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Shared patient and provider values in end-stage renal disease decision making: Identifying the tensions
Patient Education and Counseling 102 (2019) 1280–1287
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Shared patient and provider values in end-stage renal disease decision making: Identifying the tensions Ann E. Vandenberga,* , C. Barrett Bowlingb,c , Olufunmilola Adisad, Abyalew Sahliea , Leigh Nadela , Janice Leaa , Laura C. Plantingaa,d a
Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA Durham Geriatric Research, Education, and Clinical Center, Durham VA Medical Center, Durham, NC, USA Department of Medicine, Duke University School of Medicine, Durham, NC, USA d Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 21 June 2018 Received in revised form 6 November 2018 Accepted 9 February 2019
Objective: To examine concordance and tensions in values among stakeholder groups across the shared decision making process for end-stage renal disease patients treated with hemodialysis. Methods: A thematic analysis of transcripts from three stakeholder groups: hemodialysis patients (2 groups, n = 17), nephrologists (1 group, n = 9), and non-physician providers (dietitians, social workers, and registered nurses) (1 group, n = 8). A framework of decision-making components (communication, information, decision, behavior, and outcome) guided analysis of values within and across groups. Results: Shared values included communication that informed patients and involved family; information about function, trajectory, life context, and patient experience; behavior to manage diet; and outcomes of function, safety, and survival. Identified thematic tensions in patient-provider values were: personalized vs. routinized communication; shared vs. separate information; managed vs. adherent behavior; and participating vs. protected outcome. Patient behavior emerged as a contested area of control. Conclusion: Emphasizing shared values and bridging values conflicts may ease tensions surrounding selfcare behavior by facilitating discussions about diet, medications, and consistent dialyzing. Practice implications: More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting. © 2019 Elsevier B.V. All rights reserved.
Keywords: Renal dialysis End-stage renal disease Decision making Social values Physician-patient communication
1. Introduction Shared decision making (SDM) has been embraced as a patientcentered approach to treatment decisions, joining provider and patient experience. Values are an essential component of SDM [1,2] and have been defined as abstract goals that are guiding principles in people’s lives, arising from both personal aspirations and cultural norms; for example, values of family, God’s will, spirituality, and health itself [3]. In the decision making process, information is communicated and used in making decisions that involve health behavior change to achieve a favored outcome [4], and values can be thought of as integral throughout. In the United States, end-stage renal disease (ESRD) affects >700,000 individuals [5] and is treated by dialysis (most
* Corresponding author at: Division of General Medicine and Geriatrics, Wesley Woods Health Center of Emory University, 1841 Clifton Road NE, Rm 546, Atlanta, GA, 30329, USA. E-mail address: [email protected] (A.E. Vandenberg). https://doi.org/10.1016/j.pec.2019.02.012 0738-3991/© 2019 Elsevier B.V. All rights reserved.
commonly, in-center hemodialysis) or kidney transplantation. Importantly, ESRD is chronic, complex, and managed by an interdisciplinary care team, making SDM an especially appropriate approach [6,7]. Values may therefore be particularly relevant for ESRD patients. Values related to autonomy and control have been found to influence whether patients choose to undergo in-center hemodialysis or home-based peritoneal dialysis treatment [8,9]. The value of altruism towards friends and family influences a patient’s decision to refuse donor kidneys [10]. Values assessment stemming from the work of Rokeach [11] has been used to motivate health behavior change such as increased fruit and vegetable intake [12], weight loss [13], and HIV testing [14] in the general population. Values assessments include openended interviews, checklists and ratings scales, hypothetical scenarios, and SDM aids to help weigh the risks and benefits of particular decisions [15]. However, we know little about values across the SDM process, and few studies have included both provider and patient values. Furthermore, prior analyses of values in ESRD have primarily focused on discrete decisions, rather than a continuous set of decisions that occurs over time as in ESRD. By
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patient groups and two provider groups (MD and non-MD providers)). The focus groups (facilitated by AV, assisted by LN) were conducted in private spaces of convenience to participants. Focus group discussions were recorded and transcribed verbatim.
examining concordance and tensions in values between patients and providers and the interaction among decision-making components (communication, information, behavior, and outcome), our study seeks to identify opportunities to improve the SDM process for hemodialysis patients.
2.3. Focus group questions 2. Materials and methods This investigation was part of a larger study that was designed to introduce and contextualize information on patient physical functioning into the dialysis clinic by combining existing, validated measures of function (activities of daily living [16,17], community mobility [18], physical performance [19], falls [20], and perceived physical functioning [21]) into a one-page report for both patients and providers. The report has recently been pilot-tested in our clinics. Here we present a thematic analysis of data from focus groups addressing SDM in the context of a mock individualized physical functioning report.
We used Rothert et al.’s framework on the decision making process [4] and adapted it to include a communication component and to incorporate values at every stage (communication values, information values, behavior values, and outcome values). Our interview guide centered on the physical functioning report; questions addressed decisions made in and out of clinic (e.g., ongoing decisions about medication adjustment, dialysis dose, dialysis access, dialysis modality, continuing or stopping dialysis, driving, housing, work, services and supports, and so forth), patient-provider communication experiences, and desired information and outcomes (Table 1).
2.1. Participants
2.4. Data analysis
After obtaining clearance from the Emory Institutional Review Board (approval no. IRB00090023), we recruited a convenience sample of focus group participants from three stakeholder groups at all three Emory-affiliated dialysis centers. Hemodialysis patients were recruited by phone from clinic-supplied patient lists, whereas physicians/physician extenders (MD providers) and other providers (non-MD providers; nurses, social workers, and dietitians) were recruited through university listservs and in person. In total we recruited 34 participants,17 providers and 17 patients. Demographic informationwas obtained via questionnaire (providers) and from the dialysis clinic electronic medical record (patients).
Focus group data were analyzed thematically, a multi-stage process of coding text and comparing codes within and across groups, beginning with identifying decision-making components in the text, coding values within those components, comparing codes within and across stakeholder groups, and synthesizing categories into larger units of meaning, or themes [22]. All authors (except JL, excluded to protect patients’ confidentiality) initially read and commented on transcripts and collectively developed an initial codebook that defined parameters of each construct. Three authors (AV, OA, and AS) independently coded the transcripts into framework component categories using QSR NVivo11 data analysis software; codes were compared and differences were discussed until they were reconciled; codes were adjusted as needed to reflect shared understanding. These initial codes provided the foundation for subsequent coding into more detailed value categories by AV, in consultation with the author team. Repeated
2.2. Procedures We conducted four focus groups in March 2017. The focus groups were organized according to stakeholder group (two Table 1 Patient and provider focus group questions1. Question
Sample probes2
1 Tell me a word or phrase that comes to mind when you think about your meetings with your kidney doctor (or patient) 2 Please describe medical decisions you’ve made with your kidney doctors (or patients) since you’ve been on dialysis
What was the issue? How did the issue come up? What did you talk about in making the decision? Information exchanged by each Options considered How long did you talk for? Did you both contribute? Any disagreement? How have things been working since the decision?
3 Please describe patient decisions made outside of the clinic, in your everyday lives
Decisions about: Working Living situation Transportation How to spend time based on energy level
4 What do you think your doctor (or you) needs (need) to know so that you can make the best possible care decisions together?
5 [Physical Function Report – distribute and discuss in aggregate and each component consecutively]
Does that make sense to you? How useful is it? Could you use it in your discussions with your doctor? (or your patient)
6 Concluding question: Thank you very much for your thoughts about our report. It sounds like [summary statement]. Is that a fair summary? (5 min)
Do you have any additional thoughts as we conclude? Is there anything missing from our conversation?
1 2
Aggregated patient and provider versions. Probes are follow-up questions to facilitate conversation at moderator’s discretion.
