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    Rights statement: The final, definitive version of this article has been published in the Journal, Palliative Medicine, 33 (8), 2019, © SAGE Publications Ltd, 2019 by SAGE Publications Ltd at the Palliative Medicine page: https://journals.sagepub.com/home/pmj on SAGE Journals Online: http://online.sagepub.com/

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Family members' experiences of assisted dying: A systematic literature review with thematic synthesis

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Family members' experiences of assisted dying : A systematic literature review with thematic synthesis. / Gamondi, Claudia; Fusi-Schmidhauser, Tanja; Oriani, Anna; Payne, Sheila; Preston, Nancy.

In: Palliative Medicine, Vol. 33, No. 8, 01.09.2019, p. 1091-1105.

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@article{881d2a60dad0408d9325aa5de9824785,
title = "Family members' experiences of assisted dying: A systematic literature review with thematic synthesis",
abstract = "BACKGROUND: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying.AIM: To systematically review family experiences of assisted dying.DESIGN: A systematic literature review using thematic synthesis.DATA SOURCES: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers.RESULTS: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying.CONCLUSION: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.",
author = "Claudia Gamondi and Tanja Fusi-Schmidhauser and Anna Oriani and Sheila Payne and Nancy Preston",
note = "The final, definitive version of this article has been published in the Journal, Palliative Medicine, 33 (8), 2019, {\circledC} SAGE Publications Ltd, 2019 by SAGE Publications Ltd at the Palliative Medicine page: https://journals.sagepub.com/home/pmj on SAGE Journals Online: http://online.sagepub.com/",
year = "2019",
month = "9",
day = "1",
doi = "10.1177/0269216319857630",
language = "English",
volume = "33",
pages = "1091--1105",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "SAGE Publications Ltd",
number = "8",

}

RIS

TY - JOUR

T1 - Family members' experiences of assisted dying

T2 - A systematic literature review with thematic synthesis

AU - Gamondi, Claudia

AU - Fusi-Schmidhauser, Tanja

AU - Oriani, Anna

AU - Payne, Sheila

AU - Preston, Nancy

N1 - The final, definitive version of this article has been published in the Journal, Palliative Medicine, 33 (8), 2019, © SAGE Publications Ltd, 2019 by SAGE Publications Ltd at the Palliative Medicine page: https://journals.sagepub.com/home/pmj on SAGE Journals Online: http://online.sagepub.com/

PY - 2019/9/1

Y1 - 2019/9/1

N2 - BACKGROUND: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying.AIM: To systematically review family experiences of assisted dying.DESIGN: A systematic literature review using thematic synthesis.DATA SOURCES: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers.RESULTS: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying.CONCLUSION: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.

AB - BACKGROUND: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying.AIM: To systematically review family experiences of assisted dying.DESIGN: A systematic literature review using thematic synthesis.DATA SOURCES: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers.RESULTS: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying.CONCLUSION: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.

U2 - 10.1177/0269216319857630

DO - 10.1177/0269216319857630

M3 - Journal article

C2 - 31244384

VL - 33

SP - 1091

EP - 1105

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 8

ER -