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[临终关怀患者及其家属:富有同情心的预先护理计划]

[Care for the Patient and his Family at the end of Life: Compassionate Advance Care Planning].

作者信息

Pérez Bret Encarnación, Altisent Trota Rogelio, Rocafort Gil Javier, Jaman Mewes Paula

机构信息

Fundación Vianorte Laguna. España y Universidad de Zaragoza. España.

Universidad de Zaragoza. España.

出版信息

Cuad Bioet. 2019 Jan-Apr;30(98):35-42.

Abstract

End of life is frequently accompanied by suffering and hardships that can be alleviated in the Palliative Care (PC) units by applying compassionate advance care. It is the aim of this paper to describe the concept of "compassionate advance care" as a way of caring for the patient and his family at the end of life from the perspective of both professionals, teachers and students of the health sciences, and persons with advanced disease and their families. A qualitative methodology was used. Data were collected through in-depth interviews and focus groups, and analysed and coded using the theory of Grounded Theory. Approval of an Ethics Committee was obtained. The intentional sample consisted of 29 participants, who were patients and relatives of patients with advanced disease, PC professionals and experts in bioethics, university professors and Health Sciences students. Data were collected in a PC Hospital in Madrid, Spain. The participants positively valued the compassionate advance care provided by professionals: analysing and reflecting on possible complications that may arise from the advanced disease situation suffered by the patient and establishing a dialogue with him about possible actions in this regard. The paper concludes that compassion is a virtue that implies anticipating the needs of patients, thus allowing the patient to make the right shared decisions. This is what the term Compassionate Advance Care Planning entails. Further studies are needed to delve into the characteristics of compassionate Advance Care Planning and how to optimally implement it in patients at the end of life. To admit the opposite is to enter a spiral where the dignity of the human being would become an object of weighting with respect to another value, which, in a hypothetical conflict could be postponed by another. However, Palliative Care takes into account the social dimension of the end of life of the human being. They take care of the sick human being in its entirety. That is why they are the option most in line with the dignity of the human being at the end of his life.

摘要

生命末期常常伴随着痛苦和艰难,而在姑息治疗(PC)病房中,通过实施富有同情心的预立照护可以缓解这些问题。本文旨在从健康科学专业人员、教师和学生,以及晚期疾病患者及其家属的角度,描述“富有同情心的预立照护”这一概念,将其作为在生命末期关爱患者及其家人的一种方式。采用了定性研究方法。通过深入访谈和焦点小组收集数据,并运用扎根理论进行分析和编码。获得了伦理委员会的批准。有意抽样包括29名参与者,他们是晚期疾病患者及其亲属、PC专业人员和生物伦理专家、大学教授以及健康科学专业学生。数据在西班牙马德里的一家PC医院收集。参与者对专业人员提供的富有同情心的预立照护给予了积极评价:分析和思考患者所患晚期疾病可能引发的并发症,并就这方面可能采取的行动与患者展开对话。本文得出结论,同情心是一种美德,意味着预见到患者的需求,从而使患者能够做出正确的共同决策。这就是“富有同情心的预立照护计划”这一术语的含义。需要进一步研究以深入探讨富有同情心的预立照护计划的特点,以及如何在生命末期患者中最佳地实施该计划。承认相反的观点就会陷入一种循环,即人的尊严会成为相对于另一种价值进行权衡的对象,在假设的冲突中,这种价值可能会被另一种价值推迟。然而,姑息治疗考虑到了人类生命末期的社会层面。他们全面照顾患病的人。这就是为什么在人类生命末期,姑息治疗是最符合人的尊严的选择。

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