Much has been written regarding the role of a substitute decision maker (SDM) for a non-competent adult in an intensive care unit (ICU) and the importance of effective communication in order to build trusting relationships between the ICU interdisciplinary team and a patient’s family including shared decision making to achieve the best outcomes of patient care. Clear, consistent communication between the treating team and family and a collaborative approach is the accepted norm. It is recognised that families at this time face challenges beyond their normal life experience and their decision making capacities can be overwhelmed by the emotional impact of anticipatory grief and the language of ICU which is often alien to them. Hence, the family’s ability to truly reflect a patient’s wishes is often impaired by the crisis. Little research has been undertaken to explore how a SDM is chosen by a patient, nor how the SDM is chosen for an incompetent adult in ICU.
In the USA, Lipkin found more than one quarter (28%) of outpatients chose someone other than the nominated contact person to act as their SDM for medical decision making and one third (33%) of the married patients did not choose their spouse as their SDM. In Iran, Mirzaei reported that gender and marital status were important factors for outpatients choosing a SDM. Only 51% of married patients chose their spouse to be SDM. Men tended to choose a brother, whilst the women sampled, preferred to choose a child. Single men preferred their father (36%) and single girls chose their father in only 5.6% of cases, preferring other trusted adults (33.3%) to be their SDM. Mirzaei reported that substitute decision making in countries of predominately Muslim culture is often impacted by Sharia law where a mother is not recognised as a child’s guardian and can only be assigned as guardian with her husband’s consent.