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Palliative care (PC) faces a workforce crisis. Seriously ill patients surpass the supply of PC cliniciansin their work clinicians face repeated loss and extreme suffering which can have deleterious consequences, such as burnout and attrition. We urgently need interventions that foster thriving communities in this emotionally complex environment. Storytelling represents a promising path forward. In response to widespread loneliness and moral distress among PC clinicians before, during, and after the early months of the COVID-19 pandemic, we created the Palliative Story Exchange (PSE), a storytelling intervention to build community, decrease isolation, and help clinicians rediscover the shared meaning in their work. This paper discusses this novel intervention and initial program evaluation data demonstrating the PSE’s impact thus far.
Methods
Participants voluntarily complete a post-then-pre wellness survey reflecting on their experience.
Results
Thus far, over 1,000 participants have attended a PSE. In the fall of 2022, we began distributing a post-then-pre-evaluation survey. To date, 130 interprofessional participants from practice locations across 10 different countries completed the survey. Responses demonstrate an increase in the connection that participants felt toward their work and the larger palliative care community after attending a PSE. Further, more than half of all free-text responses include terms such as, “meaningful,” “healing,” “powerful,” and “universal,” to describe their participation.
Significance of Results
Training programs and healthcare organizations use the humanities to support clinician wellness and improve patient care. The PSE builds upon this work through a novel combination of storytelling, community co-creation using reflection, and shared meaning making. Initial survey data demonstrates that after attending a PSE, participants feel increased meaning in their work, in the significance of their own stories, and connection with the PC community. Moving forward, we seek to expand our community of practice, host a facilitator leadership course, and rigorously study the PSE’s impact on clinician wellness outcomes.
This chapter examines the relationship between Black literature and anti-Black medical violence. It argues that, since at least the eighteenth century, Black writers have tapped into the narrative and documentary power of Black writing to chronicle and archive the racialized operations of medical violence and its historical attempts to exploit Black bodies. Using literature to spotlight medicine’s role in the global economies of Black embodied terror, these writers have helped to construct an important site of memory that I call the Black medical archive. In doing so, they demonstrate the importance of medicine to the politics and aesthetics of the Black literary tradition, from its origins to the present. Further, they unfurl how Black literature has long been a crucial site for the transformational practices of storytelling that the field of narrative medicine has proffered as a radical intervention into the histories of violence, exploitation, and discrepant care that have informed the practices and epistemologies of modern medicine.
Focusing on illness narratives, this chapter analyses how patient-writers use language to translate the corporeal experience of illness and, in the process, how they express what it means to be ill. In line with the conceptual aims of the critical medical humanities, it does not simply examine the ways in which writing about illness serves as a response to the silencing effect a moment of diagnosis can produce; rather, it analyses the ways in which language is mobilized to communicate the embodied experience of being a patient. The chapter asks how writing about illness in pathographies allows patients to resist ceding control of their experience to the dominance of medical jargon, before analysing the extent to which reading narratives of illness can help patients to understand, and in turn find a linguistic framework to articulate, what it means to be ill.
The parallel chart is a novel medico-literary practice, invented by Dr Rita Charon as part of her creation of narrative medicine. It is a form that both innovates in the domain of medical humanities practice and works to subvert the traditional balances of power in the clinical setting. Despite its widespread inclusion in the repertoire of narrative medical techniques, there has been little consideration of the form’s development in the context of its historical antecedents and the many forms into which it has subsequently evolved. The design and structure of the parallel chart practice inform its goal of training clinicians in narrative competence and bolstering their clinical skills. The practice descends from and innovates upon several notable trends in the history of medical training. The various forms that have evolved from it are utilized as pedagogical tools in a multitude of present-day medical educational and clinical arenas.
