INFLUENCE OF EMOTIONS ON CONFRONTING DEATH, IN DECISION-MAKING REGARDING TREATMENT OPTIONS AT END STAGE RENAL DISEASE (ESRD), IN ELDERLY PATIENTS – A QUALITATIVE STUDY.

7 Feb 2025 12 a.m. 12 a.m.
WCN25-AB-880, Poster Board= FRI-092

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 

 

No 

Emotion 

Quote 

1. 

Fear and death anxiety 

“I did. I sort of felt it (death-anxiety) when I was told I had to go on dialysis. It was sort of the beginning of the end. If it was the end and I sort of felt in the back of my mind that I had no alternative.” (T3D3D2) 

2. 

Hope and optimism 

“For me conservative care felt like I was giving up. Whereas dialysis doesn't feel like I'm giving up. Intellectually, I know that that's not necessarily what it's about. But that's the emotion that evokes in me. You know…, feels like I haven't tried hard enough or I'm giving up and I'm not quite ready to give up”. (T4D4O1) 

 

“I wanted to take the positive paths. Although that (conservative care) wasn't offered to me. In thinking back, I don't think I would have dwelled on that I'd prefer to be positive” (T8D8H2) 

3. 

Anguish from leaving behind 

“I just don't want to say goodbye to my family and children. The dying bits doesn't scare me, but the saying goodbye does or makes me feel anxious. And there's a difference.” (T4D4O1) 

 
“I think there were there were the odd day when I felt anxious (about death). But my biggest anxiety was making sure that I'd get all my affairs in order and to be prepared to talk to my family about it. And that was about it. Really… I just started to plan a funeral. And I talked to the church about how we would conduct the funeral and then I was quite prepared. So, whilst I felt anxious, it was more about what I needed to do before the time game, rather than being anxious about the end times” (T5D5D3) 


“But really, I think if it wasn't my wife and my family we've got, (I would be) quite happy to fade away and go.” (T6D6D3) 

 

4. 

Dread and avoidance of pain 

“I'm 85 years old. And I figure I've been here long enough. And quite frankly, I don't want the pain. Yes, that's about it". "That’s the only thing that does worry me, is going back into hospital (because of pain). You know, I just want to try and live my life as best I can. And if you're in pain, you can't. Yeah.” (T9C1H3) 

 

5. 

Overwhelmed from the treatment hours on dialysis 

“Well, I'm not a person that can sort of sit around and just you know, be. I saw what came about when I was in hospital, and in the ward. There were three men, and the three of them were all on dialysis. And I watched this day after day, different ones getting done. And that's not for me. I do not, I could not lie the lie. They deal with that all day. Okay! So that was my decision” (T11C3H5) 

 

6. 

Disappointment because of the symptom burden - tiredness and fatigue 

“And then, he sort of mentioned dialysis. But I sort of consider my age, at 83 I wasn't really interested in that because it's takes up so much. And I don't know that in between I’ll be able to do much at all anyway, because you're recovering from the dialysis. So that was what led me to that sort of decision.” (T13C5H7) 

 

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.