Exploring Medical Assistance in Dying (MAiD)-Related Grief and Bereavement Through Virtual Digital Storytelling Workshops

Abstract

The purpose of this digital storytelling project, conducted entirely in virtual spaces, was to contribute to an enhanced understanding of the experience of family and friends who have accompanied someone who chose to access medical assistance in dying (MAiD) through the creation of digital stories. Participants were recruited through two MAiD-specific support networks, Bridge C-14 and MAID Family Support Society, and represented three Canadian provinces: Alberta, British Columbia, and Ontario. Analysis of the data identified three main themes and several sub-themes. These were understood within the contexts of two overarching categories: MAiD-specific grief and bereavement factors and elements of digital storytelling workshops conducted solely in virtual spaces. The three main themes identified were: (1) motivation for sharing digital stories; (2) the emotional and technological preparedness for the virtual digital storytelling workshops; and (3) the transformative possibilities for both creator and audience of the stories. MAiD-bereaved digital storytellers in this study wanted to create authentic stories about their person who chose MAiD and wished to do so within spaces that provided the appropriate amount of emotional and technological support. This combination was understood to be integral to participants’ ultimate goal: the production of stories that would ideally garner understanding and empathy and provide education in the face of falsehoods and disinformation about MAiD.

Introduction

Medical assistance in dying (MAiD) has changed the opportunities and options available to Canadians at the end of life. The purpose of this digital storytelling project, conducted entirely in virtual spaces, was to contribute to an enhanced understanding of the experience of family and friends who have accompanied someone who chose to access MAiD through the creation of digital stories. Since MAiD in Canada is continually under examination, it is necessary to develop an understanding of its impact on those most intimately involved. To date, little is known of the legislation’s impact on friends and family members of eligible Canadians who access MAiD.

The objectives of the project were to: (1) Acquire a deeper understanding of Canadians who are intimately impacted by MAiD, specifically family and friends of those who request and access MAiD care; (2) Learn about participants’ experiences creating digital stories and following the creation of the stories learn more about how participants use and share them. Digital story creation methods were used to mobilise this new knowledge and share with a wider audience. These methods offered rich data and provided the research team an opportunity to examine the unique experiences of MAiD in a way that has not yet been captured.

MAiD-Related Grief and Bereavement

More than 320,000 people died in Canada in 2023 (Statistics Canada, 2023), and 15,300 of those deaths - about one in 20 or 4.7% - were medically assisted (Fifth Annual Report on Medical Assistance in Dying (MAiD) in Government of Canada, 2023). The number of MAiD provisions in 2023 represents a 15.8% increase over 2022 (Fifth Annual Report, 2023). As the legislation evolves, there is a need to learn more about the unique needs of those grieving a medically assisted death to provide appropriate supports.

In Canada, grief literacy rates are far lower than the ideal, which counters the notion that death and dying should be housed within clinical and institutional contexts (Breen et al., 2022). MAiD-specific grief and bereavement rates, reasonably, follow this pattern and would also benefit from community-based practices and conversations about dying, death, and loss that serve to raise death and grief literacy rates at large (Breen et al., 2022). While the grief experience is unique to the individual and based on myriad contexts, grieving a medically assisted death can involve particular factors and, as such, requires specialised forms of support (Frolic et al., 2020; Serota et al., 2023, 2024). In their scoping review, Yan et al. (2022) highlight concepts that impact the grief and bereavement of family and friends of someone who chooses MAiD, including relationships between family and friends; aspects of MAiD grief, e.g., secrecy and anticipatory grief; and the aftereffects of a MAiD-related journey. In addition, there is also the issue of both geographical and societal isolation in grief and bereavement experiences as MAiD deaths are less common, can be stigmatized and met with judgement (Frolic et al., 2020; Serota et al., 2023; Thangarasa et al., 2021) and/or may result in a struggle to identify and obtain what help, anticipatorily and after the death, is needed (Smolej et al., 2023).

Digital Storytelling

Digital storytelling is widely attributed to Joe Lambert and the late Dana Atchley, at the Center for Digital Storytelling in Berkeley, CA, who, in the last decade of the 20th century, sought to democratise experiences of media creation (StoryCenter, 2022). Digital stories are usually 3–5 minutes in length, have a first-person narrative, and may use still and/or moving images, music, or sound effects to tell a story about a person, event, or issue (Lambert, 2009). In keeping with the original commitment to the democratisation of media experiences, the creation of a digital story does not require cost-prohibitive production tools such as software and equipment, nor is a digital story producible only with expert knowledge. As such, digital stories often allow unheard voices to be heard (LaMarre & Rice, 2016; Wexler et al., 2013), using computational power that overcomes geographical and financial challenges to facilitate human contact (Hartley & McWilliam, 2009). Although there are suggested guidelines and protocols, inclusive of seven elements and a Story Circle component at the outset to float ideas, there is no fixed curriculum involved in the model of digital storytelling at the Story Center; this approach emphasises the autonomy of the storyteller, which contributes to an empowering experience for the creator (Juppi, 2017; Wexler et al., 2013), and potentially a transformative one for both creator and viewer (Alexandra, 2008; Durant & Kortes-Miller, 2023). Some evidence suggests that while a digital storytelling workshop culminates in a product—the digital story itself—it is the process of creating one that is of more value to the participant (Juppi, 2017). However, it is understandable that the dissemination of the stories could be integral to the study (Lenette et al., 2019).