Symptoms? What you can and can’t do/functionality? What’s important to you/your values and beliefs? How dialysis affects your life?
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rereading of transcripts and additional coding ensued until no new themes emerged and final themes were integrated. Rokeach’s taxonomy of values distinguishes between instrumental values, valued ways of being that are means to an end, and terminal values, which stand for enduring beliefs. In the results, we present instrumental values, both shared values and thematic tensions between patient and providers, in each SDM component. In the discussion, we speculate about the terminal values that these tensions may represent. 3. Results Stakeholder groups were similar in age and experience with dialysis. They differed in terms of gender (providers less likely to be female; Table 2) and race (patients more likely to be black; Table 3). Table 4 provides an overview of values that were shared (stated by at least one participant in each group) across stakeholder groups. The strongest outcome value expressed across all groups was function, with a stronger emphasis by patients and non-MDs compared with MDs. No decisions were discussed in all four groups, but the top three across all groups were 1) continuing or stopping dialysis, 2) changing medications, and 3) getting nondialysis treatment (i.e., referrals). The communication value of a personalized approach was shared across all groups, but this view was much more strongly expressed by patients and was countered by some providers. The communication values of family partner exchange and of informing the patient were also shared. The information value of functional information, as presented through the physical functioning report, was especially valued if presented repeatedly to capture the patient’s trajectory over time. All groups stated the information values of patient experience and the life context of the patient in informing decisions. The only behavioral value that came up in discussions across all groups was managing diet. The outcome values of survival, safety, and function were shared across all groups. Fig. 1 (panel B displays tensions identified across our decision making framework. Four tension themes were identified and are described in the following sections.
Table 2 Hemodialysis patient characteristics (n = 17). Characteristic
Count (%) or mean (range)
Age, years Gender (female) Race/ethnicity
53 (39 – 78) 6 (35%) 1 (6%) white Hispanic 15 (88%) black 1 (6%) other/unspecified 8 (1–24)
Years on dialysis
Table 3 Hemodialysis provider characteristics (n = 17). Characteristic
Count (%) or mean (range)
Age, years Gender (female) Race
49 (32–62) 13 (76%) 9 (53%) black 5 (29%) white non-Hispanic 2 (12%) Asian 1 (6%) other/unspecified 11 (1–31) years
Years practicing in dialysis Clinical role Nephrologist Nurse practitioner Registered nurse Social worker Dietitian
8 1 2 4 2
(47%) (6%) (12%) (23%) (12%)
3.1. Communication: personalized vs. routinized The communication component of the decision making process encompassed values related to communication styles, qualities, formats, and communication partners. Participants who expressed a preference for personalized care were pushing back against a dialysis practice designed to maximize efficiency. One patient described weekly clinical meetings, held while patients were dialyzing in chairs about 6 feet apart in an open floor plan: “I could hear pretty much the same thing with every patient down the line; it was pretty much the same kind of drive-by assessment and move on to the next, and the next, and the next” in a routinized or “onesize-fits-all approach.” Two long-time dialysis patients remembered receiving more personalized care when they first started dialysis over two decades ago, when providers individually trained patients on behaviors such as how to get to dialysis on time, what and when to eat and drink, and how to take medications. One commented, “I liked that. That’s how I learned a whole lot about dialysis. I found out so much . . . You have to learn your body. You have to get your body to do this. You have to train your body to be able to this.” One nephrologist favorably recalled an era when the interdisciplinary team met with patients in a private room: “I think it was much more effective than sitting there in front of the patient and everybody there. You really got more of a feel for what was going on, asking them social issues, depression, than now, we just kind of go from one patient to the next.” However, another nephrologist defended chair meetings, stating, “I've done it both ways and for some patients it works very, very well.” Other MDs attributed a reliance on chair meetings to patients who do not have time or energy outside dialysis to go to clinic. 3.2. Information: shared vs. separate The information component of the decision-making process encompassed valued information content, sources, and formats for making decisions. In discussing information about patient function, patients and non-MD groups expressed the value of a shared information format. These participants felt that a shared physical functioning report (i.e., same version of the report shown to both patients and providers) could build trust, rapport, and understanding. One patient commented, “If this is done more with dialysis patients a lot of things that transcends, like weight gain, weight losses, and all that stuff, can be controlled better. And you get a better understanding with the doctor and the patient on what they could do.” Non-MD providers suggested many ways that functional information could be used to diagnose social as well as physical issues impeding their care, objectively clarify function, better understand the patient’s life context, and make referrals to services. These participants literally wanted to be on the same page with each other. In contrast, the MD group universally wanted a separate version of the physical functioning report that would provide more detailed information on functional measures that would not be shared with patients. Desired information to be added to the clinician’s report, was primarily prognostic: “For the physician you could have things like, ‘this score correlates with a 50% increased mortality long-term.’” Reasons for wanting a separate report included patient illiteracy and provider desire to protect patients from information such as “how soon they will be dead.” One MD suggested that some information is helpful only to the provider: When we're having interactions with patients, I think there's always going to be kind of a wall there, that I know how the patient’s doing and they may not know how they're doing, but they're doing worse than what they think they’re doing and
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Table 4 Values across the decision-making process that were mentioned by all four stakeholder groups1. Decision component
Value (example)
Patients P1
P2
Both
MD
Non-MD
Both
Total
COMMUNICATION
Personalized approach: “I feel that the meetings should be more hands on with me and be more personal with my doctor and it’s not.” (patient) “I think the way we used to do the rounds . . . was much more effective than sitting there in front of the patient and everybody there, do you remember doing that? Talking to them, you really got more of a feel for what was going on, asking them social issues, depression, than now, we just kind of go from one patient to the next. (MD provider) “I’ve heard about how things are done in the home program, where the patient comes in. The patient’s in an exam room, every discipline gets some private time with that patient to go over their issues.” (non-MD provider) Purpose to inform patient: “I wasn’t really informed about, I had to learn a lot, I feel like, on my own, and it was kind of a sharp learning curve as far as eating and stuff like that” (patient) “Patient education I’ve found very helpful. Because these are all silent problems and they're all long term, they're not aware of what the consequences are.” (MD provider) “[O]ur job, again, you can tell by the labs so that therefore you could take this to an end, when you educate about their labs, kind of go more in-depth about that [the consequences of not taking medicine] more. (non-MD provider) Family partner: “(My daughters) told me to make sure I don't eat too much . . . they are just always constantly making sure that I do the right thing.” (patient) “[Y]ou have to call daughters or family members about food being prepared or not being prepared the right way, with those that are kind of dependent about their care” (MD provider) “My understanding is that he has adult children, so I try to empower him to engage them to be a part of his daughter’s life." (non-MD provider) Function: “I think physical performance is just as important as important as your bloodwork.” (patient) "if they're not stable on their feet, you need to know that, and they’re at home by themselves and they’re on Coumadin, yes I would like to know that they can't walk” (MD provider) Knowing “what (patients are) able to do independently or need assistance with, and what they’re having difficulties with, could assist us with if they need some in-home services or other resources.” (Non-MD provider) Trajectory as a format: Patient and doctor “can sit down and we can talk about some things over a 90-day window, before it gets to the point, 90 days or 6 months to a year out, this (patient) is far long gone.” (patient) “Someone is either getting better or worse, and you can use that for discussion” (MD provider) Assess patients “maybe 6 months from when they first started to kind of see the progress of their functioning status." (non-MD provider) Life context: "I told them, I was too weak to work with that, my body can't handle that, like in the summertime and stuff I still have to cut grass, work around the house, and stuff" (patient) “I think if you know what's their life like outside of dialysis, how compliant they are with medications, what they need, what kind of family support they have, then that is helpful.” (MD provider) "I know as a dietician I like to know who the patient’s support system is, because that’s important for a lot of patients in terms of their dietary needs, and the support that they need for getting their groceries and shopping, cooking, and even taking nutritional supplements. So I just try to act like a detective and see who that support person would be.” (non-MD provider) Patient experience as a source: “I know what my body can take, I know what I need to do, this is what’s going on.” (patient) “So he literally made me manage it from the chair and until I find out he was coughing blood which he didn't say initially” (MD provider) "In the home department we only see them twice a month. So we are pretty dependent on either the patient telling us or us visually seeing some change with the patient." (non-MD provider) Managing diet: “You have to consider the foods you eat, you know, and the fluid that you put on. You have to make sure you watch that” (patient) “We start off with diet, making sure they're on low phosphorus foods.” (provider) “We encourage things like restricting dietary phosphorus, which a lot of those items tend to be higher-calorie items . . . ” (Non-MD provider)
