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Abstract
Background and objective To ensure that decisions to start and stop dialysis in ESRD are shared, the factors that affect patients and health care professionals in making such decisions must be understood. This systematic review sought to explore how and why different factors mediate the choices about dialysis treatment.
Design, setting, participants, & measurements MEDLINE, Embase, CINAHL, and PsychINFO were searched for qualitative studies of factors that affect patients’ or health care professionals’ decisions to commence or withdraw from dialysis. A thematic synthesis was conducted.
Results Of 494 articles screened, 12 studies (conducted from 1985 to 2014) were included. These involved 206 patients (most receiving hemodialysis) and 64 health care professionals (age ranges: patients, 26–93 years; professionals, 26–61 years). For commencing dialysis, patients based their choice on "gut instinct," as well as deliberating over the effect of treatment on quality of life and survival. How individuals coped with decision-making was influential: Some tried to take control of the problem of progressive renal failure, whereas others focused on controlling their emotions. Health care professionals weighed biomedical factors and were led by an instinct to prolong life. Both patients and health care professionals described feeling powerless. With regard to dialysis withdrawal, only after prolonged periods on dialysis were the realities of life on dialysis fully appreciated and past choices questioned. By this stage, however, patients were physically dependent on treatment. As was seen with commencing dialysis, individuals coped with treatment withdrawal in a problem- or emotion-controlling way. Families struggled to differentiate between choosing versus allowing death. Health care teams avoided and queried discussions regarding dialysis withdrawal. Patients, however, missed the dialogue they experienced during predialysis education.
Conclusions Decision-making in ESRD is complex and dynamic and evolves over time and toward death. The factors at work are multifaceted and operate differently for patients and health professionals. More training and research on open communication and shared decision-making are needed.
Introduction
Dialysis brings high treatment burden to patients and families, considerable costs to health services, and high mortality. Sixty-five percent of patients die within 5 years (1). Over three quarters of those with ESRD are treated with dialysis (2); however, decisions on whether to start, continue, or stop dialysis remain poorly informed by evidence and rely predominantly on observational studies, with all their inherent limitations (3–5).
To help patients, families, and health care professionals make joint decisions about dialysis treatment, clinical practice guidelines were developed by the Renal Physicians Association (RPA) for shared decision-making in the appropriate initiation of and withdrawal from dialysis (6). These support patient preferences while acknowledging the limitations in the evidence. A large number of quantitative studies have looked at physiologic (7–10), social (8,10–14), educational (15–17), and geographic factors (18) that influence the decision to commence and withdraw from dialysis (15–22). These studies have provided insights into influential factors, but their largely survey-based methods do not further our understanding of why and how different factors operate.
Qualitative research provides an in-depth and interpreted understanding of the factors that affect decision-making, with a focus on how and why patients and health care professional make sense of their experiences and perspectives (23). An inductive approach can help determine new hypotheses and theories for subsequent empirical testing (23). Two systematic reviews (24,25) of qualitative studies in this area have examined factors that influence patient decisions, but factors that affect health care professionals and their interactions with patients in the decision-making process are still largely unexplored. Because health care professionals and patients are partners in the shared decision model advocated by the RPA (6) and National Service Framework (2005) (26), this is an important gap in the current evidence-base.
To address this gap, this systematic review aimed to identify and synthesize existing qualitative research in order to explore how and why different factors influence patients and health care professionals in the decision to commence and withdraw dialysis as ESRD progresses. The synthesis of primary qualitative studies creates a cumulative body of evidence that builds and develops theory for practice in ways that individual studies cannot (27). This will therefore further our understanding of how decisions are made in this context and how effective shared decision-making can be facilitated.
Materials and Methods
Selection Criteria
Participants included in the studies were adult patients with CKD who had decided for or against dialysis. Studies that explored health care professionals’ views of caring for such patients during the decision-making process were also included. This group included physicians, dialysis nurses, student nurses, and social workers.
Literature Search
Medical Subject Heading terms and text words for ESRD, dialysis, conservative kidney management and decision-making were combined with validated terms for qualitative studies (Supplemental Material) (28).The search was performed in MEDLINE, Embase, CINAHL, and PsychINFO and was last updated in May 2014. Reference lists of relevant papers and contents pages of relevant journals were searched. Two researchers independently assessed titles, abstracts, and full text against the inclusion criteria.
Quality Appraisal
All papers were assessed against Hawker and colleagues' appraisal checklist (29). Inter-rater agreement was assessed on a purposive selection of five studies with a range of scores (κ=0.9).
