Table 2 Themes and subthemes with illustrative quotes on information needs and support for decision-making for dialysis withdrawal

Poor knowledge and fatalistic perceptions

Perceptions of having no choice but to continue dialysis

Due to the dialysis, I feel very down. Honestly, very sad. I mean the family is in this problem…. it’s very difficult (to cope). I don’t know, because sometimes I am so bored of my life. Sometimes I give up. I know (it is) my life. At this stage (of my dialysis), I'm not happy. I have to continue to do (dialysis) every week 3 times- Monday, Wednesday that’s all I can remember that’s why I forgot the day I forgot the time. Very sad. Patient/PT04/F

I’ve been sitting down all the time (for dialysis), it's very inconvenient. I try to finish and go back early. That's my concern. Then sometimes, I get so fed up and tell them (nurses) “Oh,,I don’t want to do (dialysis) already, I die, I don’t mind.” You know very, very discouraging. So just happened to get angry so I just say that, but of course I know I have to do. Patient/PT09/M

I have no choice (but to continue dialysis). If I don't do it (dialysis), what can- what am I going to do? Can I do anything? So, I have to do it. I have to tolerate it. Patient/PT09/M

No choice, once you get this kind of illness (kidney failure) you must continue. Caregiver (spouse of PT07)/CG04/F

Unfortunately, those who started many years back, many of them felt that it’s like a death sentence on dialysis and they didn't know there was this option (to stop dialysis) so when I do financial assistance for patients where they are on maintenance dialysis, it’s interesting, they will always tell me I didn't know there's this option to stop. Clinical psychologist/HCP11/F

Limited awareness regarding dialysis withdrawal and palliative care

My thinking is this (dialysis) is a lifelong procedure to me. As long as I live I have to go for dialysis. I do not try to stop (dialysis)…. I haven’t heard about it stopping dialysis really. Patient/PT03/M

To me, this kind of thinking (about stopping dialysis) is very childish [laughs] So I won’t- won’t say these kinds of things. Because I know, if you don’t continue, it’s the end for you already. Patient/PT05/M

Every week if you need to dialyse three days you have to come three days. You can’t say like you want to come two days, one day, cannot lah. Cannot be unreasonable like that. Patient/PT06/M

These things (Palliative care) for dialysis, I didn’t know they had these. I knew they had it for cancer, because my brother-in-law received this palliative (care)…But for dialysis, nobody talked to us about it. Caregiver (Daughter) of Deceased/CG08/F

I never come across (end-of-life care) ah. It is the first time I am hearing all this. Caregiver/CG01/M

And if they (patients) choose supportive care basically, they are not aware that they will be taken care by us (medical team) as well. They would think, and a lot of them feel that they are left on their own. Nurse/HCP04/F

Because the major shortcoming in the past years and even currently is that patients do not even know that they have the right to stop their own dialysis. The areas of deficit really are in the knowledge, the awareness and the empowerment. Nephrologist/HCP06/M

Inadequate information and support for decision-making

Inadequate discussions regarding dialysis withdrawal and end-of-life care

I’ve never thought about this (stopping dialysis). He (doctor) doesn’t say so much. Patient/PT06/M

My doctor in XX hospital, the renal doctor is very busy one. She also has got no time for all these (discussions on EOL care) things. Patient/PT09/M

Unless the doctor gives us proper knowledge, what will happen if you stop this (dialysis) and what benefit the patient under this very good. But so far, I never heard (of dialysis withdrawal). Caregiver (spouse of PT04) /CG01/M

Not a single doctor told us that her condition was like that, they only asked us if we had ever considered stopping dialysis. […] There was no continuation to say, have you guys considered these details about her illness, what would happen to her in future, how much she would suffer. […] If it was just a bit earlier, we had known that her condition was like that, (if) we had understood that (dialysis) really brought her so much harm, we would have- maybe we would have considered stopping her dialysis earlier. Caregiver (Daughter) of Deceased/CG08/F

I think it's the culture and it is a culture that we don't start to bring this up to patients. And this is something that they (patients) will not express you know that ‘I want to die peacefully’,…because to them (patients) you know to bring up the word death is something not good and not something they will accept. So that's why they also don't bring up (these conversations). Nurse/HCP10/F

Singapore is a very Asian society. We actually don’t talk much about terminal care and withdrawal of dialysis. Nephrologist/HCP12/M