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Table 4 (Continued) Decision component
Value (example)
Patients P1
P2
Both
MD
Non-MD
Both
Total
OUTCOME
Function: “So I just want a better life, I want to be functional, and I’m gonna do the best that I can with the body that I have.” (patient) "I’ve had to dialyze people that I felt I was dialyzing a corpse and the family insisted that I continue dialysis.” (MD provider) “We could refer the patient to an outpatient PT program, or home-health does provide PT in the home as well." (non-MD provider) Safety: “If you got this shunt or fistula or even your access and you fall and land on it, that is it. That is the biggest fear. I don't care if it is just in the kitchen, or slipping down the stairs, or anything, you have to protect wherever you get your dialysis access” (patient) “Are they going to fall? You need to know if they’re endangering themselves at home. I think that's the important thing.” (MD provider) “We also make the referrals for the home-health services, because they do have a part in that service where they can do an assessment of the home’s safety. [murmurs of agreement]” (non-MD provider) Survival: “I look at dialysis as keeping me in survival mode, you know what I'm saying? So I take my health as serious as I can.” (patient) “If the patient is not getting adequate dialysis and they're doing poorly, then you just bring it to their attention that they need adjustment in their dialysis time because you have to perhaps more quickly to bring it home, the end point is that you want better health for them and not have die prematurely.” (MD provider) "To be healthy, feeling good, being able to do what she needs to do as a mother to provide for her children. And to just be alive because sometimes she says, “I’m not going to come over there, I’m not going to come.”" (nonMD provider)
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P1, patient group 1; P2, patient group 2; non-MD, non-MD providers (nurses, social workers, and dietitians); MD, MD providers (including nurse practitioner); 1Number represents number of speakers making the point.
Fig. 1. Values in decision making process framework for maintenance hemodialysis. Panel A: Components across the decision-making framework, adapted from Rothert et al., 1997. Panel B: Values tensions identified between hemodialysis patients and providers across the decision making framework.
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maybe it’s not good for me to point that out to them . . . . because that's not going to be medically helpful for them. Another MD characterized presenting clinically significant negative performance scores to patients as risky: “If the patients are depressed, that certainly will make them more depressed.” 3.3. Behavior: managed vs. adherent The behavior component of the decision making process encompassed health-related behavior, including various selfmanagement behaviors and adherence to treatment recommendations. Health behavior values varied, with only one shared value: managing diet. Providers acknowledged the difficulties of managing diet when aspects of a patient’s life, such as housing or level of social support, were in flux. Patients described creating routines such as abstaining from eating after dialysis until the end of the day in order to have enough energy for daily tasks. Other behaviors valued by patients included managing medications, dialyzing (or not), observing faith, physical activity, and getting help as needed. The values of physical activity and getting help sometimes contrasted and sometimes complemented each other. A highly functional, highly motivated new dialysis patient pursued a rigorous physical exercise regimen and challenged the “limitations that were set coming into dialysis, only lifting 25 lbs. with that arm [etc.].” Other relatively robust patients made decisions about tradeoffs such as continuing to drive but seeking transportation service in inclement weather. More debilitated patients pointed to the wear and tear of dialysis and the need to get more help. One patient described the daily struggles with making physical effort and getting help from family or neighbors to walk up stairs to get to her door. Non-MDs similarly valued patient help-seeking behavior such as going to the emergency department for severe anemia and seeking mental health counseling. However, behavior emerged as a contested area for control, with different values motivating providers and patients. An older patient wished that more could be done for her: “I would like the doctor to take into consideration the things I can’t do, that I might need a little help on.” A non-MD who valued making physical effort attributed patients’ value of getting help to laziness: “We have patients who underreport their functionality [murmurs of agreement] just to be lazy.” Another contested area was adherence to medications. Providers valued strict adherence to a recommended regimens (e.g., “compliance with phosphorus binders . . . are they taking the binders?”) A non-MD provider simulated provider questioning and patient “avoidance” as follows: “Are you taking your medication?” “Yes.” While clearly the lab results do not support that. “Are you having any barriers to getting your medication?” “No.” “Did you go pick up your medication this month?” “Yes.” And you can go call the pharmacy and ask the pharmacist, “When was the last time this medication was collected or picked up?” And the pharmacist will say, “They haven’t picked up their medication in 3 months.” In contrast to providers, patients discussed health behaviors as a dynamic learning process to enable quality of life. Several patients discussed the importance of timing medications to enhance either their energy level or safety. One recounted a learning process to time anti-hypertensive medications around dialysis sessions to avoid fainting while another learned this suddenly after nearly falling after dialysis and complaining that his providers had not informed them him of this risk. At times there was deep patient suspicion about the effects of medication and their need for them. Where patients lost trust in providers, they might assume total control over medications: “If I take all the medication prescribed to me, I probably wouldn’t be in here right
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now. So I know, like say I miss a pill, and nothing happens . . . do I really need this?” Managed behavior ranged from adapting requirements to a patient’s life context to disregarding regimens (e.g., medications) entirely. 3.4. Outcome: participating vs. protected The outcome component of the decision-making process encompassed valued goals of treatment. Focus group participants agreed on the outcome values of survival, function, and safety (i.e., avoiding injury). Under certain circumstances the participants valued the outcome of death rather than survival through continued dialysis. For more functional patients and their providers, a valued outcome was kidney transplant, and survival on dialysis was a means to that end. Transplant was highly valued by MD providers: [W]e talk to our patient and give him some kind of encouraging outcomes about how patients do on transplant, the quality of life, and how they do on dialysis.” Here transplant is also instrumental to reaching a better quality of life. A strongly expressed outcome value that emerged in all but the MD group was participation as defined as involvement in a life situation per the World Health Organization’s International Classification of Functioning, Disability and Health [23]. Examples of participation mentioned by our patient participants included family relationships, housekeeping, work, travel, and church. For the patients who valued participation, the outcome values of survival, safety, or function were prerequisites to participation. The value of participation influenced the decision to continue or stop dialysis. As stated by one patient: I feel like if I didn’t have a child, I don’t think I would do dialysis, and I’m being honest with you. I just want life, and I want to spend it with my son, I want to see grandkids. See him walk down the aisle. Patients with continuing social roles were engaged in managing relationships and responsibilities, as mentioned by a long-time dialysis patient: “Dialysis just keeps us living, but other than that we do have a life besides this. We have kids, grandkids, family members that depend on us too.” Non-MD providers also valued patient participation and linked it to an outcome of family health, for example: “I’m really encouraging her to come for her treatments and talking about, the positive side of it in regard to her children needing her and depending on her to be there to care for them.” Debilitated patients were more disengaged from participation. For example, an older patient no longer wanted to go on vacation or to see her daughter because dialysis and its effects would interrupt their time together. She described herself as “nothing like I was when I first started. I can't do nothing now,” mentioning multiple falls, unsteadiness, and fear of falling. One non-MD indicated support for cessation of dialysis (i.e., an outcome of death), after a very debilitated patient established his niece as a future guardian for his teenage daughter. MD providers valued protecting patients from negative information of health outcomes that may not be “medically helpful” and could degrade patients’ mental health. Only one MD incorporated an alternate possibility that continued dialysis treatment for sicker patients might contribute to distress: Some patients have some things we can change, you know you might not know it's bothering them that much, you know, that can really change their life, and then some of the more debilitated patients, is living on dialysis that important vs. maybe even stopping or coming here sometimes? This MD suggested that allowing discussions about the negative aspects of dialysis treatment might also facilitate the outcome value of good mental health.