Synthesis of Findings
The papers were synthesized systematically using thematic synthesis (30), an established and widely used method of analyzing qualitative research. This synthesis was approached from a realist perspective and aimed to provide recommendations for clinical practice. This school of thought considers reality to exist independent of those observing it but recognizes the importance of understanding the participants’ own interpretation of events (31). Because thematic analysis is not restricted theoretically and enables both inductive and deductive analysis, it provides an appropriate method for such a synthesis. The analysis was managed using ATLAS.ti (version 7) and reported in accordance with the Enhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ) guidance (32).
Results
Literature Search and Study Descriptions
Of the 494 articles screened, 12 studies involving 206 patients and 64 health care professionals were included in the synthesis (Figure 1). Table 1 summarizes the studies included in the review, and Table 2 illustrates how many codes, items of evidence, and papers contributed to each theme. Most studies were conducted between 1997 and 2014 and in Europe (n=5) (33–37) and the United States (n=5) (38–42). The remainder were performed in Australia (43) and Taiwan (44). Five studies were conducted in single-payer health care systems (33,34,36,37,44), two in two-tier systems (35,43), and five in a country with an insurance mandate (38–42). Researchers, independent of the health care team and patient, conducted all interviews, focus groups, and observations.
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 flow diagram.
Summary of studies included in the review
Formation of themes
Quality Appraisal
Hawker and colleagues' (29) quality assessment scores ranged from 21 to 33 (Table 3), which indicated fair to good quality of all studies.
Summary of Hawker and colleagues' quality assessment scores for included studies (28)
Synthesis
The decision-making process evolved as patients progressed along their disease trajectory. The factors and how they influence choice are presented according to the decision whether to start dialysis and withdraw from treatment. These are presented as patient factors, health care professional factors, and their interaction (see Table 4 for exemplars).
Factors affecting decision-making themes and exemplars
Commencing or Withholding Dialysis: Patient-Level Factors.
Deliberation of Factors
Patients considered a variety of factors when deciding whether to start dialysis, and these were different for each individual. Figure 2 illustrates the categories that contributed to this theme. Patients deliberated about the influence of the treatment choice on their quality of life (QoL) (33,34,36,37,40,41,43,44), which was then weighed against the survival benefits (33,34,36,37,41,43,44). Whether the effect on QoL outweighed survival advantage, or vice versa, was a personal judgment, and not something health care professionals and family members could predict (41). For many patients, the effect of treatment on QoL was more important than medical effectiveness (40), and maintaining a good QoL outweighed having a "long life" (33).
Categories that contribute to the theme "deliberation of factors."
Gut Instinct
Patients also based the decision to start dialysis on their intuition on whether to opt for the life-prolonging treatment, regardless of the personal cost, or accept dying as a natural course, given the "loss of self-identity … source of great hardship and suffering, and a fragmentation of lifestyle" (44) associated with dialysis.
Some individuals did not have a strong instinct for either of these, and they described the choice as one between "two evils" (37,42,44). These patients considered dialysis to be the "lesser of two evils" (37), given their significant predialysis symptom burden and the inevitability of death without treatment. Nonetheless, it was not a decision these individuals wanted to make but one they were forced to make as their renal function deteriorated (37).
Coping Mechanisms
How individuals coped with the decision-making process was important. Two types of coping responses were evident (33,36,37,39–41,44): (1) control the problem and (2) control emotions. Problem-controlling patients aimed to gain command of the situation and sought information, advice, and opinions (37,39–41). Emotion-controllers instead focused on how to handle the negative emotions associated with the situation (38). These emotions ranged from "shock" (42,44), to "anger" (36), "fear" (42,44), and "torture" (44). They used a variety of methods to minimize emotions, including false hope (42), avoidance (38,42), dependence on others to make decisions, and passive acceptance of treatment (33).
Commencing or Withholding Dialysis: Health Care Professional Factors.
Biomedical Criteria
The health care professionals’ decision on whether to start dialysis was predominantly influenced by medical criteria and clinical experience (34) rather than patient preference. Patients perceived that maintenance of "physiologic balance" was the health care professional’s aim (33). The medical criteria weighed by physicians were primarily age, comorbidities, physical function, prognosis, and cognitive impairment (34,35). Because of the unpredictable and asymptomatic nature of disease progression, blood tests were often relied upon to predict and educate patients about when dialysis may be required (42); however, patients often "lacked understanding of the blood test value’s meaning relative to their own experience" (42).
Ethical Dilemma
Physicians also recognized when it was unethical to prolong life, particularly with frail patients and those with a terminal illness (34). They acknowledged that dialysis could prolong "the suffering and the process of dying, rather than adding quality days to the patient’s life" (34). Nonetheless, even when health care professionals did not think someone would benefit from dialysis, they continued to offer the treatment because to withhold treatment was difficult (34) and they were led by their instinct to "err on the side of life" (34).
