Communication Principles and Practices for Making Shared Decisions About Renal Replacement Therapy: A Review of the Literature

Abstract

Purpose of review:

To provide an overview of the skill set required for communication and person-centered decision making for renal replacement therapy (RRT) choices, especially conservative kidney management (CKM).

Recent Findings:

Research on communication and decision-making skills for shared RRT decision making is still in infancy. We adapt literature from other fields such as primary care and oncology for effective RRT decision making.

Summary:

We review seven key skills: (1) Announcing the need for decision making (2) Agenda Setting (3) Educating patients about RRT options (4) Discussing prognoses (5) Eliciting patient preferences (6) Responding to emotions and showing empathy, and (7) Investing in the end. We also provide example sentences to frame the conversations around RRT choices including CKM.

Introduction:

Clinical Case:

Mr. Patrick (not real name) is a 93-year widowed man who recently moved from another state to live close to his family. His creatinine is 3 mg/dL with an estimated glomerular filtration rate of 20 ml/min/1.73 m² in the setting of congestive heart failure (CHF), and history of recurrent acute kidney injury in the past due to poor oral intake/volume depletion and episodes of CHF exacerbation. He has almost 1 g of proteinuria with rare monomorphic red blood cells on urine microscopy. His previous nephrologist had referred him to a surgeon for placement of an arteriovenous fistula (AVF). Mr. Patrick has asked if dialysis is the right choice for him.

Adults 75 years and older with chronic kidney disease represent the fastest-growing population initiating dialysis in the US.¹ For older adults like Mr. Patrick, dialysis can be associated with a decline in functional status, frequent hospitalizations, painful cramps, and symptomatic hypotension.^2-6 Dialysis typically consumes significant number of patients’ waking hours, limiting available time for engagement in social activities.⁷ In contrast, conservative kidney management (CKM), which mainly focuses on enhancing or preserving quality of life,^8,9 consumes minimal time, often with little or no significant reduction in life expectancy among older, frail patients with multiple co-morbidities.^10-16 Further, persons choosing CKM often experience less decline in their functional status, have fewer hospitalizations and avoid dialysis side effects^15,17 — aspects which may align with the goals of many patients.¹⁹ Still, in clinical practice, most patients with CKD are informed and counseled regarding dialysis, and not CKM.^20,21 Many patients do not receive complete information on the impact of renal replacement therapy (RRT) on prognosis, the likely benefits and risks comparing dialysis options to CKM, including effects on future quality of life.^21-23 As a result, patients have inadequate information to make informed decisions. Nearly 20% of patients in the US regret initiating dialysis; this regret is associated with lack of involvement in the decision-making process.²⁴

Lapses in informed RRT decision-making stem from a complex and multifaceted set of issues including lack of general and nephrology-specific training in communication and decision-making skills, short patient visits with packed agendas, financial reimbursement systems that promote dialysis,⁷ negative perceptions of CKM as “no care,” limited availability of clinics offering CKM, skepticism about the outcomes of CKM, and a cognitive bias among clinicians that overestimates the benefits and underestimates the untoward effects of treatments such as dialysis.^20,25-28

Notably, the Renal Physicians’ Association and the American Society of Nephrology encourages nephrologists to engage in shared decision-making (SDM) for RRT choices including CKM.^29,30 These recommendations recognize the potential benefits of shared decision making in improving affective (anxiety, trust etc.) and decisional outcomes (regret, conflict, confidence, and satisfaction).³¹ However, shared decision-making surrounding RRT can be challenging and requires training. Yet, only a few nephrology programs offer communication and decision-making skills training despite interest among nephrology trainees in acquiring these skills.³²

We conducted a narrative review of the literature on shared decision-making and adapted the findings to RRT. Based on this literature review, we suggest the following seven key interconnected skills to improve RRT shared decision making: (1) Announcing the need for decision making (2) Agenda Setting (3) Educating patients about RRT options (4) Discussing prognoses (5) Eliciting patient preferences (6) Responding to emotions and showing empathy, and (7) Investing in the end.

