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Original research
Double-edged MAiD death family legacy: a qualitative descriptive study
  1. Andrea N Frolic1,
  2. Marilyn Swinton2,
  3. Leslie Murray3 and
  4. Allyson Oliphant4
  1. 1Program for Ethics and Care Ecologies (PEaCE) and MAiD, Hamilton Health Sciences, Hamilton, Ontario, Canada
  2. 2Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada
  3. 3Medical Radiation Sciences, Mohawk College, Hamilton, Ontario, Canada
  4. 4Health and Rehabilitation Sciences, University of Western Ontario, London, Ontario, Canada
  1. Correspondence to Dr Andrea N Frolic, Program for Ethics and Care Ecologies (PEaCE) and MAiD, Hamilton Health Sciences, Hamilton, Ontario, Canada; frolic{at}hhsc.ca

Abstract

Background Individuals who accompany a loved one through medical assistance in dying (MAiD) have to live with the experience and the psychological, moral and social consequences of their involvement in the process long after the death occurs.

Aim To explore the legacy of a MAiD death for individuals who accompanied a loved one through the process.

Design Using a qualitative descriptive approach we conducted semi-structured interviews to collect data from family members who had accompanied a loved one through MAiD. Data were analysed using conventional content analysis.

Setting/participants 16 family members of 14 patients who received MAiD at a Canadian hospital with an interdisciplinary MAiD programme.

Results The main theme in the analysis is the opposing tensions experienced by individuals who accompany a loved one through a MAiD death, which we conceptualise as a double-edge experience. This double-edge experience is illustrated through four thematic opposing tensions: (1) support for patient autonomy and ambivalence about the MAiD choice, (2) gratitude for suffering relieved for loved one and grief for lost time with loved one, (3) time as a gift and time as a burden and (4) positive legacy and challenging bereavement experience.

Conclusion The nature of the MAiD experience for involved families is rooted in complexity, ambiguity and ambivalence and thus resists easy categorisation. Families would benefit from structured psychosocial and spiritual supports that acknowledge this complexity, along with MAiD-specific bereavement support following the death.

  • bereavement
  • end of life care
  • terminal care
  • service evaluation

https://doi.org/10.1136/bmjspcare-2020-002648

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    Footnotes

    • Contributors The design for the mixed-methods evaluation of the ADRAS program was developed by the research team (ANF, LM, MS and AO). Qualitative data were collected by MS and analysed by ANF, LM, MS and AO. The manuscript was drafted by ANF and MS. All authors contributed ideas and content to the manuscript and all authors approved the version to be published. Each author participated in the study enough to allow them to take public responsibility for parts of the manuscript. ANF will act as the guarantor of this manuscript.

    • Funding This work was funded by The Canadian Foundation for Healthcare Improvement.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval This research was approved by the Hamilton Integrated Research Ethics Board (Project Number 0772; approval date 22 October 2018). All participants provided written informed consent.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement No data are available. Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.