MAiD as human connection: Stories and metaphors of physician providers’ existential lived experience

Abstract

Being the one who provides an assisted death is complex and profound, and yet the lived experience of this novel act is little understood in Canada. In this article, we highlight the methodological issue of how one might peer behind emergent threads that addressed us in the data. A narrative-hermeneutic approach revealed that for the eight providers we interviewed, this is an embodied existential experience. The act of providing MAiD fostered embodied feelings of conviction, courage, compassion, and intimacy. We ultimately find that the experience of providing MAiD is human connection. The experience holds a dimension of the existential and provides a way to get closer to the unsayable profoundness that occurs in the space of providing death for a suffering other. This is important if not crucial in medicine and health care, as shared experiences connect us to what it is to be human, especially at end of life.

Background

A growing body of research into assisted dying in Canada points to the broad experience of those who dare to take on the complex role of “provider.” Scoping reviews (Brooks, 2019; Fujioka et al., 2018; Zworth et al., 2020) highlight MAiD-related roles, process and perspectives, and medication administration. A small number were specific to physician providers of medical assistance in dying (MAiD): Khoshnood et al. (2018) found challenges related to relationships with colleagues, financial reimbursement, and workload; Shaw et al. (2018) study participants spoke of providing MAiD as rewarding work that is complicated by many challenges; and Kortes-Miller and Durant (2022) reported participants’ perceptions of provision as rewarding, amidst complexities related to relationships, motivation, resources, and getting others on board. Another study, conducted by the authors, highlighted the experience of providers as holding dualities of reward and risk (Beuthin et al., 2020). We described the degree to which providing an assisted death was experienced as an art: of being able to see and hold both the clinical and the human, to be invisible and visible in process, to be technical and have grace, and to feel highly present and fatigued from the high level of alertness. The ability to hold both simultaneously—to be deeply passionate and yet cautiously reluctant. Art as an emergent counter narrative to pre-legislation presupposed and pre-imagined beliefs that assisted dying would be unpalatable or unrewarding. We are learning that many who deliver the means of assisted dying experience satisfaction, compassion and may liken the engagement to practicing the art of medicine or slow medicine.

This current research revisits data of that earlier study in order to take a deeper look at an underlying and at times ineffable current of what we began to name as “emotion” running through the storied experiences of providing an assisted death. We sought to add another lens that would support a further analytical approach to the stories we heard, specifically the expressed feelings of love, joy, and inner peace that we came to think of as existential life phenomena. We turned to hermeneutic phenomenology as a way to shine a light on the providers’ experience of assisted dying in a most novel aspect of end-of-life care.

The focus here was not on describing in depth the actual process of MAiD, nor examining physicians’ stories of negotiating risks and facing ethical challenges which are addressed in an earlier article (Beuthin et al., 2020), but to highlight the less visible undercurrents running through physicians’ stories of providing assisted death. We believe the stories highlighted here will generate insights into this experience at this early time in MAiD’s history and help surface the “providing” of an assisted death in an open, fluid way.

Overview of Canadian context

To give the reader background, in this study, we describe what is meant in the Canadian context of a physician or nurse practitioner who provides a medically assisted death, the role we henceforth refer to as the “provider.” The provider does comprehensive preparation and completes an in-depth assessment ensuring all eligibility criteria and safeguards have been met. As one participant expressed: “it’s like doing a sort of specialist consult.” There is a weightiness to this assessment, as the act of providing an assisted death is under the Criminal Code of Canada, known as Bill C-14 (2016) and expanded in Bill C-7 (2021) (“An Act to Amend the Criminal Code,” 2021). But more than that, the provider’s role is to listen deeply to understand the person’s suffering and to document this in detail. An intimacy is established, as the person living with a grievous and irremediable medical condition is at their most vulnerable, sharing the story of their health and indeed their life in thoughtful detail, hoping for an affirmation of their wish to end this life as they know it. Topics focus on quality of life, beliefs, suffering, and mortality. When (and if) eligibility is determined and a time and date are chosen, the provider is responsible to access the medication kits and arrive at the set location. The person who has chosen to end their suffering will be present, but so may others be in attendance in large or small numbers. There may be informal ceremonies enacted or more formal rituals. This is the setting, profound and often laden with emotion; all eyes watching and waiting and knowing and not knowing. The provider is responsible for success, or what we may refer to as a “good death” as imagined by the recipient. Emotions are high for all present. MAiD remains novel and continues to hold unknowing.

