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

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.

Experiences of grief-bereavement after a medically assisted death in Canada: Bringing death to life.

Medical assistance in dying (MAiD) legislation was passed in Canada in 2016, yet the bereavement experience of family and friends is not well understood. Using interpretive description, we interviewed nine bereaved individuals. The time before the assisted death seems most impactful-an experience of bringing death to life shapes bereavement after death. We identified themes that inform this grieving: (1) certainty of date/time of death-intensifies a parade of lasts, initiates a countdown and affords time to say good-bye; (2) active family engagement as planners supports sense-making; and (3) enacting MAiD as ceremony slows time to "digest" loss.

Rediscovering the art of medicine, rewards, and risks: Physicians' experience of providing medical assistance in dying in Canada.

BACKGROUND: Medical assistance in dying opens up uncharted professional territory for Canadian physicians extending their practices to include assisting and hastening death for eligible patients. OBJECTIVES: To understand physicians' experience of participating in assisted dying and the emotional and professional impact. METHODS: An interpretive descriptive methodology and thematic analysis were used for this research. We interviewed eight physicians engaged in assessing and providing medical assistance in dying. Data were collected through audio taped, semi-structured interviews in person or by phone. RESULTS: Three overarching themes included (1) rediscovering the art of medicine, (2) unexpected rewards, and (3) negotiating risks and challenges. Each theme has accompanying sub-themes. CONCLUSION: Medical assistance in dying is markedly different from other physicians' practices in that it has an enriched capacity for caring. The process brings deep satisfaction characterized by intimate, personalized contact with patients and families. The professional rewards of providing medical assistance in dying outweigh the challenges, offering an alternative narrative to more publicly accepted views of assisting someone to die.

Medically Assisted Dying in Canada: "Beautiful Death" Is Transforming Nurses' Experiences of Suffering.

BACKGROUND: Nurses witness pain and distress up close and consequently experience their own suffering. A narrative study of Canadian nurses' participating in medical assistance in dying found nurses' previous witnessing of unresolved end-of-life suffering has shaped their acceptance of medical assistance in dying. Little is known about the impact of participating in medically assisted dying on nurses' suffering. PURPOSE: To explore how nurses' overall experience of suffering is shaped by participating in medical assistance in dying. METHODS: Qualitative secondary analysis using narrative inquiry and thematic analysis. RESULTS: Nurses' narratives are chronologically organized addressing experiences of suffering before medical assistance in dying was a legal option and after its implementation. An overarching narrative before the availability of medical assistance in dying is (1) a culture of nurses' taken-for-granted suffering: feeling terrible. After medical assistance in dying, two key narratives describe (2) transformational feelings of a beautiful death and (3) residual discomfort. Nurses found their suffering transformed when participating in medical assistance in dying; end-of-life care was satisfying and gratifying. And yet, unanswered questions due to worries of becoming desensitized and ongoing deeper questioning remain. CONCLUSIONS: Participating in medical assistance in dying has positively impacted nurses and starkly contrasts their previous experiences caring for those with unbearable suffering. Further research is needed to explore becoming desensitized and long-term emotional impact for nurses.

Holding Secrets While Living With Life-Threatening Illness: Normalizing Patients' Decisions to Reveal or Conceal.

Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank's dialogical narrative analysis and Riesman's inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting-isolating, protecting-harming, and empowering-imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person's right to take the lead in revealing or concealing their health and illness experience.

Cultivating Compassion: The Practice Experience of a Medical Assistance in Dying Coordinator in Canada.

Accessing medical assistance in dying (MAiD) became legal in Canada in June, 2016. This marks a unique time in our history, as eligible persons can now opt for an assisted death and health care professionals can be involved without criminal repercussion. I used an autoethnographic approach to explore and describe my experience of implementing and coordinating a new MAiD program in a local health authority. Part I is a self-reflexive narrative based on journal entries about my immersion in this practice role over a 6 month period. In Part II, I share five emergent storylines: coming to the role (the calling), embodiment (becoming the face of), immersion in clinical practice, interactions with those seeking MAiD, and self survival (sense making). The created story and storylines shine a light on new ethical practice realities, enhance understanding about MAiD as it continues to unfold, and hopefully inspire human centered, compassionate care.

