Background
Patient preferences as a barrier to transplant
Methods
Ethics
Research settings
Recruitment
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full range of treatment modalities (including transplant);
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patients with dialysis start date of less than 5 years prior;
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age between 18 and 65 years;
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balance of genders; and
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Indigenous and non-Indigenous patients (the latter not included in this report)
Stage | When/Where | Activity |
---|---|---|
1 | 3 weeks pre-field work | Project staff send recruitment guidelines to participating site; staff begin identifying potential participants |
2 | On-site | Staff enquire if patient is interested in hearing about study |
3 | On-site | Staff introduce IMPAKT interviewer to interested person, or provides patient contact details |
4 | On-site | Interviewer explains project to patient, provides patient information sheet |
5 | On-site | Interviewer re-visits patient; if willing to participate, they nominate interview time |
6 | On-site | Interviewer meets with patient, completes informed consent paperwork, conducts interview |
7 | Home base | Interviewer sends transcript of interview to participant, including letter of thanks; participant given 6 weeks to amend transcript |
Data collection and analysis
Results
Participants’ profile
Number | Percent | |
---|---|---|
Age (years) | ||
20–29 | 5 | 3.4 |
30–39 | 19 | 13.0 |
40–49 | 44 | 30.1 |
50–59 | 50 | 34.2 |
60–69 | 21 | 14.4 |
≥ 70 | 7 | 4.8 |
Gender | ||
Female | 76 | 52.1 |
Male | 70 | 47.9 |
Place of interview | ||
New South Wales (4 sites) | 10 | 6.8 |
Northern Territory (5 sites) | 43 | 29.5 |
Queensland (6 sites) | 38 | 26.0 |
South Australia (3 sites) | 10 | 6.8 |
Western Australia (5 sites) | 45 | 30.8 |
Has dependantsa
| ||
Yes | 76 | 52.1 |
No | 68 | 46.6 |
Current accommodationa
| ||
Own home | 17 | 11.6 |
Rental accommodation | 103 | 70.5 |
Otherb
| 25 | 17.1 |
Highest level of educationa
| ||
Post-secondary | 13 | 8.9 |
Completed secondary school | 7 | 4.8 |
Some secondary | 71 | 48.6 |
Primary only | 35 | 24.0 |
No formal education | 17 | 11.6 |
Time since dialysis startc
| ||
< 1 year | 28 | 19.2 |
1–2 years | 29 | 19.9 |
3–5 years | 50 | 34.2 |
6–10 years | 37 | 25.3 |
> 10 years | 2 | 1.4 |
Distancea (kms) | (a) Usual residence to dialysis facility | (b) Usual residence to transplant facility | ||
---|---|---|---|---|
Patients (n) | % | Patients (n) | % | |
0–49 | 51 | 36 | 11 | 8 |
50–299 | 34 | 24 | 4 | 3 |
300–599 | 23 | 16 | 17 | 12 |
600–999 | 23 | 16 | 5 | 3 |
1000–1999 | 9 | 6 | 67 | 47 |
> 2000 | 2 | 1 | 38 | 27 |
Unassigned | 4 | 4 | ||
Total patients | 146 | 146 |
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interest in transplant as a treatment option;
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becoming informed and communicating with clinicians and carers;
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family support in transplant decision-making; and
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negotiating cultural sensitivities.