Evolving horizon

We came to the original inquiry about the lived experience of physicians who provide an assisted death (Beuthin et al., 2020) with an interpretive approach that had us pay attention to that which surprised us, evoked curiosity, and was particularly poignant (Thorne, 2016). We identified three themes in an overall study description: rediscovering the art of medicine, gaining unexpected rewards, and negotiating risks and challenges. Providers in the study expressed how “extraordinarily rewarding” the work had become. We conceptualized this as “compassion satisfaction,” as supported by voiced words such as “deep empathy,” “I hadn’t expected this” and “It’s amazing. It blows my mind still.” Participants’ experiences conveyed aspects of embodied emotion that were most oft whispered softly, with hesitancy, as if searching for a way to describe the almost unsayable, inexplicable experience of honoring and assisting death. Some spoke of feelings of love and joy.

We were aware that an earlier study in the Netherlands found 52% of physicians who performed euthanasia “had feelings of comfort after” (p. 519) and shared positive sentiments of having contributed to quality dying (Haverkate et al., 2001). In contrast to the muted tones used in the Haverkate et al. study, we were surprised by the level of positive feeling and the language used by participants in our Canadian study. It ran counter to what many non-providing physicians may believe, what the public may imagine, and what is often an assumed public discourse of shying away from such a role (Crumley et al., 2019). This sparked our interest in better understanding the less visible elements we heard and saw running through participants’ experiences. The nature of these emotions warranted further examination.

We turned toward hermeneutics, as the notion of emotions did not seem quite right for what we as researchers, were sensing in the audio recordings and transcripts; ‘emotion’ felt narrow and laden with social preconceptions. We wanted to see beyond the obvious and remain true to our aim of an evolving understanding. Through listening and attuning to the tone and cadence of participants’ stories, the concept that came to resonate most strongly was that of “existential life experience” rooted in an ontological dimension of thinking about the world and language itself. In everyday language, existential relates to or affirms existence and was adopted to shape this current inquiry.

Research inquiry

The guiding question shaping this inquiry was: what is the existential experience of physicians providing assisted death to a suffering other? From a human science perspective, existentialism is about how we experience the world we live in, in the everyday. Phenomenologist Van Manen (1990) offers examples of common existential concerns human beings face: life, death, being, otherness, meaning, and mystery. In addition, he highlights the fundamental existentials of lived space, lived body, lived time, and lived human relation. Drawing on the historical work of renowned philosophers, Visse et al. (2019) add that the existential realm is about learning to know what it means to be human, through or from lived experiences; that experiences in the existential realm are “hard to grasp” (p. 5) and suggest we need ways to illuminate experiences through art-based research. In our estimation this would include stories of lived experience. The existential dimension also provides a way to hold experiences that may be indescribable or unsayable to a person trying to convey this. It has been argued that the inclusion of existential philosophy in medicine is ever crucial, given the technologic advances of our times that can have unintended adverse effects on both patients and doctors themselves (Boudreau, 2018). It may be that such a perspective on lived life in the practice of medicine would help address and maintain a balance and connection between body and soul and achieving a state of wellness.

Methodology

As narrative researchers in the applied science of nursing, this unexpected focus of provider existential experience lingered with us over time. A field note by the first author reflects the impact of this:

Listening to this transcript for the first time, I am taken aback by the honesty, the frankness, the raw language, and expressions of being. The bravery and courage. And I am deeply moved by the depth of intimacy shared. This participant’s lived experience of what they do evokes in me a sense of wide-eyed awe. I am overwhelmed by the trustworthiness placed in us as researchers. I know these stories are historic and meaningful. And I feel a wave of grave responsibility to represent and do justice to what has been shared, offered to us as a gift. Humbled.

We knew there was something more calling us, like a mystery at play. This became a methodological issue: how could we best peer behind these emergent threads of existential phenomena and expressed emotion that rang so true? It could be said that we did not choose to explore more deeply with a hermeneutic approach, but in this instance the approach chose us. Gadamer (as cited in Moules et al., 2015) postulated that “understanding begins when something addresses us” (p. 71), something that makes us feel a need to respond. And this idea did just that, it caught us off guard and personally addressed us.

The topic showed itself as a sense of something at work in our life and practice. Dunne’s explanation resonated: “There is often a suddenness about it that makes us say that a question ‘comes’ to us, that it ‘arises’, or ‘presents itself’” (as cited in Moules et al., 2015, p. 72). We were prepared to be guided by this address and pay close attention by attending to and cultivating what was already there in the data; to pose an additional question and enter into the hermeneutic study that we describe here. Our aim was not to essentialize, define, or merely describe the experience, but rather to “conserve the topic in all of its complexity…while still preserving the topic’s integrity, the whole of it, as it lives in the world” (Moules et al., 2015, p. 75). To understand differently, new truths that are at once revealed and concealed (what in hermeneutics would be described as aletheia), and from this meaning emerges as an opening of something that was closed; an enlivening and a remembering (Caputo, in Moules et al., 2015, p. 76). It requires a bringing forth and a bringing to language of something newly revealed (Moules et al., 2015).