Key Skill number 1: Announcing the need for decision making

The first step in shared RRT decision-making is letting the patient know that time has come for an impactful, life changing decision: “In the next visit, can we talk about important treatment decisions for your kidney disease?”³³ At this time, the nephrologist should encourage the patient to invite close family or friends to join the visit, either in-person or virtually. The nephrologist articulates an appropriate timeframe for making these decisions— “Let’s try to make a decision within the next three months. Does it seem reasonable?” For non-English speaking patients, interpreters must be arranged by law.³⁴ Agenda setting can be done in advance of the visit dedicated to discussing RRT decision-making and can be discussed once more at the beginning of the next visit.

Key skill number 2: Agenda setting

Agenda setting sets expectations for the office visit.^35,36 and is associated with enhanced quality of physician-patient interaction³⁷ and improved patient experience.³⁸ Discussing the agenda—“What’s the most important thing for you for today’s visit?” or “What other topics do you want to include?”—helps reduce the number of concerns that may prolong the visit.^39,40 Agenda setting in the context of RRT decision making has two components:

1. The first task, building rapport, begins on the first visit but is an ongoing process. The first few moments of the visit can be spent acknowledging the presence of everyone in the room by asking or saying their names and initiating a human touch by shaking hands. Physicians need to be mindful of the physician-patient power differential and make every effort to reduce it by sitting down rather than standing, apologize in case of patient waiting and ask about the preferred name. A forward leaning body posture conveys attentiveness and facilitates the conversation.⁴¹ Statements referencing prior conversations such as “Are you still waking up at night to pee?” convey familiarity and show that the physician has reviewed the case.⁴⁰

2. The second task is to elicit patient’s knowledge, and attitudes towards RRT choices. Patient’s perspectives can be solicited using open-ended questions such as: “What have other doctors told you about dialysis?” After soliciting the first concern, the physician can continue with a statement such as: “This is an important concern. Before we discuss it, are there other concerns you have about RRT options?”

Avoiding interruptions is the key to setting the agenda for RRT decision making. Interruptions often result in a patient’s inattentiveness⁴² and a physician’s difficulty in understanding patient’s entire agenda,^43,44 ultimately damaging the patient-physician relationship.⁴⁵ Moreover, listening to patients in an uninterrupted manner results in a shorter time to elicit patient concerns.⁴⁵

Key skill number 3: Educating patients about renal replacement therapy options

Providing information about renal replacement therapy options—CKM included—is crucial to informed decision-making. Many patients with CKD feel uninformed about the RRT options;⁴⁶ conversations with physicians can affirm a patient’s right understandings, correct misunderstandings and fill in the gaps. Reasons for poor knowledge about RRT options include complexity of information,⁴⁷ low health literacy,^48-50 the use of gist in information processing and resultant possible overgeneralizations and misapplications,^51-53 and, in the case of older adults, difficulty processing information.^54,55 Appropriate communication skills (Table 1) and decision aids (Table 2) can be helpful in educating patients about RRT options. The follow are strategies for providing education:

Table 1.

Key communication skills during the education process:

Asking open ended question	Doctor: What do you know about different types of dialysis?
ASK-TELL-Ask	Patient: Doctor, what will happen If I choose not to do dialysis? Doctor: Well, if you decide against dialysis (goes on to inform patient) … Could you tell me what do you think are some of the advantages of CKM for you? What are some possible disadvantages?
Teach back	Doctor: We have covered a lot and I want to be sure I’ve been explained this well. Can you walk we me through different types of dialysis?
Give information in small pieces using plain language	Patient: There are two types of dialysis…

Table 2:

Decision Aids for RRT decision making

Name of Decision Aid	Contents
My Kidneys My Choice114	This decision aid uses 5th and 6th grade language The booklet has five sections:   1. My Kidneys – addresses decision regarding treatment to be fully autonomous.   2. My Lifestyle – impact of kidney disease and its treatment on lifestyle.   3. My Options - the different possible treatment options available for patients with CKD.   4. My Choice – the option that the patient chooses.   5. My Questions – addresses any unaddressed questions regarding CKD and/or its treatment options.
YorkShire Dialysis Decision Aid (YoDDA)115	The booklet contains four sections:   1. Educating patient about CKD.   2. Providing information about various dialysis options.   3. Choosing the best option.   4. Living with kidney disease.
Yorkshire Dialysis vs Conservative Kidney Management Decision Aid (YoDCA)116	The booklet has four sections:   1. Educating patient about CKD.   2. Explaining the difference between CKM and dialysis.   3. Guiding the patient in deciding which option to choose and why.   4. Providing anticipatory guidance
My Choice for My Kidneys117	This booklet has four sections:   1. Discussing what is kidney failure.   2. Explaining the available treatment options.   3. Guiding on how to choose a treatment.   4. Providing information to caregivers.   This decision aid is available in two languages: English and Mandarin. It is available in three forms: PDF, video format and paper.
Conservative Kidney Management Decision Aid118	This booklet has three sections: 1. Helping patients choose between CKM and dialysis. 2. Providing guidance on living with CKM, end of life care, talking about end of life. 3. Helping caregivers deal with grief and loss.
A Supportive Kidney Care Video Decision Aid in Older Patients119	The focus of this 11.5 minutes long video is to educate elderly patients with CKD about dialysis (both hemodialysis, peritoneal dialysis) and CKM. The video contains images of home and clinic images of patients undergoing hemodialysis and peritoneal dialysis as well as images of patients who opted for CKM.

1. Use of plain language and/or short language. For instance, patient prefer “kidney” rather than “renal.”⁵⁶ It can be helpful to remind patients that conservative kidney management is, “no dialysis of any type while focusing on treating symptoms and quality of life.”

2. The Ask-Tell-Ask approach.⁵⁷ This approach may be realized in a dialogue such as the following:

Physician: Is it OK to talk about kidney disease treatment options?

Patient: Yes.

Physician: Before we do that, I want to ask: what do you know about dialysis?

As could be seen, in this approach, the physician first asks the patient about what they know about the RRT options and the tradeoffs of each option, then provides information, and finally proceeds to ask the patient to repeat understanding in their own words. This Ask-Tell-Ask approach has been correlated with increased adherence with treatments⁵⁸ and person-centered decision making.⁵⁹

• (c)Teach Back Strategy. This strategy—exemplified by “Can you explain back to me what you understood about blood dialysis?”—can be effective in correcting patient misunderstanding, especially for patients with low health literacy.^60,61
• (d)Decision Aids. Decision aids are available in forms of booklets, videos, audio, mobile applications or web pages.^62-64 These tools are useful in educating patients about the RRT options^65,66 but are not a substitute for discussion with the nephrologist. Table 2 highlights a summary of the commonly used decision aids for RRT decision making. Decision aids can be given prior to the RRT decision making visit or at the time of announcing the need for a decision. In one study, a decision aid with animations and videos improved patient recall of information, especially by those with low health literacy.⁶⁷ Effective decision aids must contain updated information, be understandable, and promote physician patient dialogue.⁶⁸
• (e)Question Prompt Lists (QPL). QPLs, sets of printable questions that can help patients articulate concerns during visits. QPLs have been shown to complement the education process.⁶⁸
• (f)Patient Navigators. Patient navigators connect patients with information and resources, perhaps arranging for a pre-decision visit to a dialysis clinic or aiding patients with communication needs.^70,71

Key Skill number 4: Discussing prognosis

Prognostic discussions are key for informed decision making.⁷² Prognostic discussions are associated with less dialysis decision regret.²⁴ Nevertheless, many patients wish to have prognostic discussions but only a few do so because many nephrologists are not comfortable having these conversations.⁷³ In the absence of prognostic discussions including those related to different RRT options, patients tend to hold overly optimistic prognostic beliefs.⁷⁴ Such beliefs are associated with preference for more intensive and potentially burdensome treatments.⁷⁵

Several complementary strategies can facilitate prognostic discussions with patients. First, patients should be encouraged to bring a close, supportive relative or friend when having possible prognostic dicussions.⁷⁶ In conveying information, prognostic calculators (Table 3) may be useful; these calculators provide an average estimate which involves uncertainty and imperfection when applied to a particular patient. Nevertheless, uncertainty coupled with support, can be a way to maintain hope, while still allowing the patient to reflect on their own mortality and complete advance directives.⁷⁷ Emotions can arise during prognostic discussions; acknowledging these emotions is a part of these crucial conversations (see key skill 6). West et al, recommend doctors give statements of non-abandonment in cases where the prognosis is limited,⁷⁸ so as to provide hope⁷⁹ and reassurance to patients while remaining honest.⁸⁰ A useful strategy for conveying this honest yet hopeful tone is what Back, Arnold and Quill call hoping for the best and preparing for the worst,⁸¹ for instance, “In the best case I anticipate that you may live for two years without dialysis and in the worst case you may live only for another year or so”).^82,83 Similarly, the “the 5Ps—talking about patient perspective, asking patient about any prior experiences with a friend or family member, asking for permission before beginning the discussion, having the prognostic discussion and providing patient support—may also be helpful.⁸⁴

Table 3:

Prognostic calculators for making prognostic predictions.