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4. Discussion and conclusion 4.1. Discussion Our analysis of patient and provider values across components in the decision-making process (communication, information, behavior, and outcome) identified a few values held by all stakeholder groups for potential use in SDM. These include the communication value of informing the patient and the information values of function and the patient’s life context. It also pointed to tensions between values that suggest clashes in terminal values, or enduring beliefs, that would have to be overcome for productive SDM. For example, the tension between personalized vs. routinized communication suggests a clash between the terminal value of individuality (seeing and treating patients as individuals) and the value of efficiency (treating all dialysis patients in clinic in a timely manner). Similarly, the tension between shared vs. separate information suggests a clash between terminal value of relationship in medical care (collaborating in treatment, as expressed by the patients and non-MDs) and the terminal value of professionalism (mastering medical information and maintaining professional distance from patients for treatment, as expressed by MDs), which seems counterproductive for SDM. The tension between behavior values of management and adherence suggests a clash between terminal values of self-mastery (by the patient) and medical authority [24], or paternalism (by the providers), which together imply difficulty in establishing patient-provider trust. Finally, the tension between the outcome values of social participation (by patients and non-MDs) and protection from mental distress (by MDs) suggests a clash between the terminal values of freedom (spending one’s time in life according to one’s own definition of meaning) and beneficence (an obligation to act on other’s benefit and prevent inflicting possible harm [25]). This last clash of values may lead to difficulty in broaching some of the toughest decisions in dialysis, such as the decision to stop dialysis. The analysis also indicated shared values that might be leveraged in SDM to overcome these tensions. The overlapping desire for personalized communication, information on patient function and functional trajectory over time, and the outcome of function suggest that talking about physical functioning in clinic might accommodate both a terminal value for individuality, as expressed by patients, and a value of routinization, as expressed by some providers. Because the Centers for Medicare & Medicaid Services (CMS), which covers all ESRD treatment in the United States, encourages quality and value in dialysis care via pay for performance [26], efficiency in care is likely to continue to be a priority of dialysis providers and to contribute to patients’ sense of being provided “one-size-fits-all” care. More individualized discussions require minimal additional clinical time and could yield stronger, more trusting relationships between patients and providers. Provider frustrations over non-adherence could lessen if such individualized information led to relationship-building that affirmed the patient’s terminal value of self-mastery and thereby motivated patients to be more engaged in self-management. Recognizing that survival is often an outcome in the service of even more valued outcomes such as social participation within the patient’s larger life context could allow providers to broaden their embrace of beneficence to include information about predicted bad clinical outcomes such as disability, premature death, or symptoms related to dialysis care that would be antithetical to participation. Negative outcomes are part of ESRD, known and witnessed by many ESRD patients, but are not routinely discussed in care of very debilitated patients despite recommendations in clinical practice guidance [27]. Inclusion of this information might
support patients’ wishes to be free to be either more motivated in achieving health (as in the case of transplant candidates) or to consider stopping dialysis if the costs of dialysis have begun to outweigh the benefits. Finally, there is some evidence that eliciting values from patients and offering clinical guidance based on these values is effective in nephrology [28]. Previous work lends support to these possibilities. MD providers’ desire for prognostic information for ESRD patients fits with widespread national interest in tools that can aid in SDM in terms of surgical and other medical procedures, screening, and end-of-life planning. For information to be acted upon according to the patients’ wishes in decisions such as cessation of dialysis, advanced care planning, and family legacy and succession, it must be shared; withheld information cannot be acted upon. More research is needed, but there is some evidence that geriatric ESRD patients in particular also desire prognostic information for decision making but rarely have the opportunity to discuss it [29]. The American medical system itself may be viewed as embracing the value of survival at all costs through its Medicare benefit for maintenance dialysis, even while some patients may value death in lieu of life extension [30]. One study showed that patients ranked having energy as their most valued outcome, 13 ranks ahead of survival [31]. Previous research has found tension between patients and providers in the area of communication (whole-person care vs. “assembly-line” treatment) [32], information (patient experiential knowledge vs. medical expertise) [30], and behavior, with many ESRD patients valuing control and perceiving their treatment as something rigid and punitive to “get around” [33], though more “activated” chronic disease patients, those with specific skills confidence to engage in their selfmanagement, tend to have better health outcomes [34]. Our data are limited to 17 patients and 17 providers within one healthcare system. Our findings are exploratory and point to areas for future research rather than being generalizable to all ESRD settings. Another limitation is that our data are richer than we can represent through the reductive process of theme generation. Furthermore, our interview guide centered on a functioning report prototype and therefore participants’ responses emphasized values relating to function. Finally, some provider values may be more reflective of system-level requirements and roles than personal beliefs. 4.2. Conclusion Our study identified both shared values and values tensions across the decision making process, with implications for SDM. Meeting shared values—personalized communication, functional information about individual patients, and functional outcomes— may be a means to ease tensions in the area of self-care behavior by facilitating discussions about diet, medications, and consistent dialysis. It may also aid addressing the decision to continue or stop dialysis. 4.3. Practice implications More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting. Such information in the setting of SDM may overcome many of the tensions between patient and providers’ terminal values. Funding This work was supported by the Extramural Grant Program (EGP) of Satellite Healthcare, a not-for-profit renal care provider (San Jose, California, USA).