For this reason, we turned to hermeneutics which has a long tradition as a philosophy but also can offer a guiding methodology used to interpret and understand the unsaid of our human experiences. We took to heart the description offered by Grondin (1995, as cited in Moules et al., 2015) about how “hermeneutics peers behind language; it ventures into the contextual world of a word, considering ‘what is said, what is uttered, but at the same time what is silenced’” (p. 3). It was our hope to draw the reader into this topic, to make it compelling, and as Caputo stated, “restoring them to their original difficulty” (1987, as cited in Moules et al., 2015, p. 5). We believed this methodology would provide a means to understand the complexity of the existential experience of providing an actual assisted death.

Participants

In all, eight physicians who had provided MAiD from urban and rural areas volunteered. Convenience sampling was used. A recruitment poster was circulated electronically across a local health authority to medical divisions and physicians known to have provided an assisted death. Participants included general practitioners (GPs) and non-specialist physicians, working in acute and palliative care, and in urban and rural communities. There were equal numbers of men and women, with ages ranging from 33 to 62 years. The majority identified no active religious affiliation. We are withholding ethnicity to protect anonymity. The range of experience as a physician ranged from 6 to 38 years, and experience as a direct provider of MAiD ranged from 12 to 113 assisted deaths.

Data collection

We used semi-structured interviews that lasted 40–70 min. Interviews were conducted in person or by telephone by co-investigators, audio-recorded and transcribed. To facilitate participation throughout the large geographic region, the majority of interviews were conducted by phone. Guiding questions to evoke depth and engagement included: tell me about your experience of being asked to participate in a medically assisted death; what has been most challenging about your MAiD experience; what concerns did you have, if any; and how are you/are you reconciling your personal and professional beliefs? We had no question specific to emotion, embodiment, or existentialism, although at the end of each interview we asked whether participants had a metaphor depicting their experience.

Ethics

This study received approval from the Human Research Ethics Board, as per Tri-Council Policy Statement − 2 Article 2.10 (18). Each participant provided written or audio recorded consent. Ethical dilemmas arose primarily during analysis and decision-making for dissemination. Participants spoke of fear of reprisal from colleagues and oversight bodies especially in the early days (Beuthin et al., 2020). Consequently, we paid close attention to anonymity and wondered if certain quotes were too identifiable to include. Weighing the benefits of rich description in participant stories with their potential identifiability posed ethical concerns. We chose to omit such quotes and stories rather than alter or disguise participants’ words.

Trustworthiness

In hermeneutics, evaluation criteria are generated in the research process through reflexivity and transparency (Koch & Harrington, 1998; Turner, 2003). The focus of trustworthiness is on establishing believability and plausibility; the interpretation should ring true of what is said (Moules et al., 2015). Findings often merge participant and researcher views alongside integration of philosophical concepts. The aim is to have engaged readers in the stories presented such that they may gain insight into how we generated our understanding.

Analysis

In hermeneutic tradition, analysis is interpretation (Moules et al., 2015). There is not a specified method of analysis per se, but rather philosophical underpinnings that guide analysis in a way that helps to open up associations that will strengthen understanding of the topic. Following this approach required us to divergently focus on how the topic lives out in real practice, has evolved with time, relates to the general culture of practice, and what it meant to the providers as conveyed through their stories and storytelling. To this end, we listened to audio interviews, read and re-read transcripts, and generated notes, reflections and insights. We shared interpretations back and forth (between authors RB and AB) through face-to-face and zoom meetings, always going deeper and refining. We reflectively engaged the data using prompts: how are emotions and embodiment appearing or not; how are we impacted through listening and reading transcripts; how do participants verbally express or struggle to find words; how and what affective elements do providers share; is anything conveyed yet unspoken in participants’ stories?

To pay close attention to the particulars of experiences and the implied yet unspoken, we attended to participants’ language and metaphors. At the same time, we sought to honor the wholeness and integrity of the shared stories by identifying “little stories” hidden like gems in each long interview. Little stories were then grouped under key storylines. These combined approaches offered a way to illuminate what may have been ineffable or conveyed at an emotional level. Throughout we engaged with literature seeking to deepen understanding of physicians’ embodied existential experience of assisting a death.

