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Table 5 Challenges of Engaging in End-of-Life Communication

From: “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

Themes

Participant Information

Quotations

Trivializing Illness

PT07: 90 years old, 5 chronic conditions

“...I can go into the kitchen, and I stand there…And I’m exhausted. And I have to lean on the counter until I’ve got everything together…But it knocks me out... But once I sit down, I’m fine again. I regain everything. So I’m all right here…and I think, oh, I’ve just got to get upstairs and get a cup of tea or something, or I want a glass of water, and it’s like pulling teeth…But up to now, I’ve been managing.”

Positivity in Late Life

PT06: 76 years old, 6 chronic conditions

“When you are 77 years old, it’s very important for you to have positive things. So you gotta think about positive things, don’t think about the negative.”

PT11: 74 years old, 5 chronic conditions

“I realize that I haven’t got much longer. And I think that’s about the best way for me to look at it. Like I know it’s not going to…I’m not going to be here when I’m 80. So that’s it. But until there, I’m going to live the way I am now and not let it get me down”

PT12: 87 years old, 6 chronic conditions

“It’s not part of my thoughts – dying. I mean I don’t want to think about it. I know it’s inevitable but I don’t want to sit and dwell upon it. Whatever happens will happen. And that’s the way I feel”

Discomfort in Having End-of-Life Conversations

CG10: 55 years old, caregiver of patient 10, 88 years old, 4 chronic conditions

“For me, having that kind of conversation with, except for her GP who she sees pretty regularly for one thing or another, they don’t know us well enough on that level to have that kind of conversation about end of life… Somebody that I see every 3 to 6 months or less is not a person that I think I want to talk about my mom’s end of life with. Maybe her GP because she’s had her GP for a long time…or for quite a while, and she sees him quite a bit.”

Reluctant to Engage Despite Need

CG07: 54 years old, male, caregiver of PT07, 90 years old, 5 chronic conditions

PT07: It’s like [Daughter] said, “Look at the sunset, mom.” I can’t see the sunset.CG07: Right. So if it gets to the point where the very basics are not…you can’t enjoy the basics, that concerns me... it’s simply that she’s not in any severe pain but also managing…finding food, you know, that you like to eat… Foods that you can eat, that you like to eat…picking activities that you can do…it’s the quality of life as much as it wouldn’t appear to be so, is above your pain management, above your general health management, for me takes as much time.

CG10: 55 years old, female, caregiver of patient 10, 88 years old, 4 chronic conditions

“I do want and expect the healthcare professional to give us a reality check…Like if they say, you know, we could do this heart procedure but really it’s only going to improve it 10% and that’s only going to be very short term, maybe for another 3 months and then you’re going to be back where you were… Because I do see that it’s possible just to continue to do things and do things to keep things going. But if it doesn’t improve the quality of life in any meaningful way…I do expect them to provide that reality check. Because I can’t be impersonal about that. My goal is to keep her going as long as possible with some quality of life in any meaningful way…If it’s only going to be for a small improvement for a short period of time then I need somebody to say that. Because I’m not going to have that objectivity.”