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Declaration of interest None (all authors). Acknowledgements We would like to thank dialysis facility staff and our advisory team members: Nancy Kutner, Theodore (Ted) Johnson II, Rachel Patzer, Stephen Pastan, and Molly Perkins. References [1] G. Makoul, M.L. Clayman, An integrative model of shared decision making in medical encounters, Patient Educ. Couns. 60 (2006) 301–312, doi:http://dx. doi.org/10.1016/j.pec.2005.06.010. [2] D. Stacey, F. Legare, S. Pouliot, J. Kryworuchko, S. Dunn, Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis, Patient Educ. Couns. 80 (2010) 164–172, doi:http://dx.doi.org/ 10.1016/j.pec.2009.10.015. [3] M. Sandelowski, B. DeVellis, M. Campbell, Variations in meanings of the personal core value ‘health’, Patient Educ. Couns. 73 (2008) 347–353, doi: http://dx.doi.org/10.1016/j.pec.2008.07.029. [4] M.L. Rothert, M. Holmes-Rovner, D. Rovner, J. Kroll, L. Breer, G. Talarczyk, N. Schmitt, G. Padonu, C. Wills, An educational intervention as decision support for menopausal women, Res. Nurs. Health 20 (1997) 377–387. [5] United States Renal Data System, USRDS Annual Data Report: Epidemiology of Kidney Disease in the United States, (2017) . (Accessed June 18, 2018) https:// www.usrds.org/adr.aspx. [6] M.A. Murray, J. Bissonnette, J. Kryworuchko, W. Gifford, S. Calverley, Whose choice is it? Shared decision making in nephrology care, Semin. Dial. 26 (2013) 169–174, doi:http://dx.doi.org/10.1111/sdi.12056. [7] F. Légaré, D. Stacey, N. Brière, H. Robitaille, M.-C. Lord, S. Desroches, R. Drolet, An interprofessional approach to shared decision making: an exploratory case study with family caregivers of one IP home care team, BMC Geriatr. 14 (2014) 83. http://www.biomedcentral.com/1471-2318/14/83. [8] D.B. Wuerth, S.H. Finkelstein, O. Schwetz, H. Carey, A.S. Kliger, F.O. Finkelstein, Patients’ descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis, Perit. Dial. Int. 22 (2002) 184– 190. [9] R.L. Morton, A. Tong, K. Howard, P. Snelling, A.C. Webster, The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies, BMJ 340 (2010) c112, doi:http://dx.doi.org/10.1136/bmj.c112. [10] E.J. Gordon, ‘They don’t have to suffer for me’: why dialysis patients refuse offers of living donor kidneys, Med. Anthropol. Q. 15 (2001) 245–267. [11] M. Rokeach, The Nature of Human Values, The Free Press, New York, 1973. [12] K. Resnicow, A. Jackson, T. Wang, A.K. De, F. McCarty, W.N. Dudley, T. Baranowski, A motivational interviewing intervention to increase fruit and vegetable intake through black churches: results of the Eat for Life Trial, Am. J. Public Health 91 (2001) 1686–1693. [13] S.H. Schwartz, N. Inbar-Saban, Value self-confrontation as a method to aid in weight loss, J. Pers. Soc. Psychol. 54 (1988) 396–404 5022-35I4/88/J00.75. [14] C.R. Hullett, Using functional theory to promote HIV testing: the impact of value-expressive messages, uncertainty, and fear, Health Commun. 20 (2006) 57–67, doi:http://dx.doi.org/10.1207/s15327027hc2001_6. [15] M.J. Karel, The assessment of values in medical decision making, J. Aging Stud. 14 (2000) 403–422.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Shared patient and provider values in end-stage renal disease decision making: Identifying the tensions Ann E. Vandenberga,* , C. Barrett Bowlingb,c , Olufunmilola Adisad, Abyalew Sahliea , Leigh Nadela , Janice Leaa , Laura C. Plantingaa,d a
Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA Durham Geriatric Research, Education, and Clinical Center, Durham VA Medical Center, Durham, NC, USA Department of Medicine, Duke University School of Medicine, Durham, NC, USA d Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 21 June 2018 Received in revised form 6 November 2018 Accepted 9 February 2019
Objective: To examine concordance and tensions in values among stakeholder groups across the shared decision making process for end-stage renal disease patients treated with hemodialysis. Methods: A thematic analysis of transcripts from three stakeholder groups: hemodialysis patients (2 groups, n = 17), nephrologists (1 group, n = 9), and non-physician providers (dietitians, social workers, and registered nurses) (1 group, n = 8). A framework of decision-making components (communication, information, decision, behavior, and outcome) guided analysis of values within and across groups. Results: Shared values included communication that informed patients and involved family; information about function, trajectory, life context, and patient experience; behavior to manage diet; and outcomes of function, safety, and survival. Identified thematic tensions in patient-provider values were: personalized vs. routinized communication; shared vs. separate information; managed vs. adherent behavior; and participating vs. protected outcome. Patient behavior emerged as a contested area of control. Conclusion: Emphasizing shared values and bridging values conflicts may ease tensions surrounding selfcare behavior by facilitating discussions about diet, medications, and consistent dialyzing. Practice implications: More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting. © 2019 Elsevier B.V. All rights reserved.
Keywords: Renal dialysis End-stage renal disease Decision making Social values Physician-patient communication
1. Introduction Shared decision making (SDM) has been embraced as a patientcentered approach to treatment decisions, joining provider and patient experience. Values are an essential component of SDM [1,2] and have been defined as abstract goals that are guiding principles in people’s lives, arising from both personal aspirations and cultural norms; for example, values of family, God’s will, spirituality, and health itself [3]. In the decision making process, information is communicated and used in making decisions that involve health behavior change to achieve a favored outcome [4], and values can be thought of as integral throughout. In the United States, end-stage renal disease (ESRD) affects >700,000 individuals [5] and is treated by dialysis (most
* Corresponding author at: Division of General Medicine and Geriatrics, Wesley Woods Health Center of Emory University, 1841 Clifton Road NE, Rm 546, Atlanta, GA, 30329, USA. E-mail address: [email protected] (A.E. Vandenberg). https://doi.org/10.1016/j.pec.2019.02.012 0738-3991/© 2019 Elsevier B.V. All rights reserved.
commonly, in-center hemodialysis) or kidney transplantation. Importantly, ESRD is chronic, complex, and managed by an interdisciplinary care team, making SDM an especially appropriate approach [6,7]. Values may therefore be particularly relevant for ESRD patients. Values related to autonomy and control have been found to influence whether patients choose to undergo in-center hemodialysis or home-based peritoneal dialysis treatment [8,9]. The value of altruism towards friends and family influences a patient’s decision to refuse donor kidneys [10]. Values assessment stemming from the work of Rokeach [11] has been used to motivate health behavior change such as increased fruit and vegetable intake [12], weight loss [13], and HIV testing [14] in the general population. Values assessments include openended interviews, checklists and ratings scales, hypothetical scenarios, and SDM aids to help weigh the risks and benefits of particular decisions [15]. However, we know little about values across the SDM process, and few studies have included both provider and patient values. Furthermore, prior analyses of values in ESRD have primarily focused on discrete decisions, rather than a continuous set of decisions that occurs over time as in ESRD. By
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patient groups and two provider groups (MD and non-MD providers)). The focus groups (facilitated by AV, assisted by LN) were conducted in private spaces of convenience to participants. Focus group discussions were recorded and transcribed verbatim.
examining concordance and tensions in values between patients and providers and the interaction among decision-making components (communication, information, behavior, and outcome), our study seeks to identify opportunities to improve the SDM process for hemodialysis patients.
2.3. Focus group questions 2. Materials and methods This investigation was part of a larger study that was designed to introduce and contextualize information on patient physical functioning into the dialysis clinic by combining existing, validated measures of function (activities of daily living [16,17], community mobility [18], physical performance [19], falls [20], and perceived physical functioning [21]) into a one-page report for both patients and providers. The report has recently been pilot-tested in our clinics. Here we present a thematic analysis of data from focus groups addressing SDM in the context of a mock individualized physical functioning report.
We used Rothert et al.’s framework on the decision making process [4] and adapted it to include a communication component and to incorporate values at every stage (communication values, information values, behavior values, and outcome values). Our interview guide centered on the physical functioning report; questions addressed decisions made in and out of clinic (e.g., ongoing decisions about medication adjustment, dialysis dose, dialysis access, dialysis modality, continuing or stopping dialysis, driving, housing, work, services and supports, and so forth), patient-provider communication experiences, and desired information and outcomes (Table 1).
2.1. Participants
2.4. Data analysis
After obtaining clearance from the Emory Institutional Review Board (approval no. IRB00090023), we recruited a convenience sample of focus group participants from three stakeholder groups at all three Emory-affiliated dialysis centers. Hemodialysis patients were recruited by phone from clinic-supplied patient lists, whereas physicians/physician extenders (MD providers) and other providers (non-MD providers; nurses, social workers, and dietitians) were recruited through university listservs and in person. In total we recruited 34 participants,17 providers and 17 patients. Demographic informationwas obtained via questionnaire (providers) and from the dialysis clinic electronic medical record (patients).