Yeah, this is something that I see, or know there's a lack of awareness amongst the patient, because it's not so, at least this is not so openly talk about, you know, if unless you know they are close to the end and all that…It could be the discomfort of thinking that you know the death is so, so close. You know it's it. There's this certain fear. Yeah, they haven't really accepted that, you know, this is coming. Medial social worker/HCP07/F

Some training of the physicians and facilitators who run these discussions is going to be very helpful because not everybody can manage this kind of discussion. You know I just kind of learned how to do it, I kind of figured my way out. But, I've been around a fair number of years. So, so that helps a lot I think, but not everybody can manage this. Nephrologist/HCP06/M

Unclear decision-making roles: Patient autonomy vs physician dependency

I really considered my wife’s decision in terms of my dialysis. Because they have to decide, cause one thing, one thing is they have to pay. Yeah. In my decisions in life, I consider their- their decision much more than my decision. Patient/PT03/M

Instead of you know nobody even my husband dare not make decision on behalf of me. I myself, I make the decision. You are not allowed to make decision on behalf of myself. Because I don’t want to. The person who would suffer to answer all this is myself. So I told my son whatever the doctor tell you just say I couldn’t make decision, my mother would make. Patient/PT04/F

First thing is to get information from the doctors. Before that you need to talk to the nurse first after that doctor. The doctor will have the final decision for the stopping of dialysis. Patient/PT01/M

If the patient has mental capacity, then, of course, still patient’s decision is most important. I would rather like mentioned earlier I would organize a family conference for them. For patient who express to everyone why did he or she wants to stop dialysis, what is in his mind…. I will say patients’ values, really, very important, because ultimately all medical decision is a joint decision making. We do listen to what patients are thinking. Nephrologist/HCP05/F

There's the last group that actually will just listen to essentially what a medical professional say and they will just follow through. You know, actually, is not easy to, especially on physicians, to tell the patient, that eh you know it's time to stop because I think that is always a certain degree of responsibility on the physician because (it) is a therapy and you want the patient to live as long as possible. Nephrologist/HCP02/M

Caregiver dominance in decision-making

I keep it (my feelings about dialysis withdrawal) from them, but they know, they know. They would know… They know that my MSW know. My wife knows, but, uh, I don't- we don't talk about it, but they know

Patient (spouse of CG03)/PT03/M

Unless she is very very stressful, she is all to give up, I say cannot. We have to advice her life has to go on. If you don’t go for dialysis how are you going to survive. This is not like any other sickness. Caregiver/CG01/M

And sometimes I don't want to talk about his sickness if possible, because I don't want him to become hopeless and depressed about the sickness. Caregiver (spouse of PT03)/CG03/F

From my experience, they (family caregivers) will, they will brush it off. As in, because they have heard it from the patient themselves before. So the patient will also tell their family members, aiyah I am very tired, I want to stop. I don't I don't want to go dialysis anymore. But then the patient has to keep going for dialysis. So the family hears, hears this many times already. So when MSW tells the family this, the family will just say ‘aiyah he’s like that lah, he just say, say, only you know he just say, talk about it. Right, So, so that's kind of a brushing off or dismissing the feeling. Yeah, that's my experience. Medical social worker/HCP08/M

We tell them (caregivers) what the each of their, you know their loved one feels and what they say. We do tell them that we're going to share what you said to us to the patient as well. And we don't get a lot of resistance, a lot of times and they're willing because they just can't talk to the patient and they want us to do the job. But we tell them that you know we can only do our best to relay messages, but we hope that you can also listen to what your loved one has to say. Nurse/HCP04/F

You know, Singapore society is very different than (Western societies), we are, we are very driven by family. […] A lot of times, even though they decide for the good of the patient, that decision may not be what the patient actually wanted. […]But sometimes you just automatically see that family member bulldoze away over the patient. Nephrologist/HCP02/M

Emotional support for decision-making

Personally, my own opinion is, I think it is good to always lay the cards all on the table and tell the person, you know, what would happen if let's say dialysis is stopped, you know, what she can expect, you know, or what would be the procedure, what would be done and all that. And if she's very clear, you remove the fear (of the unknown) from her, then maybe she'll be more receptive because at least she knows, what is going to happen. Caregiver (Sister) of Deceased/CG07/F

I think it is more of emotional needs that they really need [to be addressed]. Not so much of social but lot of emotional and moral support that they need from the family members, and I think also from us- the dialysis centre staff you know to continue, to just have conversation with them so that they (patients) know that we do care although they are at their end of life. And we are doing whatever we can to maintain those (who stopped dialysis) so that they can pass on peacefully. Nurse/HCP10/F

