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

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.