Conflicts Between Parents and Health Professionals About a Child’s Medical Treatment: Using Clinical Ethics Records to Find Gaps in the Bioethics Literature

Abstract

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child's medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child's life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child's life but rather some other aspect of the child's well-being.

The Healthcare Conflict Scale: development, validation and reliability testing of a tool for use across clinical settings

“…Breakdown in communication (Almost, 2006;Almost et al, 2016;Azoulay et al, 2009;Back & Arnold, 2005;Breen et al, 2001;Brinkert, 2006Brinkert, , 2010Choong et al, 2010;Fassier & Azoulay, 2010;Forbat et al, 2015;Janvier, 2009;Klein, 2009;Kopelman, 2006;McDougall, Notini, & Phillips, 2015;Meller & Barclay, 2011;Rentmeester, 2013;Studdert et al, 2003;Twiss, 2006;Vinton et al, 1998;Weissman, 2001; Weissman et al, 2010) 2. Disagreements about goals of care (Back & Arnold, 2005;Breen et al, 2001;Brinkert, 2010;Burns et al, 2003;Butz et al, 1998;Choong et al, 2010;Fassier & Azoulay, 2010;Forbat et al, 2015;Kaufman, 2011;Kopelman, 2006;McDougall et al, 2015;Paris et al, 2007;Weissman, 2001;Weissman et al, 2010) 3. Family mistrust of physicians and the healthcare system (Almost, 2006;Almost et al, 2016;Back & Arnold, 2005;Butz et al, 1998;Forbat et al, 2015;Meller & Barclay, 2011;Rentmeester, ...…”

What kinds of cases do paediatricians refer to clinical ethics? Insights from 184 case referrals at an Australian paediatric hospital

“…This may reflect the fact that babies born prematurely are usually cared for in the nearby women's hospital, coming to RCH only for surgery. The issues around life-sustaining interventions for these patients are therefore primarily encountered at the women's hospital rather than at RCH 24. Previous studies do not report patient age data in a way that enables identification of patients aged 14–15 years.…”

How I manage sickle cell patients with high transcranial doppler results

“…Occasionally this may rise from religious beliefs (Catlin, ) or from a disagreement about the efficacy of the suggested therapy. Information and guidance regarding the ethical issues surrounding parental refusal of therapy that may not result in an imminent threat to life requires more bioethical research (McDougall et al , ). In our practice, children whose parents refuse chronic transfusion therapy are generally treated with hydroxycarbamide.…”