OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-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. RESULTS: There 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. CONCLUSION: The 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 IMPLICATIONS: The 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.
OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-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. RESULTS: There 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. CONCLUSION: The 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 IMPLICATIONS: The 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.
Authors: Koen Pardon; R Deschepper; R Vander Stichele; J L Bernheim; F Mortier; N Bossuyt; D Schallier; P Germonpré; D Galdermans; W Van Kerckhoven; L Deliens Journal: Support Care Cancer Date: 2012-01-15 Impact factor: 3.603
Authors: Celina F Estacio; Phyllis N Butow; Melanie R Lovell; Skye T Dong; Josephine M Clayton Journal: Support Care Cancer Date: 2018-03-03 Impact factor: 3.603
Authors: Willemjan Slort; Annette H Blankenstein; Bernardina S Wanrooij; Henriëtte E van der Horst; Luc Deliens Journal: BMC Palliat Care Date: 2012-06-27 Impact factor: 3.234