The Illness Narratives: Suffering, Healing and the Human Condition

Objectives Patients with advanced disease sometimes express a wish to hasten death (WTHD) In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic Setting Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA Participants Studies of patients with life-threatening conditions that had expressed the WTHD Design The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by France et al  Quality assessment was done using the Critical Appraisal Skills Programme checklist Results 14 studies involving 255 participants with life-threatening illnesses were identified Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life Conclusions The WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients

https://bmjopen.bmj.com/content/bmjopen/7/9/e016659.full.pdf

Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

The Relationship Between Poor Quality of Life and Desire to Hasten Death: A Multiple Mediation Model Examining the Contributions of Depression, Demoralization, Loss of Control, and Low Self-worth

Given the automatization of care and rationing of time and staff due to economic imperatives, often resulting in dehumanized care, the concept of ‘humanization of care’ has been increasingly discussed in the scientific literature. However, it is still an indistinct concept, lacking well-defined dimensions and to date no literature review has tried to capture it. The objectives of this systematic review were to identify the key elements of humanization of care by investigating stakeholders’ (patients, patients’ caregivers, healthcare providers) perspectives and to assess barriers and strategies for its implementation. We carried out a systematic search of five electronic databases up to December 2017 as well as examining additional sources (e.g., gray literature). Search terms included “humanization/humanisation of care” and “dehumanization/dehumanisation of care”. We conducted a thematic synthesis of the extracted study findings to identify descriptive themes and produce key elements. Of 1327 records retrieved, 14 full-text articles were included in the review. Three main areas (relational, organizational, structural) and 30 key elements (e.g., relationship bonding, holistic approach, adequate working conditions) emerged. Several barriers to implementation of humanization of care exist in all areas. Our systematic review and synthesis contributes to a deeper understanding of the concept of humanization of care. The proposed key elements are expected to serve as preliminary guidance for healthcare institutions aiming to overcome challenges in various forms and achieve humanized and efficient care. Future studies need to fully examine specific practices of humanized care and test quantitatively their effectiveness by examining psychosocial and health outcomes.

/pdf/humanization-of-care-key-elements-identified-by-patients-5c08tkynjc.pdf

Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review.

This thesis is concerned with the challenges of devising a full-masked theatre performance that is largely accessible to audiences of every age, social background and culture. The study is original and contributes to knowledge in two distinct ways; it is to this researcher’s knowledge the only such research that examines the relationship between the devising processes of a full-masked performance, neurobiology, human ethology and the accessibility of audience reception (Bennett, 1994). Secondly, this is the first study to investigate how universal innate neurological processes can be used in the making and reception of stage performance to help ensure wide accessibility of information and meaning. The thesis addresses the concept of accessibility by taking a phenomenological approach to devising and audience reception, with particular focus on the role of neurobiological systems and structures, in particular the mirror neuron system, the pleasure-reward system, and pattern recognition systems, in the communication and reception of performance meaning (McConachie, 2008). The research is framed by the concept of a universal theatrical language proposed by practitioners Peter Brook and Tadeshi Suzuki, which has the potential to connect people ‘at the deepest levels of their humanity’ (Pavis, 1996: 6). Practical approaches adopted in the research are informed and supported by anthropological and human ethological claims of universality (Ekman, 1975; Brown, 1991; Eibl-Eibesfeldt; 2007 [1989]; Schmitt et al. 1997). This thesis theorizes that human beings possess innate neurobiological systems that interact with culturally specific concepts, conditions and knowledge in such a way that when deployed appropriately, these innate neurobiological systems can be a platform for human cognition and for the designing of performances accessible to an audience of different ages, social backgrounds and cultures. It also proposes that innate neurobiological systems create a universal framework that makes it possible for the said broad-based audience to read and receive a performance using similar codes of cognition and aesthetic reference irrespective of age, social and cultural backgrounds. The research process led to the creation of an original full-masked theatrical performance and eighteen performances of this piece were given to different audiences in a range of venues and locations in Northamptonshire. Qualitative and quantitative data analysis of how the various audiences received the performance suggest that the devising methods employed did contribute to making the performance accessible to an audience with a ‘broader constituency than theaters normally envision’ (Pitts-Walker, 1994: 9-10). This research enables practitioners for whom a wide audience and accessibility are an explicit focus to adopt devising approaches that will help to achieve the desired wide-ranging reception and accessibility in mixed audiences irrespective of race, age, gender and culture.

Accessible theatre: the application of human ethology and innate neurobiological systems to full-masked devised theatre practice

Background
Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.

/pdf/patient-perspectives-of-dignity-autonomy-and-control-at-the-1b67ahf4mw.pdf

Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography.

The moving body

El ojo y el espíritu

The physical body and the lived body are not two separate realities, but rather they represent two distinct aspects of the same corporeal experience phenomenologically described. This fundamental experience of embodiment could take at least two paths: a) the first is an upward direction, which involves the development of the possibilities of movement, action and expression of the body in all its plenitude; b) the other direction, in contrast with the former, takes a downward path, and is concerned with the experience of pain, of limitation, of the bodily resistance which is experienced as oposition to one’s own will: it is the vulnerable body. Here a new dualism reappears: the poetic body of expression and art versus the vulnerable body of illness and pain. My contribution aims at questioning the idea that the poetic body of artistic expression and the vulnerable body of ageing, of disability or of illness belong to two quite separate spheres. With this purpose in mind, I shall highlight the multiple points of intersection between both perspectives, and argue that such intersections may serve as interesting starting points of departure for interdisciplinary research work.

/pdf/poetica-del-movimiento-corporal-y-vulnerabilidad-una-3u08eiwr1t.pdf

Poética del movimiento corporal y vulnerabilidad: una reflexión desde la fenomenología de la enfermedad

In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective.

Xavier Escribano

Papers

Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography.

The moving body

El ojo y el espíritu

Poética del movimiento corporal y vulnerabilidad: una reflexión desde la fenomenología de la enfermedad

A Philosophical View on the Experience of Dignity and Autonomy through the Phenomenology of Illness.