Findings

Two assumptions about existential experience shaped our interpretations. First is that this realm opens into experience of learning what it means to be human (Visse et al., 2019) and second, it is “hard to grasp” (p. 5). We conceptualized an overarching notion of human connection to convey what seemed at times unsayable, and present findings with a focus on embodied emotional language and metaphors, followed by little stories that reflect the depth of emotion, sincerity, and a caring countenance running through physicians existential experiences of providing assisted death.

Embodied emotional language

The term embodied language is used in a broad sense to illustrate how thoughts and feelings are expressed in and through the body. Participants often spoke with hesitancy, uncertainty, and a rawness, as if they could not quite make sense or put into words that which was so unique and, in many ways, ineffable. Traces of emotion could be heard in the slower speech, softer tones, or more directly through the specific words they used in describing their experience of providing assisted death. Descriptors included: “Loving;” “a solitary practice;” “intimate contact;” “heartwarming,” “the most important medicine I do;” “satisfying medicine;” and “rewarding.” Other words reflected ethical and humanistic perceptions such as “an ultimate act of compassion;” “an honor;” “incredible gift;” “liberating;” “unlike anything I’ve ever…” and “extraordinary work.” For some, the experience seemed to hold a deeper societal ethic including terms of: “social justice;” “a crusade;” “empowering people;” and “the right thing in the right circumstance.”

These powerful expressions point to undercurrents that we heard along a spectrum of affirming emotions. The idea that embodied emotion arises out of an expression of moral courage has been posited (Gaufberg, 2010) and resonated with the language and emotional transparency in physicians’ stories. To provide the actual death, which is what we were focused on, the provider needs courage. And this courage holds so much: the risk is high, and tension builds. The person they are acting upon is at a highly vulnerable moment of their life, being on the precipice of death; a time when any perceived veil between life and death is at its thinnest, and the provider is part of that, feeling the awe, the profundity. And then it is over, the drugs administered, and the death given; an assurance fulfilled. And there is a release that is transformative and embodied; a release that creates unique feelings such as a high or joy.

“Courage” as attributed to Aristotle, defined as a virtue: “a mean with regard to fear and confidence” (New World Encyclopedia, 2021). To have courage one must face risk, yet despite this have the disposition to think wisely in that challenging circumstance. In the field of medicine, courage is required but not often spoken of, almost unsayable in itself. Gaufberg (2010) shares a reflective story of working with medical residents, how they spoke about the lived reality of facing transitions, fears, and increased responsibility and yet did not mention the word courage. Skill sets, yes. But not courage. This surprised Gaufberg, as courage in medical practice is needed, be it physical, moral, or emotional, and courage to know you will be transformed by the life experiences you encounter. She posed the concern, “perhaps we do not speak of courage because this quality is so intrinsic to physician hood that to name it is to diminish the power and sanctity of what we do. Or maybe talk of courage would call too much attention to the risks associated with our profession” (p. 805). While the word courage was not used directly by participants, we sensed and heard moral courage flowing in and through their word choice. Staying true to our methodology, we appreciate that “language impels toward understanding” and yet we are ever cognizant that language has its limits; it is ever evolving and in that sense “always leave understanding incomplete” (Moules et al., 2015, p. 40). We did, however, ask participants if they could offer a metaphor to represent their experience as providers.

Metaphors

As each interview drew to a close, we dangled the question about metaphor in hopes of accessing diverse layers of understanding. Metaphor has been described by Lakoff and Johnson (1980, p. 3) as a “device of the poetic imagination and the rhetorical flourish – a matter of the extraordinary.” The linkage created between two subjects helps create meaning; “they are the very means by which we can understand abstract domains and extend our knowledge in new areas” (p. 543). The metaphors expressed by participants are tied to their unique, embodied experience of providing an assisted death. We selected several metaphors to provide glimpses into their experiences of embodied emotion, presence, and connection.

“Like trying to sing and play the piano at the same time.”

Well I guess the closest would be playing a piano and singing. Because at the beginning I think my experience was how do I put these together? It was keeping that interplay between orchestrating – trying to orchestrate a graceful ambiance and paying attention to my syringes. Which sounds sort of silly but it’s kind of like you’re trying to sing and play the piano at the same time and at some point it sort of clicks and you’ve got it. I need to read the music and get my fingers in the right place and hold things in the right way, that kind of thing. To realizing I’m still trying to make a song at the end of it, be graceful at the end.

This metaphor likens the artistry of a musician to being in a room and orchestrating a graceful, assisted death. To be fully present in body and yet not intrusive. To be medically accurate and feel a sense of mastery with one’s craft, while being fluid and artful in movement; the mind and body as one. Evocative of being in an emotional state of harmony. The physician was aware of the delicate care at stake and entered the assisted dying situation with a high aim of achieving the outcome with grace; that is, attuning to the person before them and those present and also to their own emotional wellbeing.