“I really want one”: Interest in transplant as a treatment option
I feel that a transplant will allow me to get back to a normal life. (2-041)If I could get one, maybe, I’m happy to go back home. (3-009)I really want one. I really want to go home. (3-174)
I’d love to get a transplant and get off this machine. (3-155)I want to get out from here and go back home. (2-026)
Nine other patients were not currently interested, but were not opposed in principle. Reasons for their lack of interest included believing themselves to be too old (3–106, 3–025, 2–020), health uncertainties (2–115), uncertainty about what transplant entailed (2–061), preferring to manage dialysis (2–016, 2–005) being undecided (2–027) and being frightened (2–088).I can’t go [home] and I’m really missing my friends and my family… I’m getting used to living in town now - but in my spirit I really want to be able to go home. …The most important thing to me at the moment is that I do the right thing and [then] be able to get a kidney… because I’m really suffering. (3-178)
Another woman recounted refusing her son’s offer of a kidney despite his assurances that it was possible to live on one kidney:Well it’s a new thing ...these kidney transplant things, you know, getting other people in there, taking things. He [the donor] gets scared himself for giving it [the kidney] away you know - taking some life from another person - you don’t know what’s going to happen to them. ... They have to live a normal life too you know. (4-022)
A respondent (speaking in his own language) suggested that even making such a direct request to family members entailed an unconscionable degree of emotional ‘force’.I said, “Yeah, but say if it fails, then you’ve got one kidney left and it might be no good.” I mean, who knows...In years down the [track], their kidneys might fail and [but for] that one kidney that you might take off them, they could be alive. So this is what I’m looking at, you know. (4-005)
I: No, I haven’t talked to them about it. I’m leaving it up to them. If they want to give it, they can do it, I don’t want to force them.Q: Is that an Anangu [Aboriginal] way - that you don’t go asking someone because that would imply that you’re forcing them to make a decision?I: Well, yes, I just don’t go around asking, I think that’s their decision to make, and their body, and they’ve got to decide. So I haven’t talked to my family about it - not yet. It may be that they get sorry for me, that they’re sympathetic to my position and that’s it. (translated from Pitjantjatjarra) (3-178)
But … some families, if [they] give you something, they want something you know…I woke up to that. (2-053)I wouldn’t mind if it [LKD offer] was genuine - from the heart you know … that’d be fine. But I feel with the younger brother, maybe he’d be on my back, you know like, “I don’t give you this [for nothing]” - and the other [brother], well he’d definitely want something - he’s that sort of bloke you know, I’d have to give him me TV or me bloody whatever. (2-105).
“I have no idea”: Becoming informed and communicating with clinicians and carers
This situation was reported by an urban Aboriginal man dialysing at a large metropolitan centre associated with a transplant hospital. This patient, even with advantages including English as a first language and proximity to a transplant unit, recounted having to navigate the health system by personal detective work.When I first came in with kidney failure … I didn’t really get much information at all. It could have been much better than it was… Now it’s two years later and I’m just starting to find out about transplant... I don’t know anything about it, or how people get on the list…One day I noticed that they (three fellow Aboriginal patients) were missing from the unit …I found out that they got transplants…that’s what got me asking some questions. Now my family are talking about a transplant… We need to talk together about this and we all need information about what donating a kidney involves. (3-111)
Clinicians may well have spoken to some patients, but little had actually been communicated. Patients spoke of various communication problems with kidney specialists, including the complexity of the content, of specialists speaking too fast, of being overly assertive and of a perceived reluctance of specialists to spend time speaking with them:I have no idea either - I don’t even know that! Well, to tell you the truth, I don’t even know what transplant they’re talking about - they just say ‘transplant’, you know, ‘kidney’. (4-032)
They [staff] don’t give it [information] the right way. Instead of like trying to teach them, they come across like they know everything and they don’t compromise on that, hey? When they come across like that everyone’s too scared to ask them questions why, so then they just shut up and think, “Well I’ve been told this, so that must be it”. (4-015)
Confused by an apparent lack of any further action or discussion, patients might easily conclude that they must have misunderstood in the first place:Well they don’t like to tell us - like the doctors even themselves don’t want to say anything but I think it is our right to know; he [doctor] said, “It [kidney] is just not working… it’s not that good, you know”. That’s all they said…Well they sort of avoided most of the questions, until I got really cranky with them [then] they started telling me what’s going on and that. But they got a very funny way of communicating with people. (3-021)
Even a patient with a willing, potential living kidney donor was perplexed:The doctors tell me about kidney transplant but I don’t understand what he says – he tells me I’m on the list but nothing is happening. (2-075)
But we (family), that’s all, we talk, we don’t know where to go or what! Where to ask or what! (2-029)
Asked what he knew about his situation, one respondent drew a key distinction between ‘being informed’ about regular dialysis sessions and having a plan for the future:I was asking [nurse] now at the hospital…I’d really like – you know - see if I can get a transplant…. I just asked, you know. She didn’t say she’d give me any information.… she told me she’d talk to the doctor, but I don’t - you know, we haven’t got - we have to get - what do you say - to see a doctor? (3-026)
Reflecting on the unsatisfactory way information and/or education is provided led some patients to suspect that clinical staff used their greater power to restrict patient access to information:Well we don’t know. We really only just go in and out and have the treatments…So we don’t know whether we’re getting a bit better or things are getting a bit worse. They don’t tell us whether we’re improving or getting worse. We’re just going in and out of the [dialysis] sessions. (translated from Pitjantjatjarra) (3-178)
Q: Why haven’t you gone and asked them at the renal unit or somewhere, to clarify the story…gone and knocked on the door and asked?I: You don’t go knocking on their door, [it’s a] ‘danger one’Q: What do you mean ‘danger’?I: The door is locked. They sit behind closed doors. (translated from Pitjantjatjarra) (3-179)
He understands the nurses, they speak nicely, and he has let them know he is interested in a transplant. They advised him to go and ask the specialists. He also noted that he had never received anything on paper and that this interview was the first occasion in his 3 years of treatment where he had access to an interpreter.I – we would like to be spoken to clearly in an understandable way by doctors – …by doctors who like Anangu (Aboriginal people), by understanding [empathetic] doctors who talk - they’re good – a lot of other doctors can’t talk with us… their talk is hard [to understand].
