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      Voluntary Stopping of Eating and Drinking in Switzerland From Different Points of View: Protocol for a Mixed-Methods Study

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          Abstract

          Background

          “To die with dignity” has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. "Voluntary stopping of eating and drinking" (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study.

          Objective

          The objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds.

          Methods

          This protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds.

          Results

          The enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019.

          Conclusions

          The results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED.

          International Registered Report Identifier (IRRID)

          DERR1-10.2196/10358

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          Most cited references38

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          Nurses' experiences with hospice patients who refuse food and fluids to hasten death.

          Voluntary refusal of food and fluids has been proposed as an alternative to physician-assisted suicide for terminally ill patients who wish to hasten death. There are few reports of patients who have made this choice. We mailed a questionnaire to all nurses employed by hospice programs in Oregon and analyzed the results. Of 429 eligible nurses, 307 (72 percent) returned the questionnaire, and 102 of the respondents (33 percent) reported that in the previous four years they had cared for a patient who deliberately hastened death by voluntary refusal of food and fluids. Nurses reported that patients chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8. On the basis of the hospice nurses' reports, the patients who stopped eating and drinking were older than 55 patients who died by physician-assisted suicide (74 vs. 64 years of age, P<0.001), less likely to want to control the circumstances of their death (P<0.001), and less likely to be evaluated by a mental health professional (9 percent vs. 45 percent, P<0.001). On the basis of reports by nurses, patients in hospice care who voluntarily choose to refuse food and fluids are elderly, no longer find meaning in living, and usually die a "good" death within two weeks after stopping food and fluids. Copyright 2003 Massachusetts Medical Society
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            Voluntary stopping of eating and drinking at the end of life – a ‘systematic search and review’ giving insight into an option of hastening death in capacitated adults at the end of life

            Background The terminally ill person’s autonomy and control are important in preserving the quality of life in situations of unbearable suffering. Voluntary stopping of eating and drinking (VSED) at the end of life has been discussed over the past 20 years as one possibility of hastening death. This article presents a ‘systematic search and review’ of published literature concerned with VSED as an option of hastening death at the end of life by adults with decision-making capacity. Methods Electronic databases PubMed, EBSCOhost CINAHL and Ovid PsycINFO were systematically searched. Additionally, Google Scholar was searched and reference lists of included articles were checked. Data of the included studies were extracted, evaluated and summarized in narrative form. Results Overall, out of 29 eligible articles 16 were included in this review. VSED can be defined as an action by a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death because of the persistence of unacceptable suffering. An estimated number of deaths by VSED was only provided by one study from the Netherlands, which revealed a prevalence of 2.1% of deaths/year (on average 2800 deaths/year). Main reasons for patients hastening death by VSED are: readiness to die, life perceived as being pointless, poor quality of life, a desire to die at home, and the wish to control the circumstances of death. The physiological processes occurring during VSED and the supportive care interventions could not be identified through our search. Conclusions The included articles provide marginal insight into VSED for hastening death. Research is needed in the field of theory-building and should be based on qualitative studies from different perspectives (patient, family members, and healthcare workers) about physiological processes during VSED, and about the prevalence and magnitude of VSED. Based on these findings supportive care interventions for patients and family members and recommendations for healthcare staff should be developed and tested.
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              A good death. An important aim for health services and for us all.

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                Author and article information

                Contributors
                Journal
                JMIR Res Protoc
                JMIR Res Protoc
                ResProt
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                1929-0748
                December 2018
                21 December 2018
                : 7
                : 12
                : e10358
                Affiliations
                [1 ] Department of Nursing Science Faculty of Health University Witten/Herdecke Witten Germany
                [2 ] Institute of Nursing School of Health Professions Zurich University of Applied Sciences Winterthur Switzerland
                [3 ] Palliative Centre St Gallen Cantonal Hospital St Gallen St Gallen Switzerland
                Author notes
                Corresponding Author: Sabrina Stängle sabrina.staengle@ 123456zhaw.ch
                Author information
                http://orcid.org/0000-0003-1664-8824
                http://orcid.org/0000-0001-7856-7224
                http://orcid.org/0000-0003-4477-3163
                http://orcid.org/0000-0001-9922-663X
                http://orcid.org/0000-0003-4950-7788
                Article
                v7i12e10358
                10.2196/10358
                6320426
                30578180
                527e2a66-5f6e-4db1-8987-968c85bb8428
                ©Sabrina Stängle, Wilfried Schnepp, Mirjam Mezger, Daniel Büche, André Fringer. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 21.12.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org.as well as this copyright and license information must be included.

                History
                : 9 March 2018
                : 9 July 2018
                : 31 July 2018
                : 31 August 2018
                Categories
                Protocol
                Protocol

                voluntary stopping of eating and drinking,project protocol,questionnaire,cross-sectional study,focus group interviews,explorative descriptive qualitative research,practical recommendation,palliative care

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