorIndividualAuthorStephen J.LurieMD, PhD, Contributing EditorIndividualAuthor
In Reply: We thank Ms Culver et al for their
thoughtful reflections on our study. While we cannot comment specifically
on their personal experiences, we would like to address several of the points
Some of our comments appear to have been misinterpreted. We did not
conclude that parents are "willing to accept life-sustaining care" for all
ELBW infants. Rather, we wrote that parents were "more accepting of the severely
disabled health states than HPs [health care professionals]." What this study
did not do, and what needs to be done in future research, is to explore the
processes by which parents and health care professionals make decisions and
the bases on which they do so.
We agree that the scenarios presented in our study describe only the
health and functional states of the children and not the dilemmas that a family
might face in raising a child with complex disabilities. Clearly, it is not
possible to address all such issues in a single study. We believe that more
should be done to explore these multidimensional issues, which are part of
the realities of families of children with disabilities.
We completely agree about the importance of parents being involved in
decision-making for their children's treatment. Our studies show that parents
of both ELBW and control infants overwhelmingly (>97%) believe that the final
decision regarding life-sustaining treatment should be made by parents, and
fewer, although a substantial proportion (ELBW, 66%; control, 77%), support
the role of physicians in such decisions.1
It is our perception that parental involvement is currently encouraged to
a much greater extent than it was in the past.
We are at a loss to understand why Culver et al feel that we "call into
question the very small area of decision-making" currently allowed by the
Canadian Paediatric Society2 and the American
Academy of Pediatrics.3 In fact, we conclude
that "parents are the most appropriate agents" when making decisions on behalf
of their infants in the neonatal intensive care unit because there was greater
consistency between parents and adolescents than between adolescents and health
care professionals in the valuation of the severely disabled health states.
We have repeatedly emphasized the importance of parents and health care professionals
being aware of the differences in perspectives within and between groups and
recommend individualized counseling for parents facing complex decisions about
neonatal intensive care.1,4
Saigal S, Stoskopf BL, Feeny D, et al. Informed Decisions for Extremely Low-Birth-Weight Infants—Reply. JAMA. 2000;283(24):3201–3202. doi:10.1001/jama.283.24.3198
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