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Wong SPY, McFarland LV, Liu C, Laundry RJ, Hebert PL, O’Hare AM. Care Practices for Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis. JAMA Intern Med. 2019;179(3):305–313. doi:10.1001/jamainternmed.2018.6197
How do patient decisions to forgo dialysis unfold in real-world clinical settings?
In a qualitative analysis of the medical record notes of 851 patients with advanced kidney disease who decided to forgo maintenance dialysis, 3 prominent themes emerged: (1) clinicians did not readily accept patients’ wishes not to start dialysis, (2) clinicians decided particular patients were not candidates for dialysis seemingly without consideration of the patients’ goals and values, and (3) clinicians seemed to believe they had little more to offer patients who would not be starting dialysis.
There is need for more patient-centered models of care for advanced kidney disease capable of supporting those who do not wish to start dialysis.
Although maintenance dialysis is a treatment choice with potential benefits and harms, little is known about care practices for patients with advanced chronic kidney disease who forgo this treatment.
To describe how decisions not to start dialysis unfold in the clinical setting.
Design, Setting, and Participants
A qualitative study was performed of documentation in the electronic medical records of 851 adults receiving care from the US Veterans Health Administration between January 1, 2000, and October 1, 2011, who had chosen not to start dialysis. Qualitative analysis was performed between March 1, 2017, and April 1, 2018.
Main Outcomes and Measures
Dominant themes that emerged from clinician documentation of clinical events and health care interactions between patients, family members, and clinicians relevant to the decision to forgo dialysis.
In the cohort of 851 patients (842 men and 9 women; mean [SD] age, 75.0 [10.3] years), 567 (66.6%) were white. Three major dynamics relevant to understanding how decisions to forgo dialysis unfolded were identified. The first dynamic was that of dialysis as the norm: when patients expressed a desire to forgo dialysis, it was unusual for clinicians to readily accept patients’ decisions. Clinicians tended to repeatedly question this preference over time, deliberated about patients’ competency to make this decision, used a variety of strategies to encourage patients to initiate dialysis, and prepared for patients to change their minds and start dialysis. The second dynamic arose when patients were not candidates for dialysis: clinicians viewed particular patients as not candidates or appropriate for dialysis, usually on the basis of specific characteristics and/or expected prognosis, rather than after consideration of patients’ goals and values. When clinicians decided patients were not candidates for dialysis, there seemed to be little room for uncertainty in these decisions. The third dynamic occurred when clinicians believed they had little to offer patients beyond dialysis: when it was clear that patients would not be starting dialysis, nephrologists often signed off from their care and had few recommendations other than referral to hospice care.
Conclusions and Relevance
These findings describe an all-or-nothing approach to caring for patients with advanced chronic kidney disease in which initiation of dialysis served as a powerful default option with few perceived alternatives. Stronger efforts are needed to develop a more patient-centered approach to caring for patients with advanced chronic kidney disease that is capable of proactively supporting those who do not wish to start dialysis.
Maintenance dialysis is a form of life support for patients with advanced chronic kidney disease (CKD). However, treatment with dialysis does not always have the intended effect of extending life or restoring health and quality of life for those with advanced CKD. For some patients, the potential benefits of dialysis in terms of extending life and managing signs and symptoms of uremia may be outweighed by its potential harms, which include the substantial treatment burden and prospect of a highly medicalized lifestyle1-3 and risk of progressive loss of physical, social, and cognitive function.4-7
Available research on decision making about dialysis in the United States has been limited largely to patients who are receiving maintenance dialysis and suggests that dialysis is often framed to patients as a necessity rather than a treatment choice,8-12 and that patients sometimes struggle with clinicians about whether and when to begin this treatment.8,11 Prior work in the Veterans Affairs (VA) health care system found that it was relatively unusual for patients with advanced CKD to forgo dialysis, with only 14.5% of patients (or those making decisions on their behalf) choosing not to pursue dialysis.13 Available evidence suggests that this practice may be even less common in other health care settings in the United States.14,15
To gain a deeper understanding of how decisions not to pursue dialysis unfold in the clinical setting, we conducted an in-depth qualitative analysis of the medical records of members of a cohort of VA patients with advanced CKD who decided not to pursue dialysis.13
Using a previously published approach,8 we conducted a qualitative analysis of the clinical notes of selected members of a national cohort of 28 568 patients with advanced CKD.13 As described in detail elsewhere,13 cohort members had at least 2 outpatient measures of estimated glomerular filtration rate less than 15 mL/min/1.73 m2 separated by at least 90 days in the VA between January 1, 2000, and December 31, 2009, and were followed up from the date of their second estimated glomerular filtration rate of less than 15 mL/min/1.73 m2 during this time frame through death or October 1, 2011. During follow-up, 19 165 cohort members were treated with dialysis based on either enrollment in the United States Renal Data System (a national registry of patients undergoing maintenance dialysis) or a dialysis procedure code in VA and Medicare files. Among the remaining 9403 cohort members, we selected a random sample of 1928 patients for in-depth review of their national VA electronic medical record to determine the treatment decision made with respect to dialysis closest to the end of follow-up. Of the patients selected for medical record review, 437 were found to have received dialysis based on documentation in progress notes despite not being registered in United States Renal Data System or having a dialysis procedure code, and 640 had not started dialysis by the end of follow-up but were discussing and/or preparing for this possibility. The analysis described here was conducted among the remaining 851 patients included in the medical record review for whom there had been a decision not to start dialysis made by either the patients themselves, their family members, and/or their clinicians. For the 812 patients (95.4%) who died during follow-up, the decision not to start dialysis reflected their treatment decision closest to the time of death. We used a combination of linked administrative and clinical data from VA and Medicare files to define and characterize the study cohort.13,16 The institutional review boards at the VA Puget Sound Health Care System and the University of Washington approved this study and waived the requirement for informed consent for the following reasons: (1) the study was deemed to be of minimal risk to study participants; (2) this is a retrospective study in which all the patients had died by the time the study was conducted; and (3) there was no contact information within the data sources to enable us to contact legal next of kin for consent.
Progress notes and other documentation in the electronic medical record are available for all episodes of care at VA facilities as Text Integration Utilities notes in the VA Corporate Data Warehouse. Using Lucene text-search software,17 1 of us (S.P.Y.W.) searched Text Integration Utilities notes for each patient’s entire medical record through the end of follow-up and abstracted passages containing information relevant to decision making regarding dialysis. To ensure that all information pertaining to decisions about dialysis was reviewed, we used catch-all query terms, such as kidney disease, end-stage renal disease, and dialysis to locate all potentially relevant notes.
Qualitative analysis was performed from March 1, 2017, and April 1, 2018. We used an inductive approach to content analysis18 to analyze passages abstracted from the electronic medical record. One of us (S.P.Y.W.) reviewed all abstracted passages for each patient, openly coding for emergent themes pertaining to the decision to forgo dialysis. In parallel, another 2 of us (L.V.M. and A.M.O.) independently reviewed and openly coded abstracted passages for a random 20% sample of patients (n = 168). All 3 of us then collectively reviewed the codes and associated passages for the 20% sample and, using an iterative and consensus-based approach, resolved differences in interpretation of passages and refined code definitions.19,20 All 3 of us also reviewed the list of codes and associated passages generated by S.P.Y.W after reviewing records from all 851 patients to confirm thematic saturation based on review of the 20% sample.19 Dominant themes were identified on the basis of the consistency with which they emerged in passages.21 Finally, we assembled selected themes into larger thematic categories, returning as needed to the passages in the medical record to ensure that the final thematic schema was well-grounded in the data.20 We used ATLAS.ti qualitative analysis software, version 8 (GmbH) to facilitate organization of codes and abstracted passages.
Of the 851 patients included in this analysis (842 men and 9 women; mean [SD] age, 75.0 [10.3] years), 567 (66.6%) were white (Table 1).8,9 During a median follow-up of 0.5 years, 812 cohort members (95.4%) died, and 323 (38.0%) enrolled in hospice. In qualitative analysis, the following 3 dominant and interrelated themes emerged that were relevant to understanding how decisions to forgo dialysis unfolded: dialysis as the norm, patient not a candidate for dialysis, and having little to offer beyond dialysis.
Many of the patients included in this cohort had voiced a strong desire not to start dialysis. For example, it was not uncommon to see statements from patients recorded in clinician notes indicating that they would rather “die” than undergo dialysis treatment. In these instances, clinicians did not readily accept or fulfill patients’ preferences, and instead repeatedly questioned the patients’ decision, deliberated over patients’ competency to make decisions about dialysis, encouraged patients to initiate dialysis, and prepared for patients to change their minds and start dialysis (Table 2).
Although we found a few instances in which clinicians seemed to readily accept patients’ expressed wishes not to pursue dialysis (patient 1), it was more common for clinicians to question this decision, broaching the topic repeatedly over time (Table 2). Repeat questioning could come from the same or different clinicians (patient 2) and were often prompted by transitions of care (patient 3). Although repeat questioning could serve to clarify patients’ preferences (patient 4) and confirm consistency over time and/or consensus among family members (patient 5), this questioning could also be a source of frustration (patient 6) and even hostility (patient 7) for some patients.
When patients refused to initiate dialysis, clinicians were led to deliberate over patients’ competency to make this decision (Table 2). Concerns documented included whether patients might be suicidal or depressed (patient 8) or emotional or irrational (patient 9), or lack sufficient insight or information to be able to make informed decisions about undergoing dialysis (patient 10). When patients had a history of mental illness (patient 11), appeared to be depressed (patient 12), or had given what seemed to clinicians to be conflicting messages about their goals of care (eg, refusing dialysis treatment but also declining do not resuscitate status) (patient 13), this could lead clinicians to question whether patients’ wishes to forgo dialysis should be honored. Clinicians might consult with mental health services and hospital ethics committees before upholding patients’ wishes not to pursue dialysis.
When patients expressed a desire to forgo dialysis, clinicians used a range of strategies to encourage initiation of dialysis (Table 2). These strategies included attempts to “persuade” or “convince” patients to start dialysis (patient 14) and to normalize dialysis treatment by framing the decision to forgo dialysis in negative terms, akin to “giving up,” or “choosing death” or their own “demise” (patient 15). Clinicians often enlisted the help of family members in discussions about starting dialysis (patient 16). Clinicians might also present dialysis as a short-term or interim treatment, offering a “trial” of dialysis (patient 17), dialysis as a “bridge” to buy time for other treatments (patient 18), or as temporary support for acute kidney injury (patient 19). We found only a few examples of clinicians who interceded on the patient’s behalf when other clinicians and/or family members seemed to be pressuring patients to accept dialysis (patient 20).
Patients who were refusing dialysis might be described as “difficult,” “in denial,” and “not ready” to face the “need” for dialysis (patient 21) (Table 2). Clinicians expressed skepticism that patients who said they did not want to start dialysis would actually be successful in this endeavor, expecting instead that they would eventually change their minds and go on to initiate dialysis when they became sicker (patient 22). Even when patients expressed a desire not to initiate dialysis before the need arose, clinicians tended to view these decisions as still up for discussion (patient 23) and as not final until patients reached a point where they were actually facing this need (patient 24). We found examples of clinicians reminding patients who seemed resolute about not starting dialysis that they could always change their mind (patient 25) and recommending that such patients still take steps to prepare for dialysis in case they changed their minds (patient 26).
Unlike for patients described above who were refusing dialysis, we saw a different dynamic at play in situations in which clinicians did not consider patients to be “candidates” or “appropriate” for dialysis (Table 3). Determination of candidacy for dialysis seemed to hinge on particular patient characteristics or perceived poor prognosis, with little or no mention in clinician notes of the values and goals of individual patients. In these instances, clinician notes seemed to convey a high degree of certainty that patients did not stand to benefit from dialysis.
Medical record notes routinely included language discussing whether patients were candidates or appropriate for dialysis (Table 3). Notions of candidacy and appropriateness tended to arise in situations in which there were pragmatic concerns about whether patients would “tolerate” (patient 27) or “comply” with (patient 28) the dialysis procedure itself or when there was concern that dialysis might not lengthen life (patient 29). Questions about candidacy and appropriateness tended to arise in the context of specific patient characteristics, such as advanced age and disability (patient 30). We found only 1 example where the patient’s preference not to initiate dialysis was explicitly considered by clinicians as a reason that he was not a candidate for dialysis (patient 31). Rather, we typically found no documentation to suggest that patients’ goals and values had informed this assessment.
When clinicians did not view patients as candidates for dialysis, their language conveyed a high degree of certainty that dialysis would not be beneficial but would rather be potentially harmful (patient 32) (Table 3). Clinician documentation also referenced patients’ other serious illnesses and whether they were receiving life-prolonging treatment for these illnesses to support arguments about the limited value of dialysis (patient 33), even for some patients whose prognosis could not be pinpointed (patient 34). Although patients were generally accepting of clinicians’ judgements of candidacy (patient 35), family members did not always agree with this decision (patient 36).
When it became clear to clinicians that patients would not be initiating dialysis—either because they were determined to forgo this treatment or because they were not viewed as being candidates for dialysis—documentation in the medical records seemed to suggest that clinicians believed they had little else to offer the patient (Table 4).
When it was clear that patients would not be starting dialysis, we found a few examples of nephrology clinicians who offered to continue to actively manage these patients’ care or to make themselves available to patients on an as-needed basis (patient 37) (Table 4). More commonly, we found documentation to suggest that the nephrology team believed they “had nothing more to offer” and “signed off” from patients’ care (patient 38). We also found documentation to suggest that patients also perceived nephrology services as part of the pathway to dialysis (patient 39).
When patients would not be starting dialysis, clinicians described a shortage of alternative treatments that could be offered to patients in place of dialysis (patient 40) (Table 4). The decision not to start dialysis also tended to shut down other treatment options. For example, interventions that might accelerate the loss of remaining kidney function, such as surgery and cardiac catheterization, were intentionally avoided (patient 41). Instead, these patients were described as “eligible” or “candidates” for hospice care (patient 42) and were encouraged to enroll in hospice (patient 43). Although few patients (or their families) readily agreed to enter hospice care (patient 44), many patients were described as being “resistant” to entering hospice care (patient 45) or “not ready” to do so until their condition substantially deteriorated (patient 46).
This work among a national cohort of patients with advanced CKD in whom there was a decision to forgo dialysis provides an important window on how these decisions unfold in real-world clinical settings in a large US health system. Dialysis served as a powerful default treatment with few perceived alternatives. Patients who did not wish to start dialysis had to resist immense pressure from clinicians to do so, while patients who were not viewed as candidates for dialysis seemed to have little say in the matter.
Contemporary clinical practice guidelines favor moving away from a one-size-fits-all approach and toward a more patient-centered approach to care for patients with advanced CKD in which all clinical decisions are responsive to and uphold what matters most to individual patients.22 To support a more patient-centered approach, clinical guidelines stress the importance of early and ongoing discussion of treatment options and maximizing choice around treatment modality to include home dialysis, time-limited trials of dialysis, and palliative dialysis, as well as alternatives to dialysis, such as conservative management.23-26 However, our results indicate that among this subgroup of patients with advanced CKD who did not initiate dialysis, the goals, values, and preferences of individual patients did not weigh heavily in clinicians’ approaches to decision making regarding dialysis. In fact, we found examples of how some of the guideline-recommended strategies, such as continually revisiting decisions about dialysis and expanding the different options for dialysis treatment, could sometimes cross the line between preserving patient choice and undermining it when those strategies were not fully grounded in the principles of patient-centered care.
