When Danny said no! Refusal of treatment by a patient of questionable competence

Abstract

The patient we call Danny was a mildly mentally retarded male in his mid-thirties who adamantly refused kidney dialysis when it was offered as the only therapeutic option for his progressive kidney failure. It was uncertain how fully Danny understood the implications of his refusal. To complicate the case still further, several "advocates" emerged to speak on Danny's behalf--each with a somewhat different interpretation of the situation and different sets of value presuppositions and ethical principles to apply to the choice. We chronicle the development of this situation through a series of scenes; and in each scene we also attempt to clarify the ethical and medico-legal issues involved at that point. Danny was finally permitted to make this decision for himself--though more by default than by an agreement by all parties to honor his autonomy. Our hope is that this presentation will lead to further discussion and clarification of these important issues.

Handbook of Intellectual and Developmental Disabilities

“…Moon (Moon & Graber, 1985) presents the case of a person with mild ID whose kidneys failed in end-stage renal disease. Treatments for this disease usually involve two heroic procedures that involve considerable pain and great inconvenience (surgery for transplantation of kidneys or renal dialysis) that "Danny'' apparently partially understood, and, consequently, he adamantly refused the dialysis option.…”

Mediating the interface between voluntariness and coercion: A qualitative study of learning disability nurses’ work in medical examinations of people with intellectual disability

“…For health professionals, it can be challenging to deal with situations where people with intellectual disability are actively resisting necessary medical examination and treatment (Heslop, Marriott, Hoghton, Jepson, & Noble, 2014; Moon & Graber, 1985). Intellectual disability is characterised by significant limitations in cognitive functioning and adaptive behaviour emerging during childhood (Emerson & Einfeld, 2011), and some individuals lack or have reduced capacity to make decisions about health matters (Goldsmith, Skirton, & Webb, 2008).…”