Digital Storytelling and Grief

Storytelling in grief and bereavement explorations is understood to be integral to sensemaking (Gilbert, 2002), catharsis (Bosticco & Thompson, 2005), continuing bonds with the deceased (Valentine, 2008), and meaning making when processing a loss (Gillies & Neimeyer, 2006). Making meaning of the loss experience is believed to be relevant as it is the process by which the bereaved person begins to accept, navigate, and attempt to make sense of their loss (Supiano, 2019). Digital stories are understood, too, to be of particular use in areas of difficult and/or life-altering human experiences (Alexandra, 2008; Gubrium et al., 2014; LaMarre & Rice, 2016; Laing et al., 2019). Digital storytelling as a meaning-making and empowering bereavement tool also allows for potential explorations of continued bonds with the deceased, addressing unfinished or unsettled business and benefit sense making (Robiecki et al., 2021). While not necessarily a therapy-specific tool, digital storytelling is identified as a therapeutic intervention in both palliative care (Akard et al., 2015) and grief and bereavement work (de Jager et al., 2017).

Digital Storytelling Workshops Conducted Virtually

In virtual spaces, where participants’ prowess and experience with technology can vary, the potential of technological vulnerability arises. Access to a computer or laptop and basic competency to use a specific software platform are the only requirements to make a digital story. However, basic competency is a highly subjective term and how workshop facilitators support participants in real space versus in virtual space differs greatly. Traditionally, digital storytelling workshops are conducted in person, with eight to 12 participants, over the course of several consecutive days, with facilitators supporting the creative process and technological aspects (Lal et al., 2015). Digital storytelling embraces the autonomy of its digital story creator, with the facilitator lending insight and support as and when needed but in no way taking ownership of either content or aesthetic choices (Gladstone & Stasiulis, 2019; de Jager et al., 2017; Wu & Chen, 2020). Virtual synchronous or asynchronous support can look very different, with the possibility of blurred boundaries in terms of technological support, in particular. When digital storytelling is moved into online spaces, then, its format does not necessarily change, but one of its tenets is potentially compromised to accommodate the needs of a virtual approach.

Methods

Study Design

An explorative qualitative study design was chosen as this afforded an in-depth examination of MAiD-specific grief and bereavement factors explored through elements of digital storytelling workshops conducted solely in virtual spaces. The purpose of this digital storytelling project, conducted entirely in virtual spaces, was to contribute to an enhanced understanding of the experience of family and friends who have accompanied someone who chose to access MAiD through the creation of digital stories. The study was conducted over the course of seven months. A social constructivist framework (Charmaz, 2006) was used, focussing on the individual experience and the meaning participants attach to it. The research team also paid attention to the social and political influences of systems, relationships, social interactions, legislation and policy (Durant & Kortes-Miller, 2020).

Participants

Digital stories were co-created with 13 individuals from the provinces of Ontario, Alberta, and British Columbia. Participant eligibility criteria included Canadians at least 18 years of age who identified themselves as friends or family members who supported someone throughout their experience with MAiD. Participants also needed access to technology in the form of a desktop or laptop computer to use the associated software. This was confirmed through the completion of a demographic survey and pre-workshop interview. Participants were recruited with assistance from two community-based and virtual MAiD support groups with whom the research team has relationships and done previous work, Bridge C-14 and MAID Family Support Society. The first workshop, with recruitment assistance from Bridge C-14, had six participants and the second, aligned with MAID Family Support Society, had seven participants. Both support groups shared information about the digital storytelling research project through their networks, social media, and using purposeful sampling. Interested potential participants contacted the research team and the team ascertained their eligibility during a pre-workshop telephone conversation. Participants ranged in age from 35 to 76; 12 participants identified as female, and one identified as non-binary. As per Stelzer et al. (2019), the team did not anticipate any notable differences in grief explorations based on gender.

Participants had differing relationships with the person who accessed MAiD; one participant supported a friend, four participants supported a parent, and eight supported a spouse. Time since the death of the friend or family member varied among participants, ranging from a few months to years since the death. In keeping with multiple perspectives regarding pathologising grief and its inclusion in the DSM-5 (Bergsmark & Ramsing, 2023; Brinkmann, 2023), the research team were intentional in considering that participants were already associated with a MAiD-specific grief and bereavement support and that they felt that, while the project would be difficult on myriad levels, creating a digital story was a part of their grieving experience as it would contribute to making meaning of the loss (Neimeyer & Sands, 2011).

The Workshop Facilitators

In addition to the research team, four digital storytelling creation specialists were involved in the workshop facilitation. This high ratio of facilitator to participant support allowed for a tailor-made experience, with participants afforded both technological and psychosocial support. The workshop facilitators each brought expertise and knowledge in their field. The digital storytelling specialists had extensive experiential and instructional backgrounds, including facilitation of workshops with participants in challenging contexts (e.g., people living with cancer; people living with rare, life-limiting diseases; using digital storytelling in healthcare settings). Research team members brought years of MAiD-focussed qualitative research, social work knowledge with skill specifically in grief and bereavement, and personal experience with digital storytelling. While the project format was collaborative, the storyteller (participant) ultimately determined the process and final product within the parameters afforded by virtual digital storytelling procedures. As is the case with in-person digital story creation, storytellers tell a story only they can authentically tell (Lambert, 2009); this proprietary status naturally precludes that the storyteller is the sole owner of their story, at liberty to do what they wish with it in the short and longer terms.

