A rapid review of patient and family perspectives on inappropriateness of intensive care treatments at the end of life

ABSTRACT Aim To understand patient/family perspective of inappropriate intensive care unit (ICU) admissions and treatment. Methods Rapid literature review of English language articles published between 2001 and 2017 in Medline or PsycInfo. Results Thirteen articles covering 6,194 elderly patients or surrogate decision-makers from four countries were eligible. Perceived inappropriateness of ICU treatments was mainly expressed as dissatisfaction with clinicians’ as surrogate decision-makers, inconsistency with patient/family values, family distrust of physician’s predictions on poor prognosis, and inadequate communication on over-aggressive treatment causing suffering. Consultation on opinion before ICU admission varied from 1% to 53.6%, and treatment goals from 1.4 to 31.7%. Satisfaction with the decision-making process in ICU was higher for those who had certain level of control and involvement in the process. Conclusions The patient/family perspective on inappropriateness of ICU treatments involves preferences, values and social constructs beyond medical criteria. Earlier consultation with families before ICU admission, and patient education on outcomes of life-sustaining therapies may help reconcile these provider-patient disagreements. Take-home message The patient/family perspective on inappropriateness of ICU at the end of life often differs from the clinician’s opinion due to the non-medical frame of mind. To improve satisfaction with communication on treatment goals, consultation on patient values and inclusion of social constructs in addition to clinical prediction are a good start to reconcile differences between physician and health service users’ viewpoint.