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Pathways for a ‘Good Death’: Understanding End-of-Life Practices Through An Ethnographic Study in Two Portuguese Palliative Care Units

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  • Ana Patrícia Hilário

    (Instituto de Ciências Sociais, Universidade de Lisboa, Portugal)

  • Fábio Rafael Augusto

    (Instituto de Ciências Sociais, Universidade de Lisboa, Portugal)

Abstract

Drawing upon ethnographic research developed in two Portuguese palliative care units, this article seeks to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of 10 months in these units participant observation and in-depth interviews were conducted with 20 family members of patients with a life-threatening illness and 20 health care professionals. Against this backdrop, aspects related to the concept of a ‘good death’, the management of pain and suffering, and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient’s physical, psychological, social, and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a ‘good death’ (without suffering and in a peaceful way).

Suggested Citation

  • Ana Patrícia Hilário & Fábio Rafael Augusto, 2022. "Pathways for a ‘Good Death’: Understanding End-of-Life Practices Through An Ethnographic Study in Two Portuguese Palliative Care Units," Sociological Research Online, , vol. 27(2), pages 219-235, June.
    • Handle: RePEc:sae:socres:v:27:y:2022:i:2:p:219-235
    DOI: 10.1177/1360780420972724
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    References listed on IDEAS

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    1. Murphy, Robert F. & Scheer, Jessica & Murphy, Yolanda & Mack, Richard, 1988. "Physical disability and social liminality: A study in the rituals of adversity," Social Science & Medicine, Elsevier, vol. 26(2), pages 235-242, January.
    2. Clark, David, 1999. "'Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958-1967," Social Science & Medicine, Elsevier, vol. 49(6), pages 727-736, September.
    3. McNamara, Beverley & Waddell, Charles & Colvin, Margaret, 1994. "The institutionalization of the good death," Social Science & Medicine, Elsevier, vol. 39(11), pages 1501-1508, December.
    4. McNamara, Beverley, 2004. "Good enough death: autonomy and choice in Australian palliative care," Social Science & Medicine, Elsevier, vol. 58(5), pages 929-938, March.
    5. Mwaria, Cheryl B., 1990. "The concept of self in the context of crisis: A study of families of the severely brain-injured," Social Science & Medicine, Elsevier, vol. 30(8), pages 889-893, January.
    6. Seymour, Jane E. & Janssens, Rien & Broeckaert, Bert, 2007. "Relieving suffering at the end of life: Practitioners' perspectives on palliative sedation from three European countries," Social Science & Medicine, Elsevier, vol. 64(8), pages 1679-1691, April.
    7. Kellehear, Allan, 2008. "Dying as a social relationship: A sociological review of debates on the determination of death," Social Science & Medicine, Elsevier, vol. 66(7), pages 1533-1544, April.
    8. Broom, Alex & Cavenagh, John, 2010. "Masculinity, moralities and being cared for: An exploration of experiences of living and dying in a hospice," Social Science & Medicine, Elsevier, vol. 71(5), pages 869-876, September.
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