The Workshop Process

Each of the two workshops was initially scheduled to meet one evening per week for 3 hours over the course of five consecutive weeks. In between the group sessions, opportunities for one-to-one co-working were possible. Facilitators debriefed after each session for approximately half an hour to both understand the emotional and technological needs of the participants and in support of the facilitation team itself. The workshop schedule was shared and discussed with participants during the first session and was as follows:

Workshop Format*

Week one	Introduction to DST
Week two	Story circle
Week three	Co-working
Week four	Co-working
Week five	Virtual screening of completed stories / Co-working (Workshop 2)
Week six	Virtual screening of completed stories (Workshop 2)

*In response to feedback given that storytellers needed more creation time, Workshop 2 with MAiD Family Support Society ran over the course of six weeks, with Week Five comprising another creation session.

Collaborative dyads, one participant and one facilitator, were established after the first session. These teams reflected initial personal connections, geography, and time zones. Those deemed in need of additional technological support were paired with one of the three digital storytelling specialists. Collaborative teams connected via telephone, email, and Zoom, based on participant preference, in the days between each session to bolster the creative process and technological navigation. In addition, participants who appeared in need of psychosocial support were identified in facilitator debriefings and contacted by appropriate team members.

Data Collection

Workshops were completed in spring 2024. The RPL conducted follow-up interviews between July and September of that year with 12 of the 13 participants regarding their experiences with digital story creation. One participant did not respond to the request. Interviews used a semi-structured format and were conducted via Zoom, ranging in length from 10 to 51 minutes. The questions for the participant interviews included:

• Have you watched your digital story since the workshop ended?

• How has your thinking or feeling about your story changed at all since our last session?

• Have you shared your story with anyone else?

• Do you have any plans for sharing your story in the future?

• Now that some time has passed since the digital story creation workshops, is there anything you would like the research team to know about your experiences?

• Would you recommend the digital storytelling workshop process to another person who accompanied someone who used MAiD at the end of their lives?

Data Analysis

Data analysis was conducted by the primary investigator and the research project lead (PI and RPL). Interviews were recorded, with the consent of the participants, using Zoom and transcribed using Otter.ai software. The transcripts were then manually reviewed for accuracy. The transcripts and field notes were analysed using an inductive thematic analysis approach (Braun & Clarke, 2020), a process that entails engagement with the raw data and results in the identification of themes. The PI and RPL became familiarised with the data and initial codes were generated, exemplified through specific quotations from the interviews. All coding was reviewed to ensure agreement and accuracy. Next, through a collaborative analysis process, generation of initial themes occurred. Finally, these themes were reviewed to culminate in three interconnected themes.

Ethical Approval, Informed Consent, and Trustworthiness

The research study was approved by the Research Ethics Board at Lakehead University [# 1470168]. All participants received verbal and written information about the study and gave their written consent to participate. Participants were also reminded of their right to withdraw at any time. As the project involved sharing personal perceptions and experiences surrounding mortality, it was understood that there might be intense emotions shared during the workshops; plans for follow-up with the social workers on the research team or outside supports were made, if necessary, outlined in a separate document that was provided to all participants. All data and quotes were anonymised. Strategies were used to ensure trustworthiness of results (Lincoln & Guba, 1985). Data analysis was conducted by researchers from differing multidisciplinary backgrounds (education and social work); in addition, memos and exemplifying quotes were used to increase dependability.

Findings

Findings were understood within the contexts of two overarching categories: MAiD-specific grief and bereavement factors and elements of digital storytelling workshops conducted solely in virtual spaces. Three main interconnected themes were identified: (1) motivation for sharing digital stories; (2) the emotional and technological preparedness for the virtual digital storytelling workshops; and (3) the transformative possibilities for both creator and audience of the stories. Within each main theme, three sub-themes were identified. Individually and collectively these themes and subthemes offer an understanding of the experiences of those grieving a medically assisted death; in particular, the themes and subthemes can be explored to ascertain to what extent digital storytelling workshops conducted virtually address and support these experiences.

Motivation for Sharing Digital Stories

The first sub-theme was identified as an initial hesitancy of the participants to share their digital stories, for several reasons. Participants were unanimous that they had viewed their story, at least once, since the end of the workshops, as well as stating that their thinking or feeling regarding their story had not significantly changed in the time since the last session. The latter responses were primarily consistent with concerns around artistic choices (e.g., the most appropriate photograph or piece of music to convey a feeling) and self-perceived lack of technical polish regarding the quality of the digital story. This was identified by several participants as linked to issues of perfectionism and wanting to honour their person who had died with the best story possible, with one stating simply:

My work that I did with making the digital story was in service of honouring [their spouse].

However, participants who were concerned about their perceptions of quality agreed that they were able to accept any flaws because of the story’s overall value. One shared that,

Watching it afterwards, I suppose with a little more critical eye, you know, wish I had said this or done this or phrased it differently, or something like that. But then once that phase was done, then I found I’m just loving having that story being out there in the world. And so, it’s been a process of living with the story in its form as it is at the moment.

Every participant had shared their story with others at the time of the interview, but initial hesitancy to do so was not directly linked to artistic merit or technical prowess. Several participants felt vulnerable about sharing their stories because of potential negative response to their content:

It was scary. I remember when I first sent it to two people, I was nervous. I would check the phone. I’m like, what do they think? What are they thinking? I would just get very nervous. And I don’t know why I was nervous. I was nervous of everything. I was nervous of being judged. I was nervous of what they’ll think of me now that they know this about me, because I almost had this feeling where, because we went through MAiD, so naturally now I’m a MAiD supporter.