“A release.”

It’s emotionally as intense as a birth just in a more sad and profound way. But it is also a release. One patient said to me just before I had to inject him, he said, “thank you for saving my life.” And he looked at me and he said, “Do you understand what I mean?” I understand perfectly what you mean. I was saving the life he knew and preventing him from having the life he feared having as he became sicker and would die, become incontinent and so on and so forth. It’s similar to a birth, just different.

The paradox of saving someone’s life through death. One can feel the emotional intensity and profoundness in this situation, heightened by the patient’s quest to be understood. The metaphor of a release holds the embodiment of freedom from, and letting go. Release in this narrative speaks to the dying person but equally to the physician’s awareness of sadness and yet understanding fully…an intimate presence.

“Doing a delivery.”

I mean the obvious one for me is doing a delivery. It’s very, very similar, right? I mean I’m sure you’re going to hear that. It’s not so uncommon that some of the people doing MAiD provisions are actually doing maternity. There’s a birth plan there’s a death plan, there are family dynamics, there’s intensity, there’s an emotional event, there’s a coordinated event that I’m responsible for but I’m not the most important person in the room. There’s a whole bunch of similarities that I find fascinating…Deliveries in and out. Yea.

Indeed, several participants noted the similarities between birth deliveries and assisted dying. Janesick (1994) reminds us of the magic that can happen when two unlike objects are likened in a metaphor, how it can defamiliarize the familiar, creep up and surprise us. While the similarities of intensity and emotionality are identified, the metaphor surfaces shared primordial layers in often taken-for-granted opposites of birth and death.

“It’s completely unlike anything I’ve ever…”

I surprised myself with how comfortable I am about talking about dying, really. And I don’t know, when people die, surprised about how little it upsets me, because it doesn’t upset me at all. I thought it would and it doesn’t. It’s like a fruition of their wishes, so no, not upsetting at all. In fact, uplifting. The complete opposite. The complete opposite to what I expected. I cant say it’s like something…. It’s completely unlike anything I’ve ever…I can’t compare it to anything…. It’s like a mixture of empowering people and setting them free…

This participant struggled to put into words what was “unlike anything I’ve ever,” “I can’t compare it to anything” and eventually settles on uplifting notions of empowering and liberating. Like other participants in the study, their experience was deeply felt yet often beyond the reaches of language. These physicians were finding ways to articulate an often surprising experience that was still taking shape.

The metaphors we heard offer insight into what is a generally difficult experience to articulate. While the actions and roles of providing were readily shared, the existential experience was conveyed more subtly. We found the language and metaphors to be surprising and generative—in the linkages made to other subjects, evocative—in the conveyance of sincere emotion and intimacy, and existential—in their rootedness in questions of life and death. The language and metaphors conveyed a sense of connection to the person before them—an honored responsibility of entering into a shared liminal space with someone whose life was about to end. In this regard metaphors may influence and expand understanding of how this complex assisted dying provider role is perceived going forward.

Little stories

What follows are stories using participants’ storytelling to illustrate how embodied emotions manifest in providers’ existential experience. The stories are grouped using three storylines of (1) accepting the emotional hue; (2) acknowledging weird emotions; and (3) attending to emotional health. These stories exemplify key storylines and reflect depth of emotion, sincerity, and a caring countenance in providers’ experience.

Accepting the emotional hue

This first set of stories acknowledges emotional labor inherent in providers’ care and the complex, often unfamiliar emotional terrain they encounter.

“You’ve gotta leave a piece of yourself behind every time, emotionally. I think there is an element of loss.”

Patients and families are actually pretty supportive of you. I think they recognize that there is an emotional aspect to it and certainly you express your emotions while you’re meeting with the patients and it’s hard to hide that and so I think that I often get asked, how do you manage? And I kind of say, well you’ve gotta leave a piece of yourself behind every time, emotionally. I don’t know what I mean. It’s hard to express. I don’t think you could go in and do this without feeling some emotional attachment.

There’s the part of it that you, in order to understand the patient’s rationale for requesting this and delve into the questions of suffering you have to get to know the person, knowing that the end result is going to be that they’re going to die. And you get to engage with the family. So I don’t know if you’d call it an element of grief, I think there’s an element of loss. I suppose offsetting that is a sense of satisfaction. The patients are very appreciative that we’re providing this and they do express that. I think that it’s, if you could say this is a rewarding aspect of medicine I would say yes, it’s very rewarding.

“I’m using more of an emotional side of myself.”

There’s often a home visit involved and there’s, I don’t know, there’s that sort of mutuality about it. It’s different than general practice. Very different. Very different work. There is – I find that I invest emotionally more but that doesn’t mean that I’m upset it just means that I’m using more of an emotional side of myself than I often do in an ordinary general practice consult.