After patient pass away, we also follow up on their (caregiver) grief and if they require support, we make referrals to the family service center counsellors for the follow up with the family members if they consent. Medical Social worker/HCP14/F

Instrumental, health and social services for supporting end-of-life care

Maybe for myself, I need to know about the support for me about my care and if I come to that stage, how to do the things with help from somebody else. Do your every (day) things, you have to pee or pass motion or what- whatsoever. Cause you are already in the bed. The medical, medical support. Patient (spouse of CG03)/PT03/M

We were also made aware, because we told the doctors there that we didn't want my sister to die in my house because I wouldn't know how to handle it, you know, it would be a very terrifying thing for me. Caregiver (sister) of deceased/CG07/F

I think most important is to let them (patients) know that they are not abandoned even if they choose to stop dialysis. Medical social worker/HCP03/F

We find out that it (dialysis withdrawal) is a well-considered decision (for a patient), then we will provide information on hospice, palliative options like hospice, or home hospice, and we may even ask the doctor, our XXX doctor whether this patient is suitable for fewer dialysis fewer times per week…. Then, I will do a referral to the hospital to MSW where they have their palliative team, their palliative doctor and nurses can set up a support system for the patient and family at their home when the patient has totally stopped dialysis. Medical social worker/HCP08/M

Complexity of decision-making, unclear timing, and unpreparedness

Dialysis withdrawal is a difficult decision

You see everyone on dialysis, everyone comes out alive and well, it’s very good! I think it over, if I stop, what can I do? I will die what to do? There’s nothing can be helped already what. You don’t do dialysis, then what are you going to do? Wait to die? Patient/PT09/M

I cannot say that (stop dialysis) because it is too risky. If you stop, how is she (patient) going to survive? Its better unless she has gone through all this for years then suddenly you stop, then it’s like try to kill somebody. Caregiver (Spouse)/CG01/M

It’s just like suicide like that. He’ll definitely die if he doesn’t do dialysis. Caregiver (spouse)/CG02/F

You know it’s a very difficult choice because we are talking about life and death now, literally. And they are talking about stopping them, and that means their life is ended, their relationship with a family’s gone you know and, and the way they know of life is terminated. So, it is a very sensitive and tough topic for the patients, especially those that have not really thought about it. Nephrologist/HCP02/M

Because we, of course, then would bring in very naturally the concern on the part of both caregivers, patients and physicians of euthanasia, which is currently not legal in Singapore. You know, patients and families often misperceive stopping a medical therapy a life sustaining medical therapy as euthanasia killing the patient actively. This is a very difficult area to clarify. HCP06_Nephrologist

Unclear decisional timing

When she (the patient) just started dialysis ah, patients who just started dialysis would- maybe they wouldn’t have these kinds of ideas (of stopping dialysis) to think that they would pass on so quickly. Maybe say after dialysing for a period of time, or three- three or four years later, you have to look at the patient’s condition (before deciding when to discuss dialysis withdrawal). Caregiver (Daughter) of Deceased/CG08/F

But I do hope that you know, it will start at the point where any patients or every patient that come in or before even starting on dialysis or when they know that their kidneys not functioning. To know that there is always support all the way until the end, and supportive care should be discussed. Much, much earlier. So we actually start from the beginning all the way to the end rather than you know when you are in dire straits and then you come to us and there is only so much I can hold your hand for. Nurse/HCP04/F

If they come in the outpatient clinic setting, they will have quite a lot to say about their suffering, which can be multi-domain from physical to psychosocial. So, there is usually what they focus on, and then we try and address all these things because all these things could be confounding their decision to stop dialysis and sometimes after we address some of these they actually continue (dialysis). So, the request to stop dialysis, is kind of a cry for help, rather than request to really withdraw (from) the treatment. Clinical Psychologist/HCP13/FBut I would say it's always a stepwise procedure in a sense that it is difficult to actually right at the start to let the patient know that dialysis withdrawal is on cards. I guess it's important to first make the patient realize that we are struggling with dialysis. And I think a lot of times is a topic that you have to actually repeatedly visit, where you may not actually be able to get through to the patient of the family at the first instance and it requires in fact I will say several discussions before all parties may be able to come to terms with the decision. Nephrologist/HCP15/F

