Table 4.

Factors affecting decision-making themes and exemplars

Factor	Exemplar
Commencing and withholding dialysis: patient factors
Deliberation of factors	Past personal experience: “I’ve gone through heart surgery without any problem…I figured that I could stand it (dialysis) no matter what without any trouble.” [Kelly-Powell, 1997 (40)]
	Illness experience: “I vomited all night; tea, medicine, everything I ate. It was painful. I stayed up all night… I told my husband I couldn’t take it anymore.” (Woman) [Lin et al., 2005 (44)]
	Peer experience: “You think you’re the only one in the world and I found there were lots of other people and people that were younger than me. I know it sounds awful but it helps me....” (Woman) [Tweed and Ceaser, 2005 (37)]
	“My brother… he was doing that for five years and I realise how hard it was for him to do it.” (Man) [Tweed and Ceaser, 2005 (37)]
	Being a burden: “Well I couldn’t see that it was really going to achieve anything apart from disrupting everybody’s life … I wouldn’t consider it under any circumstances.” (Woman, age 82 yr) [Ashby et al., 2005 (43)]
	Burden of treatment: “I made my decision … I couldn’t see meself going back and forth three times a week, waiting for a taxi to get home and there and waiting for a taxi to get back. No it’s not for me.” (Man, age 78 yr) [Ashby et al., 2005 (43)]
	Financial burden: “I think I’ll become a burden to my family and cause financial problems … You’ll ruin the family.” (Man, Taiwan) [Lin et al., 2005 (44)]
	“Dialysis treatment will be helpful, besides the health insurance pays for it” (Taiwan) [Lin et al., 2005 (44)]
	“I would pay anything for any helpful remedies.” (Taiwan) [Lin et al., 2005 (40)]
	Ethics- justice: “We are living longer and we are becoming quite a problem. In general we older people are presenting quite a problem. And it is a problem for us to know what to do.” (Woman, age 85 yr) [Ashby et al. 2005 (43)]
	Maintaining normal social roles: “If you can’t have some semblance of a normal life, then why would you want to live?” [Tweed and Ceaser, 2005 (37)]
	Family: “I became very ill. My mother was worried … She consulted those who had taken dialysis treatment. She was told it was all right and the patients were all in good condition. Finally, she urged me to receive it.” [Lin et al., 2005 (44]
	“My husband disagrees with the treatment. He was too busy to take me to the hospital. Besides, the kids need me.” [Lin et al., 2005 (44)]
	Culture and religion: “In the environment that we grew up in and how the families thought and … you pick a lot of that up and carry it through life… And I guess that’s one reason I could make that kind of decision.” [Kelly-Powell, 1997 (40)]
	“Physicians of western medicine tell you that dialysis treatment is the only solution. Chinese herb doctors are different. They’ll do their best to cure the illness.” [Lin et al., 2005 (44)]
	Spirituality: “a decision of the heart…” [Kelly-Powell, 1997 (40)]
	Quality of life before longevity: “If you are supposed to really follow that regime, I would rather cut a couple of years off my lifespan …There is almost nothing you can eat … I am not able to do this.” [Aasen et al., 2012 (33)]
	“At any rate… it defies explanation who finds the treatment bearable and who does not, this is the mystery of quality of life on dialysis.” (Health professionals) [Russ et al., 2007 (41)]
Gut instinct	Opt for life-prolonging treatment: “And they give you a choice…you can die now or you can die later. I chose later.” (Man, age 82 yr) [Russ et al., 2007 (41)]
	“I had no choice … I wanted to live.” [Kaufman et al., 2006 (39)]
	Accept dying as a natural course: “The idea of it that eventually it’s going to kill me it never phased me at all because I am at the downhill side of my life anyhow ... When my time comes I’ll just choof off and that’s it.” (Woman, age 82 yr) [Ashby et al., 2005 (43)]