“This is emotionally charged medicine.”

Boundaries and role clarity are important especially since this is emotionally charged medicine so you need to be drawn in but it’s not like you have to do everything. You learn by doing. It’s not the most emotional – honestly most of these cases are not emotionally charged, most of them are relatively easy actually but some of them are incredibly hard.

So you asked why I went into this and I’m not particularly sure it’s causative but when I think back to when I was 10 and my grandmother was dying – she was dying of congestive heart failure and it was an awful death, she was in terrible agony, she was in and out of the emergency room even though it was clear that she only had weeks left to live because nobody – palliative care was not well done in her town and her experience at the end of life was poor but for the families’ it was terrible. And so my mom and I lived with those memories for the rest of our lives. My grandfather lived with that for the rest of his life which was a long time after that. And MAiD was the only thing that could have made that better. She probably wouldn’t have chosen it but to be able to give people grace and dignity and comfort at the end of the of life and a memory for families to see that ending is an incredible gift that we give patients and it’s an honor to be a part of that part of their life. But yes, it’s emotionally charged.

These stories invoke participants’ commitment to opening up and into relationships that requires providers to “invest emotionally.” Participants believe that while this kind of emotional experience is unlike any work they do elsewhere, it is imperative: “I don’t think you can go in and do this without feeling emotional attachment”. Accepting this aspect of providing is essential to providing MAiD; the stories offer the paradox of giving-and-receiving where the demands and rewards are high. That is, inevitably difficult emotions such as grief and loss that are offset by seemingly intense emotions of gratitude and honor.

Acknowledging weird emotions

This second set of stories help disrupt the everyday, taken for granted narratives that some may hold related to the provision of an assisted death.

“It’s like an adrenaline rush.”

I’m a little surprised at two things emotionally for me. One is I found myself – a year into it, I found myself helping a woman I really liked. A situation had come up and we had to change her date, make it earlier, like I’d gotten to know her, I really liked her and her family, I was happy to help them, everything was cooking along in a very positive way. There were some changes and we accommodated for that and I was still able to help her and it was still a beautiful, beautiful death. Very moving at the end. And I felt really good about the job I had done and received all that gratitude and so that was all very good.

And then I found myself driving home feeling a familiar feeling I hadn’t felt in a long time and it was the feeling I had after doing a birth, after a delivery. It’s almost an adrenaline rush. And I was surprised at how good I felt. It was a little bit weird. I was really, really –I don’t know what the word is. I’d say happy but that’s not that word. You get a – there’s a certain rush when you deliver a baby. It’s like an adrenaline rush. And I felt that after her experience and I thought wow, that’s weird. So I was quite surprised at that and I thought, wow, I shouldn’t feel that way. And then I thought, no. I should. I just did a really great job and I really helped someone so it’s ok. Like I wasn’t sure, I had to give myself permission to be ok with that. So that was a bit surprising. Lovely, I mean it was a great feeling but weird in the context. But you kind of question – I mean I questioned myself in that kind of, can I feel that way, is that ok? Can I be so, can I be so up after having done this? You kind of question yourself.

“I don’t find it emotionally difficult. I don’t find it heavy.”

No, I don’t do anything (to prepare) because I guess for me I don’t find it emotionally difficult. I don’t find it heavy. In fact I find it kind of, like it puts me –it seems strange maybe but it puts me in a good mood. I feel like I’m doing something good for someone. It feels like I’m helping people, I’m doing what I signed up for when I became a doctor, right? So I don’t have, I don’t do anything because I don’t feel like I need to do anything. I feel like I’m doing my job but in a really awesome way if that makes sense?

“In a weird way, natural”

Certainly the first death and the first 10 deaths were difficult because I wasn’t sure how to anticipate how the drugs would work. I wasn’t sure where to put myself. So I think it’s taken a little while to just orchestrate how to be a pebble and not a rock. How to be slightly invisible in the process and let the person who’s dying take the lead, sort of center stage. So that has taken a little while. So now it feels totally fine. Saturday I was out in a big orchard on one of the islands, lying on rugs with a whole bunch of people, and it was fine, it just feels completely, in a weird way, natural.

These stories foreground the existential nature of providing a death. According to Van Manen (1990), the existential dimension of experience provides a way to hold experience that may be indescribable or unsayable to the person trying to convey this. The physician who experienced an adrenaline rush quickly qualified how this feeling was both surprising and questionable. Are there unsayable elements at play? What does it mean in this context to feel exhilaration, to feel in a good mood? And, as the story progressed, the physician settled into giving themself “permission to be okay with that.” Nevertheless, this story points to broader social narratives about what emotions and reactions are seen to be okay: “It’s like an adrenaline rush…and I thought wow, that’s weird…and I thought, wow, I shouldn’t feel that way.”

