A "Primer" for Parents Involved in Ethics Consults Involving Their Children

AbstractIn this issue of The Journal of Clinical Ethics (JCE), two studies identify a so-called critical "disconnect" in the discourse between parents and ethics consultants seeking an optimal outcome regarding children. Parents, these authors report, lack specific ethics-informed resources geared to their understanding as lay people that would enable them to advocate effectively for what they think and feel is best for their children and thus what they also want most. These authors call for new materials to be written, especially for these parents. These might be best conceptualized as "primers" for these parents. This piece, then, is not like the usual initial article that expands on one or two articles also in the issue. Rather, it is written for parents but includes recommendations for ethics consultants and other providers related to the many disparate discussions intended for parents. These include the limits of ethics and ethical expertise, the disability paradox, mutual pretense, selected ethical problems that arise at children's different ages, suicide, sick children's siblings, and parents' own grief. This primer, written in response to the above studies' call, is an initial effort that hopefully will be followed by others and may serve as a model for these future endeavors.