Instituto de Ciências Sociais, Universidade de Lisboa, Portugal.
Palliat Support Care. 2020 Feb;18(1):63-68. doi: 10.1017/S1478951519000324.
This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
本文旨在探讨“复兴主义”善终话语在多大程度上影响了葡萄牙姑息治疗患者及其家属对临终的认知,并塑造了他们的现实生活。
采用民族志方法。在 2 个姑息治疗病房进行参与式观察,并辅以深入访谈。共访谈了 10 名终末期患者、20 名家属和 20 名姑息治疗专业人员。
“复兴主义”善终脚本可能并不适合所有临终者,因为他们可能不希望对临终有开放的认知,从而承认即将到来的潜在死亡。这可能与文化因素和个人情况有关。“社会嵌入叙事”为“复兴主义”善终脚本提供了替代方案。
呼吁对临终有开放认知的“复兴主义”话语,在葡萄牙的姑息治疗环境中并不是一种文化偏好,因为它不符合其家庭性质。