I think it (withdrawal) should be considered maybe in the earlier stage when a patient is still able to make his or her own decision and able to express clearly, able to express the values. And because the moment we start, there will be a stop. So, I think this kind of discussion (for dialysis withdrawal) maybe should be done earlier before the patient went into some form of critical illness and medically unfit already. Nephrologist/HCP05/F

I have only counted very few patients who have electively decided to cease dialysis when they are not critically ill. One of these, was a very insightful spouse and family, where the patient had severe dementia and increasingly could not interact as an individual. So, the family and spouse felt that the patient had lost his dignity. So, they electively decided to cease dialysis, even though the patient was not critically ill. Nephrologist/HCP06/M

Unreceptive decisional stage and denial

Nothing, nothing. I mean, once come here- life is normal. that’s all. You already used to it (dialysis) already, so there's no other way to change. Patient/PT08/M

On top of her dialysis session, she also was- I could see that she was very reluctant to give up her life which every one of us also will be reluctant, you see. It was a very I would say that it was a very sad moment, but all of us accepted the fact that we eventually had to help, to let her see that death may actually be a better choice, no point dragging on because (of) the dialysis. Caregiver (Sister) of deceased/CG07/F

Most patients, I will say maybe 60 to 70%, they do have considered, and they know about this option (to stop dialysis). But majority still feels is important to live on, so they don't think (deliberate) about the withdrawal so much. Renal counsellor/HCP16/F

It could be the discomfort of thinking that you know the death is so close. You know it is. There's this certain fear, they (patients) haven't really accepted that you know, this (end of life) is coming, and they may not be so open….‘I don't think I am at that stage yet’.So you know sometimes they (patients) just brush us off. Medical social worker/HCP07/F

Internal emotions of decisional conflict and regret

Decisional conflict

He told us that we really had to think it through, the feelings of the patient, because for us to help her (mother) decide these kinds of things, I thought that it was cruel. I asked myself every time, if I make this decision, is it like I’m murdering her (mother), it was really like you would feel like you were killing her. From another angle, the doctor’s perspective, actually it’s not like that. Actually, it’s because you don’t want to let her suffer, you want her to be relieved from this suffering, you want to think about it on her behalf, she would suffer a lot if she (continued) dialysis every day. ‘Have you thought about her (mother’s) suffering?’ She (doctor) said that her blood pressure was rising and falling every day, and the burden on her heart. I thought about all these, that’s why I considered giving up. If not, we didn’t- because we wouldn’t know exactly whether our decision was right or wrong. Caregiver (Daughter) of deceased/CG08/F

In the situation if their (family’s) loved one is not able to advocate for themselves about wanting to with regards to terminating dialysis, then they will feel and be afraid to make that decision. So, usually it goes back to the doctor to make that decision. Medical social worker/HCP14/F

And they (caregivers) struggle with a lot ‘am I doing the right thing and am I making the right decision or am I pushing too hard. Should I just respect, am I giving up without a fight for my loved ones, you know, and letting him (loved one) make a decision for not doing dialysis on too easily’. I think these are some of the internal struggles that they (caregivers) have to deal with on top of the resource, finance, money issues or care issues that they have to deal with day in and day out. Clinical psychologist/HCP11/F

Depending on how the medical team and how they approach the topic, the families may feel that they have to be the ones to make the decision. That's when they (family) feel guilty because you know the moment they say yes to stopping (dialysis), then they have a direct role because they know that the prognosis is so short. So, they (family) may sense that and they feel like they have a direct role in hastening the death or causing the death of a loved one. Palliative care physician/HCP13/F

Regret for a delayed decision to withdraw dialysis

When we held on to her for so long, just two days ago, I asked my dad, “Did we make a mistake, should we have stopped her dialysis earlier? Did we do something very, very selfish by letting her (continue dialysis).- Why didn’t we think about her properly, about how exactly her condition, when her condition was at its most severe, why didn’t we think about giving up? Caregiver (Daughter) of deceased/CG08/F

But deep down we know that she believed that she would be going to a better place. And we kept telling her that, yes, if you are going to believe in that, then we support your belief, you are going to a better place. Any place is definitely (better) than your suffering now, isn't it? When you are already suffering like that, right? Any place that has got no pain is a blessing……I worried so much….I will choose quality. If let’s say, you know, it comes to a stage where, I’m in such pain and I have to worry so much, then I'd rather let go… My sister prolong and prolong until this year, then she passed away three months ago Caregiver (Sister) of deceased/CG07/F