Rurik Löfmark, Tore Nilstun, Colleen Cartwright, Susanne Fische, Agnes van der Heide, Freddy Mortier, Michael Norup, Lorenzo Simonato and Bregje D Onwuteaka-Philipsen for the EURELD Consortium
The book strives for as complete and dispassionate a description of the situation as possible and covers in detail: the substantive law applicable to euthanasia, physician-assisted suicide, withholding and withdrawing treatment, use of pain relief in potentially lethal doses, terminal sedation, and termination of life without a request (in particular in the case of newborn babies); the process of legal development that has led to the current state of the law; the system of legal control and its operation in practice; and, the results of empirical research concerning actual medical practice.
Test Santé vient de publier les résultats d'une enquête sur les actes de fin de vie et l'euthanasie. Elle est le prolongement de l’enquête récente sur les soins palliatifs. Pour cela, Test Santé a donné la parole aux personnes concernées : proches, médecins et infirmiers. Il en ressort que les soins palliatifs, aussi efficaces soient-ils, n'empêchent pas certains de souhaiter mourir. L’enquête souligne le fait que la demande vient le plus souvent exclusivement du patient lui-même (47% des cas contre 38% de la famille), et c’est encore plus vrai pour les patients en soins palliatifs (61%). Par ailleurs, Test Achats constate que l’euthanasie joue un rôle dans le débat sur la qualité de la fin de vie et que celle-ci est meilleure lorsque l’euthanasie est appliquée «à un moment plus naturel de la mort » (ou même avant dans certains cas) plutôt qu’après un acharnement thérapeutique.
In the linked study (doi:10.1136/bmj.b2772), Van den Block and colleagues report a national mortality follow-back study of end of life care in Belgium conducted during 2005 and 2006. The findings are a valuable contribution to understanding the context of dying in Belgium. They detail the frequency of team based palliative care; involvement of generalists; use of intensive alleviation of symptoms, which can extend to palliative sedation (termed continuous deep sedation); and the incidence of euthanasia and physician assisted suicide. However, the authors’ interpretation of the data and the conclusions they reach raise questions. Their conclusion that life shortening decisions, including euthanasia and physician assisted suicide, are not related to a lower use of palliative care in Belgium and often occur within the context of multidisciplinary care, misrepresents the frequencies they report and is tangential to the main findings.
End of life decisions that shorten life, including euthanasia or physician assisted suicide, are not related to a lower use of palliative care in Belgium and often occur within the context of multidisciplinary care.
Van den Block and colleagues’ paper about end of life decision making and end of life care provides important data to support the debate about physicians’ role in death and dying. Their finding that end-of-life decision making seems to be associated with a high use of palliative care is not surprising, because a protracted dying process with much suffering may be expected to result in both a high use of palliative care and a high frequency of end-of-life decisions, especially for assertive patients with clear preferences concerning the end stage of their lives. More importantly, the study’s results suggest that palliative care is not able to prevent physicians and patients from making medical decisions that hasten death. This may be due to insufficient quality, that should be further improved, but it may also be indicative of principal limitations of palliative care, that apparently cannot address all suffering at the end of life.
In Belgium, where euthanasia was legalized in 2002, we conducted a follow-up study in 2007 to two largescale nationwide surveys on medical end-of-life practices that had been conducted in 1998 and 2001. This follow-up study enabled us to investigate differences in the frequency and characteristics of these practices before and after the enactment of the law.
Medical end-of-life decisions are frequent in minors in Flanders, Belgium. Whereas parents were involved in most end-of-life decisions, the patients themselves were involved much less frequently, even when the ending of their lives was intended. At the time of decision making, patients were often comatose or the physicians deemed them incompetent or too young to be involved.
The total number of deaths studied was 11,704 of which 1517 involved continuous deep sedation. In Dutch hospitals, CDS was significantly less often provided (11%) compared with hospitals in Flanders (20%) and U.K. (17%). In U.K. home settings, CDS was more common (19%) than in Flanders (10%) or NL (8%). In NL in both settings, CDS more often involved benzodiazepines and lasted less than 24 hours. Physicians in Flanders combined CDS with a decision to provide physician-assisted death more often. Overall, men, younger patients, and patients with malignancies were more likely to receive CDS, although this was not always significant within each country. Conclusion Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients’ characteristics or clinical profiles. Further
Abstract Objectives Potentially life-shortening medical end-of-life practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the presence of an explicit patient request and the self-estimated degree of life shortening) they label as euthanasia or sedation. Methods We conducted a large stratified random sample of death certificates from 2007 (N=6927). The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response rate was 58.4%. Results In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lac