Medical assistance in dying (MAiD): Canadian nurses' experiences.

Medical assistance in dying (MAiD) represents a historic change in Canadian society and the provision of end-of-life care. In this descriptive narrative inquiry, 17 nurses were interviewed during the first 6 months of assisted dying becoming a legal option for patients in Canada. Nurses' experiences of either providing care for a patient who had chosen MAiD, or declining to participate in MAiD, were explored. Findings describe three themes and eight storylines of the impact of MAiD on nurses' view of the profession, clinical practice, and personally. While most nurses perceived MAiD as an extension of the profession and their nursing practice, a small number also expressed moral distress as they grappled with assisted dying. Narratives illustrated an ongoing sensemaking process and spectrum of emotions. These findings offer insight and provide direction for nurses and managers in this new clinical and legal reality. Further research is needed to understand more fully the moral distress of some nurses, as well as the importance of communicating openly and nonjudgmentally with patients, families, and the health-care team.

Exploring the Effectiveness of Multisource Feedback and Coaching with Nurse Practitioners.

BACKGROUND: While multisource feedback and coaching have shown promise as effective professional development strategies for physicians, the effectiveness of these interventions with nurse practitioners - a growing profession in Canada - remains unknown. Despite this knowledge gap, multiple nursing colleges in Canada require their nurse practitioner members to participate in multisource feedback processes. METHODS: An exploratory study was performed with twelve nurse practitioners using an online multisource feedback process (based on the CanMEDS Framework) and an in-person coaching session (using the R2C2 Model). Participants were surveyed immediately post intervention and two months later. Perspectives of the coaches and process coordinators were also assessed. RESULTS: Nearly all participants reported that the intervention was valuable for their professional development, and 63% reported they changed an aspect of their practice because of participating. However, the majority of participants reported difficulty finding colleagues who could provide them with valid feedback. This was because of the independent nature of their practice. CONCLUSIONS: Multisource feedback and coaching show promise as effective professional development strategies for nurse practitioners who work in collaborative practices. Further research is needed to confirm these exploratory findings.

Medical Assistance in Dying (MAiD): Ten Things Leaders Need to Know.

The provision of MAiD will be in flux for a few years, as legislative challenges are underway. This article addresses what leaders need to know and do to support nurses today and in the future regarding care of patients choosing MAiD. Drawing on complexity leadership theory and research into nurses' experiences in caring for persons choosing MAiD, we share 10 simple yet foundational things a leader must know. Underpinning our key messages are current evidence and familiar nursing concepts such as end-of-life care, death trajectories, conscientious objection, scope of practice, ethics, sense-making and care cultures. These key messages are embedded in a framework of leadership practices where attention to inter-relationships, emergence and innovation are highlighted. They provide nurse leaders with concrete actions to inspire a team dynamic for creating inclusive cultures of quality care. Leadership is needed across healthcare settings where MAiD is being enacted.

Storylines of aging with HIV: shifts toward sense making.

Aging with HIV is a new phenomenon. It is expected that by 2015, approximately half of adults living with HIV in the United States will be age 50 and older. We used narrative inquiry to explore how older adults with HIV storied their experience and made sense of aging. Over a 3.5-year period, we interviewed 5 older adults living with HIV for 13 to 24 years. In analyzing the coconstructed stories, we identify six storylines that enhance understanding and guide listening: embodiment of the illness, sense making, death and loss, secrets and stigma, identity, and seeking connection. We theorize that the degree to which one reconciles each storyline influences how well one lives with illness. We share a storied exemplar to illustrate these storylines in one participant's experience of aging with HIV. These findings emphasize how vital is telling one's illness story, because sense making happens in the telling.

Cultivating a narrative sensibility in nursing practice.

