Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Abstract

Objective: To explore the preferences of competent patients with advanced lung cancer regarding involvement of family and/or others in their medical decision-making, and their future preferences in case of loss of competence. Methods: Over 1 year, physicians in 13 hospitals in Flanders, Belgium, recruited patients with initial non-smallcell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every 2 months until the fourth interview and every 4 months until the sixth interview. Results: At inclusion, 128 patients were interviewed at least once; 13 were interviewed 6 consecutive times. Sixty-nine percent of patients wanted family members to be involved in medical decision-making and this percentage did not change significantly over time. One third of these patients did not achieve this preference. Ninety-four percent of patients wanted family involvement if they lost competence, 23% of these preferring primary physician control over decision-making, 41% shared physician and family control, and 36% primary family control. This degree of preferred family involvement expressed when competent did not change significantly over time at population level, but did at individual level; almost half the patients changed their minds either way at some point during the observation period. Conclusions: The majority of patients with lung cancer wanted family involvement in decision-making, and almost all did so in case of future loss of competence. However, as half of the patients changed their minds over time about the degree of family involvement they wanted if they lost competence, physicians should regularly rediscuss a patient's preferences.

The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making

“…2,13], and DM [13][14][15]; and also reveal that family caregiver involvement in DM is variable both across consultations and among different triads [13]. Family caregiver involvement in DM can vary on a spectrum from passive to dominant [4,16,17] and the form/extent of involvement may be influenced by contextual factors such as the patient's age, gender, health status, cultural background and relationship with the family caregiver [11,18]. Despite the growing empirical evidence base, there remains limited conceptual description of family caregiver involvement in DM.…”

“…For example, family caregiver involvement in DM is increased among married/de-facto patient-caregiver pairs compared to other caregivers [11,18], and when caregivers report a close and strong relationship with the patient [4].…”

“…advanced cancer) compared to milder or more short-term illnesses/injuries (e.g. ear infection) [11,49].…”

“…Most cancer patients (49-84%) and family caregivers (54-59%) report both preferring and experiencing some family caregiver involvement in DM [8][9][10][11][12]. However the form and extent of family involvement in DM appears to vary widely.…”

The Role of Patients’ Families in Cancer Treatment Decision-Making: Perspectives among Eastern and Western families

“…[7][8][9] Among patients with advanced lung cancer in Belgium, Pardon et al reported that patients' family members regularly attended consultation and treatment appointments in order to provide emotional support, request further information and participate in the TDM process. 10 A large, multiregional, prospective cohort study of newly diagnosed patients with lung and colorectal cancer undertaken in the USA found that most participants involved family members in treatment decisions. 11 Nevertheless, the study concluded that further research is required to evaluate the impact such involvement might have on patient outcomes.…”