Concerns for how the story might be received by audiences had participants intentionally choosing whether or not they were present for the viewing with the chosen audience:

I have been present, and that what’s made me think, ‘You know, I’ll just send it to you.’ Because one girl broke down sobbing. And that’s hard on me, and it’s hard on her. So I just felt safer for everybody to look at it alone.

For most participants, virtual sharing was the best option, for both psychosocial and geographical reasons. Participants shared the need to make themselves vulnerable to sharing to realise the story’s underlying purpose of helping others understand their first-hand, authentic experience:

You’re both opening yourself up when you share your story but also trying to … give people the most amount of information as possible.

In addition, some participants were surprised by this initial hesitancy to put their story out for viewing by others. One participant realised that this was the antithesis of their usual response:

I am normally quite open about stuff like this. But for some reason, it took me a couple of weeks to be able to get to the point where I was comfortable putting that out there. And I don’t know why that was, I still haven’t figured that out, why that was, but I got over that. I feel quite proud of what I created, and really just appreciate this version of sharing that kind of experience of mine.

Finally, a participant shared that it was also a question of letting go to make their story available to others, and that this was a measured process:

It’s very precious to me. At first, I shared it very sparingly, with just my sort of nearest and dearest. Just recently, I actually shared it with all of my friends on Facebook, because as much as it’s precious, I think that its value really comes in the sharing.

The second sub-theme was identified as participants showed thoughtful and purposeful intentions behind how and with whom they shared their digital stories. A few participants had shared their story at structured events organised by hospices, dying and death, and grief and bereavement support groups, notably Bridge C-14, MAID Family Support Society, and Dying with Dignity Canada. For the most part, participants shared with family and friend circles, for some to mark a significant and specific date:

I put the video on Facebook on the third anniversary of his passing.

For others, sharing captured an element of their MAiD experience and sparked a familial conversation, allowing for a more value-added recollection of a poignant moment:

I’ve shared it with my four siblings who were there when my dad died with me. It kind of got into a conversation about one element of something we remembered from a conversation where we remembered it differently. I think it was the day he died. So, it was nice to have that conversation as opposed to them just going, ‘Oh, that was nice. Thank you for sharing.’ It was nice just to sort of go back and revisit the shared experience.

Overwhelmingly, participants agreed that they had had to navigate objections and misconceptions around both the legislation and procedures of MAiD. Many participants’ intentions were directly aligned with the desire to substantiate truths about MAiD, to face pushback or backlash:

Anything to do with MAiD if someone asked I sort of automatically say yes, because my husband had asked me to do that, in part because [my husband] wanted me to spread the story about MAiD to take away the stigma.

This was also the case for one participant who wished to refute blatant disinformation they had encountered:

I’ve shared it with a friend who is a conspiracy theorist and has heard a number of myths around MAiD. So, it helps dispel some of the myths that are out there. The myth that prompted me to share it was the one about medication. I don’t know if you’ve seen that where they say the first medication causes the person to drown.

Participants agreed that consideration for the story’s potential impact was important, with this participant reflecting on their experience:

When sharing it with people who were part of the story, I guess I need to be a bit more conscious of the fact that it’s quite impactful. The first couple of times I showed it, I wasn’t thinking about that. I was just thinking about this artistry that I made, not the impact it was going to have on them. And so, when I shared it with my daughter and son-in-law, they were quite upset. And then I felt bad. I should have prepared them more, this isn’t an uplifting kind of thing, I mean, it is in a sense but for them it was going to be quite impactful.

The third sub-theme was identified as a yearning felt by participants to ascertain how and where next to share their stories. The digital storytelling project did offer participants the opportunity to speak about their experiences in the workshops which culminated in two episodes about MAiD and digital storytelling featured on the podcast, Disrupting Death: Conversations about Medical Assistance in Dying (MAiD). These episodes were aired and their contents curated and posted, inclusive of participants’ digital stories, on the podcast’s corresponding website’ disruptingdeath.ca. Podcasts as a platform for knowledge translation have recently been effectively used in digital storytelling to amplify participants’ voices (Billman et al., 2024). However, once family and friends had seen the stories through this dissemination, participants shared that finding other appropriate audiences for their story was difficult. Several participants were frustrated about how to move forward:

I don’t know what else to do with it. There wasn’t a moment where [the lead facilitator] said, ‘Here’s 10 great resources that I think you should go to and you could share your story if you choose to.’ It’s great, we all loved it, I love the sharing …but I don’t know what to do with it.

One participant felt that one intended audience was at risk of missing out:

I think this education needs to land in the offices of doctors and providers, not just providers, but doctors need to know how people feel about MAiD. Why it’s so important to provide that care.

Several participants stated that this missing piece needed to be included in the workshops, instrumented by the research team and facilitators:

I had expected there to be a bigger platform for it to be shared. I had expected that we were part of something that was being brought forward to be shared broadly and not that it would fall on individuals to kind of self-market, because that’s onerous, right? It takes a lot to put yourself out there in that way. So, from my point of view, the knowledge, especially the knowledge about something that’s current like this, needs a mechanism of distribution.