Commencing or Withholding Dialysis: Patient and Health Care Team Interaction.
Power and Communication
An important barrier to shared decision-making was the perceived power and dominance of the health care team. Health care professionals were considered to own the knowledge "and decided what the patient needed to know" (33,42); the patient relied on the team to share any knowledge (33). Health care professionals, however, also described their own "sense of powerlessness" (42) when faced with patients with ESRD, given the inevitability of disease progression.
Lelie found that physicians had typical "ideal" ways to provide information to patients of different age groups (35), with younger patients less likely to be informed of the option of conservative kidney management. Some patients were satisfied with the information they received (33) and thought they had made an informed independent decision (36,37). Others felt uninformed, did not feel they could ask questions, or did not know what to ask (33,42). Moreover, some misunderstood the information (36) and in particular its potential effect on their lives (42).
Acutely unwell patients often had little time to make a decision, could not always remember what had happened (33), or were unable to "deliberate" about treatment (39). The information provided was not consistent and was considered as "accidental" in its delivery (33). These patients often did not consider the decision to be their own (39).
The way information, and, in particular, risk, was presented influenced patient’s decisions (36,40,43). Some patients, after discussion with health care professionals, did not think a decision needed to be made (36). When health care professionals did communicate the uncertainty around the choice of treatment, this resulted in fear (40); however, more information about the future was still considered better than none by patients (42).
In addition, the person who provided the information and whether they were trusted by the patient was important (33,36,40,43). The majority felt that "if you wanna live" (40), you had to trust the physician to offer treatments that provided future hope (40). The decision was unique and complex, and so "who else you gonna trust" (40) was expressed to justify a dependence on professional judgement, which commonly nudged patients toward the choice considered to be medically optimal (39).
Dialysis Withdrawal: Patient-Level Factors.
Life on Dialysis
Participants remained convinced of their choice to have dialysis while they continued to experience the symptomatic benefits of treatment (40). At this stage dialysis had made them feel better, and this furthered their trust in the health care team (33). However, once their condition was no longer improving, past choice was questioned (40,42). This was typically after a prolonged period (e.g., years) on dialysis, when the "arduous" realities of life on dialysis were more fully appreciated (36,40–44). For many, particularly emotion-controlled patients, "their passive acceptance later generates profound questions about the meaning and worth" (39) of life on dialysis. This resulted once again in a feeling of powerlessness about one’s own life and a weariness (41), described as "sick of coming here," "had enough," and "just don’t want to do this anymore" (41).
Facing Withdrawal
Over time, participants reported that dialysis came to be seen as a "death sentence" in itself (44). Unfortunately, by this stage patients were dependent on treatment and withdrawal would result in imminent death, often within days (45). Therefore, the anxiety around such a decision was heightened, especially for those who had avoided the decision to commence dialysis in order to control their emotions (34,44) and were now faced with the same difficult choice between life on dialysis or death, but with more acute consequences if they chose the latter (34).
As with the decision to withhold treatment, individuals coped with dialysis withdrawal in a problem-controlling or emotion-controlling way. For some problem-focused patients, it was important to know they could stop treatment because this gave them back control (41). In contrast, the emotion controllers did not want to face such a decision and so focused on the present to avoid thoughts about future uncertainties (42).
Dialysis Withdrawal: Health Care Professional Factors.
Avoidance
Despite the worries expressed by patients on dialysis, health care professionals acknowledged their own concerns about initiating discussions about treatment withdrawal (34,39,42). This was because they did not want to upset patients by being "too explicit" (41), the uncertainty of disease progression (42), and the moral and ethical burdens associated with such decisions (43). There was also evidence that over an extended period a close relationship develops between patients and the renal team (41). This made it difficult for health care professionals to separate their own instinct from the patient’s choice (41).
Genuine Request
Health care professionals also found it difficult to distinguish between a genuine request for withdrawal, from an attempt to simply discuss the goals of therapy and complain given the demanding nature of dialysis (39,41). This resulted in cautious interpretation of patient cues to discuss withdrawal, with depression and other treatable causes considered at first (41). Whether patients fully understood the implications of treatment withdrawal was also a concern (41).
Dialysis Withdrawal: Patient and Health Care Team Interaction.