Renal Prognostic calculators: -	1. The JAMA Kidney Failure Risk Equation by Tangri et al120 2. Charlson Comorbidity Index (CCI)121 3. The modified Charlson (MCS) score122
Prognostic calculator for patients with CKD, not on dialysis:	1. A 12-month mortality predictive model for patients with advanced CKD by Rebecca Schmidt et al.123
Prognostic calculators for patients receiving maintained dialysis	1. Dialysis initiation risk score for elderly patients on dialysis, developed by Thamer et al.124 2. Mortality risk assessment score developed by Cohen et al.125 3. 2-year mortality predictive tool for elderly patients with CKD. This tool can be used for both dialysis and CKM patients.126

Key Skill number 5: Eliciting patient preferences

The Renal Physicians’ Association recommends incorporating patient goals and preferences into RRT decisions.⁸⁵ Goal concordant care is the cornerstone of person-centered decision making.^86,87 Individual preferences are individual,⁸⁸ and physicians often do not know individual patient preferences⁸⁹; therefore, preference exploration is crucial to improve outcomes and prevent any harm.⁹⁰ Although patient preferences can change over time,^91,92 decisional outcomes are still better if patients feel that the initial decision was made according to their own preferences.⁹³ In one study of older adults, maintaining independence was the top priority of 55% of patients while 35% prioritized longevity.⁸⁹ Not eliciting patient preferences often leads to adverse outcomes such as decisional regret,²⁴ poor mental health related quality of life,⁹⁴ and reduced patient satisfaction.⁹⁵

Often, particularly older patients may have the choice between two options: dialysis or CKM. Helping patients identify their priorities— “What matters the most to you as you think about your decision to choose or forgo dialysis?”—can be helpful in guiding the decision-making process.⁹⁶ Conjoint Analysis is a structured approach in which a set of questions are employed to direct patients to choose the option best aligned with their preferences;⁹⁷ some studies have shown the usefulness of this approach in eliciting patient preferences.⁹⁷

Key Skill number 6: Responding to Emotions and showing empathy:

Discussions involving kidney failure, death and uncertainty are often frightening to patients. One study shows that patients with kidney disease experience isolation, abandonment, mistrust, and alienation interacting with their healthcare providers.⁹⁸ Emotions, when unacknowledged, may lead to poor decisions as many physicians are not equipped with the skills to address patient’s emotions.⁹⁹ Fortunately, emotional intelligence is teachable and learnable.¹⁰⁰ The best way to address patients’ emotions is to acknowledge them: “These decisions can be hard. Can you share how you are feeling?” Useful is the E.M.P.A.T.H.Y. tool, which can help physicians understand and respond to non-verbal emotional cues.¹⁰¹ Table 4 and Dr. Paul Eckman’s online website (https://www.paulekman.com/) provide useful tools for enhancing non-verbal emotional intelligence by gaining familiarity with facial micro expressions.

Table 4:

E.M.P.A.T.H.Y- tool for non-verbal cues⁹⁴

E-eye contact	Avoid looking at the computer screen or looking through patients reports
M-muscles of facial expression	Expressing appropriate facial expression/ mirroring patients’ expression
P-posture	• Leaning slightly forwards, • Sitting sideways, • Resting head of one hand.
A-affect	Asking about how the patient feels emotionally can help a physician gain insight into his emotions. Doctor: How do you feel after hearing that your kidneys aren’t doing well?
T-tone of voice	Tone conveying warmth and anxiety in accordance with patient’s condition. Patient: Last month I had to get in and out of hospital multiple times, it was so stressful! Doctor: That is quite stressful. You must have had a rough couple of days because of this.
H-hearing the patient out	Using words such as, ‘go on’, ‘hmm’, ‘I see’ to allow the patient to continue instead of interrupting the patient.
Y-your response	Asking relevant questions, summarizing what the patient has just said. Doctor: So, what you have just informed is that you would want to be able to live independently is that so?

