“It Made Me Feel Like I Didn’t Know My Own Body”: Patient-Provider Relationships, LGBTQ+ Identity, and End-of-Life Discussions

Purpose: LGBTQ+ individuals experience multiple challenges receiving quality care at the end of life, such as lack of confidence in the healthcare system to address their needs and lack of knowledge about advance care planning. Important gaps remain about the needs of LGBTQ+ individuals in the provider-patient relationship and how critical discussions about the end of life occur or do not occur in that relationship. The purpose of this study is to explore patients’ narratives of their relationship with their provider and their experiences discussing end-of-life care with their providers, among patients who do and do not identify as LGBTQ+. Methods: Twenty-nine attendants of an event devoted to LGBTQ+ health, 15 of which identified as LGBTQ+, completed an altered version of the CAHPS® Patient Narrative Elicitation Protocol. We used inductive content analysis to qualitatively analyze the data. Results: Respondents described wanting to be heard, finding safety and trust, and valuing competency in their relationship with their provider. Respondents who identified as LGBTQ+ additionally 1) valued providers who avoided making assumptions, 2) looked for cues of safety to indicate they would be accepted by the provider, and 3) sought providers competent in LGBTQ+ care needs. Few respondents had discussed end-of-life care with their provider, although some assumed that their provider may or may not be able to meet their needs based on aspects of their provider-patient relationship. Conclusions: Strengthening patient-provider relationships may help improve the care of LGBTQ+ populations, particularly for the end of life.

From Passive Patient to Engaged Partner: My Journey With Parkinson Disease

This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

The included outlaw

This article presents an analysis of Amalie Skram’s 1895 novel Professor Hieronimus, with an emphasis on the seclusion aspect of this patient narrative. In the article, I give a close reading of the novel where I make use of insights from theorists from different disciplines, such as Shoshana Felman, Erving Goffman and Giorgio Agamben. The intent of the analysis, is to show how Skram manages to expose the rigid social categories that characterize the total institution in which the novel’s protagonist, Else Kant, claims to be wrongfully lodged. Through a critical assessment of the institutional hierarchy, both social and medical, Amalie Skram makes her novel well-suited for the type of interdisciplinary readings that in the last couples of decades have expanded and become more accessible, thanks in part to the emergence of the field of literature and medicine. This development grants us the opportunity to revisit the works of the Scandinavian literary canon with a fresh theoretical perspective, where fiction bears the potential to articulate aspects of the patient experience that has yet to be encapsulated by theory. This article shows how this phenomenon includes studies that are not limited to this interdisciplinary field alone, meaning that a complex patient narrative such as Skram’s Professor Hieronimus is accessible to a broader theoretical material as well.

From Passive Patient to Engaged Partner: My Journey With Parkinson Disease (Preprint)

UNSTRUCTURED This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

Re-imagining patient narrative: exploring patient experience of genetic medicine through art practice

I contend that art practice can critique and have an impact on the expectation and form of the patient narrative of genetic medicine, as promoted and experienced in medical contexts, and this is proposed as a contribution to knowledge. My second – methodological – contribution lies in the expansion of autoethnography to include autobiographical art practice to amplify possibilities for insight and new understanding. I construct and reflect upon my patient narrative as an artist and carrier of the CDH1 genetic mutation, associated primarily with Hereditary Diffuse Gastric Cancer. Art practice is proposed as a means of documenting, articulating, and analysing patient experience of genetic diagnosis and preventative surgery. Art works are employed to examine the relation between genetic diagnosis and patient narrative, with attention to the CDH1 genetic mutation. The discourse and structure of patient narrative are considered, questioning if current definitions accommodate the complex relation between genetic diagnosis and patient narrative. I trace the historical emergence of patient narrative (the means by which a selfidentifying patient or family member articulates personal experience of illness), examining dominant ideas in the field of patient narrative: biographical disruption, narrative reconstruction, and the sociologist Arthur Frank’s typologies of illness narrative. I explore Frank’s ideal illness narrative – the quest narrative – in my own quest, led by art practice, to locate my stomach. Contextualising my work in this field, I construct new ways to explore my patient experience through art practice, challenging existing models that fail to reveal what it means to be a patient of genetic medicine. Autoethnography is both a research methodology and outcome, informed by my experience. The work of others enhances my understanding of different approaches to narrative, providing models for addressing patient narrative in a meaningful way. Readings of two films by Jean-Luc Godard, Passion (1982) and Scénario du film ‘Passion’ (1982), and Dora García’s film The Joycean Society (2013) provide a framework for my practical experimentation as I discover narrative elements to explore through production. Recognising the experimental potential of narrative formation, I work with movement, rhythm, reflection, opacity, focus, emplotment, sequence, editing, fragment, sound, staging, framing, light, and documentation, investigating narrative forms – sonic, haptic, performed, embodied, book, digital – and singular, dialogic, and multiple narratives