Focus group data were analyzed thematically, a multi-stage process of coding text and comparing codes within and across groups, beginning with identifying decision-making components in the text, coding values within those components, comparing codes within and across stakeholder groups, and synthesizing categories into larger units of meaning, or themes [22]. All authors (except JL, excluded to protect patients’ confidentiality) initially read and commented on transcripts and collectively developed an initial codebook that defined parameters of each construct. Three authors (AV, OA, and AS) independently coded the transcripts into framework component categories using QSR NVivo11 data analysis software; codes were compared and differences were discussed until they were reconciled; codes were adjusted as needed to reflect shared understanding. These initial codes provided the foundation for subsequent coding into more detailed value categories by AV, in consultation with the author team. Repeated
2.2. Procedures We conducted four focus groups in March 2017. The focus groups were organized according to stakeholder group (two Table 1 Patient and provider focus group questions1. Question
Sample probes2
1 Tell me a word or phrase that comes to mind when you think about your meetings with your kidney doctor (or patient) 2 Please describe medical decisions you’ve made with your kidney doctors (or patients) since you’ve been on dialysis
What was the issue? How did the issue come up? What did you talk about in making the decision? Information exchanged by each Options considered How long did you talk for? Did you both contribute? Any disagreement? How have things been working since the decision?
3 Please describe patient decisions made outside of the clinic, in your everyday lives
Decisions about: Working Living situation Transportation How to spend time based on energy level
4 What do you think your doctor (or you) needs (need) to know so that you can make the best possible care decisions together?
5 [Physical Function Report – distribute and discuss in aggregate and each component consecutively]
Does that make sense to you? How useful is it? Could you use it in your discussions with your doctor? (or your patient)
6 Concluding question: Thank you very much for your thoughts about our report. It sounds like [summary statement]. Is that a fair summary? (5 min)
Do you have any additional thoughts as we conclude? Is there anything missing from our conversation?
1 2
Aggregated patient and provider versions. Probes are follow-up questions to facilitate conversation at moderator’s discretion.
Symptoms? What you can and can’t do/functionality? What’s important to you/your values and beliefs? How dialysis affects your life?
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rereading of transcripts and additional coding ensued until no new themes emerged and final themes were integrated. Rokeach’s taxonomy of values distinguishes between instrumental values, valued ways of being that are means to an end, and terminal values, which stand for enduring beliefs. In the results, we present instrumental values, both shared values and thematic tensions between patient and providers, in each SDM component. In the discussion, we speculate about the terminal values that these tensions may represent. 3. Results Stakeholder groups were similar in age and experience with dialysis. They differed in terms of gender (providers less likely to be female; Table 2) and race (patients more likely to be black; Table 3). Table 4 provides an overview of values that were shared (stated by at least one participant in each group) across stakeholder groups. The strongest outcome value expressed across all groups was function, with a stronger emphasis by patients and non-MDs compared with MDs. No decisions were discussed in all four groups, but the top three across all groups were 1) continuing or stopping dialysis, 2) changing medications, and 3) getting nondialysis treatment (i.e., referrals). The communication value of a personalized approach was shared across all groups, but this view was much more strongly expressed by patients and was countered by some providers. The communication values of family partner exchange and of informing the patient were also shared. The information value of functional information, as presented through the physical functioning report, was especially valued if presented repeatedly to capture the patient’s trajectory over time. All groups stated the information values of patient experience and the life context of the patient in informing decisions. The only behavioral value that came up in discussions across all groups was managing diet. The outcome values of survival, safety, and function were shared across all groups. Fig. 1 (panel B displays tensions identified across our decision making framework. Four tension themes were identified and are described in the following sections.
Table 2 Hemodialysis patient characteristics (n = 17). Characteristic
Count (%) or mean (range)
Age, years Gender (female) Race/ethnicity
53 (39 – 78) 6 (35%) 1 (6%) white Hispanic 15 (88%) black 1 (6%) other/unspecified 8 (1–24)
Years on dialysis
Table 3 Hemodialysis provider characteristics (n = 17). Characteristic
Count (%) or mean (range)
Age, years Gender (female) Race
49 (32–62) 13 (76%) 9 (53%) black 5 (29%) white non-Hispanic 2 (12%) Asian 1 (6%) other/unspecified 11 (1–31) years
Years practicing in dialysis Clinical role Nephrologist Nurse practitioner Registered nurse Social worker Dietitian
8 1 2 4 2
(47%) (6%) (12%) (23%) (12%)
3.1. Communication: personalized vs. routinized The communication component of the decision making process encompassed values related to communication styles, qualities, formats, and communication partners. Participants who expressed a preference for personalized care were pushing back against a dialysis practice designed to maximize efficiency. One patient described weekly clinical meetings, held while patients were dialyzing in chairs about 6 feet apart in an open floor plan: “I could hear pretty much the same thing with every patient down the line; it was pretty much the same kind of drive-by assessment and move on to the next, and the next, and the next” in a routinized or “onesize-fits-all approach.” Two long-time dialysis patients remembered receiving more personalized care when they first started dialysis over two decades ago, when providers individually trained patients on behaviors such as how to get to dialysis on time, what and when to eat and drink, and how to take medications. One commented, “I liked that. That’s how I learned a whole lot about dialysis. I found out so much . . . You have to learn your body. You have to get your body to do this. You have to train your body to be able to this.” One nephrologist favorably recalled an era when the interdisciplinary team met with patients in a private room: “I think it was much more effective than sitting there in front of the patient and everybody there. You really got more of a feel for what was going on, asking them social issues, depression, than now, we just kind of go from one patient to the next.” However, another nephrologist defended chair meetings, stating, “I've done it both ways and for some patients it works very, very well.” Other MDs attributed a reliance on chair meetings to patients who do not have time or energy outside dialysis to go to clinic. 3.2. Information: shared vs. separate The information component of the decision-making process encompassed valued information content, sources, and formats for making decisions. In discussing information about patient function, patients and non-MD groups expressed the value of a shared information format. These participants felt that a shared physical functioning report (i.e., same version of the report shown to both patients and providers) could build trust, rapport, and understanding. One patient commented, “If this is done more with dialysis patients a lot of things that transcends, like weight gain, weight losses, and all that stuff, can be controlled better. And you get a better understanding with the doctor and the patient on what they could do.” Non-MD providers suggested many ways that functional information could be used to diagnose social as well as physical issues impeding their care, objectively clarify function, better understand the patient’s life context, and make referrals to services. These participants literally wanted to be on the same page with each other. In contrast, the MD group universally wanted a separate version of the physical functioning report that would provide more detailed information on functional measures that would not be shared with patients. Desired information to be added to the clinician’s report, was primarily prognostic: “For the physician you could have things like, ‘this score correlates with a 50% increased mortality long-term.’” Reasons for wanting a separate report included patient illiteracy and provider desire to protect patients from information such as “how soon they will be dead.” One MD suggested that some information is helpful only to the provider: When we're having interactions with patients, I think there's always going to be kind of a wall there, that I know how the patient’s doing and they may not know how they're doing, but they're doing worse than what they think they’re doing and
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Table 4 Values across the decision-making process that were mentioned by all four stakeholder groups1. Decision component
Value (example)
Patients P1
P2
Both
MD
Non-MD
Both
Total
COMMUNICATION
Personalized approach: “I feel that the meetings should be more hands on with me and be more personal with my doctor and it’s not.” (patient) “I think the way we used to do the rounds . . . was much more effective than sitting there in front of the patient and everybody there, do you remember doing that? Talking to them, you really got more of a feel for what was going on, asking them social issues, depression, than now, we just kind of go from one patient to the next. (MD provider) “I’ve heard about how things are done in the home program, where the patient comes in. The patient’s in an exam room, every discipline gets some private time with that patient to go over their issues.” (non-MD provider) Purpose to inform patient: “I wasn’t really informed about, I had to learn a lot, I feel like, on my own, and it was kind of a sharp learning curve as far as eating and stuff like that” (patient) “Patient education I’ve found very helpful. Because these are all silent problems and they're all long term, they're not aware of what the consequences are.” (MD provider) “[O]ur job, again, you can tell by the labs so that therefore you could take this to an end, when you educate about their labs, kind of go more in-depth about that [the consequences of not taking medicine] more. (non-MD provider) Family partner: “(My daughters) told me to make sure I don't eat too much . . . they are just always constantly making sure that I do the right thing.” (patient) “[Y]ou have to call daughters or family members about food being prepared or not being prepared the right way, with those that are kind of dependent about their care” (MD provider) “My understanding is that he has adult children, so I try to empower him to engage them to be a part of his daughter’s life." (non-MD provider) Function: “I think physical performance is just as important as important as your bloodwork.” (patient) "if they're not stable on their feet, you need to know that, and they’re at home by themselves and they’re on Coumadin, yes I would like to know that they can't walk” (MD provider) Knowing “what (patients are) able to do independently or need assistance with, and what they’re having difficulties with, could assist us with if they need some in-home services or other resources.” (Non-MD provider) Trajectory as a format: Patient and doctor “can sit down and we can talk about some things over a 90-day window, before it gets to the point, 90 days or 6 months to a year out, this (patient) is far long gone.” (patient) “Someone is either getting better or worse, and you can use that for discussion” (MD provider) Assess patients “maybe 6 months from when they first started to kind of see the progress of their functioning status." (non-MD provider) Life context: "I told them, I was too weak to work with that, my body can't handle that, like in the summertime and stuff I still have to cut grass, work around the house, and stuff" (patient) “I think if you know what's their life like outside of dialysis, how compliant they are with medications, what they need, what kind of family support they have, then that is helpful.” (MD provider) "I know as a dietician I like to know who the patient’s support system is, because that’s important for a lot of patients in terms of their dietary needs, and the support that they need for getting their groceries and shopping, cooking, and even taking nutritional supplements. So I just try to act like a detective and see who that support person would be.” (non-MD provider) Patient experience as a source: “I know what my body can take, I know what I need to do, this is what’s going on.” (patient) “So he literally made me manage it from the chair and until I find out he was coughing blood which he didn't say initially” (MD provider) "In the home department we only see them twice a month. So we are pretty dependent on either the patient telling us or us visually seeing some change with the patient." (non-MD provider) Managing diet: “You have to consider the foods you eat, you know, and the fluid that you put on. You have to make sure you watch that” (patient) “We start off with diet, making sure they're on low phosphorus foods.” (provider) “We encourage things like restricting dietary phosphorus, which a lot of those items tend to be higher-calorie items . . . ” (Non-MD provider)
6
4
10
1
2
3
13
2
2
4
3
1
4
8
1
1
2
2
1
3
5
6
4
10
5
6
11
21
4
3
7
5
4
9
16
1
5
6
4
3
7
13
5
5
10
1
1
2
12
5
2
7
3
1
4
11
INFORMATION
BEHAVIOR
Providers
All
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Table 4 (Continued) Decision component
Value (example)
Patients P1
P2
Both
MD
Non-MD
Both
Total
OUTCOME
Function: “So I just want a better life, I want to be functional, and I’m gonna do the best that I can with the body that I have.” (patient) "I’ve had to dialyze people that I felt I was dialyzing a corpse and the family insisted that I continue dialysis.” (MD provider) “We could refer the patient to an outpatient PT program, or home-health does provide PT in the home as well." (non-MD provider) Safety: “If you got this shunt or fistula or even your access and you fall and land on it, that is it. That is the biggest fear. I don't care if it is just in the kitchen, or slipping down the stairs, or anything, you have to protect wherever you get your dialysis access” (patient) “Are they going to fall? You need to know if they’re endangering themselves at home. I think that's the important thing.” (MD provider) “We also make the referrals for the home-health services, because they do have a part in that service where they can do an assessment of the home’s safety. [murmurs of agreement]” (non-MD provider) Survival: “I look at dialysis as keeping me in survival mode, you know what I'm saying? So I take my health as serious as I can.” (patient) “If the patient is not getting adequate dialysis and they're doing poorly, then you just bring it to their attention that they need adjustment in their dialysis time because you have to perhaps more quickly to bring it home, the end point is that you want better health for them and not have die prematurely.” (MD provider) "To be healthy, feeling good, being able to do what she needs to do as a mother to provide for her children. And to just be alive because sometimes she says, “I’m not going to come over there, I’m not going to come.”" (nonMD provider)
7
6
13
2
6
8
21
4
3
7
1
2
3
10
2
2
4
1
3
4
8
Providers
All
P1, patient group 1; P2, patient group 2; non-MD, non-MD providers (nurses, social workers, and dietitians); MD, MD providers (including nurse practitioner); 1Number represents number of speakers making the point.
Fig. 1. Values in decision making process framework for maintenance hemodialysis. Panel A: Components across the decision-making framework, adapted from Rothert et al., 1997. Panel B: Values tensions identified between hemodialysis patients and providers across the decision making framework.
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maybe it’s not good for me to point that out to them . . . . because that's not going to be medically helpful for them. Another MD characterized presenting clinically significant negative performance scores to patients as risky: “If the patients are depressed, that certainly will make them more depressed.” 3.3. Behavior: managed vs. adherent The behavior component of the decision making process encompassed health-related behavior, including various selfmanagement behaviors and adherence to treatment recommendations. Health behavior values varied, with only one shared value: managing diet. Providers acknowledged the difficulties of managing diet when aspects of a patient’s life, such as housing or level of social support, were in flux. Patients described creating routines such as abstaining from eating after dialysis until the end of the day in order to have enough energy for daily tasks. Other behaviors valued by patients included managing medications, dialyzing (or not), observing faith, physical activity, and getting help as needed. The values of physical activity and getting help sometimes contrasted and sometimes complemented each other. A highly functional, highly motivated new dialysis patient pursued a rigorous physical exercise regimen and challenged the “limitations that were set coming into dialysis, only lifting 25 lbs. with that arm [etc.].” Other relatively robust patients made decisions about tradeoffs such as continuing to drive but seeking transportation service in inclement weather. More debilitated patients pointed to the wear and tear of dialysis and the need to get more help. One patient described the daily struggles with making physical effort and getting help from family or neighbors to walk up stairs to get to her door. Non-MDs similarly valued patient help-seeking behavior such as going to the emergency department for severe anemia and seeking mental health counseling. However, behavior emerged as a contested area for control, with different values motivating providers and patients. An older patient wished that more could be done for her: “I would like the doctor to take into consideration the things I can’t do, that I might need a little help on.” A non-MD who valued making physical effort attributed patients’ value of getting help to laziness: “We have patients who underreport their functionality [murmurs of agreement] just to be lazy.” Another contested area was adherence to medications. Providers valued strict adherence to a recommended regimens (e.g., “compliance with phosphorus binders . . . are they taking the binders?”) A non-MD provider simulated provider questioning and patient “avoidance” as follows: “Are you taking your medication?” “Yes.” While clearly the lab results do not support that. “Are you having any barriers to getting your medication?” “No.” “Did you go pick up your medication this month?” “Yes.” And you can go call the pharmacy and ask the pharmacist, “When was the last time this medication was collected or picked up?” And the pharmacist will say, “They haven’t picked up their medication in 3 months.” In contrast to providers, patients discussed health behaviors as a dynamic learning process to enable quality of life. Several patients discussed the importance of timing medications to enhance either their energy level or safety. One recounted a learning process to time anti-hypertensive medications around dialysis sessions to avoid fainting while another learned this suddenly after nearly falling after dialysis and complaining that his providers had not informed them him of this risk. At times there was deep patient suspicion about the effects of medication and their need for them. Where patients lost trust in providers, they might assume total control over medications: “If I take all the medication prescribed to me, I probably wouldn’t be in here right