On the other hand, there were instances where participants had very clear ideas of where to go next with their stories. These were, in every case, linked to the participants’ work and appeared to speak to an opportunity to bridge a perceived gap:

I want to use it within my faith community around specifically a conversation about MAiD just so that we have that conversation happening in a broader context than the one-on-one conversations that happen oftentimes between ministers and parishioners.

Emotional and Technological Preparedness

The first sub-theme was identified as the issue of logistics regarding the digital storytelling workshops delivered virtually. With the exception of one participant, every storyteller struggled, to some extent, with the technical components of putting their story together. This appeared to be less linked to age/stage of life and more related to skills used in professional spaces. For some participants, the struggle was connected to the aforementioned strive for perfection:

I felt like we were all putting so much pressure on ourselves to make this perfect.

This was echoed by another participant, and reinforced the weight of honouring the person who had chosen MAiD:

The technical part was so difficult, and you have such pressure. I put pressure on myself to make it something worthy of him.

Most participants agreed that the technical demands were accompanied by emotional challenges, compounding the perceived steep learning curve:

There’s learning to use the software, there’s sort of different skills that you have to learn. At the same time, it was really more while doing all that, you were trying to work through the emotions. That was a really tricky one, I think. I knew what we were doing, sure everything was explained very clearly. I didn’t know the impact or the effect it would have on me internally. So that is more of a personal challenge and an internal challenge that I had to figure out.

Navigating these complexities were further complicated by key elements such as timing and storyteller expectations that participants felt were missing that should be considered in future workshops. Several participants suggested that an understanding of time estimates for each session and for what needed to occur in between would have been helpful:

I think what I would have liked to have had in the beginning was a clear understanding of the time commitment. I think we were told we’re going to do it in four parts but wasn’t aware that there was also going to be, if you will, homework that needed to be done outside of the sessions that we have. So, a little bit clearer on the time commitment, I think, would have been good.

Others also felt that a stand-alone file that participants could access during the span of the workshops would be valuable, as all but one shared that the pace of the workshops was very fast:

I think maybe a little bit more insight into the editing process that’s involved, even, you know, during putting together the project, maybe a tutorial or something.

And another echoed this sentiment:

Once we started putting the story together … maybe if there was a little How To video for some of us that aren’t really tech savvy.

Most participants struggled with the technology to some degree; this, compounded by the experience being explored, contributed to a high need for both emotional and technical support, the second sub-theme. This support was realised in group sessions as well as on a one-to-one basis, and was considered, in some instances, essential:

I think in the learning process if we hadn’t had technical support, it would have been impossible.

The notion of support was also integral for three participants who considered leaving the project before their story came to fruition. These individuals shared their reluctance to continue with their respective facilitator and chose to remain, with additional technical and psychosocial supports in place. Participants identified that they appreciated the validation they received and persevered:

I struggled mightily with sort of every stage of the project. And there were a few times that, well, two or three times, that I tried to withdraw … but I felt supported, I felt that my feelings were validated, my feelings of fear of doing the project. And, you know, the pain that was associated with that.

Many offered advice to potential participants in a similar workshop situation. One participant who remained to finish their story wanted others to understand the strength in asking for support:

When you’re offered assistance, reach out and take it. Don’t feel like you should be able to do it on your own. It’s not an easy process and take all the help you can and ask for all the help you need from the team.

And another participant emphasised that support from the team can come along with support from other workshop participants:

Let them know. It’s hard, but it’s worth it. You will have a lot of support [from the team] and from each other, it’s so lovely. It was a wonderful experience. Really. And it’s hard.

However, of note was one participant’s perception of ensuring that while support is available and accessed, autonomy is also of value when seeking to tell one’s own story:

The balance between guidance and freedom, the balance between it being an authentic story that the person has created as opposed to a massaged story that the organiser created. So you want the authentic story, it really is a lot of work to get there.

Overall, participants agreed that the process, while very challenging, both emotionally and technologically, was unquestionably a valuable and worthwhile endeavour.

The third sub-theme was identified as the experience of narrowing the grief focus during the span of the workshops. Regardless of time that had elapsed, participants were asked to narrow their focus for their story to the weeks and days prior to the death of their person who chose MAiD. This intensive focus heightened emotional experiences for participants, in unexpected, desired, yet difficult ways. Participants varied in their perceptions of when the appropriate time might be to embark on a digital storytelling workshop. For one participant, the timing was appropriate because it was understood to be cathartic at that point for them:

People need time. I was coming up to my second year … by the second year, it actually was a helpful piece of the journey, the healing journey.

This was echoed by another participant, who shared that processing MAiD-specific grief was cathartic:

I think it was a way to process grief differently. It was a way to process a very specific type of grief of a scheduled death … to be able to process grief within a creative digital story format was so profound for me.

As every grief experience differs, another participant felt that the timing was appropriate because they, too, sought catharsis, and had perhaps waited for the right opportunity:

I think if I met you guys in the first three years, I don’t think I could have done it, I would have dropped out (in the) second week. But it’s five years, and maybe somewhere deep down I was craving the opportunity to have a safe space to talk about the story to people who actually, like, it’s relevant to them.

Many participants shared that being involved in the digital storytelling process meant revisiting their grief. This was, at times, very hard, and meant questioning for themselves whether the workshop experience was worth pursuing. For one participant, who had considered leaving the project, the emotional challenges of revisiting grief were balanced by workshop’s end:

I’m really glad I hung in with it. The first three sessions at least I thought, I can’t continue, I don’t want to continue with this … it felt like I had not moved on very much at all from the grief, felt like being plunged back into it.

