The Discursive Functions of Deliberative Voting

This study aims to build on Moore and O'Doherty's (2014) proposal to integrate deliberative voting procedures into deliberative processes. Deliberative voting has been proposed to recognize collective endpoints of deliberation and solicit key reasons from participants for supporting (or rejecting) collective decisions. This article further develops the theoretical understanding of the function of embedding voting procedures in deliberative processes. Using discursive psychological analysis, we provide an analysis of transcripts from a public deliberation event on cancer drug funding policy to gain a deeper understanding of the discursive dynamics of deliberative voting. We investigate how participants use deliberative voting as a communication tool to signal three types of disagreement: actual, nuanced, and marginal. We pay particular attention to the role of the facilitator in the deliberative voting process and the role of the voting process in shaping the outputs of the deliberation. Finally, we recommend deliberation practitioners and facilitators should engage in reflexive investigation into how power operates within deliberative voting and deliberation events broadly

Quilting Resistance to the Sleep Industrial Complex : A Narrative Account of Sleeplessness

In this narrative account of sleeplessness, I draw on Ball’s (2002, 2012) poststructural conceptualization of quilts as social texts to explore the practice of quilting as a method of arts-based storytelling. Through the process of quilting, I story my experience of resisting the Sleep Industrial Complex. I explore the biocultural arena of sleep and critique the biomedical construction of sleeplessness as insomnia. I argue that the medicalization of sleeplessness works to support multi-billion-dollar industries that purport to cure insomnia through consumerism (Barbee et al., 2018; Williams, 2008). I describe how radically accepting sleeplessness as a facet of my existence, and not a medicalized disorder, is an expression of self-acceptance and an act of self-care. In this arts-based narrative account of sleeplessness, I mark the transition from viewing sleeplessness as a medical disorder to radically accepting sleeplessness as a natural facet of our complex being-in-the-world

Improving end-of-life conversations in the post-MAiD era

Legalizing medical assistance in dying (MAiD) has transformed how palliative and hospice care providers (PHCPs) engage in end of life conversations with patients and their loved ones. We do not currently know how PHCPs in the Toronto area have experienced this tremendous shift, and what challenges they have faced in transforming their practice to accommodate MAiD conversations. We must understand the unique challenges faced by PHCPs so that we can improve the education, resources, and supports available to these essential healthcare providers. We also must ensure that Canadians receive the highest quality care at the end of life, whether or not they choose to pursue a medically assisted death. To examine these unique challenges, I interviewed 22 PHCPs to document their experiences of engaging in end-of-life conversations in the post-MAiD era. Participants included physicians, nurses, social workers, and other allied health professionals employed in faith-based and secular institutions. Their personal beliefs about MAiD varied widely; some identified as conscientious objectors, while others actively engaged in MAiD assessment and provision. Initial thematic analysis revealed that challenges include translating the federal legislation into medical practice; navigating inefficient institutional policies and role ambiguity; developing conversation techniques to share MAiD information with patients and families in a balanced way that is informative yet uncoercive; and, navigating the ethical and organizational issues that arise when patients with declining capacity pursue MAiD. Finally, PHCPs shared personal experiences of burnout, emotional weight, and stigma. Understanding how these factors impact the work and lives of PHCPs allows us to develop targeted strategies to improve the institutional policies surrounding MAiD conversations, referrals, and procedures, as well as decrease the negative personal and emotional consequences of engaging in end-of-life conversations in the post-MAiD era

Turning intimate spaces into digital classrooms: Public health students’ experiences of learning and doing critical qualitative research in pandemic times

Throughout the COVID-19 pandemic, burgeoning health researchers have been tasked with learning how to conduct critical qualitative health research from the intimate spaces of their homes. In this presentation, we, three public health students, highlight our experiences as learners and doers of critical qualitative methods to demonstrate the challenges and triumphs that co-exist with pursuing our academic goals during a global pandemic.  We employ a critical, reflexive narrative approach to storying our experiences of learning and practicing critical qualitative health research methods from the (dis)comfort of our homes during the pandemic. Using diverse theoretical lenses, including embodiment and poststructuralism, we story our experiences of navigating the blurry boundaries created by our necessary participation in the digital world. We construct and present these stories using arts-based qualitative research methods that were introduced to us in our courses and readings through the Centre for Critical Qualitative Health Research. Stitching together words to create poetry, fabric to construct a quilt, and pictures and writing to articulate experiences, these stories explore how the transformation of our intimate space into an academic and research space impacts the experience of learning to be a critical qualitative health researcher. David uses creative analytic writing practices through memos and journals, paired with photography, to express his experience as a learner. He draws on embodiment, attuning himself to the body to better understand his experiences. Through the medium of poetry, Madison grapples with the reality of being a digital student - letting her anxieties, curiosities, and questions stumble out to make sense of her virtual self. Finally, Kristie uses quilting to construct a material representation of the Zoom experience, exploring the intimacy and alienation of the digital classroom. Through our stories, we hope to create space to deeply consider what it means to be an online learner and an online being. Through these three interwoven stories, we expose our vulnerabilities to carve out space to reflect on our needs and desires to thrive in digital learning environments.

