Introduction:
Shared decision-making at End Stage Renal Disease (ESRD) in the elderly, on treatment options is a complex process. We identified a knowledge gap in the literature about the influence of emotions on confronting death, in this decision-making process. Our research objective was to explore these emotions on confronting death and study their influence in the decision-making process in the elderly ESRD patients.
Methods:
We undertook a qualitative study using interpretive phenomenology. It comprised of semi-structured interviews based on 7 pre-determined questions. It included ESRD patients – diagnosed in the last 5 years, more than 65 years of age of English speaking background. The setting was a large metropolitan health service in in Victoria, Australia, which caters for 300,000 people to conduct our study. Ethics approval from the health service and the university were obtained. Data was analysed thematically as per the method by Clarke and Braun, 2017.
Results:
We interviewed 20 participants- 12 having dialysis and 8 managed by Conservative Kidney Management (CKM), who were predominantly between 75 and 86 years of age. There were 11 males and 9 females. They were diagnosed with ESRD in the last 2 years mostly. We identified 6 themes including: 1. “Illusion of choice”- The very concept of decision-making is based on “choice” and that was illustrated to be dubious from patient perspective. 2. “Myriads of emotions on facing the inevitable” - Participants faced various emotions on approaching death. We illustrated this in figure 1 and it can be in both positive and negative dimensions. Death-anxiety is not the only emotion faced by people on facing ESRD or death as commonly shown in the literature. 3. “Death -denial and acceptance” -We demonstrated that thoughts involved in processing the news of death are also variable. Our study diagnosed 5 out of 20 participants with death-anxiety, which was not diagnosed until then, nor received treatment. 4. “Coping with news of death” – Our study showed the multiple strategies employed by participants to overcome the emotions on confronting death. Some were self-reliant and others relied on external support. 5. “Process of decision-making” – we demonstrated as in table 1, that participants’ decision-making was influenced by their emotions in various ways and 6. “Receptivity to education and information on facing news of death” – we illustrated how the clinicians’ knowledge and education were not able to help participants when these emotions girdled them.
Figure 1: Spectrum of emotions on confronting death, in positive and negative dimensions
Table 1: Various emotions and quotes reflecting their influence on decision-making in ESRD
Conclusions:
Our study highlights the importance of emotions on decision-making in elderly ESRD. Lack of appreciation of these emotional influences in decision-making have significant implications such as poor quality in health-care, negative patient experience in decision making and clinician frustration in their inability to support the patients. The perception of lack of choice by patients at ESRD in our study indicates the need for clinicians to explore this with their patients and guide them where possible, for optimal shared-decision making. While existing literature discusses death-anxiety as the emotion that has a big influence and impact on patient facing death or ESRD, our study unveiled a whole new perspective. This demands further research by quantitative studies in Australia to confirm the prevalence of DA.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.