Deciding the end of life for patients with disorders of consciousness: a European survey

Abstract

Introduction: Withdrawal of artificial nutrition and hydration (ANH) is ethically justified for patients with irreversible disorders of consciousness (coma, vegetative (VS), minimally conscious state (MCS)) [1]. However, the absence of definite ethical steps within the medical community makes objective end-of-life decisions difficult to take. The present survey aims to debrief attitudes towards end-of-life decisions in these patients in order to facilitate future guidelines. Methods: A 16-item questionnaire around various issues on consciousness was presented to attendees at conferences in Europe. Data were obtained from 3,672 respondents (M age 36 +/- 16 years, range 14 to 88; 55% women; 34 EU countries) and were analyzed with SPSS v. 16.0. Results: Sixty-seven percent (n = 2,454) agreed with ANH withdrawal in chronic VS (31%, n = 1,138 disagreed; 2%, n = 80 no response). A significant agreement was expressed by nonreligious respondents (vs religious; B = 0.70, P <0.001) and nonmedical professionals (vs doctors; B = 0.34, P = 0.001). Significant disagreement was expressed by women (vs men; B = -0.25, P = 0.004), central and south Europeans (vs northern; B = -0.85, P <0.001 and B = -1.23, P <0.001, respectively) and those of higher age (B = -0.008, P = 0.01). Eighty percent (n = 2,956) did not wish to stay alive if themselves were in a permanent VS (18%, n = 625 wished to stay alive; 2%, n = 64 no response). Seventy-eight percent considered that being in permanent VS is worse than death for the patient's family (55% considered it worse than death for patients themselves). Sixty-nine percent (n = 2,523) disagreed with ANH withdrawal in chronic MCS (29%, n = 1,073 agreed; 2%, n = 76 no response). A significant disagreement was expressed by central and south Europeans (vs northern; B = -0.58, P <0.001 and B = -1.3, P <0.001, respectively) and respondents of higher age (B = -0.007, P = 0.019); a significant agreement was expressed by non-religious respondents (vs religious; B = 0.65, P <0.001). Sixty-four percent (n = 2,355) did not wish to be kept alive if themselves were in a permanent MCS (34%, n = 1,248 wished to stay alive; 2%, n = 69 no response). Forty percent considered that being in a MCS is worse than VS for the patient's family (50% considered it worse than VS for patients themselves). Conclusions: These findings raise important ethical issues concerning our care for patients with chronic disorders of consciousness. In light of high rates of diagnostic error in these patients [2], the necessity for adapted standards of care is warranted.