Bereaved relatives’ perspectives of the patient’s oral intake towards the end of life A qualitative study

Abstract

Background: Patients approaching death often have a decreasing oral intake, which can be distressing for relatives. Little is known about the relatives’ experiences with and perceptions of oral intake at the end of life.

Aim: This study aims to contribute to a more thorough understanding of relatives’ concerns regarding decreased oral intake of the patient at the end of life.

Design: Qualitative interview study: semi-structured interviews were transcribed verbatim and analysed using qualitative content analysis.

Setting/participants: Twenty-three bereaved relatives of patients who had been referred to a New Zealand palliative care service were interviewed.

Results: All relatives experienced significant changes in patients’ oral intake at the end of life. Oral intake towards the end of life was considered important and is perceived as meaningful by relatives in different ways, such as nutritional value, enjoyment, social time, daily routine and a way of caring. Relatives responded differently to decreasing oral intake; some accepted it as inherent to the dying process, others continued efforts to support the patient’s oral intake. Some relatives perceived decreasing oral intake as the patient’s choice, and some viewed maintaining oral intake as part of the battle against the disease. Relatives recalled limited communication with health-care professionals concerning oral intake at the end of life.

Conclusions: This study revealed the complexity of meaning relatives’ experiences with dying patients’ decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.