We were taken by the word “weird” and how frequently physicians’ drew on the term. It was used when providers encountered unexpected and perhaps unsettling feelings: “it felt great… but weird” and “in a weird way, (it’s) natural”. Their grappling with fluid experiences as weird seemed uncanny; in Old English weird means “having the power to control fate” (https://www.etymonline.com). Participants’ feeling weird as they processed assisting someone to die may point to a realization of the sacred, powerful control of the fates they are encountering. Interestingly, in German mythology the three Fates were known as the Weird Sisters; goddesses who had power to control human history. Apparently, these goddesses had strikingly odd appearance and sheds light on the modern vernacular of weird as strange, abnormal, and unnatural.

Attending to emotional health

The final set of stories surfaces participants’ awareness of emotional tolls and the need to take care of themselves in this very humane work.

“I try to not go home too quickly because otherwise it leaves a bit of a shadow over me.”

I think you have to have balance. I think you have to debrief. We debrief afterwards with whoever else was involved, the others, friends or family without obviously compromising the patient’s privacy, but you need to talk about it. And I try not to talk about it with people too much in case they find it stressful. I don’t want to burden anybody with it but I think in your head you have to work it though a lot. Before a case you can get butterflies in your stomach or lose sleep for a few days so it’s really important to take good care of yourself and to make sure that you keep your focus and to not focus too much on death and dying but to hold your kids a little tighter and just to keep your head in the right place. (I: and how do you do that?)

Immediately I make sure to get chocolate – which sounds a bit bad but you need something. I think it comes from the Harry Potter books. It’s interesting – I don’t know how familiar you are with it –but if they see a Dementor which is a soul-sucking creature, they get chocolate afterwards just to revive their strength. There’s something bizarre about it but it feels like that, right? You sort of break the negativity with having a bit of chocolate. And then you have to make sure that you’ve got quiet time. I try to not go home too quickly because otherwise it leaves a bit of a shadow over me that my family will notice. For a day or so things are not quite 100%, you just won’t be quite as chirpy, or maybe a bit more distracted in conversation.

“Allow for digestion of the emotion.”

I’m doing lots of procedures in the same week or even sometimes two procedures on the same day. I find after a couple of weeks of that I just feel like I need a break. That’s just too much and I don’t think that’s smart, that kind of work all the time consistently. I think it doesn’t give time to allow for digestion of the emotion, or working through…. It’s not like I need a ton of that but I do need some. Everybody’s human.

These stories convey the embodied nature of providing and the importance of “taking good care of yourself”. The emotional requirements call for careful attention to time for processing experience by learning how to accept and be human with self-care. While the depiction of a “soul sucking creature” akin to death is fictitious, it speaks to both the embedded intensity and risks of this work.

Discussion and pondering of implications

When we looked across the words, metaphors, and little stories, we began to see how the providers’ language and direct words revealed a depth of human connection and embodied emotion. Each of these key findings are intertwined in providers’ existential experience.

Every participant spoke of some form of human connection when providing an assisted death. Some expressed this as unexpected or surprising emotion, some as meditative, some as emotionally charged, some as quiet, some as loving, etc. But all language descriptions tethered to a human connection, not an instrumental clinical procedure. Some participants used the actual language of love. And we think of love as an ethic (Watson, 2003). Ironically, this longing to feel emotion and connection that is often lost in today’s modern practice of medicine, is found here by helping another to end their suffering and end a life. Providers find human fulfillment here in this moment of death, and this aligns with Aristotle’s moral courage. Gaufberg (2010) wondered if we should seek out stories of courage, if we need to name it. And we support a fostering of clinical practice cultures where stories that foster courage are shared. Providing MAiD remains profound and the human connection keeps the providers engaged and wanting to keep doing this and to come back if they leave. MAiD provided these doctors with access to a most profound human experience and connection like no other.

Physicians who make the decision to be the one who provides this end of life alternative, who administer the drugs, seem to enter into an existential space and allow themselves to feel embodied emotions that come alive as courage, conviction and compassion. Conviction based on long held beliefs about medicine, social justice, autonomy, and death; courage that is needed to offset the risks and intense effort; and compassion generated by bearing intimate witness to suffering whilst receiving outpourings of gratitude that satisfy at a deep level. The immersion that is demanded by the process ignites sensitivity to the impermanence of life and allows them to experience the provision of MAiD fully. Providing the death aligns the mind/body/spirit with medicine practice; the experience is unlike anything else; the provider is transported into a rare, alternate reality and what they are doing is an intense, emotionally charged engagement, a finality; for some providers it was akin to a ritual. And this space that they found themselves in holds emotion and allows it to enter, to come alive.