	“So if I’m going to be fixed and all right, fine. If not, then I lived what I lived and I enjoyed what I had.”(Man, age 26 yr) [Kelly-Powell, 1997 (40)]
	Lesser of two evils: “I told my husband I couldn’t take it (symptoms) anymore. I would rather die. My husband took me to the hospital. I cried bitterly when I signed the agreement.” [Lin et al., 2005 (44)]
	“I suppose in the back of your mind you think, ‘I don’t want this’, cos you don’t want any of it really.” (Woman) [Tweed and Ceaser, 2005 (37)]
Coping mechanism	Problem-controlling: “More you get use to it, the more you think about it and you think, ‘well, it’s not going to be a problem is it?’ You know, soon get round that” [Tweed and Caesar, 2005 (37)]
	“It’s the difference between us and animals … we have the knowledge and free will; we can choose and act on that choice.” [Russ et al., 2007 (41)]
	Emotion-controlling: “I don’t know about anyone else, but the topic is really scary. I’d rather not hear the answer and whatever the answer is, I hope to outlive it.” [Breckenridge, 1997 (38)]
	“A big part of me says I’m going to stay stable and won’t have to do it (commence dialysis) … I’ll deal with it when it comes.” [Schell et al., 2012 (42)]
Commencing and withholding dialysis: health care team factors
Biomedical criteria	Medical criteria: “The decisive factor should be biological age and not chronological age.” [Halvorsen et al., 2008 (34)]
	“If a patient had dementia or other severe malign diseases, the physicians were more restrictive about starting treatment.” [Halvorsen et al., 2008 (34)]
Ethical dilemma	Unethical to prolong life: “It is not like I stand in a situation where I have to choose this patient and not that patient … rather … the situation is more about whether or not it is ethically right to prolong life at any price.”(Physician) [Halvorsen et al., 2008 (34)]
	Patients continue to be offered treatment: “When I say no to treatment, it seems very decisive. It is difficult to make these decisions. It is a question of life and death.” (Physician) [Halvorsen et al., 2008 (34)]
	“My experience is that it is a lot easier to say yes than to say no, and that we start treatment on too many patients.” [Halvorsen et al., 2008 (34)]
Commencing and withholding dialysis: patient and health care team interaction
Power and communication	Power and dominance of the health care team: “These doctors always think they ought to decide and that I should listen to them. And maybe they are right because if I don’t then it may not end up so well…” [Aasen et al., 2012 (33)]
	Health care professionals felt powerless: “You can do the best you can and know you are going to minimize (disease progression)… beyond that whatever is going to happen happens” [Schell et al., 2012 (42)]
	Patients felt uninformed: “People just don’t know what you got on your brain. You smiling (and) they think you’re not worried” [Schell et al., 2012 (42)]
	“I haven’t been told what the futures like except you go on dialysis every other day … You have to do it or you die.” [Schell et al., 2012 (42)]
	Presentation of risk: “In the clinics we observed, physicians and other staff framed the need for dialysis in terms of ‘when you will need to start dialysis’ and not ‘if.’” [Kaufman et al., 2006 (39)]
	“Well, we didn’t make it [decision], that’s what he said, she couldn’t have it. Basically, she could not be put on dialysis because of her heart. So I thought, you must know best.” [Noble et al., 2009 (36)]
	Communicating uncertainty: “… it was a guessing game sort of thing.” (Man, age 77 yr) [Ashby et al., 2005 (43)]
	“They can’t tell you, you know, how long you have to go … With all the modern stuff and all that, they still don’t know.” (Man, age 78 yr) [Ashby et al., 2005 (43)].
