This conceptual article examines social movement organizations (SMOs) organizing around end-of-life care from the perspective of the ethics of care and vulnerability. It explores how vulnerability holds meaning both as an object of care and as a catalyst for SMO agency, particularly in movements advocating for equitable access to palliative care from a human rights perspective. I aim to synthesize previous research and conceptualize the intersections between SMOs and care ethics in the context of end-of-life care. The theoretical synthesis presents three themes for further research: (1) a conceptual framework of care ethics in studying the hospice movement as a SMO, which embodies care as both ethos and praxis; (2) vulnerability as an object of care and how to reduce harm through caring agency; (3) how perceived or experienced vulnerability can serve as a catalyst for agency. The article proposes a preliminary conceptual framework that suggests that SMOs have a caring agency in organizing around end-of-life care as an alteration movement. SMO participants seek to respond to vulnerability through an ethos and praxis of care, aiming to mitigate the multidimensional harms that contribute to vulnerability. This approach transforms care from a general concern (“caring about”) into a more personal, involved form of care (“caring for”), thus adhering to the principles of the ethics of care. The article further argues that, instead of seeking to eliminate vulnerability, vulnerability should be made a feature of SMOs. As actors within these movements confront and try to influence power structures, they expose themselves to risks and potential harm. This exposure to vulnerability, however, is the starting point of agency. Through their caring agency and reciprocal interactions, SMOs have the potential to promote social justice by addressing the effects of widespread crises. One of the most prominent examples is the hospice movement, which emerged in response to death taboos and the denial of death in society. The work of the movement's founder, Cicely Saunders, has been significant in the development of palliative care. At the heart of hospice philosophy is a holistic, patient-centered approach to care that focuses on improving quality of life and supporting loved ones alongside the patient through four care dimensions: physical, psychological, social, and spiritual. These dimensions of care are argued to be the core foundations of the caring agency of SMOs organizing around end-of-life care. The article proposes a preliminary conceptual framework for future empirical research on the intersection of SMOs and the ethics of care, especially from the perspective of the meanings of vulnerability. This research is particularly relevant in the context of the intensifying polycrisis, which is impacting the organization of healthcare by exacerbating global inequalities. In this context, it is crucial to explore ways to resolve crises that emphasize care, reciprocity, and trust in relationships.

错误:搜索内容不能为空,请输入英文关键词
错误:关键词超出字数限制,请精简
高级检索

Ethics of Care, Vulnerability, and Social Movement Organizations in End-of-Life Care: A Conceptual Framework

  • Tuisku Takala

摘要

This conceptual article examines social movement organizations (SMOs) organizing around end-of-life care from the perspective of the ethics of care and vulnerability. It explores how vulnerability holds meaning both as an object of care and as a catalyst for SMO agency, particularly in movements advocating for equitable access to palliative care from a human rights perspective. I aim to synthesize previous research and conceptualize the intersections between SMOs and care ethics in the context of end-of-life care. The theoretical synthesis presents three themes for further research: (1) a conceptual framework of care ethics in studying the hospice movement as a SMO, which embodies care as both ethos and praxis; (2) vulnerability as an object of care and how to reduce harm through caring agency; (3) how perceived or experienced vulnerability can serve as a catalyst for agency. The article proposes a preliminary conceptual framework that suggests that SMOs have a caring agency in organizing around end-of-life care as an alteration movement. SMO participants seek to respond to vulnerability through an ethos and praxis of care, aiming to mitigate the multidimensional harms that contribute to vulnerability. This approach transforms care from a general concern (“caring about”) into a more personal, involved form of care (“caring for”), thus adhering to the principles of the ethics of care. The article further argues that, instead of seeking to eliminate vulnerability, vulnerability should be made a feature of SMOs. As actors within these movements confront and try to influence power structures, they expose themselves to risks and potential harm. This exposure to vulnerability, however, is the starting point of agency. Through their caring agency and reciprocal interactions, SMOs have the potential to promote social justice by addressing the effects of widespread crises. One of the most prominent examples is the hospice movement, which emerged in response to death taboos and the denial of death in society. The work of the movement's founder, Cicely Saunders, has been significant in the development of palliative care. At the heart of hospice philosophy is a holistic, patient-centered approach to care that focuses on improving quality of life and supporting loved ones alongside the patient through four care dimensions: physical, psychological, social, and spiritual. These dimensions of care are argued to be the core foundations of the caring agency of SMOs organizing around end-of-life care. The article proposes a preliminary conceptual framework for future empirical research on the intersection of SMOs and the ethics of care, especially from the perspective of the meanings of vulnerability. This research is particularly relevant in the context of the intensifying polycrisis, which is impacting the organization of healthcare by exacerbating global inequalities. In this context, it is crucial to explore ways to resolve crises that emphasize care, reciprocity, and trust in relationships.