The main objective of this dissertation was to gain insight into the preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care setting transfers and end-of-life decision-making (ELDs).
In the course of one year, physicians in thirteen hospitals in Flanders, Belgium, recruited patients with initial non-small-cell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every two months until the fourth interview and every four months until the sixth interview.
At inclusion, 128 patients were interviewed at least once; thirteen were interviewed six consecutive times. Nearly all patients wanted information about diagnosis, treatment and prognosis and a small majority wanted information about palliative care and ELDs. Preferences regarding participation varied according to the type of decision. Some preferences, more specifically the preferences for information about prognosis, palliative care and ELDs and the preferences for shared decision-making, were regularly not well met by the physician. Preferences were variable over time, at least when it concerned information preferences about palliative care, ELDs and participation preferences. Family was important in medical decision-making to 69% of the patients and to almost all patients in case of incompetence.
Doctors should ask their advanced lung cancer patients at the beginning of their illness how much information and participation they want, and should keep on asking because preferences do change over time in ways they might not expect. (BELG J MED ONCOL 2012;6:132–135)