The experiences of health and illness, death and dying, the normal and the pathological have always been an integral part of literary texts. This volume considers how the two dynamic fields of medicine and literature have crossed over, and how they have developed alongside one another. It asks how medicine, as both science and practice, shapes the representation of illness and transforms literary form. It considers how literary texts across genres and languages of disease have put forward specific conceptions of medicine and impacted its practice. Taking into account the global, multilingual and multicultural contexts, this volume systematically outlines and addresses this double-sidedness of the literature-medicine connection. Literature and Medicine covers a broad spectrum of conceptual, thematic, theoretical, and methodological approaches that provide a solid foundation for understanding a vibrant interdisciplinary field.
This pilot study aimed to assess the feasibility and impact of a narrative medicine group for patients receiving palliative care.
Methods
This pilot study aimed to assess the feasibility of a six-session, physician-led narrative medicine group for patients receiving palliative care. Ten patients were recruited by their outpatient providers. Symptom severity and patient dignity scores were collected pre-intervention, at the mid-point, and post-intervention using the Patient Dignity Inventory (PDI) and Edmonton Symptom Assessment Survey (ESAS). Qualitative reports of pain, expectations, and anticipated challenges were collected before the intervention. Participant interviews were conducted after the intervention to assess overall experience in the group, challenges experienced, recommendations for future endeavors, and general feedback.
Results
No significant changes in PDI or ESAS scores were observed at baseline, 3 weeks, and 6 weeks. Participants reported overall satisfaction, with 8 of 9 participants stating they “strongly agree” they would participate in the group again and recommend the group to others. Qualitative responses indicated benefits in the realms of relating to other patients, subjective reduction in pain, and relieving feelings of isolation.
Significance of results
A narrative medicine group for ambulatory patients receiving palliative care appeared to be both beneficial and feasible when delivered through a virtual format. A randomized trial with a larger sample is needed to fully assess the impacts of engaging in narrative work on symptom burden, survival, and quality of life.
This is a personal essay about breasts. It focuses on my experiences as a young girl, moving through adolescence to a history of breast cancer in my family, including my mother’s breast cancer diagnosis. As a physician, patient, and wife, I reflect on the choices that I have to make and what this means for my identity as a woman and mother.
In Chapter 6, we first review ideas about how illness disrupts ongoing narratives and how narrative reorganization is required to make sense of illness. We touch on the role of communicating suffering through narrative and how listening to narratives allows healthcare professionals to take the perspective of service users. We then discuss proposals that constructing adaptive narrative identity may be essential in psychotherapy. Following this, we review studies demonstrating that individuals with psychopathology construct their narrative identity with less agency, communion, and positive meaning and that these same features are related to lower well-being. We outline possible relations between trauma, narrative identity, and psychopathology. Finally, we describe relevant studies of first-person perspectives on mental illness and explain how previous research relates to our life story analyses.
In Chapter 15, we described our guide for narrative repair, an intervention developed to explore identity problems arising from mental illness and identity resources for pursuing a good life. The guide is a flexible tool that can be employed as self-help, as structured conversation with close others, and as a therapeutic intervention. The first task includes creating an overview of the life story to be employed as a platform for the other tasks and for identifying potential obstacles to narrative repair. The second task aims to explore and support coping with identity problems arising from mental illness (e.g., fear of the ill self, the negative self, and loss of previous selves). The third task focuses on exploring and reviving the agentic, growing, accepting, and valued selves and bringing them into everyday life. The fourth task consists of constructing a hopeful and realistic future story as well as considering potential routes to reach this recovering self. We suggest that vicarious stories of recovery shared by peer workers may scaffold personal recovery stories. Finally, we discuss how healthcare professionals engaging in narrative repair may deepen their empathy and gain hope by holding on to recovery stories.
This chapter outlines the overall aims and rationale for the book and explains how it differs from two established models in the study of medicine: evidence-based medicine and narrative medicine. It argues that science is inevitably and inextricably embedded in a multitude of narratives told by both scientists and non-scientists and further acknowledges that scientific claims are themselves narratives. Whatever their factual status, scientific statements are ultimately assessed on the basis of people’s lived experience and the values they hold most dear. While accepting that scientific evidence has a key role to play in shaping public policy and should – in an ideal world – be taken seriously by members of the public, the authors argue that it is often mistrusted and/or overridden by considerations that are affective and social in nature. These considerations, in turn, are informed by the narratives to which we are all socialized over many years and in numerous contexts.