Doing Trumps Talking
Patients "missed engaging in the dialogue" (33), which was once easily accessible, "rote" (41), and "procedural" (41) during predialysis education. The task-orientated conduct of the dialysis team made patients feel "controlled and incapacitated" (33). Health care professionals, however, considered patients as "voting with their feet," with "doing" considered to "trump talking" (41). These individuals attended dialysis week after week, and the team interpreted this as evidence of ongoing consent to treatment. Lack of acknowledgment that under the "veneer of straightforward participation in the treatment, are doubt and ambivalence" (41) was thought to result from the team’s presumption that patients must want to choose life and therefore continued to attend dialysis (34,41).
If Not Now, When?
Even when health care professionals judged that treatment was futile and patients continued to deteriorate despite dialysis, withholding treatment was frequently delayed until it became physiologically necessary (34,40). From both the patient’s and health care professional’s perspective, the point of withdrawal remained in the future, once all alternatives had been exhausted (41).
Discussion
Decision-making in ESRD is complex and dynamic and evolves over time and toward death. The factors at work operate differently for patients and health care professionals. Our findings resonate with results from previous quantitative and qualitative studies, but this synthesis expands on these and provides a deeper understanding of how and why different factors influence decisions about dialysis.
To facilitate informed shared decision-making, it is important to incorporate decision-making theory into tools designed to make such processes explicit to stakeholders, such as the RPA clinical practice guidance on shared decision-making (6). We found that patients made their choice through careful deliberation of multiple factors, as well as their gut instinct. This is consistent with dual processing theory, which proposes there are two modes of thinking: system 1, which is intuitive (i.e., based on gut instinct), and system 2, which is analytical (i.e., involving the deliberation of factors) (46–48). System 2 requires high cognitive effort and is often used when decision accuracy is pertinent (49), such as in ESRD. System 1 requires less cognitive effort (49); therefore, patients with cognitive impairment secondary to uremia or comorbidities may rely on this. Health care professionals also used system 1 and 2 processing. They relied predominantly on the deliberation of biomedical and ethical factors but were also driven by an instinct to "err on the side of life" (34). Making such cognitive processes transparent to patients, family members, and health care professionals, through the shared decision-making process advocated by the RPA guidance (6), is necessary to ensure decisions are informed and consistent with the patient’s preference.
How patients coped with emotions was also important. The effect of emotions on choice is well described, and it is suggested that an emotional reaction to a stimulus is the most important factor to guide decisions (50). Two coping mechanisms, problem controlling and emotion controlling, were evident. These are consistent with Folkman and Lazarus’s (51) theory of problem- and emotion-focused coping. Problem-focused individuals deal with unpleasant emotions and situations by attempting to solve the underlying problem, whereas emotion-focused individuals cope by minimizing thoughts and feelings about the problem (51). Health care professionals also found decision-making a challenge, as patients gradually progressed along an unpredictable trajectory toward death. Current guidance on shared decision-making does not address support for health care professionals (6). Acknowledgment and regular assessment and support for the emotional effect of decision-making in this context are therefore required; how to provide and implement this requires further research.
The synthesis also highlighted how factors that affect choice for patients and health care professionals evolve over time, and in particular how predialysis education did not prepare patients sufficiently for their personal experience of life on dialysis. In view of this and the difficulties in initiating discussions about treatment withdrawal, one recommendation is to extend the role of predialysis nurses to continue throughout the disease trajectory. This will provide continuity in discussions about treatment with a designated individual, who has already invested time to understand the patient’s priorities, and will therefore enable the RPA guidance to be applied in a sensitive and timely manner.
Most studies in this review were from Western, developed countries (n=11) and did not commonly report patients' ethnicity, level of education, or the socioeconomic class. Few studies provided information on those who chose conservative management. Patients with cognitive impairment were not included in the original studies. In addition, the experiences of those waiting for renal transplants were not within the scope of this review. These areas require further research.
The nephrology community has made substantial advances to address the issue of advance care planning in ESRD. To ensure such decisions are shared and informed, system 1 and 2 information processing, as well as how individuals cope with the decision-making process, must be further understood and incorporated into decision-making tools. Furthermore, continuity of patient-centered communication throughout the disease trajectory may facilitate timelier joint decision making with regard to dialysis withdrawal.
Disclosures
None.
Acknowledgments
This work was undertaken as part of a Masters by thesis funded through an National Institute for Health Research Academic Clinical Fellowship. The authors are grateful to Professor Karl Atkin and Dr. Peter Knapp for their advice and comments as members of the Thesis Advisory Panel and Dr. Matthew Nielson for screening studies.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
This article contains supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.11091114/-/DCSupplemental.
- Received November 7, 2014.
- Accepted March 25, 2015.
- Copyright © 2015 by the American Society of Nephrology
References
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