	Who provided the information was important: “I just thought, ‘what the heck’ he should know what he’s doing.” [Kelly-Powell, 1997 (40)]
	Health care professionals influenced patient choice: “Don’t you want to continue living for your grandson? Don’t you want to see his children-don’t you want that for him? If you want to see his kids, you have to get a fistula this summer…”(Physician to patient) [Kaufman et al., 2006 (39)42]
Dialysis withdrawal: patient factors
Life on dialysis	“[I]t started with an emergency situation ... It’s presented as short-term treatment. It doesn’t click, wait a minute, this is full-on life support. And it was probably three years before she even started saying or admitting it was life support.” (Son) [Russ et al., 2007 (41)]
	“When they begin to see themselves as completely dependent on systems to keep them alive, that’s when you start hearing them talk about death and dying and they just don’t see themselves ‘going on this way’…”(Social worker) [Russ et al., 2007 (41)]
Facing withdrawal	Problem-controlling: “I have this tremendous control … one that people with cancer don’t have … Doctor said I’d probably live three to thirteen days without dialysis, and that it could be made very comfortable for me.” (Man, age 76 yr) [Russ et al., 2007 (41)]
	“It’s the only thing that makes it bearable … I don’t know if I will quit voluntarily, but I like to know I can.” [Russ et al., 2007 (41)]
	Emotion-controlling: “Most patients … are evasive in their answers, they say they ‘have to think about it’, they push it aside. They’re not willing to admit they want to give up.” (Nurse) [Russ et al., 2007 (41)]
	“It’s rare someone actively discontinues … patients self-discontinue through passive-aggressive behaviour. Patients who pull out their catheter, or it just keeps coming out. ‘Cause they can’t directly say, ‘I don’t want to do this anymore. Take out my catheter. Make me comfortable.’” (Social worker) [Russ et al., 2007 (41)]
Family influence	Families found it difficult to make the decision to withdraw treatment: “The family won’t hear of it, so patients don’t feel they’re allowed to stop treatment.” (Social worker) [Russ et al., 2007 (41)]
	“Up till the end, she’d (patient) say ‘This is no way to live. You need to stop this.’ And we’re (family) going ‘We need to stop what? We’re not doing anything’… I’m not asking her to give up what she wants; I’m asking her to postpone it...” (Son) [Russ et al., 2007 (41)]
Dialysis withdrawal: health care team
Avoidance	Health professionals’ difficulties in discussing withdrawal: “It’s hard to quantify how much someone will tolerate, what they will tolerate … or how they want to die.” [Nephrologist] [Schell et al., 2012 (42)]
	“… [U]nhelpful to beat them over the head with mortality statistics.” [Nephrologist] [Schell et al., 2012 (42)]
	Caring relationship: “A patient who recalled being ‘nagged’ by nurses to come into dialysis agreed; she registered their entreaties as a ‘sign of caring.’” [Russ et al., 2007 (41)]
	“…[S]he doesn’t believe she has any quality of life. Yet … never once has she said, I think it’s time to stop. So I don’t say that either. Ever. You want your caregiver to get on the phone and say ‘get in here.’” (Dialysis nurse) [Russ et al., 2007 (41)]
Genuine request	Difficult to determine whether it is a genuine request for treatment withdrawal: “She’s miserable and feels dialysis is the culprit. But she doesn’t want to withdraw from dialysis; she wants to withdraw from the symptoms. It’s confusing because the signs of depression … get confused with the symptoms of dialysis.” [Russ et al., 2007 (41)]
Dialysis withdrawal: patient and health care team interaction
Doing trumps talking	Patients missed dialogue: “One would think that it had to be in their interest to know what we think and maybe we could get some indications about how they think…it is much one-way communication … I haven’t experienced being asked about what we feel...” (Male) [Aasen et al., 2012 (33)]
	“I want more information … Nurses do not tell me anything, other than blood percentages…” [Aasen et al., 2012 (33)]
	“They probably have got tired of me after so many years. Probably, they aren’t that interested anymore. It’s like I’ve become a piece of furniture.” [Aasen et al., 2012 (33)]
	Voting with their feet: “What is important on dialysis … is what you do, you keep showing up … Look, he keeps coming. Not regularly, but he’s here today. Sometimes a patient will say, maybe I won’t come in tomorrow … But then they’ll come in the next day or two, which always interests me-because that means they’re not really ready to stop.” [Russ et al., 2007 (41)]
If not now, when?	Limit of frailty remains in the future: “The problem…(is that) no one wants to take responsibility for saying ‘no.’” (Nurse) [Russ et al., 2007 (41)]
	“Patients thus choose to be choosers … and they choose to choose later.” [Russ et al., 2007 (41)]
	“…most get so sick, they wind up in the hospital and it (withdrawal) just happens.” (Nurse) [Russ et al., 2007 (41)]
	“When you see that the patient coming in is not doing well, and is supposed to have dialysis no matter what … There is something about being allowed to die ... Sometimes I think we should have withdrawn the treatment a little earlier.” (Nurse) [Halvorsen et al., 2008 (34)]