“Could You Help Me Die?”: On the Ethics of Researcher-Participant Relationship and the Limitations of Qualitative Research

Abstract

Qualitative research is beneficial for researchers and society, and even for the participants themselves. Yet, end-of-life qualitative research also entails unique challenges given the sensitive topic and questions relayed to the participants, and the participants’ requests of the researchers. This paper was written following ethical issues that arose while conducting in-depth interviews with Israeli members of the Swiss Dignitas Organization in 2019. The interviews enabled participants to air their thoughts on assisted suicide and gather information about related plans that were not available to the public due to various issues. Yet, during these interviews, I also found myself dealing with significant ethical dilemmas that I had not previously encountered, such as participants asking me to lie for them, or accompany them to Switzerland to fulfil their wishes. While the interviews served as a safe environment in which the participants could air their thoughts on the topic, they led me to reexamine the ethical limitations of qualitative research and the researcher-participant relationship (within and outside the research context). By analyzing three of these interviews, I attempted to answer the following research question: What do the ethics of qualitative research entail with regards to researcher-participant boundaries, as established in sensitive situations and that involve vulnerable populations in end-of-life situations? The analysis was conducted in line with the ethical mindfulness framework and combined theoretical analysis of the literature. My analysis indicates that while qualitative research encourages the establishing of a researcher-participant relationship through trust and rapport – especially on sensitive topics that involve vulnerable populations – the researcher must also ensure both participant and researcher safety, by establishing and maintaining boundaries, even post-research. Introspective ethical inquiry, triggered by participants, requires the researcher to be vulnerable, potentially resulting in emotional discomfort. It also mandates re-engaging with the participants on ethical meanings that stem from this process.

Ethics Beyond the Checklist: Fruitful Dilemmas Before, During, and After Data Collection

“…Even so, the knowledge to be gained from qualitative studies is important, and even complex and messy qualitative studies should be conducted (Ramcharan & Cutcliffe, 2001). In conducting these studies, it has been argued that researchers should continually address ethical dilemmas during the research process, something we have also argued in this article (Goncalves, 2020;Mishna et al, 2004;Sperling, 2022). In the three cases described above, we present different dilemmas in various parts of the research process in three different research projects focusing on three different parts of the population and from two different countries.…”

“…Similarly, Woodgate et al (2017) question whether it is appropriate to tell a youth living with anxiety that she is beautiful if she talks about despising her body; another decision a researcher would have to make instantly during a conversation. In yet another study, Sperling experienced being asked to engage in participants' plans to end their life by accompanying them to a country in which this is legal, something that could have posed a legal risk to himself (Sperling, 2022).…”

“…In this kind of situation, the ethical procedures that preceded data collection can be of little use. Woodgate et al (2017) thus encourage researchers to follow their “gut feelings” and work through ethical dilemmas through “sustaining mindful presence.” Similarly, Sperling (2022) suggests being guided through research through “ethical mindfulness” and, as argued by Pollock (2012), “[t]he greatest protection for participants in qualitative studies is for adequately skilled and experienced researchers to conduct and supervise research” (p. 9). Nevertheless, acting ethically on the spot can be difficult.…”

Dignity in Action in the Home Hospice: The Narrative Selection of a Multidisciplinary Staff

“…The study's purpose, interview format, confidentiality, recording, and right to withdraw were explained to participants in the initial meeting, repeated by the interviewer, and stated in the consent form. The unique challenges entailed in qualitative research on EOL (Sperling, 2022) underscore the special importance of an "ethical attitude" in the interviews (Josselson, 2013). This was pursued by the interviewer expressing empathy, containing complex feelings, being attentive to emotional difficulties, and being non-judgmental.…”

Picking the ‘proper hat?’ Emerging ethical dilemmas while juggling nursing and research roles

“…For instance, a definition is needed for critical ‘never events’ that force nurses to abandon their research tasks and intervene. Second, training programmes for nurse–researchers should embrace the ‘ethics‐as‐process framework’ rather than relying on an a priori ruling or judgement regarding research ethics (Johansen & Frederiksen, 2021; Sperling, in press). To this end, nurse–researchers need to acquire ethical mindfulness, emphasizing five skills: (a) noticing ‘ethically important moments’ in research rather than dismissing them as unimportant; (b) being prepared to accept feelings of discomfort in a given situation; (c) identifying what ethical considerations are relevant to academic research; (d) reflecting constantly on one's actions and role in the research process; and (e) challenging established research practices, critically assessing one's beliefs and attitudes about research, and responding to challenging situations with thoughtful ethical responses (Guillemin & Heggen, 2009).…”