Rights statement: This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 55, 4, 2018 DOI: 10.1016/j.jpainsymman.2017.12.482
Accepted author manuscript, 2.17 MB, PDF document
Available under license: CC BY-NC-ND: Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License
Final published version
Research output: Contribution to Journal/Magazine › Journal article › peer-review
<mark>Journal publication date</mark> | 04/2018 |
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<mark>Journal</mark> | Journal of Pain and Symptom Management |
Issue number | 4 |
Volume | 55 |
Number of pages | 10 |
Pages (from-to) | 1085-1094 |
Publication Status | Published |
Early online date | 27/12/17 |
<mark>Original language</mark> | English |
BACKGROUND: Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines.
OBJECTIVE: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland.
DESIGN: A cross-sectional qualitative interview study. Interpretation and analysis were performed using qualitative content analysis.
SETTING: The Italian and French speaking regions of Switzerland.
PARTICIPANTS/SETTING: Twenty-eight close relatives and family carers of eighteen patients who died by assisted suicide in Switzerland.
RESULTS: Family members perceived their involvement in assisted suicide as characterized by five phases; 1) Contemplation, 2) Gaining acceptance, 3) Gaining permission, 4) Organization and 5) Aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers.
CONCLUSIONS: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs.