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Communicating treatment options to older patients with advanced kidney disease: a conversation analysis study

Abstract

Background

Choosing to have dialysis or conservative kidney management is often challenging for older people with advanced kidney disease. While we know that clinical communication has a major impact on patients’ treatment decision-making, little is known about how this occurs in practice. The OSCAR study (Optimising Staff-Patient Communication in Advanced Renal disease) aimed to identify how clinicians present kidney failure treatment options in consultations with older patients and the implications of this for patient engagement.

Methods

An observational, multi-method study design was adopted. Outpatient consultations at four UK renal units were video-recorded, and patients completed a post-consultation measure of shared decision-making (SDM-Q-9). Units were sampled according to variable rates of conservative management. Eligible patients were ≥ 65 years old with an eGFR of ≤ 20 mls/min/1.73m2 within the last 6 months. Video-recordings were screened to identify instances where clinicians presented both dialysis and conservative management. These instances were transcribed in fine-grained detail and recurrent practices identified using conversation-analytic methods, an empirical, observational approach to studying language and social interaction.

Results

110 outpatient consultations were recorded (105 video, 5 audio only), involving 38 clinicians (doctors and nurses) and 94 patients: mean age 77 (65–97); 61 males/33 females; mean eGFR 15 (range 4–23). There were 21 instances where clinicians presented both dialysis and conservative management. Two main practices were identified: (1) Conservative management and dialysis both presented as the main treatment options; (2) Conservative management presented as a subordinate option to dialysis. The first practice was less commonly used (6 vs. 15 cases), but associated with more opportunities in the conversation for patients to ask questions and share their perspective, through which they tended to evaluate conservative management as an option that was potentially personally relevant. This practice was also associated with significantly higher post-consultation ratings of shared decision-making among patients (SDM-Q-9 median total score 24 vs. 37, p = 0.041).

Conclusions

Presenting conservative management and dialysis as on an equal footing enables patient to take a more active role in decision-making. Findings should inform clinical communication skills training and education.

Clinical trial number

No trial number as this is not a clinical trial.

Peer Review reports

Introduction

International guidance recommends that people with advanced kidney disease approaching kidney failure should not only be offered dialysis, but also Conservative Kidney Management (CKM) [1,2,3], which aims to delay disease progression and minimise adverse events, but without dialysis [4]. Although the evidence is not consistent, observational studies suggest that patients who opt for CKM live, on average, less long than those who opt for dialysis; however, any benefit is attenuated or lost for patients over 80 and for those with comorbidities [5, 6] and/or moderate frailty [7]. Survival benefit with dialysis must also be weighed against the likelihood of reduced quality of life, including functional and cognitive decline, and of higher symptom burden and risk of hospitalization and dying in hospital [6, 8].

The uncertain benefits and high burdens of dialysis for older people living with frailty and/or multimorbidity, mandate careful, person-centred decision-making support [9,10,11]. Patients may prioritise different outcomes to clinicians [12], focusing more on the impact a treatment has on their daily lives and goals [12,13,14]. How clinicians communicate information and support decision-making strongly influence treatment-choice [15,16,17]. Dialysis is often prioritised over CKM in education and information materials [18], and presented as the default option [9, 19, 20]. Treatment rates vary significantly; in 2012, the proportion of patients aged 75 + choosing CKM ranged from 5 to 95% across UK renal units [21]. This striking variability suggests that treatment decision-making is inconsistently guided by the evidence-base, and unlikely to be person-centred [22, 23], contrary to recommendations [1, 2].

To support shared decision-making in nephrology, clinician communication skills training is needed [9, 11, 16, 20]. Studies of real-life consultations provide evidence of what constitutes shared decision-making in practice, however such evidence is rarely used in existing training [24]. Recent studies of treatment decision-making in advanced kidney disease in the Netherlands [25] and Australia [18, 26] have collected recordings of real-life consultations. While these studies provide novel insight into what actually happens in these encounters, the analytic approach in these studies was insufficiently fine-grained to allow them to elucidate how clinicians frame treatment options or the implications of different communication practices for patient involvement in treatment decision-making.

Conversation Analysis (CA) is a distinctive, highly empirical method for studying medical interactions, used to identify in fine-grained detail problems in communication as well as their solutions [27], including in the context of discussing treatment options. The method examines not only what is said (i.e. language), but how it is said [28,29,30]. CA studies have linked communication practices to patient-relevant outcomes that are both internal and external to the conversation, providing important evidence to inform person-centred care and training that changes clinician behaviour [31, 32]. Using CA, this study aimed to systematically identify renal clinicians’ different approaches to presenting CKM, describe the key interactional features of these approaches, and examine their implications for patient involvement in treatment decision-making.

Methods

Study design

The OSCAR study (Optimising Staff-Patient Communication in Advanced Renal disease) was a mixed methods study to understand how renal clinicians communicate with patients with advanced kidney disease regarding their treatment options. Renal outpatient consultations were video-recorded and analysed using the method of Conversation Analysis; a fine-grained observational approach to studying verbal and nonverbal components of communication. Questionnaire data were collected from patients, companions (where present) and clinicians, post recording. The questionnaire included the 9-item Shared Decision-Making Questionnaire (SDM-Q-9) [33] (see Appendix 1), a validated measure of shared decision-making in clinical interactions, using a 6-point scale (from 0 = completely disagree to 5 = completely agree). Clinicians were also invited to complete a post-consultation questionnaire which included the 9-item SDM-Q-Doc, the clinician version of the SDM-Q-9 [34].

Data were collected from July 2021 to January 2023. A project Patient and Public Involvement group contributed throughout the study. Reporting follows the Standards for Reporting Qualitative Research [35], adapted for a CA study [36].

Participants and setting

Recruitment was via four renal units in the UK, purposively selected to represent a range of service models and CKM treatment rates (Table 1). Patients were eligible if they were age  65 and had an eGFR of ≤ 20 mL/min within the last 6 months, and had chronic kidney disease. After assessment of eligibility, information was sent to them in the post in advance of the clinic, enabling patients to opt in or out and have their questions answered prior to their clinic appointment. A two-stage consent process was used, with consent sought in-person by a member of the research team prior to entry to the clinic room, and re-confirmed after the consultation. Representing the range of service models in the four renal units, patients may have been attending outpatient clinics, satellite outpatient clinics, ‘low clearance’ clinics (specialised clinics for people approaching kidney failure), or joint-run renal and palliative care clinics. People who accompanied patients during their consultations (‘companions’) were also included. Included clinicians were doctors or nurses who met patients with CKD with an eGFR of ≤ 20 and discussed treatment options with them. At each site, we aimed to recruit approximately 6 clinicians with diverse characteristics, and to record 4–6 patient consultations per clinician, totalling 40–90 h of recorded data. We estimated that this would result in > 80 survey responses, sufficient for exploratory analyses. For sampling, screening and recruitment details, see Supplementary Material 1.

Table 1 Characteristics of sites and populations served

Data collection

To record the consultations, two GoPro Hero 9 cameras and/or Dictaphones were set up in the consultation room, in unobtrusive places. Recording devices were set to record by RS/LS prior to the consultation start. RS is a healthcare researcher and speech and language therapist; LS is an experienced social scientist with expertise in serious illness research. Researchers were not present during recording except in two instances where requested by the patient. Post-consultation, patients completed a questionnaire either at home, online, or by telephone with RS. Patients and companions who completed questionnaires received a £10 voucher.

Data analysis

Recorded consultations

Consultations were analysed using applied Conversation Analysis (CA), a well-established method for analysing clinical interactions, guided by communication challenges faced by clinicians [37]. Addressing these types of problems typically involves the collection of both observational, interactional and quantitative outcomes data. CS screened all recorded consultations to identify segments where clinicians presented both treatment options, enabling systematic comparison of how options were framed. The identified segments were pseudonymised and transcribed in fine-grained detail using the Jefferson Transcription System [38] and analysed for their position (e.g., where in the consultation they arose); the observable actions being implemented, and their lexical design; and the subsequent turn-by-turn trajectory, including how the patient responded [39]. Initial findings were discussed and analysed in regular group data sessions (CS, RS, LS, RB, RP), with multi-disciplinary co-authors and PPI members. Previously established conversation analytic findings were used as ‘tools’ in the analysis.

Communication practices found recurrently across the data were then tested for association with the post-consultation questionnaire scores.

Given that a patient’s ultimate decision is (a) often made over multiple time points and (b) can change over time, the analysis focuses specifically on the decision-making process, and linking empirical findings of conversational practices to patient reflections of that process, rather than what decision was ultimately made.

Questionnaires

SDM-Q-9/Doc total scores were transformed to a score of 0-100 in line with recommended practice to make the scores more intuitive to interpret [33]; higher scores represent a higher rating of shared decision-making [33]. Median scores for questions were compared between groups according to how treatment options were presented, using a non-parametric Median Test.

Ethics statement

Ethical approval was granted by the HRA London-Bromley Research Ethics Committee (21/LO/0280). Participants gave written informed consent.

Results

Dataset characteristics

110 outpatient consultations were recorded: 105 video-recorded (in-person consultations), 5 audio-recorded (4 telephone consultations, 1 in-person). Consultations involved 94 patients, 40 companions and 38 clinicians (Table 2). Consultations were with nephrology consultants (n = 86/110); nephrology registrars or junior doctors (n = 6), renal education nurses (n = 13), and both palliative care nurses and renal education nurses (n = 5). Patients completed surveys for 85/110 consultations.

Table 2 Patient and clinician demographics – overall and by clinician option-listing strategy

We identified 23/110 conversations in which kidney failure treatments were presented. In 3/23 conversations, there was no mention at all of CKM or ‘not having dialysis’. In 20 consultations, options were listed that included CKM, forming the core collection for analysis (6 h, 41 min of data). These conversations included 16 patients (three patients were recorded more than once); companions were present in 9/20. 17/20 conversations involved consultant doctors; 4/20 (specialist) nurses. There were a total of 21 segments of interaction where options were presented (in one consultation, CKM was presented at two different times, in two different ways).

Participant characteristics

In total, 94 patients and 38 clinicians participated. Patients had a mean age of 77 (range 65–97), included 61 males and 33 females, with a mean eGFR of 15 mL/min (range 4–23), mean frailty score of 1.6 (0–4) and mean comorbidity score of 1 (0–2). Clinician participants had a mean age of 47 (range 31–65); 21 were female, 17 male. Further demographic data are presented in Table 2.

Findings

Approaches to presenting options

We identified two approaches to framing CKM when presenting treatment options. The less common approach (6/21) presented CKM as a main option alongside dialysis. The more common approach (15/21) presented CKM as a subordinate option. Patient and clinician characteristics are compared by approach in Table 2; there were no clear differences between groups. The length of consultation did not differ according to approach used (mean 23 min). Features of the two approaches to framing CKM are explicated and exemplified next (summarised in Table 3), before outlining the interactional consequences of these approaches for patient engagement.

Table 3 Recurrent elements of the two approaches to presenting CKM
CKM as a main option

Less commonly, CKM was presented in a way that frames it as a main option (n = 6). Firstly and crucially, in this approach CKM is framed as being of potential benefit to the patient in terms of quality of life, in all cases. One of the ways this is achieved is through presenting the disadvantages of dialysis; its time burden, and how it makes people feel. In Fig. 1, the doctor refers to the ‘cost’ (line 8) associated with dialysis, which “stops you from doing other things that you might otherwise want to do” (lines 4–5).

Fig. 1
figure 1

Extract 1

The benefit of CKM is also framed positively in terms of the impact upon the patient’s quality of life (e.g. Figure 2, lines 4–5). In all cases, the clinician refers to dialysis’s potentially limited benefit to length of life, for older people in particular, and research evidence is referred to either explicitly as ‘evidence’ (Fig. 3, line 14), or implicitly by referring to ‘what is known’.

Fig. 2
figure 2

Extract 2

Fig. 3
figure 3

Extract 3

Secondly, within this approach CKM tends to be introduced as part of the main decision-making sequence. This is shown in Figs. 2 and 3 (line 1 for both), where CKM is introduced as ‘the other/another option.’ As such, it features as one in a list of options – underscored by the explicit labelling of it as an ‘option.’ Furthermore, with this approach clinicians recurrently do not frame CKM as relevant or preferable to only a minority of patients. In Fig. 3, the clinician even presents CKM as a popular choice (line 19). These features together frame CKM as one of the main options to choose from.

In this approach CKM is also more clearly framed as an active treatment. It is more frequently labelled as CKM, and as a treatment, with details provided of what is involved. For example, the doctor in Fig. 3 refers to “maximum, meaning everything we can do with tablets alone” (lines 35–36), and in Fig. 2, the nurse explicitly labels ‘conservative care’ as treatment (lines 2 and 4), going on to specify that ‘treatment’ involves medication and diet.

CKM as a subordinate option

In the alternative approach, firstly, and most crucially, CKM is not presented as having clear potential benefit for the patient: the disadvantages of dialysis are not explicated, and neither are CKM’s potential advantages. For example, in Fig. 4 (lines 3–4), the only rationale for choosing not to have dialysis is that dialysis is “one step too far.” Significantly adding to the weighting towards dialysis, not having it is equated with not surviving (lines 11–12).

Fig. 4
figure 4

Extract 4

In Fig. 5, when the option of CKM is presented, no rationale for choosing not to have dialysis is provided. Earlier in that conversation, the clinician introduced some disadvantages of dialysis, referring to it as being “quite a big physical burden in terms of how people feel.” However, this disadvantage is not presented as a reason for not choosing dialysis and/or for choosing CKM instead but is raised just before introducing dialysis access.

Fig. 5
figure 5

Extract 5

In this approach CKM is recurrently presented as the last option, after dialysis treatments have been presented. Whilst being presented last may not in and of itself subordinate an option, the positioning of CKM as something extra, beyond the main options, does. The option of CKM is regularly appended to the main list of treatment options in this approach (e.g. Figure 5). Prior to the extract in Fig. 5, the clinician has been closing the conversation by deferring the need for a decision: “go home, think about it, probably come back again you know, an’ then kind of hopefully come to a decision, a bit later down the line.” The option of CKM is then introduced, framed as something extra, rather than explicitly labelled as another option: “The other thing I should say” (line 1). The ‘should’ suggests the clinician is morally obliged to raise this option, indicating a reluctance to raising it, and implying a less favorable option. Not overtly labelling CKM as an option is recurrent in this approach (e.g. Figure 4) which, together with the appended positioning, subordinates CKM as a treatment option. This notion is underscored by framing CKM as relevant or preferable to only a minority of patients: ‘some people’ (Fig. 4, line 3; Fig. 5, line 1; Fig. 6, lines 4–55). Whilst this validates CKM as an option, it frames this choice as less common than choosing dialysis, and no longer ‘mainstream.’ The reference to ‘some people’ also leaves it to the patient to make the inference that the option is relevant to themselves personally.

Fig. 6
figure 6

Extract 6

Compared to dialysis, CKM is also much less frequently labelled explicitly as CKM or even as a treatment. It is more often referred to by negation; as ‘not having dialysis’. Indeed, in Fig. 4 (line 12), dialysis is equated with “the treatment”, implying that not having dialysis is not having treatment. Furthermore, in these cases, ‘not having dialysis’/CKM is not referred to as an option – a notion underscored by the often minimal information provided about what CKM entails. Clinicians often deal explicitly with the possible negative assumption that the patient won’t be cared for with this approach, as in Fig. 5 (lines 7–8: “that doesn’t mean we say goodbye to you”), to suggest something positive; that the patient will still be cared for (see also Fig. 6, line 10). This form of understatement, or litotes [40], is often used to indirectly refer to something delicate. Here it has the effect of avoiding presenting CKM as inherently positive.

In a sub-collection of cases (n = 7), the disadvantages of dialysis and rationale for choosing CKM are presented but they are ruled out as only being relevant to people who differ from the patient, e.g. older patients and/or those with more health problems (Fig. 6, lines 7–9). So whilst potential benefits of CKM are presented, they are then framed as not relevant to this patient. Notably, in only two cases for this approach do clinicians refer to research evidence about how dialysis impacts length of life; in both cases, this is framed as not relevant to the patient.

The interactional consequences of the alternative approaches

When CKM is presented as a main treatment option, more opportunities tend to be provided for the patient to ask questions about CKM or not having dialysis and to provide their perspective about CKM, and therefore to consider it as a relevant option. The patient’s perspective is frequently invited through explicit questions (sometimes termed ‘Patient View Elicitors’ [29]) and less explicitly through not moving the conversation on but providing an interactional slot for the patient to ask questions or provide their perspective about CKM. Following this approach, the patients tended to evaluate not having dialysis as a relevant option in the conversation. This is demonstrated in Fig. 7, below. After discussing the disadvantages of dialysis, the clinician explicitly invites the patient’s perspective (Line 29). The patient then asserts his preference against having dialysis.

Fig. 7
figure 7

Extract 7 (Extract 1 continued)

In contrast, when CKM is presented as a subordinate option, the clinician tends to move the sequence on, away from the ‘option’ of CKM, without first having asked the patient about their perspective or inviting their questions regarding CKM. Furthermore, in these cases patients do not positively evaluate CKM or orient to it as a viable option. In Fig. 8, which follows directly on from Fig. 6, the clinician moves the conversation away from the option of CKM. She does not provide a slot for the patient to assess this option, but instead brings the focus of the conversation back to the patient’s suitability for the two dialysis options, which she positively assesses as ‘great’ (line 26) (see Table 4 for interactional implications by approach).

Fig. 8
figure 8

Extract 8 (Extract 6 continued)

Table 4 The interactional implications of alternative approaches to presenting CKM/not having dialysis within the consultation

Association with post-consultation shared decision-making scores

When clinicians presented CKM as a main (n = 6) rather than subordinate (n = 9) option, median total SDM-Q-9 scores were significantly higher (p = 0.041), as were the medians for questions 3–7 (Q3: p = 0.04; Q4: p = 0.011;Q5: p = 0.002; Q6: p = 0.041; Q7: p = 0.041) (Table 5).

Table 5 Questionnaire results for patients and clinicians according to option-listing approach

There were no significant differences between post-consultation SDM-Q-Doc scores according to option-listing approach.

Discussion

This study provides the first fine-grained analysis of the relationship between the conversational practices used by renal clinicians and patients’ engagement with treatment options and ratings of shared decision-making. As such, our findings illuminate how clinicians’ communication about treatment options influences patient involvement and treatment decisions.

We found that dialysis treatments tended to be presented as the default treatments for advanced kidney disease, with CKM presented as a subordinate option. A Dutch study also reports the same imbalance in how the benefits and harms of kidney failure treatments are communicated [25]. Our research goes further by considering the interactional consequences of this imbalance. By listing CKM as one of several options; labelling it as a treatment option; and framing it as active treatment with potential benefit to this particular individual, patients were more likely to engage with the option of CKM or not having dialysis during the conversation. That is: the clinician was more likely to invite the patient’s perspective and questions, and the patient was more likely to evaluate CKM out loud as a relevant option for them, whether or not this was their ultimate choice. In contrast, when CKM was presented as a subordinate option, the clinician tended to move the sequence on, away from the option of CKM, and there was minimal uptake from the patient and no positive evaluation of CKM as an option.

The CKM as a valid option approach was associated with significantly higher patient-reported shared decision-making scores compared with the ‘CKM as subordinate option’ approach. The latter was associated with an average score of 53.3/100, comparable to scores in a US study of adults aged 70 + years with advanced kidney disease, which found a mean score on the SDM-Q-9 of 52/100, described as suboptimal (with middle values equating to ‘somewhat disagree’ and ‘somewhat agree’) [23]. The specific items that we found to be significantly higher for the approach presenting CKM as a main option ask whether the clinician: told the patient about different treatment options (Q3), explained the benefits and limitations of options (Q4 and 7), and specifically asked about their treatment preference (Q6) (see Appendix 1 and Table 5). Through the empirical analysis of actual conversations we found that all of these conversational activities are indeed absent or limited for Approach 2, in which CKM is framed as a subordinate option. This supports evidence from haemodialysis patients that being informed about treatment options in a balanced way results in higher shared decision-making scores [17]. Our finding of no significant difference in scores for the clinician self-reports of shared decision-making suggests that clinicians may not be aware of the influence their communication approach has on patient-reported experiences of shared decision-making.

Presenting CKM as an option takes one step towards shared decision-making – improving on the three cases we identified in which CKM was not mentioned as a treatment option at all, echoing previous research [25, 26]. But providing options is not enough to engage patients in shared decision-making; clinicians need to do more [29]. Whilst clinicians provide options in both approaches we identified, it is how these options are presented which impacts patients’ engagement with them in the conversation. Our findings thus might help to explain the gap between what clinicians often say (that CKM is available), and what patients often report (that they haven’t heard of CKM) [41].

Our findings highlight the importance of clinicians clearly detailing the advantages and disadvantages of both treatment pathways, supporting evidence that a patient only assesses a future course of action as an option when it is framed as having potential benefit to them [29]. When CKM was framed as a main option, the benefits of CKM and limitations of dialysis were described; this was not the case when it was framed as a subordinate option, and there was also no reference to existing best outcome evidence for each option. This might indicate under-developed communication skills, gaps in clinician knowledge and/or difficulties in translating evidence into practice. By not presenting or downplaying the disadvantages of dialysis, clinicians may be avoiding talk about prognosis and the potential implications of choosing dialysis for patients’ end-of-life care [19, 42]. Fully discussing these implications with patients could help reduce unwanted, futile care [43] and decisional regret [44]. Clinicians may also be concerned about starting up longer conversations, when framing CKM more equitably, and yet we found no significant difference in the length of consultation according to the approach used.

Findings also highlight the importance of using the term ‘Conservative Kidney Management’ (or similar) as an affirmative label [19, 28], rather than simply ‘not having dialysis’, which presents a negative choice or absence of something. Findings from a recent Discrete Choice Experiment likewise demonstrated that older patients prefer a ‘treatment’ option rather than ‘no treatment’ option [45]. Patients are receptive to CKM, when it is framed as an active rather than passive treatment [13]. Ensuring clinicians present CKM as active treatment which can help achieve specific patient goals and/or align with their values, is therefore crucial [19, 41].

These findings begin to specify what person-centred support with treatment decision-making looks like in practice; for example, inviting patients to assert their perspective or ask questions, and framing options as having potential benefit to the patient, so that they may then consider an option as relevant to them (whether they ultimately choose it or not). When clinicians present CKM as a subordinate option, they may be guiding patients towards the treatment they think they will choose, based on their experience and knowledge of the patient [25]. However, this may prevent patients from fully exploring the range of options available to them in time to choose treatment that best fits their preferences. For example, starting dialysis transforms the non-dialysis treatment option from CKM into dialysis discontinuation. Since initiation of dialysis may be associated with loss of residual kidney function [46,47,48], even early discontinuation may be associated with worse survival outcomes compared with CKM, had that been chosen in the first place. A method of stratifying the conversational approach according to specific clinical variables would likewise limit the options available to patients, particularly as these decisions usually occur in advance of when a choice is enacted, during which time these variables are likely to change. Arguably, kidney clinicians should be explicitly asking patients what matters to them [10]. Our analysis of how CKM can be framed as a main and valid option alongside dialysis contributes to a growing body of direct evidence of the impact of clinicians’ presentation of treatment options on shared decision-making [30], informing theoretical concepts of patient-centred care and decision-making support [24].

Whilst we have identified two alternative approaches to presenting CKM, with alternative trajectories for patient engagement, these approaches comprise a number of components or practices which may be used to varying degrees along a cline. For example, in Fig. 5, a CKM as subordinate option case, CKM is labelled as ‘Conservative Care’ rather than simply ‘not having dialysis.’ Conversely, clinicians presenting CKM as a main option may still display some orientation to dialysis as default, reflecting and contributing to widespread assumptions that advanced kidney disease leads to dialysis. The crucial component which distinguishes the two approaches is whether CKM is presented as having potential benefit to the patient.

Study strengths include recording a large sample of consultations with a diverse group of clinicians, and following a rigorous screening process to identify specific conversations in which treatments were listed (see Supplementary Material 2). The analysis is based on a limited number of cases but provides evidence of a robust pattern identified across a variety of settings and practitioners. Whilst our survey results reveal an indicative and novel relationship between communication practices and patient-reported outcomes, results should be interpreted with caution due to the number of consultations included in this analysis. Consultation extracts were regularly analysed in group data sessions, but audiovisual data were not independently categorized by another researcher. Finally, a risk of video-recording consultations is that parties might not communicate in the usual way. However, most people feel only slightly or not at all influenced by video-recording [49] and patients do not feel that it alters the treatment they receive [50].

Conclusions

In conclusion, in our study, when talking to older people, kidney doctors and nurses more commonly presented dialysis as the default treatment for advanced kidney disease and CKM as a subordinate option. Presenting conservative management and dialysis as on an equal footing enables patient to take a more active role in decision-making. These findings have important implications for clinical practice and education.

Data availability

Restrictions apply to the availability of study data, however requests to access the dataset can be made to the lead author (LES) 6 months after the study close date (30 November 2025).

Abbreviations

CKM:

Conservative kidney management

DOC:

Doctor

NUR:

Nurse

MC:

My clinician

PAT:

Patient

References

  1. Moss AH. Revised Dialysis Clinical Practice Guideline promotes more informed decision-making. Clin J Am Soc Nephrol. 2010;5(12):2380–3.

    Article  PubMed  Google Scholar 

  2. NICE. Renal replacement therapy and conservative management (NG107). National Institute for Health and Care Excellence; 2018.

  3. Harris DCH, Davies SJ, Finkelstein FO, Jha V, Donner JA, Abraham G, et al. Increasing access to integrated ESKD care as part of universal health coverage. Kidney Int. 2019;95(4):S1–33.

    Article  PubMed  Google Scholar 

  4. Murtagh FE, Burns A, Moranne O, Morton RL, Naicker S. Supportive care: Comprehensive Conservative Care in end-stage kidney disease. Clin J Am Soc Nephrol. 2016;11(10):1909–14.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Voorend CGN, van Oevelen M, Verberne WR, van den Wittenboer ID, Dekkers OM, Dekker F, et al. Survival of patients who opt for dialysis versus conservative care: a systematic review and meta-analysis. Nephrol Dialysis Transplantation. 2022;37(8):1529–44.

    Article  Google Scholar 

  6. Buur LE, Madsen JK, Eidemak I, Krarup E, Lauridsen TG, Taasti LH, Finderup J. Does conservative kidney management offer a quantity or quality of life benefit compared to dialysis? A systematic review. BMC Nephrol. 2021;22(1):307.

    Article  PubMed  Google Scholar 

  7. Pyart R, Aggett J, Goodland A, Jones H, Prichard A, Pugh J et al. Exploring the choices and outcomes of older patients with advanced kidney disease. PLoS ONE. 2020;15(6).

  8. Chou A, Li CL, Farshid S, Hoffman A, Brown M. Survival, symptoms and hospitalization of older patients with advanced chronic kidney disease managed without dialysis. Nephrol Dialysis Transplantation. 2023;38(2):405–13.

    Article  CAS  Google Scholar 

  9. Saeed F, Schell JO. Shared decision making for older adults: Time to Move Beyond Dialysis as a default. Ann Intern Med. 2023;176(1):129–30.

    Article  PubMed  Google Scholar 

  10. Verberne WR, Stiggelbout AM, Bos WJW, van Delden JJM. Asking the right questions: towards a person-centered conception of shared decision-making regarding treatment of advanced chronic kidney disease in older patients. BMC Med Ethics. 2022;23(1):47.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Hole B, Scanlon M, Tomson C. Shared decision making: a personal view from two kidney doctors and a patient. Clin Kidney J. 2023;16(Suppl 1):i12–9.

    Article  PubMed  PubMed Central  Google Scholar 

  12. de Jong Y, van der Willik EM, Milders J, Meuleman Y, Morton RL, Dekker FW, van Diepen M. Person centred care provision and care planning in chronic kidney disease: which outcomes matter? A systematic review and thematic synthesis of qualitative studies care planning in CKD: which outcomes matter? BMC Nephrol. 2021;22(1).

  13. Oestreich T, Sayre G, O’Hare AM, Curtis JR, Wong SPY. Perspectives on Conservative Care in Advanced Kinney Disease: a qualitative study of US patients and family members. Am J Kidney Dis. 2021;77(3):355.

    Article  PubMed  Google Scholar 

  14. Kim EY, Son YJ. Developing a conceptual model of older patients’ decision-making process in choosing dialysis or conservative care using meta-ethnography. J Adv Nurs. 2022;78(1):1–13.

    Article  PubMed  Google Scholar 

  15. Hussain JA, Flemming K, Murtagh FE, Johnson MJ. Patient and health care professional decision-making to commence and withdraw from renal dialysis: a systematic review of qualitative research. Clin J Am Soc Nephrol. 2015;10(7):1201–15.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Selman LE, Bristowe K, Higginson IJ, Murtagh FEM. The views and experiences of older people with conservatively managed renal failure: a qualitative study of communication, information and decision-making. BMC Nephrol. 2019;20.

  17. Schellartz I, Ohnhaeuser T, Mettang T, Scholten N. Information about different treatment options and shared decision making in dialysis care - a retrospective survey among hemodialysis patients. BMC Health Serv Res. 2021;21(1):673.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Dahm MR, Raine SE, Slade D, Chien LJ, Kennard A, Walters G, et al. Older patients and dialysis shared decision-making. Insights from an ethnographic discourse analysis of interviews and clinical interactions. Patient Educ Couns. 2024;122:108124.

    Article  PubMed  Google Scholar 

  19. Ladin K, Pandya R, Kannam A, Loke R, Oskoui T, Perrone RD, et al. Discussing Conservative Management with older patients with CKD: an interview study of nephrologists. Am J Kidney Dis. 2018;71(5):627–35.

    Article  PubMed  PubMed Central  Google Scholar 

  20. O’Riordan J, Noble H, Kane PM, Smyth A. Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study. BMJ Supportive Palliat Care 2020;10(4).

  21. Roderick P, Rayner H, Tonkin-Crine S, Okamoto I, Eyles C, Leydon G et al. A national study of practice patterns in UK renal units in the use of dialysis and conservative kidney management to treat people aged 75 years and over with chronic kidney failure. Health Serv Delivery Res 2015;3(12).

  22. RightCare. NHS Atlas of Variation in Healthcare for People with Kidney Disease: Reducing unwarranted variation to increase value and improve quality. London, UK; 2012.

  23. Frazier R, Levine S, Porteny T, Tighiouart H, Wong JB, Isakova T, et al. Shared decision making among older adults with Advanced CKD. Am J Kidney Dis. 2022;80(5):599–609.

    Article  CAS  PubMed  Google Scholar 

  24. Saeed F, Shah AY, Allen RJ, Epstein RM, Fiscella KA. Communication principles and practices for making shared decisions about renal replacement therapy: a review of the literature. Curr Opin Nephrol Hypertens. 2021;30(5):507–15.

    Article  PubMed  PubMed Central  Google Scholar 

  25. van Dulmen S, Peereboom E, Schulze L, Prantl K, Rookmaaker M, van Jaarsveld BC, et al. The use of implicit persuasion in decision-making about treatment for end-stage kidney disease. Perit Dial Int. 2022;42(4):377–86.

    Article  PubMed  Google Scholar 

  26. Dahm MR, Raine SE, Slade D, Chien LJ, Kennard A, Walters G, et al. Shared decision making in chronic kidney disease: a qualitative study of the impact of communication practices on treatment decisions for older patients. BMC Nephrol. 2023;24(1):383.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Barnes RK. Conversation analysis of communication in Medical Care: description and Beyond. Res Lang Social Interact. 2019;52(3):300–15.

    Article  Google Scholar 

  28. Stivers T. Non-antibiotic treatment recommendations: delivery formats and implications for parent resistance. Soc Sci Med. 2005;60(5):949–64.

    Article  PubMed  Google Scholar 

  29. Toerien M, Reuber M, Shaw R, Duncan R. Generating the perception of choice: the remarkable malleability of option-listing. Sociol Health Illn. 2018;40(7):1250–67.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Land V, Parry R, Seymour J. Communication practices that encourage and constrain shared decision making in health-care encounters: systematic review of conversation analytic research. Health Expect. 2017;20(6):1228–47.

    Article  PubMed  PubMed Central  Google Scholar 

  31. McCabe R, John P, Dooley J, Healey P, Cushing A, Kingdon D, et al. Training to enhance psychiatrist communication with patients with psychosis (TEMPO): cluster randomised controlled trial. Br J Psychiatry. 2016;209(6):517–24.

    Article  PubMed  Google Scholar 

  32. Mangione-Smith R, Robinson JD, Zhou C, Stout JW, Fiks AG, Shalowitz M, et al. Fidelity evaluation of the dialogue around respiratory illness treatment (DART) program communication training. Patient Educ Couns. 2022;105(7):2611–6.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Kriston L, Scholl I, Hölzel L, Simon D, Loh A, Härter M. The 9-item Shared decision making questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns. 2010;80(1):94–9.

    Article  PubMed  Google Scholar 

  34. Scholl I, Kriston L, Dirmaier J, Buchholz A, Härter M. Development and psychometric properties of the Shared decision making questionnaire - physician version (SDM-Q-Doc). Patient Educ Couns. 2012;88(2):284–90.

    Article  PubMed  Google Scholar 

  35. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.

    Article  PubMed  Google Scholar 

  36. Parry RH, Land V. Systematically reviewing and synthesizing evidence from conversation analytic and related discursive research to inform healthcare communication practice and policy: an illustrated guide. BMC Med Res Methodol. 2013;13:69. https://doiorg.publicaciones.saludcastillayleon.es/10.1186/1471-2288-13-69.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Barnes R. Methods for ‘applying’ conversation analysis. The Cambridge handbook of methods in conversation analysis (pp xx-xx). Cambridge: Cambridge University Press; 2024.

  38. Hepburn A, Bolden G. Transcribing for social research. London: Sage; 2017.

    Book  Google Scholar 

  39. Jack Sidnell TS, editor. The handbook of Conversation Analysis. Oxford, U.K.: Wiley-Blackwell; 2012.

    Google Scholar 

  40. Lutfey K, Maynard DW. Bad news in oncology: how physician and patient talk about death and dying without using those words. Social Psychol Q. 1998;61(4):321–41.

    Article  Google Scholar 

  41. Hamroun A, Glowacki F, Frimat L. Comprehensive conservative care: what doctors say, what patients hear. Nephrol Dialysis Transplantation. 2023;38(11):2428–43.

