title: End-of-life care planning: an institutional ethnography in Chilean palliative care settings
Creators: name: Collado Quezada, Claudia Andrea
Publisher: name: The University of Edinburgh
Year: 2025
Subjects: subject: End-of-life care planning
subject: Palliative care
subject: Institutional ethnography
subject: Ruling relations
subject: Autonomy

description: BACKGROUND: End-of-life care planning has emerged as a practical tool for healthcare professionals to explore care preferences and deliver tailored and respectful end-of-life care, aligning with the aim of enhancing the end-of-life care experience for the patient and the family. This process affords patients the opportunity to make one of the last decisions in their lifetimes over which they may have agency. End-of-life care planning has evolved into an institutional process and an area of research, with Europe, the United States and Australia developing guidelines, frameworks and training programmes as a part of care delivery. However, as the literature indicates, end-of-life care planning is not universally implemented. There is limited knowledge in this area in regions such as Latin America, particularly in Chile, a culturally diverse and predominantly family-oriented country lacking guidelines for End-of-life care planning at the time of the fieldwork. AIM: To investigate the social organisation of the end-of-life care planning process in palliative care settings in Chile. This involved gaining a comprehensive understanding of how the process of meaning-making and negotiation is coordinated, taking into account the complexities and material conditions present in contexts lacking specific legal frameworks and structured programmes for end-of-life care planning. DESIGN: This study adopted institutional ethnography, inspired by Dorothy Smith’s work, as the primary mode of qualitative inquiry. Taking the standpoint of palliative care healthcare professionals, the research delved into local practices and narratives to uncover disconnections or disjunctures in the organisation of their work. The aim was to identify the ruling relations that shape their work, which are activated by them, such as the “good death”, palliative care and ethical discourses, for mentioning some of them and exploring their influence in shaping the palliative care practice. Document analysis and semi-structured interviews served as the primary data collection methods. The participants included sixteen health professionals, nine policymakers, three patients and four adult family members in palliative care. Based on three research sites, the fieldwork spanned nine months. The analysis involved indexing using N-Vivo, mapping work processes through interviews and writing accounts. Institutional ethnography, while complex, offers valuable insights for promoting social change, aligning with the researcher’s academic agenda. FINDINGS: The findings shed light on how the ontological clash between curative and palliative care approaches shapes the practice of palliative care. Engaging in palliative care, as a healthcare professional, entails being immersed in a distinct set of ruling relations that organise the rationale behind end-of-life decision-making. During the admission process, palliative care healthcare professionals typically facilitate end-of-life care planning, which often occurs in the clinical setting and may involve patients who are unable to participate. Family meetings play a pivotal role in surrogate decision-making processes. Ethical considerations and discourses surrounding a “good death” emerged as powerful organising principles within this practice, emphasising the importance of identifying and understanding the patient’s care preferences. Both reactive and proactive end-of-life care planning processes were used to elucidate these preferences. In this context, palliative healthcare professionals activate ruling relations that prioritise respecting autonomy and incorporate progressive discourses that emphasise the relational component of autonomy. IMPLICATIONS FOR POLICY: This research will serve as baseline data for implementing end-oflife care frameworks in Chile and countries with similar contexts. Implications for Practice: It provides empirical data to support changes in clinical relationships, recognising the relational component of patient autonomy, tailoring end-of-life care for patients and families, and actively incorporating professionals as part of the relational component. Implications for Education: It contributes to teaching of care ethics, as data are focused on practices that are a source of moral knowledge, moving away from biomedical rationality. Implications for Research: This study may open up an area of research in empirical ethics focused on practices to promote change based on up-to-date data, contributing to the body of knowledge on nursing ethics, ethics of care and other areas where moral reasoning is extensively required.