Ethical Communication in Sensitive Research Settings: The Case of Assisted Dying

Abstract One of the key ethical challenges for conducting research in sensitive settings entails (mis)use of language. Some expressions can invoke negative connotations, trigger trauma, or contribute to the stigma attached to marginalized or vulnerable populations. Thus, as researchers, we need to be careful and sensitive with our choice of words when communicating with participants as well as with our colleagues. Yet it is often unclear how to do so. In this paper, I reflect on ethical challenges that I encountered during the preliminary phase of my PhD thesis, which focuses on the issues of legalizing assisted dying in the United States. How can we communicate ethically about sensitive topics such as dying, suicide, and euthanasia? I propose that the Sensual Evaluation Instrument and other creative toolkits could be fruitful tools to help navigate sensitive topics with participants.

Author Keywords Assisted dying; creative toolkits; ethics; End-of-Life; sensitive research; vulnerable populations.

ACM Classification Keywords H.5.m. Information interfaces and presentation (e.g., HCI): Miscellaneous.

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Daisy Yoo University of Washington Seattle, WA 98105, USA dyoo@uw.edu Second Author VP, Authoring Authorship Holdings, Ltd. Awdur SA22 8PP, UK author2@author.ac.uk Third Author Fourth Author Lēkhaka Interaction Labs Bengaluru 560 080, India author3@anotherco.com author4@hci.anotherco.com

Fifth Author YetAnotherCo, Inc. Authorton, BC V6M 22P Canada author5@yetanotherco.ca Sixth Author Université de Auteur-Sud 40222 Auteur, France author6@author.fr Seventh Author Department of Skrywer, University of Umbhali, Cape Town, South Africa author7@umbhaliu.ac.za

Introduction One of the Internet’s most-read stories in 2014 was the People Magazine interview with Brittany Maynard, a terminally ill patient who announced to the world that she will die on November 1, 2014 on her own terms with dignity [3]. Diagnosed with terminal brain cancer and a prognosis of less than six months to live, Maynard decided to move from California, where she was born and raised, to Oregon, which was one of the few states in the United States that allowed patients to request doctors to assist in dying as an accessible medical option. During her last days, Maynard launched an online campaign to make assisted dying options accessible nationwide in the United States. Specifically, she urged legal reform in her home state of California. Maynard’s story went viral online including her late husband’s appearance on the Oprah Winfrey Show [8], creating a momentum among publics to engage in lively discussions around the issues of assisted dying. Given the strong public demand, California policymakers finally passed assisted dying legislation under Senate Bill (SB 128) End of Life Option Act in October 2015. By the end of 2016, 38 million people in California will live in a jurisdiction that allows access to physician’s aid in dying [1].

My PhD thesis investigates the roles of ICT for cultivating public dialogue and action around sensitive and controversial political issues. I ground my work in the context of end-of-life medical decision-making law, policy and practice. In particular, I focus on contemporary debates over the legalization of assisted-dying in the United States. While the topic in itself is imbued with much ethical debate (e.g., bioethics, religious ethics), in this paper I want to focus on more general research ethics about how to communicate

highly sensitive topics with participants as well as with our colleagues. Some expressions can invoke negative connotations, trigger trauma, or contribute to the stigma attached to marginalized or vulnerable populations. As researchers we need to be careful with our choice of words when conducting research in sensitive settings. Yet it is often unclear how to do so.

In this paper, I reflect on key ethical challenges that I encountered during the preliminary phase of my PhD thesis: How can we talk about sensitive and emotionally challenging topics such as dying, suicide, and euthanasia, in particular, with participants? I propose that the Sensual Evaluation Instrument [7] and other creative toolkits could be fruitful tools to help navigate sensitive topics with participants.

The Spectrum of Language In the early stage of my thesis, I soon came to realize how difficult it was to find an adequate term to describe my research topic in a sensitive manner. I was faced with a goldilocks dilemma to find an adequate term to define my research topic. Over time, I changed my project title twice. Initially, I phrased my topic in terms of physician assisted suicide (PAS), which is often used in the clinical field [2, 10]. However, while surveying the literature, I learned about increasing criticism around the term physician assisted suicide, primarily due to the stigma attached to the notion of suicide. The root of the taboo of suicide goes back a long history in many religions, ethics, and cultures. Thus overtime, the proponents of the right-to-die movement gradually moved away from the label of “suicide” and leaned toward the phrase “death with dignity” [5]. By the same token, none of the existing assisted dying legislation in the United States uses the word “suicide,”

Nuanced spectrum of end-of-life medical decision-making terminology

Advanced directives, living will, DNR (do-not-resuscitate) order, health care proxy

