Current debates on end-of-life sedation: an international expert elicitation study

End-of-life sedation, though increasingly prevalent and widespread internationally, remains one of the most highly debated medical practices in the context of palliative medicine. This qualitative study aims to elicit and record the perspectives of leading international palliative care experts on current debates. Twenty-one professionals from diverse backgrounds, sharing field-specific knowledge/expertise defined by significant scholarly contribution on end-of-life sedation, were recruited. Open-ended, semi-structured interviews, following a topic-oriented structure reflecting on current debates, were conducted. Results were analysed using thematic content analysis. Three main aspects of sedation were identified and discussed as potentially problematic: (a) continuous deep sedation as an extreme facet of end-of-life sedation, (b) psycho-existential suffering as an ambivalent indication for sedation and (c) withdrawal or withholding of artificial nutrition and hydration as potentially life-shortening. On these grounds, concerns were reported over end-of-life sedation being morally equivalent to euthanasia. Considerable emphasis was placed on intentions as the distinguishing factor between end-of-life acts, and protective safeguards were introduced to distance sedation from euthanasia. This study shows that, despite the safeguards introduced, certain aspects of sedation, including the intentions associated with the practice, are still under question, parallels being drawn between end-of-life sedation and euthanasia. This reaffirms the existence of a grey area surrounding the two practices, already evidenced in countries where euthanasia is legalized. More clarity over the issues that generate this grey area, with their causes being uncovered and eliminated, is imperative to resolve current debates and effectively inform research, policy and practice of end-of-life sedation

End-of-life care in general practice:a cross-sectional, retrospective survey of 'cancer', 'organ failure' and 'old-age/dementia' patients

Background:End-of-life care is often provided in primary care settings.Aim:To describe and compare general-practitioner end-of-life care for Dutch patients who died from 'cancer', 'organ failure' and 'old-age or dementia'.Design:A cross-sectional, retrospective survey was conducted within a sentinel network of general practitioners. General practitioners recorded the end-of-life care of all patients who died (1 January 2009 to 31 December 2011). Differences in care between patient groups were analysed using multivariate logistic regressions performed with generalised linear mixed models.Setting/participants:Up to 63 general practitioners, covering 0.8% of the population, recorded the care of 1491 patients.Results:General practitioners personally provided palliative care for 75% of cancer, 38% of organ failure and 64% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); organ failure: 0.28 (0.17, 0.47); old-age/dementia: 0.31 (0.15, 0.63)). In the week before death, 89% of cancer, 77% of organ failure and 86% of old-age/dementia patients received palliative treatments: (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.54 (0.29, 1.00); organ failure: 0.38 (0.16, 0.92)). Options for palliative care were discussed with 81% of cancer, 44% of organ failure and 39% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.34 (0.21, 0.57); organ failure: 0.17 (0.08, 0.36)).Conclusion:The results highlight the need to integrate palliative care with optimal disease management in primary practice and to initiate advance care planning early in the chronic disease trajectory to enable all patients to live as well as possible with progressive illness and die with dignity and comfort

Characteristics associated with patients' appointment of a surrogate decision-maker by country in iunivariate and multivariable analyses (n = 4,396)^a.

<p>Values for which p<0.05 are highlighted in bold.</p>a<p>0.3–4.5% of values for each characteristic were not provided by the GP (missing values).</p>b<p>Backwards stepwise logistic regression - dependent variable ‘Patient had appointed a surrogate decision-maker’.</p>c<p>Not entered into logistic regression.</p>d<p>Removed during logistic regression.</p>e<p>No patients in the category had appointed a surrogate decision-maker (odds ratio of 0).</p

The prevalence of patient-GP communication about medical EoL treatment preferences and patient appointment of a surrogate decision-maker (n = 4,396)^a.

a<p>% of missing observations ranged from 0.3–1.2%.</p>b<p>multivariable logistic regressions (forced enter). Dependent variables were ‘Patient did not discuss a medical EoL preference with GP or appoint a surrogate decision-maker’; ‘Patient discussed a medical EoL preference’; ‘Patient appointed a surrogate decision-maker’; ‘Patient appointed a surrogate decision-maker in writing’; and ‘Patient only appointed a surrogate decision-maker verbally’. Independent variables included country (OR and p-value shown), age, cause of death, dementia diagnosis; place of death; the number of contacts with the GP in the last week and in the second and third months before death; GP palliative care provision; the importance of curative, life-prolonging and palliative care as treatment aims and if the GP had discussed the primary diagnosis. The results of the multivariate logistic regressions were compared with equivalent univariate analyses (not shown) to check for any major differences in the magnitude or direction of associations.</p>c<p>Too few patients in this category to conduct a logistic regression.</p

Patients’ personal and care characteristics (n = 4,396)^a.

a<p>% of missing observations ranged from 0.3–4.5%.</p>b<p>test of association: Pearson’s chi-sq.</p>c<p>not included in statistical analyses - Patients for whom the main place of care in the last year of life was reported as “other” and Dutch patients in nursing homes were excluded from the analysis for reasons described in the methods section.</p