    Article  Google Scholar 

  42. Cortez D, Maynard DW, Campbell TC. Creating space to discuss end-of-life issues in cancer care. Patient Educ Counselling. 2019;102(2):216–22.

    Article  Google Scholar 

  43. Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA. Efficacy of Advance Care Planning: a systematic review and Meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–89.

    Article  PubMed  Google Scholar 

  44. Saeed F, Ladwig SA, Epstein RM, Monk RD, Duberstein PR. Dialysis regret: prevalence and correlates. Clin J Am Soc Nephrol. 2020;15(7):957–63.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Hole B, Coast J, Caskey FJ, Selman LE, Rooshenas L, Kimpton G, Snead C, Field A, Morton R. A choice experiment of older patients’ preferences for kidney failure treatments. Kidney Int. 2024 (in press). https://doiorg.publicaciones.saludcastillayleon.es/10.1016/j.kint.2024.08.032.

  46. De Jager DJ, Halbesma N, Krediet RT, Boeschoten EW, Cessie L, Dekker S, Grootendorst FW, D. C., Group FTNS. Is the decline of renal function different before and after the start of dialysis? Nephrol Dialysis Transplantation. 2013;28:698–705.

    Article  Google Scholar 

  47. Jansen MAM, Hart AAM, Korevaar JC, Dekker FW, Boeschoten EW, Krediet RT. Predictors of the rate of decline of residual renal function in incident dialysis patients. Kidney Int. 2002;62:1046–53.

    Article  PubMed  Google Scholar 

  48. Daugirdas JT, Greene T, Rocco MV, Kaysen GA, Depner TA, Levin NW, Chertow GM, Ornt DB, Raimann JG, Larive B, Kliger AS. Effect of frequent hemodialysis on residual kidney function. Kidney Int. 2013;83:949–58.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  49. Parry R, Pino M, Faull C, Feathers L. Acceptability and design of video-based research on healthcare communication: evidence and recommendations. Patient Educ Couns. 2016;99(8):1271–84.

    Article  PubMed  Google Scholar 

  50. Themessl-Huber M, Humphris G, Dowell J, Macgillivray S, Rushmer R, Williams B. Audio-visual recording of patient-GP consultations for research purposes: a literature review on recruiting rates and strategies. Patient Educ Couns. 2008;71(2):157–68.

    Article  PubMed  Google Scholar 

  51. UK Renal Registry. UK Renal Registry 24th Annual Report – data to 31/12/2020, Bristol, UK; 2022.

  52. Sok M, Zavrl M, Greif B, Srpcic M. Objective assessment of WHO/ECOG performance status. Support Care Cancer. 2019;27(10):3793–8.

    Article  PubMed  Google Scholar 

  53. Davies SJ, Phillips L, Naish PF, Russell GI. Quantifying comorbidity in peritoneal dialysis patients and its relationship to other predictors of survival. Nephrol Dialysis Transplantation. 2002;17(6):1085–92.

    Article  Google Scholar 

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Acknowledgements

This study was conducted during a time of unprecedented pressure on users and providers of healthcare services. We are hugely grateful to all the patients and companions who participated, allowing their private consultations to be recorded and sharing their views and experiences with the research team. We would also like to thank all the staff who assisted with screening and recruitment, members of the PPI group who informed the development and conduct of this study (Jos Darling, Anne Parfitt, Roger Graham, Simon Miller, Max Harris), and the expert Project Advisory Group for their valuable advice and input (Dr Barnaby Hole, Prof Hilary Bekker, Dr Anna Winterbottom, Dr Katherine Bristowe and Dr Emma Murphy).

Funding

This report represents independent research sponsored by the University of Bristol, conducted as part of an NIHR Career Development Fellowship to LS (CDF-2018-11-ST2-009). FEMM is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.

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Authors

Contributions

LES – conceptualisation; funding acquisition; methodology; supervision; formal analysis; writing - original draft, review and editing. CS - formal analysis, writing - original draft, review and editing. RS – data collection, formal analysis, writing - original draft, review and editing. FEMM - funding acquisition; methodology; writing – review and editing. JAT - funding acquisition; methodology; writing – review and editing. RP - methodology; formal analysis; writing – review and editing. FJC - funding acquisition; methodology; writing – review and editing. RKB - funding acquisition; formal analysis; methodology; writing – review and editing.

Corresponding author

Correspondence to Lucy E. Selman.

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Ethics approval and consent to participate

Ethical approval was granted by the HRA London-Bromley Research Ethics Committee (21/LO/0280). Participants gave written informed consent.

Consent for publication

All participants have given consent for their anonymous quotes and anonymised transcripts of their interactions to be used in publications.

Competing interests

FJC is Chief Investigator for the Prepare for Kidney Care Study, a randomised controlled trial comparing outcomes for older people preparing for kidney dialysis vs. CKM (https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/prepare-for-kidney-care/).

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Selman, L.E., Shaw, C.B., Sowden, R. et al. Communicating treatment options to older patients with advanced kidney disease: a conversation analysis study. BMC Nephrol 25, 417 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12882-024-03855-w

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