Non-treatment decisions, forgoing life-prolonging treatment, forgoing life-sustaining treatment, forgoing non-beneficial treatment, forgoing futile treatment

“Double effect,” continuous deep sedation (until death), terminal sedation, palliative sedation, intensified alleviation of symptoms with possible life-shortening effect, sedating pharmacotherapy

Suicide, rational suicide, botched suicide, patient deciding to end life by stopping eating and drinking

(list continues in the next page)

although technically the law is about legalizing the clinical practice of the so-called physician assisted suicide (PAS). Therefore, acknowledging the controversy, I started to use the phrase “end-of-life medical decision making” to describe my project. But soon enough I realized that this concept was now too broad. End-of-life medical options exist on a wide spectrum of ill-defined terms encompassing everything from advanced directives to “mercy killing” (see sidebar for more details). Hence (perhaps not finally) I have settled with the phrase “assisted dying,” which is often used as the umbrella term combining contemporary issues of (physician) assisted-suicide/death and euthanasia.

In my effort to find an adequate term for my thesis title, I learned how sensitive and nuanced language can be. But more importantly, I was faced with a question: How can I communicate about such sensitive, nuanced concepts with participants? In the following section I describe a design research method using the Sensual Evaluation Instrument [7] and other creative toolkits as tools to navigate sensitive topics.

Method: Creative Toolkits The goals of my design research method are three-fold: (a) to learn about people’s current experience with and understanding of assisted dying, in particular, focusing on related law and practice; (b) to identify stakeholders and key players associated with the law and practice; and (c) to understand how people communicate (if at all) about the issues of assisted dying—with whom and through what modes of communication.

Sample Selection Considering the sensitive and taboo nature of the research topic, I selected snowball sampling to gain access to potentially hidden populations [4]. Initially, I will focus on two major communities: medical care providers (e.g., physicians and staff at hospitals and palliative care) and NGOs (e.g., advocacy groups and activists with focus on assisted dying issues), recruited from the state of Washington area. Depending on the results of this initial study focused on medical care providers and NGOs, I anticipate conducting additional studies with other populations whom I consider to be more vulnerable (e.g., patients and families).

Procedure I propose to conduct an exploratory research study consisting of two main components: (1) a semi-structured interview; and (2) design activity. Research sessions will be conducted individually or in a small group as requested by the participants. Each session will last about 1.5 hours or a little longer.

The semi-structured interview will cover topics such as: What are people’s current experience with domestic law (i.e., Washington’s Death with Dignity Act) and related institutional policy and practices? Are there issues that they have shared and talked about with others? If so, with whom and through what modes of communication? If not, why? What made people hold back from talking about the issues?

Nuanced spectrum of End-of-life medical decision making terminology (continued)

Assisted dying, assisted death, aid-in-dying, hastened death, hastening of death, death with dignity, compassionate death

Physician assisted suicide, assisted suicide

“Winks and nods,” acts to hasten death that are not sanctioned by the law

Voluntary-euthanasia

Involuntary euthanasia, ending of life without an explicit request from the patient, mercy death

Mercy killing, killing, murder

Following the semi-structured interview, participants will be prompted to engage in a hands-on design activity using creative toolkits. Creative toolkits are collections of tangible elements conveniently organized for participatory modeling, visualization, or creative play, primarily to inform and inspire design teams [6]. While the semi-structured interview is an established method long used in social science, as Hanington and Bella [6] pointed out, “When prompted by traditional research methods such as questionnaires and interviews, people often find it challenging or uncomfortable to articulate and express their innermost feelings, thoughts, and desires” (p. 33). Creative toolkits can help mitigate this challenge by providing

alternative ways for individuals to project their abstract thoughts and feelings onto externalized, embodied objects, and then using these objects as a tangible reference point for conversation. As such, this design method allows participants to creatively express their thoughts, feelings, and other aspects of their life that are difficult to articulate using traditional means.

Specifically in the design study, participants will be prompted to express how they conceptualize assisted dying issues by using the Sensual Evaluation Instrument and other constructive toys (e.g., wooden peg dolls) (See Figure 1). Extra craft materials will be provided such as an inventory of images and words (e.g.,

Figure 1. Sensual Evaluation Instrument and constructive toys. Sensual Evaluation Instrument consists of eight hand-sized sculptures in various shapes from pointy edges to bulbous curves [7].

magazines), cardboard, papers, markers, scissors, and glue sticks. During the activity, the researcher will ask questions as follows:

§ When you hear the phrase end-of-life medical options, what things come to mind? Please use the Sensual Evaluation Instrument to show what [the issue identified in participant’s own words] feels like. Why did you choose this shape? What does it feel like?