Another participant agreed that the emotional challenges were difficult, but also came with a positive outcome:

I felt a lot closer to [their person]. In that time, she felt a lot more present to me. I wasn’t expecting that. I don’t know what I was expecting but it was surprising, and it was pleasant to feel.

There was feedback that proposed the value of facilitation by someone with lived experience. One participant wondered if this would offer an ideal opportunity for authenticity:

If the leader makes it more okay to be vulnerable, perhaps you get more authentic responses? People who haven’t been through [MAiD] don’t quite fit in the group the same way. I would most definitely say if you were to do it again, the exact thing again, I would consider having a leader of the project of the group sessions be someone with lived experience.

Transformative Possibilities

The first sub-theme was identified as catharsis and/or growth for the creator of the digital story. All participants were extremely pleased and proud with their digital story product and felt that they had accomplished something significant. In addition, all participants agreed that, while the process was arduous and demanding, having completed the story and shared it allowed for relief and healing:

I also think it was sort of healing for me as well, in my grief journey. Doing something like this that taxed you mentally so much as well as emotionally, I think, was quite cathartic at the end when it was finished. And I felt great relief that this is a really strong message. I just found afterwards that I was starting to feel a bit better because I have not felt my grief well. I’m sort of surprised at myself thinking, oh, I’m doing really well today. Yeah, it was a great experience.

This healing, for one participant, was possible because their story was viewable, regardless of whether they were aware or not:

And every time someone watches it, whether I know them or not, or I’m aware that they’ve watched it or not, I think I heal a little bit.

For several participants, the sense of accomplishment fed into another aspect of their lives (e.g., volunteer or career paths directly related to MAiD). This came at an important time for one participant:

It was incredibly challenging, and it gave me a big sense of accomplishment, which really boosted my confidence in a time when I was feeling super insecure. I think a lot of us going through the grieving process, losing somebody fundamental to our lives, you really struggle with identity, you know, who am I without this person and where am I going next? And can I cope on my own? And, yeah, this just really gave me a boost.

Several participants identified that they felt they had personally grown as the result of the workshops. For one, this meant being vulnerable to embracing aspects of themselves and of their MAiD story in novel ways:

I think the creative side for me was the hardest part. Like that vulnerability of leaning into being creative, rather than educational, and being the centre of the story rather than [their person] being the centre of the story. That was a very hard shift for me, but I think it gave me a new lens on sort of the ripple effect of how we really get so centralised to the story or the process or the experience is just about the individual choosing MAiD and where now I can see the broader lens of (how) it affects other people.

For others, the issue of vulnerability was understood from a different angle, as something that afforded them more comfort and control over their MAiD story:

Ever since making the digital story, having that video allowed me to share my real story, and that is my dad passed of MAiD. Yes, he had cancer, yes, it was terminal, but he truly didn’t die of cancer, right? He died because he chose his way out by MAiD. So, to me, that’s a very different narrative, and because I made that story with you guys, I was able to give myself a tool to be able to share the story with images, with a thoughtfully curated story. And I think just sharing it once, sharing it three times, sharing it five times, has allowed me to become more comfortable with my reality. And maybe that kind of helped build the armour more, and maybe I feel less vulnerable, and maybe I feel like I get to stand here and feel proud of my dad in public. In other words, I feel empowered.

Overall, participants responded with resounding positivity for the healing and growth opportunities afforded them through the workshops.

The second sub-theme was identified as providing understanding for audiences about MAiD. In keeping with the sub-theme of intentional sharing, participants were very aware of how the power of the workshop experience could transfer through to audiences of the workshop products - the digital stories. In general, several participants shared the feeling that their person and they themselves were seen with more understanding, with one stating:

I just think this is such a powerful tool, and that makes people understand a bit. Not only [my husband’s] side, but my side.

Others commented on how the story was reflected upon by specific members of their family and friend circles. For one participant, this understanding was experienced by healthcare professionals:

Two of them are doctors and one of the doctors said, ‘This changed my outlook on MAiD. And I never thought I could agree with it.’ And this just made me feel even better.

In one instance, two participants showed their stories purposefully to MAiD objectors, and felt that the effect had been one of casting doubt on their viewpoint:

So when I shared it with her I said … here’s the real story. And she said, ‘Thank you very much.’ And then she said, ‘Now, I’m not sure what to believe.’ Well, I said, I’m just telling a first eyewitness account how it was.

In another case, the story evoked an empathetic response from the viewer, one that was a surprise and promised a possible change in thinking:

I think it’s the best reaction I could have hoped for, in a way, because she appreciated it. And I thought if she can see why somebody might choose MAiD, and see it in a slightly more positive way, maybe she will not be telling everybody in sight what a horrible thing it is.

One participant was able to use their story in their professional capacity as a spiritual care provider, suggesting that putting a human face on the topic of MAiD created a shift in thinking:

One of my students comes from a more conservative theological part of the spectrum. I anticipated that there might be a little pushback, and he was actually rather blown away by this approach to the story, to the whole topic of MAiD … he hadn’t encountered MAiD from a human story perspective. It ended up that he had shifted in his own openness to the possibility of MAiD. [For the rest of the students] it was a gateway for a conversation about MAiD and about their own, processing how they would have been supporting their loved one in a similar situation.

