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      Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype? : “Eu-Euthanasia”: The Close Historical, and Evidently Synergistic, Relationship Between Palliative Care and Euthanasia in Belgium: An Interview With a Doctor Involved in the Early Development of Both and Two of His Successors

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          Abstract

          This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

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            Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review.

            The preferred and actual participation roles during decision making have been studied over the past two decades; however, there is a lack of evidence on the degree of match between patients' preferred and actual participation roles during decision making. A systematic review was carried out to identify published studies that examined preferred and actual participation roles and the match between preferred and actual roles in decision making among patients with cancer. PubMed (1966 to January 2009), PsycINFO (1967 to January 2009), and CINAHL (1982 to January 2009) databases were searched to access relevant medical, psychological, and nursing literature. Twenty-two studies involving patients with breast, prostate, colorectal, lung, gynecological, and other cancers showed discrepancies between preferred and actual roles in decision making. These groups of patients wanted a more shared or an active role versus a less passive role. Across all cancer types, patients wanted more participation than what actually occurred. Research to date documents a pervasive mismatch between patients' preferred and actual roles during decision making. Yet, there is lack of innovative interventions that can potentially increase matching of patients' preferred and actual role during decision making. Role preferences are dynamic and vary greatly during decision making, requiring regular clinical assessment to meet patients' expectations and improve satisfaction with treatment decisions.
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              End-of-life practices in the Netherlands under the Euthanasia Act.

              In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation. Copyright 2007 Massachusetts Medical Society.
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                Author and article information

                Contributors
                jan.bernheim@vub.ac.be
                Journal
                J Bioeth Inq
                J Bioeth Inq
                Journal of Bioethical Inquiry
                Springer Netherlands (Dordrecht )
                1176-7529
                1872-4353
                16 August 2014
                16 August 2014
                2014
                : 11
                : 507-529
                Affiliations
                [ ]End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Laarbeeklaan, 103, 1090 Brussels, Belgium
                [ ]Supportive and Palliative Care Department, UZ Brussel, Brussel, Belgium
                [ ]Federation Palliative Care Flanders, Vilvoorde, Belgium
                [ ]Royal Hobart Hospital, Southern Tasmania Health Organisation, and School of Medicine, Faculty of Health Sciences, University of Tasmania, Tasmania, Australia
                Article
                9554
                10.1007/s11673-014-9554-z
                4263821
                25124983
                001389b8-b42e-4c6f-8ed1-bdb1040294fa
                © Springer Science+Business Media Dordrecht 2014
                History
                : 16 June 2013
                : 10 April 2014
                Categories
                Original Research
                Custom metadata
                © Journal of Bioethical Inquiry Pty Ltd. 2014

                Ethics
                palliative care,euthanasia,death and dying,belgium
                Ethics
                palliative care, euthanasia, death and dying, belgium

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