Unacknowledged Pain and Disenfranchised Grief: A Narrative Analysis of Physical and Emotional Pain in Complex MAiD Bereavement Stories

ABSTRACTBackground Pain can influence an individual’s choice to pursue medical assistance in dying (MAiD) and may also influence how family members experience that decision. Family conflict or discordance surrounding a loved one’s MAiD decision can cause unique challenges affecting grief and bereavement, including disenfranchised grief. There is limited knowledge of how individuals with complex MAiD bereavement experiences describe the role of physical and emotional pain in their bereavement stories.Aims This article explores the role of physical and emotional pain in the stories of family members with complex MAiD bereavement and identifies opportunities to improve care for individuals and families experiencing disagreement around MAiD.Methods We conducted qualitative interviews and utilized a narrative and ethics of care approach to analyze the data.Results We conducted N = 12 narrative interviews with participants in three provinces: Ontario, British Columbia, and Alberta. Descriptions of physical pain were used to justify the morality, or immorality, of MAiD in the context of patient suffering. Emotional pain described experiences where participants’ feelings about MAiD went unacknowledged by their family or friends, institutions, and sociopolitical environments. We conceptualize this unacknowledged emotional pain as disenfranchised grief and make recommendations to improve care for individuals experiencing complex MAiD bereavement.Conclusions Experiences of physical and emotional pain leave a lasting impact on family members with complex MAiD bereavement. Health care professionals should continue to improve care for family members following MAiD, especially where there is disagreement or family conflict

News Media Representations of Responsibility for Alcohol-Related Liver Disease Requiring Liver Transplantation

Alcohol-related liver disease (ARLD) is a common indication for liver transplantation yet it is considered ethically controversial in academic, clinical and public discourses. Various social groups consider people with ARLD as personally responsible for their condition and question whether they should have access to a scarce resource. How the news media constructs responsibility for ARLD may influence public opinions toward those who are ill as well as related healthcare policies. Since the organ transplantation system relies on the willingness of individuals to donate organs, understanding how the media portrays controversial issues is a matter of vital importance for public health and health policy. We investigated how responsibility for ARLD requiring liver transplantation is presented for public consumption in the news media. Using a keyword search of two online news databases, we selected 81 articles from the United Kingdom, Canada and the United States. We analyzed the articles using a discursive psychological approach. We found that the news media ascribed responsibility for ARLD to three main actors: individuals with ARLD, biological predisposition, and policy and industry representatives. How responsibility for ARLD requiring liver transplantation is presented in the news media may have implications for people diagnosed with other substance-related disorders who present for transplant candidacy or are on the transplant waiting list. Investigating how responsibility for ARLD is constructed in news media may provide insights into how responsibility is understood in other stigmatized health conditions and its potential implications for population health equity.Les maladies hépatiques liées à l’alcool (MHLA) sont une indication courante pour la transplantation du foie, mais elles sont considérées comme éthiquement controversées dans les discours universitaires, cliniques et publics. Divers groupes sociaux considèrent les personnes atteintes d’une MHLA comme personnellement responsables de leur état et se demandent alors si elles devraient avoir accès à une ressource rare. La manière dont les médias d’information établissent la responsabilité de la MHLA peut influencer l’opinion publique à l’égard des personnes malades ainsi que les politiques de santé qui s’y rapportent. Étant donné que le système de transplantation d’organes repose sur la volonté des individus à donner leurs organes, comprendre comment les médias présentent les questions controversées est une question d’importance vitale pour la santé publique et les politiques de santé. Nous avons donc étudié la manière dont la responsabilité des personnes souffrant de MHLA nécessitant une transplantation de foie est présentée au grand public dans les médias d’information. En utilisant une recherche par mot-clé dans deux bases de données d’information en ligne, nous avons sélectionné 81 articles du Royaume-Uni, du Canada et des États-Unis. Nous avons analysé les articles en utilisant une approche psychologique discursive. Notre analyse révèle que les médias d’information attribuent la responsabilité des MHLA à trois acteurs principaux : les individus ayant une MHLA, les prédispositions biologiques et les représentants des politiques et de l’industrie. Elle révèle également que la manière dont la responsabilité des MHLA nécessitant une transplantation de foie est présentée dans les médias peut avoir des implications pour les personnes diagnostiquées avec d’autres troubles liés à la consommation qui se présentent pour une candidature à une transplantation ou qui sont sur la liste d’attente de transplantation. Enfin, cette étude peut aussi nous donner une idée sur la manière dont le concept de responsabilité est compris pour d’autres maladies stigmatisées ainsi que ses implications potentielles sur l’équité en matière de santé des populations

Medical assistance in dying legislation: Hospice palliative care providers’ perspectives

BackgroundAfter over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society.ObjectiveTo describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying.DesignIn this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers.Participants and settingMulti-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying.Ethical considerationsThe research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms.ResultsThe 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics.ConclusionWhile being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying

How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers

BackgroundMore than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment.AimTo explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers.DesignQualitative thematic analysis of semi-structured interviews.ParticipantsForty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto (n = 22) were interviewed in person or by phone. Participants included physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health professionals (n = 4).ResultsQualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions.ConclusionMedical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care