These understandings are congruent with Visse et al.’s (2019) call to illuminate experiences in the existential realm even though they may be hard to grasp. Our findings also align with Boudreau’s (2018) call to action for the inclusion of existential philosophy in medicine, and we would extend that to health care overall. Stories of lived practice experience, whether being told or received, have the ability to support a holistic balance and connection. Additionally, Charon (2006), an expert on stories in medicine, has spoken more recently about a “mortality connection.” Liehr and Smith (2020) expand on Charon’s humanities lecture: “she believes narrative medicine engages health care providers in a ‘fellowship of mortality’ where the common ground of humanness sets the stage for meaningful conversation and where the ‘N of one’ shines as a way for the provider to understand patient uniqueness” (p. 24). Similarly, Miller (2015) has written about how “suffering unites,” how to share one’s suffering creates healing and compassion. He posits that even though many health care professionals may be comfortable talking about death, not as many are comfortable talking about actual dying itself. The stories here shine a light on providers of assisted dying and how their intimate engagement in that shared lived space of dying creates profound connection.

The storied experiences reveal a palpable undercurrent of emotion embedded within, and suggest that for those providing, the means of death remains profound – the practice leads to the satisfaction of experiencing a connection to our shared humanity. For each physician we interviewed, their act of providing was grounded in a belief and connected to an emotion experienced in the body in some way, be it as uplifting, loving, meditative, harmonious, and so on. A hermeneutic address is something that unsettles a taken-for-granted everyday experience, and this topic of embodied emotion and existential experience of providers of assisted dying did just that. It unsettled us as researchers, and we could hear that it also unsettled those who shared their story. The experience they tried to articulate was, even for them, partially hidden beyond the reach of words. As if unsayable, unknowable even to themselves. While it surprised us, it also was reassuring, for if assisted dying were to be taken up by those who provide it only as pure clinical procedure, then this would sadly reflect on humanity. We heard the opposite: essences of kindness, compassion, and person centeredness. An emergent metaphor that we believe holds the totality of all this in the experience: providing MAiD is human connection.

The depth of emotion that participants experienced while providing an assisted death could only be known in the absence of this experience in other areas of their practice. For the providers, this experience disrupted the familiar and revealed a kind of amazement. Moules et al. (2015) believe that this represents the call of topics: “disruption of the familiar and the kind of amazement that goes with it, a puzzlement, wondering, and passion for understanding” (p. 74). And the emotional aspect of this experience did bring the providers up short.

Going forward, as more time passes, we ponder several questions: what new metaphors will emerge? Will emotion and the practice of assisted dying continue to evolve and shift? Is there a sense of human connection now because of the novelty? Will providers remain compassionate or become less so or more so? And are questions that keep the conversation open important for us as a society and how we approach the profundity of life? We believe so. Rorty (1979) reminds us of the imaginative power of metaphor, and how going beyond representation may help push current thinking; how seeking new ideas, new metaphors, and new language all contribute to intellectual and moral progress.

Limitations

We did not set out to study providers’ existential experience; therefore, a fuller discussion may have surfaced with more focused questions on the topic. Further, the study does not address negative emotions that may arise when an assisted death does not proceed as planned, if conflict in the room erupts, or institutional constraints impinge on the MAiD experience. While the positive experiences are foregrounded, this reflects the self-selected group of participants.

Concluding thoughts: MAiD is cultivating human connection

How can we begin to understand this most unique and novel lived experience of being a physician who provides assisted death in Canada? A narrative-hermeneutic approach led us to understand that for the providers we interviewed, this is an embodied existential experience. The act of providing MAiD fostered embodied feelings that came alive as conviction, courage, and compassion. The shared stories revealed a depth of emotion and intimacy, and ultimately we found that the experience of providing MAiD is human connection. We came to recognize something new and yet recognizable. The experience holds a dimension of the existential and provides a way to get closer to the unsayable profoundness that occurs in that space of providing death for a suffering other. And this is important if not crucial in medicine and health care, as shared experiences connect us to what it is to be human, especially at end of life.

Acknowledgements

We express a depth of thanks to the physician participants who trusted us with their storied experience, each embodying humility and compassion, commitment, and courage. We express gratitude to all medical and nurse practitioners who provide this end-of-life care.

Disclosure statement

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Additional information

Funding

The authors disclose receipt of the following financial support for this research: a collaborative grant from the Vancouver Island Health Authority.