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Experiences with counselling to people who wish to be able to self-determine the timing and manner of one’s own end of life: a qualitative in-depth interview study
  1. Martijn Hagens1,
  2. Marianne C Snijdewind2,3,
  3. Kirsten Evenblij1,
  4. Bregje D Onwuteaka-Philipsen1,
  5. H Roeline W Pasman1
  1. 1Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC–Location VUMC, Amsterdam, The Netherlands
  2. 2Department of Medical Humanities, Amsterdam Public Health Research Institute, Amsterdam UMC–Location AMC, Amsterdam, The Netherlands
  3. 3Department of Medical Ethics, Amsterdam Public Health Research Institute, Amsterdam UMC–Location VUMC, Amsterdam, The Netherlands
  1. Correspondence to Martijn Hagens, Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC–Location VUMC, Amsterdam 1081 HV, The Netherlands; m.hagens{at}amsterdamumc.nl; eol{at}vumc.nl

Abstract

Background In the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.

Aim This study explores the experiences with counselling that counselees receive(d) from counsellors facilitated by Foundation De Einder.

Methods Open coding and inductive analysis of in-depth interviews with 17 counselees.

Results Counselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.

Conclusion Having obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on (collecting) lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life.

  • suicide/assisted suicide
  • euthanasia
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors MH had the initial idea for this study, wrote the research protocol, performed the interviews and the analysis, and drafted the manuscript. MCS and KE performed the analysis, and contributed to the drafts of the manuscript. HRWP and BDOP commented on and contributed to the design, the analysis of the data and the final draft of the manuscript. All authors had access to all the data, can take responsibility for the integrity of the data and the accuracy of the data analysis and approved the final manuscript.

  • Funding This study was funded by Nederlandse Organisatie voor Wetenschappelijk Onderzoek (grant number: VICI 916.96.628).

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

  • Data availability statement Data are available upon request

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