Stories hold meaning, and when persons tell of their experiences of living with illness, they are afforded an opportunity to make sense of all that is happening. As nurses, we have the privilege of hearing the particular, gaining understanding, and creating a powerful encounter that has healing and health benefits. This is a call for nurses to more intentionally invite and listen to the stories of persons living with illness. The mnemonic STORIED is offered to help nurses weave together essential elements of a narrative practice approach: Subjective, Tell/Listen, Openness, Reflection, Invite/Intention, Engage, and Document. Nurses are the voice of the vulnerable, and to learn to listen to our patients' stories such that what is gleaned contributes to their healing is nothing less than a call to excellent care of the unique person before us.

Stories of liminality: living with life-threatening illness.

PURPOSE: The purpose of the study is to examine liminal experiences of living with the uncertainty of life-threatening illness. Increasing numbers of people with life-threatening illness live in-between the promise of treatment and the threat of recurrence or progression of disease, and yet this experience is not well understood. DESIGN: A narrative inquiry methodology within a constructionist frame was used. METHOD: Semistructured in-depth interviews were conducted with 32 participants from three populations of interest: (a) 10 people living with cancer, (b) 13 people with chronic renal disease, and (c) 9 people living with HIV/AIDS. FINDINGS: An overarching theme of "pervasive liminality" and four narratives are identified: storying into fear(lessness), being alive but not living; knowing and not knowing, and the (in)visibility of disease. CONCLUSIONS: Over time, living with a life-threatening illness produces complex and paradoxical experiences that do not easily fit within familiar categories of experience. Findings highlight pervasive liminal experiences as in-between narratives that are neither problematic nor need to be resolved, and endure over time.

Shadows and Sunshine: What Metaphors Reveal about Aging with HIV.

Using narrative inquiry, the researchers interviewed 5 older adults on 5 occasions over a period of 3.5 years about their experiences of aging with HIV. The participants' stories were analyzed for metaphors. Individual metaphors reveal a complex, unique struggle: living between tensions of uncertainty and hope, facing death and living in the moment, and suffering hurt amidst the joys of evolving identity. The tensions are fluid, although time and life experience facilitate a shift towards reconciliation. An overarching metaphor across this group of survivors is shadows and sunshine: to survive and live in a fragile state, balancing multiple shadows such as stigma and side effects with joyful experiences of support and belonging. The findings suggest that when nurses invite stories of life experience and listen for language used, they build compassion and gain understanding of what support is most needed to honour the personhood of older adults who are HIV-positive.

Utilisant une approche axée sur l'enquête narrative, les chercheuses ont réalisé des entrevues auprès de cinq aînés, à cinq reprises, sur une période de 3,5 années. Les entrevues portaient sur leurs expériences en tant que personnes vieillissantes vivant avec le VIH. Les récits des participants ont fait l'objet d'une analyse en vue de relever les métaphores. Les métaphores individuelles révélaient une lutte complexe et unique issue de tensions provoquées par le fait de vivre de l'in certitude et de l'espoir, de côtoyer la mort, de vivre dans l'instant présent et d'éprouver une souffrance parmi les joies découlant d'une identité en évolution. Les tensions sont fluides, bien que le temps et le vécu facilitent un virage vers une réconciliation. Une métaphore commune présente dans le groupe de survivants était celle de l'ombre et de la lumière, qui traduisait l'expérience de survivre et de vivre dans un état de fragilité, de composer avec plusieurs côtés sombres, comme le stigmate et les effets secondaires, et de vivre des expériences heureuses, comme le soutien et le sentiment d'appartenance. Les résultats de l'étude indiquent que les infirmières qui invitent les patients à partager leur vécu et qui portent attention au langage utilisé acquièrent un sentiment de compassion et comprennent davantage le type de soutien qu'elles doivent dispenser pour honorer l'identité individuelle des aînés séropositifs.

Lessons learned about art-based approaches for disseminating knowledge.