End-of-life conversations are a difficult part of medicine. The COVID-19 pandemic has made them simultaneously more necessary and more difficult. Encouraging patients to have these conversations with their own providers and loved ones can help ensure, when the unfortunate time comes, their end-of-life wishes are carried out. This honors the patient and limits burden on others. Here, I reflect on how my personal experience as both a grieving grandson and as a resident physician has emphasized the importance of end-of-life conversations.
We all have the innate ability to tell our story and the way we do it can determine the impact that each problem has on our lives. Storytelling can play a critical role in psychiatric practice and, from this premise, a new way of practicing psychiatry has recently emerged: narrative psychiatry.
Objectives
The objective is to offer a unified vision of narrative psychiatry, providing details on the historical and academic context of this approach.
Methods
A narrative-type literary review focused on narrative psychiatry will be presented.
Results
Narrative psychiatry is an innovative clinical approach in line within narrative medicine and with a specific subtype of postmodern psychotherapy, the narrative therapy of Michael White and David Epston. This novel way of practicing psychiatry arises from critical movements within the discipline but it is an integrative and collaborative perspective: the position of each problem in the patient’s personal narrative is discussed and different therapeutic proposals are addressed, including for instance psychotropic drugs. This integrative posture gives the narrative psychiatrist enough flexibility to equally integrate the scientific achievements of biological psychiatry and the humanizing component of narrative practice. In this literature review, the key tools proposed by the main narrative psychiatrists worldwide for the narrative clinical interview will be exposed.
Conclusions
Narrative psychiatry is a novel approach that narrows the therapeutic relationship and that puts in evidence the history of resistance of the consultant, healing through its own storytelling.
Narrative medicine, a discipline largely built upon literary studies in confluence with healthcare, bridges cultural divides between sufferers and healers and offers a framework for reading and writing illness, person to person and person to text.This chapter discusses Roth's work within this framework, highlighting how his stories of the body – in health, in illness, in pain, in dying – demonstrate radical empathy and humanism.
No co-productive narrative synthesis of system-level facilitators and barriers to personal recovery in mental illness has been undertaken.
Aims
To clarify system-level facilitators and barriers to personal recovery of people with mental illness.
Method
Qualitative study guided by thematic analysis. Data were collected through one focus group, which involved seven service users and three professionals. This group had 11 meetings, each lasting 2 h at a local research institute, between July 2016 to January 2018.
Results
The analysis yielded three themes: barriers inhibiting positive interaction within personal relationship networks, roots of barriers from mental health systems and the social cultural context, and possible solutions to address the roots. Barriers were acknowledged as those related to sense of safety, locus of control within oneself and reunion with self. The roots of barriers were recognised within mental health services, including system without trauma sensitivity, lack of advocacy support and limited access to psychosocial approaches. Roots from social cultural context were also found. There were no narratives relating to facilitators. A possible solution was to address the roots from systems. Social cultural change was called for that makes personalised goals most valued, with an inclusive design that overcomes stigma, to achieve an open and accepting community.
Conclusions
The analysis yielded system-level barriers specific to each recovery process. Roots of barriers that need transformation to facilitate personal recovery were identified within mental health services. Social interventions should be further explored to translate the suggested social cultural changes into action.
This article describes how applying techniques from literary studies and considering patient histories as texts helps me understand and formulate systemic issues in psychiatric assessments. Psychiatrists are not generally taught to pay close attention to aspects of language, including metaphor and syntax, but I argue that paying attention to the form, as well as to the content, of the stories patients bring us, can make us better attuned to the contexts of their needs and distress, and therefore better placed to help.