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Article

English, Spanish

ID: <

oai:doaj.org/article:5fcf0ed75f534a14b62c2ae82f863756

>

·

DOI: <

10.21640/ns.v8i17.545

>

Where these data come from
Experience of relatives of patients with terminal cancer with regard to end-of-life decisions

Abstract

Introduction: The experience of family members taking the role of primary carers, in the process of a terminal disease such as cancer, provides information about end-of-life decision-making. The aim of this work was to know from the experience of the patient’s family who makes the decisions at the end of life and how these decisions affect the patient if their autonomy is not considered. Method: Type of study: Qualitative cut-off research that builds on the phenomenological hermeneutical paradigm. It is approached from a phenomenological point of view because it makes it possible to understand the perception of people of the world in which they live and the meaning given to them. It also focuses on people’s experience of life, in this case on the experience of relatives of terminal patients. The semi-structured interview was used. Participants: Primary carers and relatives of patients with terminal cancer who were cared for in hospitals in Mexico City. Procedure: A semi-structured interview guide was developed. 11 interviews were conducted, of which eight trained carer/family day. The remaining three were carried out by carers. Six interviews were conducted in a space of a third level hospital and five in public spaces. The thematic analysis and the van Manen method were used. Results: On the one hand, family members’ experience shows that the decisions were taken by the patient (autonomous), although there were some cases where he did not take a decision, at the end of the day the family members had to take responsibility for making decisions, depending on how the illness process was presented (dependent). It is important to note that in the cases studied there was not always adequate medical/patient communication. In addition, from a phenomenological perspective, it was observed that people were able to realise their existence and their world from the disease, as a destabilising event. Discussion/Conclusion: In this work it was noted that respect for the autonomy of the patient is crucial for decision-making at the end of life. If the patient or family does not have the information about the diagnosis or prognosis, it is very difficult for them to make decisions and avoid death with suffering and discomfort. As several research has pointed out, the doctor needs to talk to patients about their situation so that they can better cope with the disease and prepare for death. In the cases studied, there was little or no medico-patient communication, so more training is needed in this area.

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