AIM: To present a case example of using an arts-based approach and the development of an art exhibit to disseminate research findings from a narrative research study. BACKGROUND: Once a study has been completed, the final step of dissemination of findings is crucial. In this paper, we explore the benefits of bringing nursing research into public spaces using an arts-based approach. DATA SOURCES: Findings from a qualitative narrative study exploring experiences of living with life-threatening illnesses. REVIEW METHODS: Semi-structured in-depth interviews were conducted with 32 participants living with cancer, chronic renal disease, or HIV/AIDS. Participants were invited to share a symbol representing their experience of living with life-threatening illness and the meaning it held for them. DISCUSSION: The exhibit conveyed experiences of how people story and re-story their lives when living with chronic kidney disease, cancer or HIV. Photographic images of symbolic representations of study participants' experiences and poetic narratives from their stories were exhibited in a public art gallery. The theoretical underpinning of arts-based approaches and the lessons learned in creating an art exhibit from research findings are explored. CONCLUSION: Creative art forms for research and disseminating knowledge offer new ways of understanding and knowing that are under-used in nursing. IMPLICATIONS FOR PRACTICE/RESEARCH: Arts-based approaches make visible patients' experiences that are often left unarticulated or hidden. Creative dissemination approaches such as art exhibits can promote insight and new ways of knowing that communicate nursing research to both public and professional audiences.

Metaphors and medication: understanding medication use by seniors in everyday life.

The purpose of this study was to explore the use of metaphor by independent seniors taking medication for chronic health conditions. Narratives from a larger study using grounded theory were analyzed using constant comparative analysis and induction. A secondary analysis of the narratives of 21 participants was undertaken. Transcripts were read line-by-line and all relevant language was highlighted and reviewed with the aim of identifying relationships and themes. The narratives revealed a diverse range of metaphoric language. Four categories were identified: being shackled, hope, external authority, and communication fears. Three additional themes were interwoven into the narratives: aging and death, medication personified, and the body as object. The authors conclude that metaphor reveals the tension and unresolved dilemmas faced by seniors with regard to medication use.

Perceptions regarding death and dying of individuals with chronic kidney disease.

This research explores perceptions regarding death and dying among people with chronic kidney disease. The methodology for the study was narrative inquiry informed by social constructivism. In-depth narrative interviews were conducted on two occasions with 14 participants. The participants included 10 men and 4 women (mean age of 66) who were treated in a mid-size Canadian city. Four themes relating to death and dying emerged from the data: awareness of death as a consequence of kidney failure, close calls, contemplation of suicide and/or withdrawal from dialysis, and preparing for death while living life. From the findings, it appeared that participants were very aware of the risk of dying from their illness, experienced serious health crises, and planned for their deaths. They were comfortable in discussing death and dying and acknowledged withdrawal from dialysis as an option.

People living with serious illness: stories of spirituality.

AIMS AND OBJECTIVES: To examine stories of spirituality in people living with serious illness. BACKGROUND: Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples' beliefs and perspectives relating to spirituality where there is a diagnosis of a serious chronic and life-limiting illness. DESIGN OF THE STUDY: A social constructionist approach to narrative inquiry was used. METHODS: In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women. RESULTS: The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language. CONCLUSIONS: The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term 'spirituality'. RELEVANCE TO CLINICAL PRACTICE: Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual's declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories.

Medication use in the context of everyday living as understood by seniors.

Recognizing that older adults are among the biggest consumers of medication, and the demographic group most likely to suffer an adverse drug reaction (ADR), this paper details the findings from a recent study on how older adults come to understand medication and its related use. Using a qualitative content analysis method, semi-structured interviews were conducted with 21 individuals from British Columbia, Canada. Study participants ranged in age from 65 to 89 years (male=9, female=11). Using NVIVO(®) 7 software, data were subjected to comparative thematic content analysis in an effort to capture the role of medication use in the context of everyday living as understood by older adults. While there was variability in how older adults come to understand their medication use, an overarching theme was revealed whereby most participants identified their prescription medications as being life-sustaining and prolonging. Deeper thematic content analysis of participant narratives drew attention to three key areas: (A) medications are viewed as a necessary, often unquestioned, aspect of day-to-day life (B) a relationship is perceived to exist between the amount of medications taken and ones current state of health (C) the overall medication experience is positively or negatively influenced by the doctor patient relationship and the assumption that it is the physicians role to communicate medication information that will support everyday living. The article concludes that medical authority and the complexities surrounding medication use need to undergo significant revision if community dwelling older adults are to experience greater success in safely managing their health and medication-related needs.