This potential to open conversations about MAiD was understood to be of potential benefit for non-professionals within faith communities who might wrestle with MAiD:

I think it has the potential to help, especially people who are struggling with the notion of, with all of the religious dynamic that goes along with this sort of spiritual permission-giving, and that sort of stuff.

Participants agreed that these conversations carried over into personal spaces as well, bringing greater understanding for those closest to the person who had chosen MAiD. For one participant, their story reflected the shared story:

This felt celebratory in some ways of our story and helped put into words some of the story we had lived together. For some, it was an insight into the story in a deeper way than they had been aware previously, but for the most, the largest response, the greatest response to it was one of deep-seated emotional gladness that this had been possible to do. They felt it brought [their person] close in a way that didn’t memorialise him but certainly marked the impact of his life among us in some significant way for them.

The third sub-theme was identified as the creation of continuing bonds within the group. Overall, participants were grateful for the opportunity to create their story; however, they also emphasised the importance of with whom they did so. Participants shared that bearing witness to one another’s story was both a privilege and a learning experience, and one that created connection. One participant put it simply:

That sort of deep appreciation for the stories that each other had shared and how we got to experience that together.

Several participants used the term ‘bonds’ when speaking about the workshop experiences. One stated that it was because their stories were now known and had been seen:

There’s a bond that has happened with those people in that group that now I know their stories, I see their stories.

For another participant, the emphasis was on the shared lived experience of grief:

The other thing is we made real bonds with the people. And it felt like, apart from we got together to watch each other’s stories, which was just lovely, and yes, we could make that connection. What I notice in anything to do with grief is that it’s such an intense bond, it’s like birthing stories because it is death in stories. I think the connection is real. I still feel connected to the people in the group that I was with, that they matter to me.

Participants also felt that connections to one another were felt from the outset of the workshops. One suggested that an environment conducive to this bonding was achieved, despite the virtual format:

A lovely, lovely part of the experience is the environment created within that group. Even with this sort of remote group and people who didn’t necessarily know each other well … it really felt like we were doing it together. And we were in it together. And there was that support. And I think that came right from the beginning where we had that first night of going through sharing stories … getting that support and validation from them of the piece of the story that we had shared.

Finally, participants commented, in retrospect, on the power of the stories to support others on similar MAiD trajectories:

I also think it serves a bigger purpose. I really do believe I would have loved to have seen some of these when I was going through it. Shows you there’s light at the tunnel at the end, all of them do.

Discussion

Grieving a medically assisted death can involve particular factors and, as such, requires specialised forms of support (Frolic et al., 2020; Serota et al., 2023, 2024). While all participants had viewed their story in the months succeeding the workshops, some identified an initial hesitancy to share it with others. This hesitancy was due in the most part to concerns regarding judgement and/or negative responses from others regarding MAiD (Gamondi et al., 2019; Hales et al., 2019; Serota et al., 2023). When elaborating, participants suggested that this judgement, or lack of understanding and/or empathy, was felt to stem from a societal stigma associated with MAiD (Crumley et al., 2023; Frolic et al., 2020; Serota et al., 2023; Yan et al., 2022).

Participants’ intended audiences also included family and friends of the deceased person. For some, this contributed to an increased ability to make meaning of the experience and effectively convey insights and emotions to others (Akard et al., 2015, 2021; Robiecki et al., 2021). Specific reasons motivating participants to intentionally share their stories, despite initial hesitancy, were understood in part to stem from the desire to counter the stigma and negative responses they had encountered (Robiecki et al., 2021), using their voice and offering a human story to speak to the contentiously viewed practice (Serota et al., 2023). It was felt by some participants that they were also appropriately honouring the wishes of the person who had chosen MAiD by directly addressing these negative responses, offering some growth within the grieving experience for the creator (Robiecki et al., 2024).

Although some participants shared their stories beyond their family and friend circles, mainly in hospice and MAiD-specific settings such as the Dying With Dignity website, Bridge C-14, and MAID Family Support Society, there were those seeking ideas and guidance regarding dissemination. This was felt as a frustration, and a perceived gap in the organising of the workshops, as it was hoped that the work done had not been in vain.

Most participants suggested that while the workshops were highly rewarding, understanding the logistics ahead of the sessions was paramount (Robiecki et al., 2021, 2024). It was felt that knowing the objectives and expectations of the workshop would facilitate balancing the demands of the story creation with other aspects of life.

Digital story creators who are bereaved want to have autonomy when creating their digital stories to ensure that the story product is truly authentic and best represents the encapsulated subject matter (Robiecki et al., 2021, 2024). This is in keeping with the notion that both process and product contribute to making meaning for the bereaved storyteller (Johnson & Kendrick, 2016; Robiecki et al., 2021). Participants of this study overwhelmingly reflected a desire to tell an authentic story about their person who had chosen MAiD; and, while the format of the digital story purposefully uses the first-person narrative to contribute to an authentic outcome (Lambert, 2009, 2010), here more specialised factors were at play.

In these workshops, when digital storytelling was moved into online spaces, one of its tenets was potentially compromised to accommodate the needs of a virtual approach. Thus, for technical reasons, complete autonomy was not achievable (LaMarre & Rice, 2016; Lambert, 2009). Participants shared frustrations about feeling technically less than confident and competent (Durant & Kortes-Miller, 2023; Robiecki et al., 2024), as support was only available via virtual platforms; this potentially compromised personal choices about content or style. The full effects of the autonomous experience - both process and product - could not be realised, again potentially affecting the overall experience in both general and specific ways.

