Truth-telling at the end of life: A pilot study on the perspective of patients and professional caregivers

ObjectiveTo describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange.MethodsIn-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory.ResultsThere was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear ‘the whole truth’. Patients and caregivers agreed that truth-telling should be a ‘dosed and gradual’ process. Several barriers to more complete and timely truth-telling were identified.ConclusionThe preferences of both patients and caregivers for step-by-step – and hence slow and limited – information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making.Practice implicationsThe preference of patients and caregivers to ‘dose’ the truth may entail some risks, such as a ‘Catch 22’ situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.