The picture that emerged from our analysis was a crisis-oriented approach to decision making for dialysis in which patients’ expressed desire not to pursue dialysis was often not honored until late in the course of illness, by which time they were facing a choice between dialysis or death. Rather than create preemptive plans to support patients’ wishes not to undergo dialysis, clinicians tended to initially respond with encouragement and expectation for patients to change their minds and start dialysis. These observations are consistent with the findings of several recent studies demonstrating clinicians’ limited experience with conservative management of patients who chose not to pursue dialysis27 and a perception of conservative care as an option of last resort.28,29 This kind of approach stands in stark contrast to programs in place in several other developed countries, where formal pathways of conservative care have been established to encourage proactive decisions about dialysis before the need arises and to support patients who do not wish to pursue dialysis.30-33 In this context, available evidence suggests that, for older adults with a high burden of comorbidity, conservative care models may provide similar life expectancy34-38 and quality of life39-41 to that achieved with dialysis treatment. Taken together, our findings underscore the need to develop the cultural and clinical infrastructure to proactively support patients with advanced CKD who choose not to pursue dialysis.
This study has several limitations. First, although the VA is the largest integrated health system in the United States, our findings may not reflect care for groups not well represented in the VA, such as women, or care outside the VA. Second, the medical record permits a broad and longitudinal view of care for individual patients through documentation by multiple clinicians and in a range of settings. Nonetheless, what can be learned from the medical record is ultimately limited to what clinicians chose to document and provides only limited insight into the patient perspective or experience. Third, because documentation was not uniform across clinicians and patients, we could not reliably determine whether particular themes were present or absent in each case to measure counts. Themes identified were also complex and could not be precisely rendered into dichotomous variables. Hence, we could not estimate their prevalence or infer their generalizability. Fourth, we selected to present only dominant themes; thus, findings reported here are not exhaustive of all themes relevant to decisions to forgo dialysis. Finally, because follow-up for our study ended in 2011, it is possible that our results do not reflect contemporary practices. We believe this is unlikely because the incidence of maintenance dialysis in the United States has not changed appreciably in more recent years,42 and conservative care programs of the kind found in other developed countries remain in their infancy in the United States.43
This study of a national cohort of patients with advanced CKD not treated with dialysis provides an important window on decision making regarding dialysis in a large US health system. Our findings describe an all-or-nothing approach to care for patients with advanced CKD in which dialysis serves as a powerful default with few perceived alternatives. Regardless of whether patients had to resist clinicians’ recommendations to undergo dialysis or were not considered candidates for dialysis, their goals and values did not seem to figure prominently in the decision making process. Collectively, these findings call for stronger efforts to develop more patient-centered models of care for patients with advanced CKD with the capacity to proactively support those who do not wish to pursue dialysis.
Accepted for Publication: September 17, 2018.
Corresponding Author: Susan P. Y. Wong, MD, MS, Health Service Research and Development Center, Renal Dialysis Unit, Veterans Affairs Puget Sound Health Care System, 1660 S Columbian Way, Bldg 100, Seattle, WA 98108 (firstname.lastname@example.org).
Published Online: January 22, 2019. doi:10.1001/jamainternmed.2018.6197
Author Contributions: Dr Wong had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Wong, Hebert, O’Hare.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Wong, McFarland.
Critical revision of the manuscript for important intellectual content: All authors.
Obtained funding: Wong, Liu, Hebert, O’Hare.
Administrative, technical, or material support: Wong, McFarland, Laundry, O’Hare.
Conflict of Interest Disclosures: Dr Wong reported receiving teaching honoraria from VitalTalk in the past 3 years. Dr O’Hare reported receiving speaking honoraria from Fresenius Medical Care, Dialysis Clinics Inc, The Japanese Society for Dialysis and Transplantation, the University of Alabama, and the University of Pennsylvania; receiving an honorarium from UpToDate; and participating in the Health and Aging Policy Fellows Program supported by the John A. Hartford Foundation and West Health and the American Political Science Association’s Congressional Fellowship Program. No other disclosures were reported.
Funding/Support: This work was supported by grant 1K23DK107799-01A1 from the National Institutes of Health (Dr Wong) and grants IIR 09-094 (Dr Hebert) and IIR 12-126 (Dr O’Hare) from the Veterans Affairs Health Services Research and Development.
Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position or policy of the Department of Veterans Affairs.
Additional Contributions: Christine Sulc, BA, and Whitney Showalter, BA, Veterans Affairs Health Services Research and Development Center, assisted with study coordination. They received salary support for their work.