Conclusions The increased use of continuous deep sedation for patients nearing death in the Netherlands and the limited use of palliative consultation suggests that this practice is increasingly considered as part of regular medical practice.
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.
Sky Television’s documentary showing an assisted suicide has provoked a storm in UK tabloids, but the medical ethicist Daniel K Sokol says it has reinforced his belief in the moral permissibility of helping people die in exceptional circumstances.
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.
Terminally ill cancer patients near the end of life may experience intolerable suffering refractory to palliative treatment. Although sedation is considered to be an effective treatment when aggressive efforts fail to provide relief in terminally ill patients, it remains controversial. The aim of this study was to assess the need and effectiveness of sedation in dying patients with intractable symptoms, and the thoughts of relatives regarding sedation. Controlled sedation is successful in dying patients with untreatable symptoms, did not hasten death, and yielded satisfactory results for relatives. This study also points to the importance of palliative care and the experience of professionals skilled in both symptom control and end-of-life care.
But there is evidence that some clinicians may already be using continuous deep sedation (CDS), as a form of "slow euthanasia". Research suggests use of CDS in Britain is particularly high - accounting for about one in six of all deaths.
Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.
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.
This study investigates the use of CDS in the United Kingdom. In total, 18.7% (17.3–20.1) of the doctors attending a dying patient reported the use of CDS. CDS was more likely when patients were younger or were dying of cancer. Specialists in care of the elderly were least likely to report the use of CDS; doctors in other hospital specialties were most likely to report its use. CDS was associated with a higher rate of requests from patients or relatives for a hastened death and with a greater incidence of other end-of-life decisions containing some intent to end life by the doctor. Doctors supporting legalization of euthanasia or physician-assisted suicide, or who were nonreligious, were more likely to report using CDS. There was palliative care team involvement in half of all CDS cases, and prescription of opioids alone for sedation occurred in one-fifth of the cases but was not reported by specialists in palliative care.
Surveys in different countries (e.g. the UK, Belgium and The Netherlands) show a marked recent increase in the incidence of continuous deep sedation at the end of life (CDS). Several hypotheses can be formulated to explain the increasing performance of this practice. In this paper we focus on what we call the ‘natural death’ hypothesis, i.e. the hypothesis that acceptance of CDS has spread rapidly because death after CDS can be perceived as a ‘natural’ death by medical practitioners, patients' relatives and patients. We attempt to show that the label ‘natural’ cannot be unproblematically applied to the nature of this end-of-life practice. We argue that the labeling of death following CDS as ‘natural’ death is related to a complex set of mechanisms which facilitate the use of this practice. However, our criticism does not preclude the view that CDS may be clinically and ethically justified in many cases.
A 46-year-old-man who wants to die after a stroke that left him almost completely paralysed is bringing a groundbreaking legal action that could effectively lead to the legalisation of assisted suicide in the UK. Martin was a fit and active man who enjoyed rugby, cars and socialising with friends in the pub before suffering a brainstem stroke three years ago. Now requiring round-the-clock care, his mobility is limited to moving his eyes and small movements of his head. He communicates by staring at letters on a computer screen which the machine recognises and forms into words spoken by a digitised voice. Martin has been asking to die since six months after the stroke but says he has no one willing to assist him and cannot on his own organise a trip to the Swiss clinic Dignitas, where he could end his life legally. His wife, who chooses to be known as Felicity, says she will be with him if he dies but will not help bring about his death.
Until quite recently bioethicists have had little of depth and probity to say about the duty of healthcare professionals in general and physicians in particular to relieve pain and suffering associated with disease and/or its treatment. The singular exception is the now arguably canonical work by physician and ethicist Eric Cassell, titled The Nature of Suffering and the Goals of Medicine.2 I invoke the word ‘‘canonical’’ on the grounds that to my knowledge no one has offered a sustained critique of Cassell’s conceptual analysis of suffering or of his inextricable linkage of its nature to the essential features of persons. In doing so, Cassell suggests not that living beings without the status of persons cannot suffer, but rather that the suffering experienced by persons is unique precisely because of their essential features.
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
Although there is a widespread support among U.S. physicians for proportionate palliative sedation, intentionally sedating dying patients to unconsciousness until death is neither the norm in clinical practice nor broadly supported for the treatment of primarily existential suffering.
Pour la première fois, le conseil national de l'Ordre des médecins a envisagé qu'un collège médical permette une "sédation terminale" pour des patients en fin de vie, réservée à des situations auxquelles la loi actuelle – la loi Leonetti de 2005 – ne donne pas de réponse. "Sur des requêtes persistantes, lucides et réitérées de la personne, atteinte d'une affection pour laquelle les soins curatifs sont devenus inopérants et les soins palliatifs instaurés, une décision médicale légitime doit être prise devant des situations cliniques exceptionnelles, sous réserve qu'elles soient identifiées comme telles, non pas par un seul praticien mais par une formation collégiale", estime l'Ordre dans un texte rendu public jeudi qui évoque "un devoir d'humanité" sans employer directement le terme d'euthanasie pour décrire cette assistance médicalisée pour mourir.