Additionally, the issue of emotional support was a factor. From the outset, participants were already connected to/in receipt of MAiD-specific bereavement support because of their affiliation with their affiliated support group. Nonetheless, participants revealed that the workshops proved emotionally challenging, for myriad reasons and to differing degrees, and agreed that facilitators offered much-needed support and guidance. A few participants shared that the workshop experience asked them to ‘revisit’ and get very close to their grief. While the experience was understood to be emotionally demanding yet highly rewarding, understanding how to support participants in virtual spaces is paramount. Robiecki et al. (2024) suggest that facilitation of digital storytelling with the bereaved need to be cognisant of emotionally preparedness to engage in virtual workshops where in-person and community-based support may not be available or accessible.

Support from other participants in the workshop was understood to be of great importance. As Robiecki et al. (2024) suggest, mutual sharing of lived experiences enhanced participants’ sense of feeling safe enough to be vulnerable and authentically share their experiences. Although participants were not grieving the same relationship with the deceased, all understood grieving someone who had chosen MAiD, considered an important distinction for digital storytelling in virtual spaces (Robiecki et al., 2024).

Finally, while participants agreed that support given by the research team and digital storytelling specialists showed empathy and understanding, future research should be aware of the power of lived experience within the group dynamic and consider facilitation by someone who has accompanied someone who used MAiD. Robiecki et al. (2024) suggest that mutual sharing can enhance participants’ sense of safety in the group, something they argue is “a vitally important ingredient in DST workshops for bereaved individuals who are opening themselves to emotional vulnerability in both the construction and sharing of stories” (p. 953). In this vein, facilitation by someone with lived experience of MAiD bereavement would reasonably heighten this sense of safety.

Transformative experiences were possible for both creators and audiences of the digital stories. This provided catharsis for participants for whom the intent of sharing was ultimately to combat stigma, misunderstanding, and disinformation (Crumley et al., 2023; Frolic et al., 2020; Serota et al., 2023; Yan et al., 2022) and honour their person. It also contributed to a sense of affecting wider positive change for people accompanying someone on a MAiD journey in the future. Participants were particularly pleased when they felt their story was transformative for those in healthcare and dying and death-related professions, such as chaplaincy and spiritual care coordination.

Strengths and Limitations

This study represents 12 individuals and that small sample represented only three Canadian provinces, Alberta, British Columbia, and Ontario. This mirrored the MAiD bereavement study conducted by Serota et al. (2024), suggesting that the MAiD experiences of three out of 13 possible provinces and territories offer a limited understanding of the national landscape. Further study using support networks and hubs beyond Bridge C-14 and MAID Family Support Society might offer a more transnational understanding of experiences.

These virtual workshops surmounted issues of geography/distance (Durant & Kortes-Miller, 2023; Robiecki et al., 2024). This also meant that participants had the benefit of creating emotionally challenging MAiD-specific digital stories about their grief experiences in their home environment, something that Robiecki et al. (2024) describe “comfort of being in a familiar place” (p. 958).

The participants of this study were coming from unique places in their grief experiences (in terms of for whom they grieved, their experience with MAiD and their person; the time since the death, etc.). However, all 12 participants shared a positive experience with the MAiD journey, something Serota et al. (2024) suggest contributes to a willingness to be more open with themselves and with one another.

Finally, post-workshop interviews were conducted by the RPL, also a member of the workshop facilitation team. This could be interpreted to mean that participants were hesitant to safely criticise the workshop. However, interview transcript analysis suggests that participants had appreciated the safe space created in the workshop to be their authentic selves, and that that carried over into the post-workshop interviews.

Conclusions

MAiD-bereaved digital storytellers in this study wanted to create authentic stories about their person who chose MAiD and wished to do so within spaces that provided the appropriate amount of emotional and technological support. This combination was understood to be integral to participants’ ultimate goal: the production of stories that would ideally garner understanding and empathy and provide education in the face of falsehoods and disinformation about MAiD. On a broader scale, this study contributes to the identified need for greater grief literacy rates (Breen et al., 2022), inclusive of community-based practices and conversations about all forms of dying, death, and loss.

What this Study Adds

While digital storytelling workshops for the bereaved have been conducted in person (Robiecki et al., 2021) and in virtual spaces (Robiecki et al., 2024), this study is novel in its use of digital storytelling workshops conducted virtually with people grieving a MAiD-specific death. As such, it contributes by adding the voices of the bereaved to growing bodies of literature around navigating grief and bereavement through digital storytelling and the evolving Canadian MAiD landscape. As the number of Canadians who learn about and have exposure to MAiD will inevitably increase, and the experience of supporting someone one through MAiD can be complex and is often unprecedented, it is helpful for all members of society to develop a deeper understanding of this unique experience so that meaningful and effective care can be established and provided.

Implications for Theory, Policy, And/or Practice

This study reinforces the need for comprehensive support for MAiD grief and bereavement, answering the clarion call put out by Frolic et al. (2020). It also may be inferred that, within specific parameters, support can be offered to the MAiD-bereaved in digital storytelling workshops conducted in virtual spaces. Hearing directly from the bereaved offers researchers, healthcare professionals, and policy makers evidence of where direct support is desired and/or required.