But there is also sensitivity to the possibility of unwittingly giving offence to other patients or their families, as happened to this man:Patients - we don’t talk to each other about that kind of thing (transplant) – mainly we talk to the doctors. I want him to tell me everything. (3-093)I don’t talk to the other patients about dialysis cause they are in the same boat as me. (2-009)
Despite patients regularly interacting with knowledgeable staff, multiple barriers confound effective communication. Nurses are a potential source for preliminary transplant information; however, together with their other professional priorities, nurses may have reservations about discussing transplant with Indigenous patients, including not wanting to raise expectations, or (unknowingly) offend cultural protocols. When asked if patients queried her about transplant, an Indigenous nurse in a regional centre with an all-Indigenous patient group replied:[Patients] don’t talk to each other…I asked one of the fellas, I said, “I’m looking at having a kidney transplant but I’ve got to lose weight [first].” “Anyway” … I said, “what about you - you looking at getting a transplant?” He said, “No”. He turned around and looked at me straight in the eye and said, “No … One of my family had passed away getting a kidney transplant”. Then I shut up. (3-053)
Asked whether she thought the treatment centre promoted transplant to potentially suitable Indigenous patients, a transplant-hospital-based Indigenous liaison officer hesitantly explained:No, transplant’s never brought up, never spoken about.... I don’t know, maybe because there’s not enough information about it to our patients, it’s not something we talk about really; we’re busy doing everything else. Transplant is last on the list! (3-127)
I don’t think they [renal nursing staff] do and I think we can … I think it’s a cultural thing too. They [renal staff] don’t know whether it’s culturally appropriate to even ask that sort of thing. (2-035)
“We all need information”: Family in decision-making
Through their illness and treatment experience, patients may come to a view on transplant that is not necessarily shared by their distant families. Although reporting themselves as being interested in transplant, patients also reported family and community reservations about transplant. Some described extended, stressful negotiations to achieve family consensus around the transplant treatment option. There is fear about the operation itself and the possible death of the family member in a faraway city.Now my family are talking about a transplant. They need some information. We need to talk together about this and we all need information about what donating a kidney involves. It is a bit hard to talk about it though because my family doesn’t get together that often. (3-111)
Some drew a distinction between their own close kin/family and a more generalised Aboriginal community view (from people outside [who have] good kidneys) reported to, or known by, patients.And I’ve talked to people from outside, like, whose got good kidneys, and they said, “Don’t go on it, don’t put yourself on the list”. And they kept talking me the other way. “It’s a one-way thing … if you have an operation, you’re finished, that’s it”. They refusing me [to do it]. They don’t like the idea, especially the family... I’m keen to have it. I’m excited to have it. (3-086)
Both of these speakers point out that family and/or other community members who are not on dialysis do not really understand the patient’s situation and options. On the other hand, relatives’ fears of possible negative outcomes, including death, serious cultural transgression or psychic fragmentation, reflect their care and deep concern. Patients described a situation where a lack of shared knowledge about the transplant process feeds into fear, for both themselves and their families.They (community members) saying all this rubbish about, “You’re getting that kidney from that dead man!” You know, something like that and they start to make you more frightened… That’s what they’re trying to do to you. But don’t listen to them, it’s your decision, it’s your mind, make your own mind up and do whatever you feel for you. .. I don’t listen to them other mob of people when they talk about it… they don’t know anything about that, you know… (3-091)
However, not all were fearful:I don’t talk to them [family] about my condition you know. I think they’ll be scared eh? (4-022)
..as long as those kidneys are good and can be used then you’re okay. ... I’m completely confident…I’m not afraid. If I’m going to be afraid then I’m likely to be here forever in this state [of illness]… So because of that, I’m approaching it confidently (translated from Pitjantjatjarra) (3-177).
