Background
Methods
Participants
Shared decision-making process
Questionnaire
Data collection and analyses
Results
Choice for dialysis (n = 75) | Choice for conservative care (n = 24) | P value | |
---|---|---|---|
Mean age (years) | 79.8 ± 4.3 | 84.2 ± 4.9 | < 0.001 |
Female | 21 (28%) | 11 (46%) | 0.10 |
Davies comorbidity score | 0.88 | ||
No comorbidity | 9 (12%) | 2 (8%) | |
Intermediate comorbidity | 44 (59%) | 15 (63%) | |
Severe comorbidity | 22 (29%) | 7 (29%) | |
Currently living with partner | 48/70 (69%)a | 10/23 (44%)a | 0.03 |
Stated to be religious | 55/74 (74%)a | 17 (71%) | 0.74 |
Education levelb | 0.15 | ||
Primary education | 16/73 (22%)a | 10 (42%) | |
Secondary education | 44/73 (60%)a | 10 (42%) | |
Tertiary education | 13/73 (18%)a | 4 (17%) | |
Time since original treatment decision | 0.04 | ||
< 6 months | 7 (9%) | 8 (33%) | |
6–12 months | 18 (24%) | 4 (17%) | |
12–24 months | 21 (28%) | 5 (21%) | |
> 24 months | 29 (39%) | 7 (29%) | |
Current treatment modality | 41 (55%) pre-dialysis 24 (32%) hemodialysis 10 (13%) peritoneal dialysis | 24 (100%) conservative care | |
Median number of consultations about preferred treatment between patient and healthcare team | 4 (interquartile range: 3–5; minimum: 2; maximum: 14) | 2 (interquartile range: 1–6; minimum: 1; maximum: 11) | 0.002 |
Interviewer-administration of questionnaire | 26 (35%) | 6 (25%) | 0.38 |
Patients’ satisfaction
Patients’ experiences with shared decision-making
Choice for dialysis (n = 75) | Choice for conservative care (n = 24) | P value | |
---|---|---|---|
Did you have prior thoughts on preferred treatment before counselling started?a | 27/74 (37%) | 7/24 (29%) | 0.51 |
Do you think counselling was started at the right time?a | 63/70 (90%) | 19/21 (91%) | 1.00 |
Do you think there was enough time to make a treatment decision? | 0.66 | ||
Positive answer | 57/72 (79%) | 20/23 (87%) | |
Neutral answer | 14/72 (19%) | 3/23 (13%) | |
Negative answer | 1/72 (1%) | 0/23 (0%) | |
Did you feel forced to make a decision?a | 23/74 (31%) | 1/22 (5%) | 0.01 |
Was the possibility mentioned to postpone a decision?a | 28/72 (39%) | 15/21 (71%) | 0.008 |
Do you think you had enough information to choose whether or not to start dialysis? | 0.23 | ||
Positive answer | 59/73 (81%) | 16/22 (73%) | |
Neutral answer | 14/73 (19%) | 5/22 (23%) | |
Negative answer | 0/73 (0%) | 1/22 (5%) | |
Did you miss information?a | 4/63 (6%) | 3/18 (17%) | 0.18 |
Was withholding dialysis discussed as treatment option?a | 36/72 (50%) | 19/22 (86%) | 0.002 |
Did you receive sufficient guidance?a | 65/68 (96%) | 20/21 (95%) | 1.00 |
Did you feel supported by your doctor and/or nurse in your choice? | 0.06 | ||
Positive answer | 60/71 (85%) | 16/22 (73%) | |
Neutral answer | 11/71 (15%) | 4/22 (18%) | |
Negative answer | 0/71 (0%) | 2/22 (9%) | |
Did you feel supported by your partner and/or relatives in your choice? | 0.74 | ||
Positive answer | 56/66 (85%) | 18/22 (82%) | |
Neutral answer | 10/66 (15%) | 4/22 (17%) | |
Negative answer | 0/66 (0%) | 0/22 (0%) | |
How much confidence did you have in your doctor’s advice whether or not to start dialysis? | 0.13 | ||
Positive answer | 65/71 (92%) | 18/23 (78%) | |
Neutral answer | 6/71 (9%) | 5/23 (22%) | |
Negative answer | 0/71 (0%) | 0/23 (0%) | |
Whose opinion was most important in making your decision? (choose one) | 0.02 | ||
Myself | 34/62 (55%) | 17/19 (90%) | |
My nephrologist and/or nurse | 22/62 (36%) | 2/19 (11%) | |
My partner and/or family | 6/62 (10%) | 0/19 (0%) | |
Do you still have doubts about your treatment decision?a | 12/70 (17%) | 0/23 (0%) | 0.03 |
Do you think decision-making could have been better?a | 8/69 (12%) | 4/19 (21%) | 0.28 |
Preparedness for shared decision-making
Timing of shared decision-making
Informing shared decision-making
Level of decision-making being shared
General suggestions for improvements
Current doubts about treatment choice
Reasons for treatment choice
Choice for dialysis (n = 66) | Examples of answers |
---|---|
Lack of choice (n = 28) |
“Because I have to.”
|
Dialysis perceived as unavoidable |
“What has to be done has to be done.”
|
Seeing no alternatives |
“[I have] no other choice.”
|
Rejecting conservative care as option |
“It [dialysis] was just necessary; withholding is no option.”
|
Not eligible for other treatment options |
“I won’t receive a new kidney; I just have to [start dialysis], that’s just the way it is.”
|
Life prolongation (n = 20) |
“[I] want to live longer.”
|
Doing everything to prolong life |
“Withholding [dialysis] was no option, I still did not feel tired of life.”
|
Enjoying life |
“[I am] far from finished being on this planet.”
|
Social consideration |
“I just have to [start dialysis] for my partner and daughter.”
|
To be longer with family |
“[I] want to live on, [I have] a lot of family.”
|
To take care of ill partner |
“[My] husband has Alzheimer’s disease, [I] want to be there for him.”
|
Following advice of doctor (n = 10) |
“On the nephrologist’s advice.”
|
To maintain or improve quality of life or symptoms (n = 6) |
“[My] physical condition deteriorated, [I] wanted to remain active with table tennis.”
|
Reconsidering or doubting choice (n = 6) |
“I sometimes think: should I really do it [dialysis]? Age 77 years. I consider to withhold dialysis.”
|
Choice for conservative care (n = 21) | |
High treatment burden of dialysis, particularly in-centre (n = 14) |
“[Dialysis means] too much hospital.”
|
Too much impact on quality of life |
“No time to live normally any longer [with dialysis].”
|
Loss of autonomy |
“I felt reluctant to live with dialysis. [I] still am an active woman, don’t want to be constrained.”
|
Physical burden of dialysis |
“Potential side-effects of dialysis treatment.”
|
Feeling well without dialysis |
“I still feel well, not ill.”
|
Not eligible for or fearing burden of home dialysis |
“No option to go for home dialysis; home dialysis is probably disappointing.”
|
High age and sense of life completion (n = 11) |
“[I] did not want it [dialysis], age of 84 years. [I] always thought: a human being should be allowed to just die!”
|
Unlikely survival benefit of dialysis (n = 3) |
“No difference in life expectancy with or without dialysis.”
|
Poor health (n = 2) |
“[My] health condition.”
|
Stories of other patients (n = 2) |
“[A] visit to the dialysis unit and talking with patients were decisive factors [to choose conservative care].”
|
Following advice of doctor (n = 2) |
“[My] nephrologist has given negative advice [to start dialysis].”
|