Carmen Borrat-Besson1, Sarah Vilpert1,2, Ralf J Jox3,4, Gian Domenico Borasio3, Jürgen Maurer5. 1. Swiss Centre of Expertise in the Social Sciences (FORS), University of Lausanne, Lausanne, Switzerland. 2. Faculty of Biology and Medicine (FBM), University of Lausanne, Lausanne, Switzerland. 3. Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland. 4. Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland. 5. Faculty of Business and Economics (HEC), University of Lausanne, Lausanne, Switzerland.
Abstract
BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.
BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.
Authors: Karen E Steinhauser; Elizabeth C Clipp; Hayden B Bosworth; Maya McNeilly; Nicholas A Christakis; Corrine I Voils; James A Tulsky Journal: Palliat Support Care Date: 2004-03
Authors: Rebecca L Sudore; Hillary D Lum; John J You; Laura C Hanson; Diane E Meier; Steven Z Pantilat; Daniel D Matlock; Judith A C Rietjens; Ida J Korfage; Christine S Ritchie; Jean S Kutner; Joan M Teno; Judy Thomas; Ryan D McMahan; Daren K Heyland Journal: J Pain Symptom Manage Date: 2017-01-03 Impact factor: 3.612