§ Who are the important people, groups, or communities involved? If you like, please use constructive toys to represent the stakeholders/key players and label them.

§ Who else do you think would care about this issue and why? What values you do you think are at stake for each stakeholders/key players?

§ What are the relationships between these stakeholders/key players? Please make a drawing to show the relationships between them. In addition, please draw what information is being shared and via what medium.

§ Please write or enact a short scenario involving one of the key issues using your drawing and constructive toys. Use extra design materials as needed.

Reflection Although I have not yet conducted this design research, I have used design props in my previous work to communicate sensitive topics with vulnerable populations: the issues of genocide with Rwandans [11] and the issues of safety with homeless young people [9] to name a few. One thing I learned from the experience is the importance of the storytelling—its complexity and nuance—as well as the expressiveness of the artifact itself. For a robust qualitative analysis,

researchers should consider the artifacts and accompanying narratives holistically.

For example, in study [9], the sketches produced by homeless young people, while sometimes fantastical, demonstrated expressive depth. At the same time, the stories participants told about those sketches revealed a certain pragmatic intelligence, bringing forward vital needs, including the need to be heard and understood, the need to monitor the environment, the need to dispatch information through social networks, and the need for food, transportation, education, and safety. We believe, on balance, that the creative toolkits enabled homeless young people to express intimate concerns about their lives in a relatively playful and comfortable manner. Moreover, speculating, the fantastical aspects of the artifacts may have provided a degree of “distance” between the person and the entrenched issues of homelessness, related to basic needs, human dignity, and social justice. Accordingly, it may be the case that our method—with its creative and reflective aspects—was particularly well suited to surfacing the needs and values of participants in intimate or vulnerable situations.

Conclusion In this paper, I provided preliminary reflections on some of the ethical challenges I encountered in communicating my research on assisted dying. As researchers engaging with sensitive topics and vulnerable populations, it is crucial to cultivate sensitivity about the language we use around them. I call for researchers and designers to join the discussion about the ethics of communicating sensitive research, in particular, focusing on better research methods and

communication tools to engage with participants in intimate or vulnerable situations.

References 1. California Legislative Information. Senate Bill

No.128. 2015. Retrieved April 5, 2016 from https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201520160SB128

2. James A. Colbert, Joann Schulte, and Jonathan N. Adler. 2013. Physician-assisted suicide: polling results. New England Journal of Medicine 369 (11), 1450-1452.

3. Nicole W. Eagan. 2014. Terminally ill 29-year-old woman: why I'm choosing to die on my own terms. (6 December, 2014). Retrieved April 1, 2016 from http://www.people.com/article/Brittany-Maynard-death-with-dignity-compassion-choices

4. Leo A. Goodman. 1961. Snowball sampling. The Annals of Mathematical Statistics 32 (1), 148–70. http://www.jstor.org/stable/2237615

5. Neil M. Gorsuch. 2009. The Future of Assisted Suicide and Euthanasia. Princeton University Press.

6. Bruce Hanington and Bella Martin. 2012. Universal Methods of Design: 100 Ways to Research Complex Problems, Develop Innovative Ideas, and Design Effective Solutions. Rockport Publishers.

7. Katherine Isbister, Kristina Höök, Michael Sharp, and Jarmo Laaksolahti. (2006). The sensual evaluation instrument: developing an affective evaluation tool. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '06), 1163–1172. http://doi.acm.org/10.1145/1124772.1124946

8. OWN. 2015. How Brittany Maynard Found Peace of Mind in Oregon | Where Are They Now?. Video. (16 March, 2015). Retrieved April 1, 2016 from https://www.youtube.com/watch?v=K_MKfSxGouI

9. Daisy Yoo, Alina Huldtgren, Jill Palzkill Woelfer, David G. Hendry, and Batya Friedman. 2013. A value sensitive action-reflection model: evolving a co-design space with stakeholder and designer prompts. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13), 419-428. http://doi.acm.org/10.1145/2470654.2470715

10. Daisy Yoo. 2015. Designing with emerging publics: the case of physician-assisted suicide. In Proceedings of the 33rd Annual ACM Conference Extended Abstracts on Human Factors in Computing Systems (CHI EA '15), 243-246. http://doi.acm.org/10.1145/2702613.2702616

11. Daisy Yoo, Katie Derthick, Shaghayegh Ghassemian, Jean Hakizimana, Brian Gill, and Batya Friedman. 2016. Multi-lifespan design thinking: two methods and a case study with the Rwandan diaspora. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '16) (in press).