Marjolein Gysels1, Charles C Reilly2, Caroline J Jolley3, Caty Pannell2, Femke Spoorendonk2, John Moxham3, Claudia Bausewein4, Irene J Higginson2. 1. Department of Palliative Care, Policy & Rehabilitation, King's College London, Cicely Saunders Institute, London, UK; Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands. Electronic address: mhgysels@gmail.com. 2. Department of Palliative Care, Policy & Rehabilitation, King's College London, Cicely Saunders Institute, London, UK. 3. Department of Asthma, Allergy and Respiratory Science, King's College London, London, UK; Respiratory Medicine, King's College Hospital NHS Foundation Trust, London, UK. 4. Department of Palliative Care, Policy & Rehabilitation, King's College London, Cicely Saunders Institute, London, UK; Department of Palliative Medicine, University Hospital Munich, Munich, Germany.
Abstract
CONTEXT: Dignity is poorly conceptualized and little empirically explored in end-of-life care. A qualitative evaluation of a service offering integrated palliative and respiratory care for patients with advanced disease and refractory breathlessness uncovered an unexpected outcome, it enhanced patients' dignity. OBJECTIVES: To analyze what constitutes dignity for people suffering from refractory breathlessness with advanced disease, and its implications for the concept of dignity. METHODS: Qualitative study of cross-sectional interviews with 20 patients as part of a Phase III evaluation of a randomized controlled fast-track trial. The interviews were transcribed verbatim, imported into NVivo, and analyzed through constant comparison. The findings were compared with Chochinov et al.'s dignity model. The model was adapted with the themes and subthemes specific to patients suffering from breathlessness. RESULTS: The findings of this study underscore the applicability of the conceptual model of dignity for patients with breathlessness. There were many similarities in themes and subthemes. Differences specifically relevant for patients suffering from severe breathlessness were as follows: 1) physical distress and psychological mechanisms are interlinked with the disability and dependence breathlessness causes, in the illness-related concerns, 2) stigma is an important component of the social dignity inventory, 3) conditions and perspectives need to be present to practice self-care in the dignity-conserving repertoire. CONCLUSION: Dignity is an integrated concept and can be affected by influences from other areas such as illness-related concerns. The intervention shows that targeting the symptom holistically and equipping patients with the means for self-care realized the outcome of dignity.
CONTEXT: Dignity is poorly conceptualized and little empirically explored in end-of-life care. A qualitative evaluation of a service offering integrated palliative and respiratory care for patients with advanced disease and refractory breathlessness uncovered an unexpected outcome, it enhanced patients' dignity. OBJECTIVES: To analyze what constitutes dignity for people suffering from refractory breathlessness with advanced disease, and its implications for the concept of dignity. METHODS: Qualitative study of cross-sectional interviews with 20 patients as part of a Phase III evaluation of a randomized controlled fast-track trial. The interviews were transcribed verbatim, imported into NVivo, and analyzed through constant comparison. The findings were compared with Chochinov et al.'s dignity model. The model was adapted with the themes and subthemes specific to patients suffering from breathlessness. RESULTS: The findings of this study underscore the applicability of the conceptual model of dignity for patients with breathlessness. There were many similarities in themes and subthemes. Differences specifically relevant for patients suffering from severe breathlessness were as follows: 1) physical distress and psychological mechanisms are interlinked with the disability and dependence breathlessness causes, in the illness-related concerns, 2) stigma is an important component of the social dignity inventory, 3) conditions and perspectives need to be present to practice self-care in the dignity-conserving repertoire. CONCLUSION: Dignity is an integrated concept and can be affected by influences from other areas such as illness-related concerns. The intervention shows that targeting the symptom holistically and equipping patients with the means for self-care realized the outcome of dignity.
Authors: Keith Zi Yuan Chua; Elaine Li Ying Quah; Yun Xue Lim; Chloe Keyi Goh; Jieyu Lim; Darius Wei Jun Wan; Simone Meiqi Ong; Chi Sum Chong; Kennan Zhi Guang Yeo; Laura Shih Hui Goh; Ray Meng See; Alexia Sze Inn Lee; Yun Ting Ong; Min Chiam; Eng Koon Ong; Jamie Xuelian Zhou; Crystal Lim; Simon Yew Kuang Ong; Lalit Krishna Journal: BMC Palliat Care Date: 2022-07-04 Impact factor: 3.113