Decisions About Care Priorities at the Final Stage of Life: Listening to Renal Dialysis Patients and Carers in Hong Kong

Abstract

Background: Many people undergoing dialysis withdraw from dialysis for various reasons, and this withdrawal is one of the most common causes of death of dialysis patients in Hong Kong. However, care priorities and the decision-making process at end-of-life has not been emphasised. As Hong Kong is a multicultural society, culture has a role in the decision-making process of the study population. Limited studies have been conducted to explore the decision-making process of dialysis patients and their carers regarding end-of-life care, especially in the Hong Kong Chinese context; this study was performed to address this gap.<br/> Purpose: The findings of this study may provide renal healthcare professionals with insights into the beliefs and expectations of patients and carers at the final stage of life. This study also aims to explore the effect of culture on communication about the decision-making process, to learn more about a previously hidden topic in Hong Kong.<br/> Methods: A mixed methods sequential explanatory design was adopted and convenience sampling was used to recruit informants in a regional renal dialysis centre in Hong Kong. Quantitative descriptive data were gathered and analysed. The results were used to guide the formulation of the questions in the focus group interviews. The ethnonursing research method, based on Leininger's culture care theory, was adopted to guide the qualitative phase of the study.<br/> Findings: Some 121 dialysis patients and 61 carers participated in this study. The dialysis patient informants considered communication barriers, Chinese cultural norms and dying in dignity the major themes in the decision-making process in their end-of-life domain; personalising care, normalising life, sharing burdens and the carer's plight were expressed as themes by the carer informants. The universalities and diversities of the findings were used to formulate a model: the overarching influence of culture in the decision-making process of dialysis patients and carers at end-of-life. This model illustrates the interrelated effects of communication barriers, family dynamics, sharing burdens and existential distress on the core of 'dignified dying'.<br/> Conclusions: It should be acknowledged that in the context of Hong Kong dialysis patients and carers always experience tensions and struggles in the decision-making process in shifting between Eastern and Western cultures. Decision outcomes are perceived as individualised, situational and contextual, with culture playing a central influence. Enhancing communication channels, facilitating shared decision-making and promoting advance care planning are crucial for end-of-life care. Importantly, every dialysis patient should leave the world in a dignified manner (dignified dying).