Empathy is at the heart of a positive physician-patient relationship and person-centered decision making. Only through empathy, goal concordant decision making be possible: Patients wish for an empathic understanding from their physicians; even though, physicians are generally not very skillful at empathic expression.^102,103 Troublingly, a lack of perceived physician empathy is associated with patient dissatisfaction and litigation.^104-106 Expression of empathy is a teachable skill.^107-108 One study showed that a protocol of an empathic statement— “Staying in hospital for a month must be very difficult. What was most difficult about it?”—followed by a pause is increased the likelihood of gathering information about patient’s hopes, values, and goals.¹⁰⁹

Key Skill number 7: Investing in the end:

When a decision has been made, a physician needs to reassure the patient by addressing any emotions and discussing the next steps (e.g., palliative care referral or AV fistula placement). The physician should summarize the information regarding the decision in context of patient concerns and priorities.⁴⁰ Having early discussions pertaining to advance directives— “Do you have a living will?” “Who would you like to make decisions on your behalf in case you are unable to?”— help reduce healthcare cost,¹¹⁰ mitigate caregiver burden,⁸⁷ and increase patient satisfaction.¹¹¹ Physicians can remind patients that decisions can be changed if their preferences or life situation changes: “You have the option to change your mind anytime if your life situation or preferences change.”⁴⁰

Future Directions:

To help fellows-in-training and nephrologists learn and implement communication and decision making skills, programs such as Nephro-Talk (http://nephro-talk.com/) and other workshops are useful initiatives in improving self-reported communication skills.^112,113 Future research on communication and shared decision-making interventions assessing patient-reported outcomes (decisional conflict, decisional satisfaction, decisional regret, quality of life, and resource utilization) and physician reported outcomes (burn out and moral distress) are needed.

Conclusion:

Decision making regarding renal replacement therapy is a complex and often an emotionally taxing process for many patients. It involves contemplating one’s mortality and the relative impact of multiple treatment options on longevity and quality of life. Physicians can play a pivotal role by supporting patients in decisions that align with their preferences using the skills outlined in this article (Table 5). Physicians can do so by announcing the need for RRT decision making, asking open ended questions, checking on patient understanding and providing relevant information (ASK-TELL-ASK), discussing prognosis, acknowledging and addressing emotional needs, helping patients align their decisions with preferences, and providing anticipatory guidance. Improved training in communication and decision making can help nephrologists acquire the crucial skills needed to help patients make goal concordant decisions.

Table 5.

Example language for the seven key skills.

	Possible Physician Comments	Possible Patient Comments
Agenda setting	What is the most important concern you have for today’s visit? In addition to talking about dialysis, is there anything else you would want me to discuss today?	I would like to discuss if dialysis is the right option for me.
Providing knowledge	How much do you know about dialysis?	I had a friend who got dialysis, I saw him go to the hospital a couple times in a week.
Responding to emotions and showing empathy	What was the hardest part about being in and out of hospital? That sounds scary.	Being all alone and especially the thought that I wouldn’t make it
Prognostic discussions	Would you like to know about your prognosis? If it’s okay with you, we can have a discussion regarding your prognosis	I would like to know about how much time have I got, Doctor. Yes, but I don’t want to know too many details about it.
Eliciting patient preferences	As you think about your treatment, what matters the most to you? What are things you still wish to be able to do even when on dialysis?	Being independent and able to take care of myself. I want to be able to continue travelling and exploring.
Investing in the end	I believe you have made the right choice right for your situation. Let me discuss the next steps with you.	Thank you! Sure!

Key points:

1. For some older, frail adults with multiple co-morbidities dialysis may have little impact on patient survival.

2. Dialysis decision making for these adults is particularly fraught with uncertainty and tradeoffs between quality of life and longevity.

3. By considering patient’s preferences and engaging in shared decision making, physicians can help patients make goal concordant decisions.

4. Training and practice can improve nephrologists” shared decision making skills.