Trends in medical end-of-life practices in Belgium 1998-2001-2007

Background
Medical end-of-life practices with a potential or certain life-shortening effect for the patient are subject of bioethical debate in several countries. The principles of patient autonomy and right to self-determination are important values in such far-reaching decisions. In 2002, two laws relevant to patient autonomy in these decisions were passed in Belgium: one legalising euthanasia, and another stipulating patients' right to be involved in decisions concerning their medical treatment. This study aims to examine the rate of patient involvement in medical end-of-life decision-making before and after these legal initiatives, and to identify patient groups more at risk of not being involved.
Method
In 2007 we repeated a retrospective postal survey, previously conducted in 1998, among physicians certifying a representative sample of death certificates in Flanders, Belgium (n = 6927 in 2007 and 3999 in 1998). For each sampled death, the certifying physician answered questions regarding medical end-of-life practices and the preceding decision-making process. Anonymity of physicians and deceased patients was guaranteed through a rigorous mailing procedure.
Results
Response rates were 58% (2007) and 49% (1998). In 2007, 26% of patients were involved in the decision to perform an end-of-life practice with a possible or certain life-shortening effect, as opposed to 20% of patients in 1998. Withholding or withdrawing life-prolonging treatment was discussed with the patient in 2007 and 1998 in respectively 20% and 17% of cases, intensified pain and symptom alleviation in 24% and 19%, and life-ending drug use in 63% and 35%. Overall, reasons given for not discussing the decision with the patient in 2007 and 1998 were: the patient being unconscious (55% vs. 39%), the decision being in the patient's best interest (16% vs. 24%), and discussion doing more harm than good to the patient (10% vs.14%). Patient involvement in the decision-making process in 2007 was less likely among patients aged 80 or older compared with younger patients, among non-cancer patients compared with cancer patients, and among patients dying in an institution as opposed to at home.
Discussion
In Belgium, the euthanasia and patient rights laws were followed by increased patient involvement in all types of medical end-of-life decision making. However, the rate of patient involvement in 2007 remains low, although reported reasons for not involving allows for more patient participation. Furthermore, significant differences in patient involvement were found between patient groups, even with regard to non-clinical characteristics such as patient age, pointing to possible social inequalities in end-of-life care.