“It’s a new thing”: Negotiating cultural sensitivities
This man explains his (and some other patients’) difficulties. His relatives are telling him that a person should keep their own body intact – because that’s what the ancestors say, (i.e. it’s a cultural tradition). His relatives advise him that bad outcomes will follow a transgression of their tradition, for example, the deceased patient’s spirit will haunt or otherwise disturb the donor.[Someone] should tell the doctor because some Aboriginal people who are dialysing, they are finding it very hard from our own family, because that’s what the ancestor say. They (family members) say, if they give us a kidney and we die middle of that, maybe after 9 years, or whatever, we pass away and we’ve got their kidney. They think we will haunt them… And no-one has explained that to the doctors. (3-086)
Asked whether any cultural issues constrained patient transplant choice, one patient suggested pragmatically:Now I have to get a kidney from someone else…That’s my decision. It’s my body and I want to go ahead. It doesn’t matter if I live or die…It doesn’t matter what nationality we are, white, black, brown, whatever, we all come from the ground. In old way, we call the mother ‘earth’, dust to dust, so that’s where we come from, doesn’t matter. (3-086)Yeah, if the doctors say my heart is right, I’ll say “yes” for my transplant. I’ll agree to whatever they want, for myself anyway, it’s not for anybody else, but for myself. (3-164)I’m choosing my own choice, I’m choosing the transplant… I said, “Yes, that’s me, that’s my identity!” (laughs) (3-098)Family got nothing to do with it. You decide, you know what to do. You want to go through the operation, well it’s up to you, nobody can tell you what to do… that’s your body and that’s your kidney -if you want a new one, you ask the doctor and the doctor will tell you. Don’t get fright - some people get frightened eh? (3-160)
Patients who were Christians had a faith-based interpretation of their situation. This provided both personal and spiritual strength within a framework that promoted universal help, under-cutting notions of wrongdoing through accepting donated and/or non-Indigenous organs:No, some may have [reservations], but there is that many people with renal disease that that should overcome any cultural things, you know…There probably would be a little bit of fear just because there’s not enough education on it, you know. (3-019)
Even in these different contexts an emphasis on individual agency and autonomy supported patients to make decisions that others – including family or other patients – opposed.We trust in the Lord, He’ll find a kidney for me; I’m a Christian person - a Baptist – and people always pray for us dialysis patients. I’m not frightened. I don’t worry if that kidney comes from a White person or someone else – it doesn’t matter…God made people to help each other. When the doctors get that same blood, same numbers, that kidney will be alright. (3-166)
The man who had inadvertently annoyed a fellow patient who was anti-transplant, also emphasised his own right to decide:[B]ut for me I trust myself to go ahead with the transplant; I trust myself. I have faith you know, I believe in the Lord Jesus (3-164)
The source of a patient’s transplanted kidney was a topic of interest and considerable speculation by fellow patients. However, the dearth of accurate, timely information and limited communication opportunities, left patients floundering; scraps of hearsay and misinformation circulated among co-resident patients:No. That’s what I think and [when I] make a decision, that’s my business you know. I’m not going to have someone coming and trying to convince me not to go ahead with it [transplant]. (3-053)
Asked whether it was acceptable for her as an Aboriginal woman to receive a kidney from a ‘white’ (non-Aboriginal) person, this woman was clear:All I know is that when I was staying at the hostel here a lady came down from Alice Springs for a transplant and when she went back a couple of months ago, she passed away. Yeah that’s what I’m scared of, but her transplant was from - not from her family – [it was] from a white person - I don’t know. (2-061)One of those transplant workers says you have to get it [kidney] from an Aboriginal person, they got the same donor’s blood group or something. (3-026)Nope. Because as far as I’m concerned, we’re all the same inside anyway - we’ve all got the same parts. I’m just grateful that I can be on the list. (3-072)
Patients and families held a range of views as to the acceptability and suitability of donors of different ethnicity and/or gender to the patient. A few raised concerns that donors’ specific traits and personal qualities might cause problems. For example, a donor who did not like Aboriginal people or a vegetarian donor organ transplanted to a non-vegetarian. In fact, with the exception of living donors, neither patients nor families usually knew the origin of deceased donor organs, despite their noted interest and speculation. Transplant recipients reported being asked by others about their organ donor, but most reported answering that they did not know.It’s a good way to get one like that. All my family, my sister, all my younger siblings, they’re all diabetic, all sick. Maybe all of us are sick…Yes [so] a white man is OK, or a white woman. Aboriginal people are OK too, but they’re all sick. There are a lot of well white people so it is good to get one from them. (translated from Pitjantjatjarra) ( 3-175).
When I think about my health, I’m diabetic – I don’t know what might happen… I’ve got many things to worry about especially with my health (2-115).