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now. So I know, like say I miss a pill, and nothing happens . . . do I really need this?” Managed behavior ranged from adapting requirements to a patient’s life context to disregarding regimens (e.g., medications) entirely. 3.4. Outcome: participating vs. protected The outcome component of the decision-making process encompassed valued goals of treatment. Focus group participants agreed on the outcome values of survival, function, and safety (i.e., avoiding injury). Under certain circumstances the participants valued the outcome of death rather than survival through continued dialysis. For more functional patients and their providers, a valued outcome was kidney transplant, and survival on dialysis was a means to that end. Transplant was highly valued by MD providers: [W]e talk to our patient and give him some kind of encouraging outcomes about how patients do on transplant, the quality of life, and how they do on dialysis.” Here transplant is also instrumental to reaching a better quality of life. A strongly expressed outcome value that emerged in all but the MD group was participation as defined as involvement in a life situation per the World Health Organization’s International Classification of Functioning, Disability and Health [23]. Examples of participation mentioned by our patient participants included family relationships, housekeeping, work, travel, and church. For the patients who valued participation, the outcome values of survival, safety, or function were prerequisites to participation. The value of participation influenced the decision to continue or stop dialysis. As stated by one patient: I feel like if I didn’t have a child, I don’t think I would do dialysis, and I’m being honest with you. I just want life, and I want to spend it with my son, I want to see grandkids. See him walk down the aisle. Patients with continuing social roles were engaged in managing relationships and responsibilities, as mentioned by a long-time dialysis patient: “Dialysis just keeps us living, but other than that we do have a life besides this. We have kids, grandkids, family members that depend on us too.” Non-MD providers also valued patient participation and linked it to an outcome of family health, for example: “I’m really encouraging her to come for her treatments and talking about, the positive side of it in regard to her children needing her and depending on her to be there to care for them.” Debilitated patients were more disengaged from participation. For example, an older patient no longer wanted to go on vacation or to see her daughter because dialysis and its effects would interrupt their time together. She described herself as “nothing like I was when I first started. I can't do nothing now,” mentioning multiple falls, unsteadiness, and fear of falling. One non-MD indicated support for cessation of dialysis (i.e., an outcome of death), after a very debilitated patient established his niece as a future guardian for his teenage daughter. MD providers valued protecting patients from negative information of health outcomes that may not be “medically helpful” and could degrade patients’ mental health. Only one MD incorporated an alternate possibility that continued dialysis treatment for sicker patients might contribute to distress: Some patients have some things we can change, you know you might not know it's bothering them that much, you know, that can really change their life, and then some of the more debilitated patients, is living on dialysis that important vs. maybe even stopping or coming here sometimes? This MD suggested that allowing discussions about the negative aspects of dialysis treatment might also facilitate the outcome value of good mental health.
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4. Discussion and conclusion 4.1. Discussion Our analysis of patient and provider values across components in the decision-making process (communication, information, behavior, and outcome) identified a few values held by all stakeholder groups for potential use in SDM. These include the communication value of informing the patient and the information values of function and the patient’s life context. It also pointed to tensions between values that suggest clashes in terminal values, or enduring beliefs, that would have to be overcome for productive SDM. For example, the tension between personalized vs. routinized communication suggests a clash between the terminal value of individuality (seeing and treating patients as individuals) and the value of efficiency (treating all dialysis patients in clinic in a timely manner). Similarly, the tension between shared vs. separate information suggests a clash between terminal value of relationship in medical care (collaborating in treatment, as expressed by the patients and non-MDs) and the terminal value of professionalism (mastering medical information and maintaining professional distance from patients for treatment, as expressed by MDs), which seems counterproductive for SDM. The tension between behavior values of management and adherence suggests a clash between terminal values of self-mastery (by the patient) and medical authority [24], or paternalism (by the providers), which together imply difficulty in establishing patient-provider trust. Finally, the tension between the outcome values of social participation (by patients and non-MDs) and protection from mental distress (by MDs) suggests a clash between the terminal values of freedom (spending one’s time in life according to one’s own definition of meaning) and beneficence (an obligation to act on other’s benefit and prevent inflicting possible harm [25]). This last clash of values may lead to difficulty in broaching some of the toughest decisions in dialysis, such as the decision to stop dialysis. The analysis also indicated shared values that might be leveraged in SDM to overcome these tensions. The overlapping desire for personalized communication, information on patient function and functional trajectory over time, and the outcome of function suggest that talking about physical functioning in clinic might accommodate both a terminal value for individuality, as expressed by patients, and a value of routinization, as expressed by some providers. Because the Centers for Medicare & Medicaid Services (CMS), which covers all ESRD treatment in the United States, encourages quality and value in dialysis care via pay for performance [26], efficiency in care is likely to continue to be a priority of dialysis providers and to contribute to patients’ sense of being provided “one-size-fits-all” care. More individualized discussions require minimal additional clinical time and could yield stronger, more trusting relationships between patients and providers. Provider frustrations over non-adherence could lessen if such individualized information led to relationship-building that affirmed the patient’s terminal value of self-mastery and thereby motivated patients to be more engaged in self-management. Recognizing that survival is often an outcome in the service of even more valued outcomes such as social participation within the patient’s larger life context could allow providers to broaden their embrace of beneficence to include information about predicted bad clinical outcomes such as disability, premature death, or symptoms related to dialysis care that would be antithetical to participation. Negative outcomes are part of ESRD, known and witnessed by many ESRD patients, but are not routinely discussed in care of very debilitated patients despite recommendations in clinical practice guidance [27]. Inclusion of this information might
support patients’ wishes to be free to be either more motivated in achieving health (as in the case of transplant candidates) or to consider stopping dialysis if the costs of dialysis have begun to outweigh the benefits. Finally, there is some evidence that eliciting values from patients and offering clinical guidance based on these values is effective in nephrology [28]. Previous work lends support to these possibilities. MD providers’ desire for prognostic information for ESRD patients fits with widespread national interest in tools that can aid in SDM in terms of surgical and other medical procedures, screening, and end-of-life planning. For information to be acted upon according to the patients’ wishes in decisions such as cessation of dialysis, advanced care planning, and family legacy and succession, it must be shared; withheld information cannot be acted upon. More research is needed, but there is some evidence that geriatric ESRD patients in particular also desire prognostic information for decision making but rarely have the opportunity to discuss it [29]. The American medical system itself may be viewed as embracing the value of survival at all costs through its Medicare benefit for maintenance dialysis, even while some patients may value death in lieu of life extension [30]. One study showed that patients ranked having energy as their most valued outcome, 13 ranks ahead of survival [31]. Previous research has found tension between patients and providers in the area of communication (whole-person care vs. “assembly-line” treatment) [32], information (patient experiential knowledge vs. medical expertise) [30], and behavior, with many ESRD patients valuing control and perceiving their treatment as something rigid and punitive to “get around” [33], though more “activated” chronic disease patients, those with specific skills confidence to engage in their selfmanagement, tend to have better health outcomes [34]. Our data are limited to 17 patients and 17 providers within one healthcare system. Our findings are exploratory and point to areas for future research rather than being generalizable to all ESRD settings. Another limitation is that our data are richer than we can represent through the reductive process of theme generation. Furthermore, our interview guide centered on a functioning report prototype and therefore participants’ responses emphasized values relating to function. Finally, some provider values may be more reflective of system-level requirements and roles than personal beliefs. 4.2. Conclusion Our study identified both shared values and values tensions across the decision making process, with implications for SDM. Meeting shared values—personalized communication, functional information about individual patients, and functional outcomes— may be a means to ease tensions in the area of self-care behavior by facilitating discussions about diet, medications, and consistent dialysis. It may also aid addressing the decision to continue or stop dialysis. 4.3. Practice implications More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting. Such information in the setting of SDM may overcome many of the tensions between patient and providers’ terminal values. Funding This work was supported by the Extramural Grant Program (EGP) of Satellite Healthcare, a not-for-profit renal care provider (San Jose, California, USA).
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