Barriers and Facilitators to Discussing Goals of Care among Nephrology Trainees: A Qualitative Analysis and Novel Educational Intervention

Abstract

Background: Goals of care (GOC) conversations are critical to advance care planning but occur infrequently in nephrology. National workshops have improved trainee comfort with initiating GOC conversations but lack interface with palliative subspecialists and can incur travel-related costs. We developed an educational intervention focused on GOC conversations for nephrology trainees that incorporated into routine schedules and offered feedback from palliative subspecialists.

Objective: To explore barriers and facilitators to discussing GOC and uncover perceptions of GOC-related behavior change post-intervention.

Design: Qualitative study.

Setting/Subjects: Sixteen nephrology trainees at an academic medical center.

Measurements: Analyses of semistructured interviews occurred in phases: (1) isolation of quotes; (2) development of a coding system; and (3) creation of a framework of interrelationships between quotes using an inductive/deductive approach.

Results: We captured the following themes: (1) prior knowledge (ability to define GOC, knowledge of communication frameworks and prognostic data, exposure to outpatient GOC conversations; (2) attitudes related to GOC conversations (responsibility, comfort, therapeutic alliance, patient preparedness, partnership with care teams); and (3) potential change in behaviors (increased likelihood to initiate GOC conversations early, more accurate identification of patients appropriate for a GOC conversation).

Conclusions: Prior knowledge of, exposure to, and attitudes toward advance care planning were key determinants of a nephrology trainees' ability to initiate timely GOC conversations. After our intervention, trainees reported increased comfort with and likelihood to initiate GOC conversations and an improved ability to identify appropriate candidates. Our intervention may be a novel, feasible way to coach nephrologists to initiate timely GOC conversations.

Introduction

Effective communication between providers and patients throughout a serious illness continuum facilitates goal-concordant care, decreases intensive care utilization at the end of life, and improves caregiver burden.¹ Discussing goals of care (GOC) also enables patients to make decisions regarding future health care needs in the event they are unable to communicate their preferences.² Given the increasing age and comorbid disease burden of patients with advanced kidney disease, initiating timely GOC discussions is a national priority.³ Despite calls for the early initiation of these conversations, they occur infrequently in practice.^4,5 Nephrologists cite a lack of communication skills training, unclear responsibilities, and a fear of evoking negative patient reactions as barriers.^6,7 Prior work has also demonstrated that trainees' lack experience conducting outpatient GOC conversations, and nephrology trainees have specifically expressed a need for education on GOC discussions from palliative care subspecialists.^8–10

Evidence supports that nephrology trainees' comfort with GOC conversations can be improved with extended communication skills training, but these workshops require travel, can incur high costs, and do not offer longitudinal mentorship from palliative care subspecialists.^11,12 To address these needs, we developed a novel intervention that interfaced directly with palliative care subspecialists and incorporated it into nephrology trainees' routine schedules. To guide the refinement of our intervention, we conducted semistructured interviews with trainees to (1) more deeply explore barriers and facilitators of initiating GOC conversations, and (2) determine any trainee-perceived improvements in these barriers that occurred after our intervention.

Methods

All aspects of this study were approved by Vanderbilt University's Institutional Review Board (No. 161010).

Educational intervention

Table 1 outlines the steps involved in our educational intervention. At the start of each academic year for the past two years, nephrology trainees participated in a didactic session on GOC communication strategies led by a palliative care subspecialist in conjunction with a nephrologist. Before the lecture, trainees were e-mailed and assigned to read articles related to communication strategies, shared decision making, and prognostication in kidney disease with a focus on the “Reframe, Expect emotion, Map out patient goals, Align with goals, and Propose a plan” (REMAP) framework and the Kidney Failure Risk Equation.^13–16 Each week during the outpatient ambulatory clinic rotation (two separate three-week blocks for a total of six weeks per academic year), trainees received an e-mailed list of hospitalized patients with kidney disease who were preselected by the educational team for appropriateness for an ACP consultation. After coordinating a suitable time with the on-call palliative care subspecialist, the trainee spent one afternoon participating in an ACP consultation, either through observing the palliative subspecialist or by performing the consultation. Trainees received direct feedback and debriefing from the palliative care subspecialist, wrote a full consultation note, and if appropriate, filed a legal, ACP document in partnership with the patient. Trainees performed a minimum of one consultation each week for a total of six consultations per academic year.

Table 1.

Steps in Educational Intervention

Once, at beginning of each academic year:

1. Attend one-hour didactic session led by palliative care subspecialist in conjunction with nephrologist on communication strategies for discussing GOC in nephrology

2. Receive articles on shared decision making, communication frameworks, prognostication in kidney disease

Each week during ambulatory rotation (two separate three-week blocks for a total of six weeks per academic year):

1. Receive e-mail from educational team with a list of hospitalized patients with kidney disease deemed appropriate for an ACP consultation

2. Coordinate a time with on-call palliative care subspecialist to meet for ACP consultation for one afternoon per week during rotation

3. Observe palliative care subspecialist perform an ACP consultation for a hospitalized patient with kidney disease or be observed by palliative care subspecialist (according to trainee comfort and preference)

4. If observed, receive immediate debriefing and feedback from palliative care subspecialist

5. Write full ACP consult note in the electronic medical record

ACP, advance care planning; GOC, goals of care.

Interviews and qualitative analysis

We adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines for conducting, analyzing, and reporting data from our trainee interviews (Supplementary Table S1).¹⁷ The primary author (D.N.) developed a semistructured interview guide informed by a biopsychosocial framework used in health psychology and educational theory (Supplementary Data S1).¹⁸ Questions were pilot tested for clarity with two nephrology trainees, and the final version of the interview guide was agreed upon by all investigators. Using a purposive sampling technique and in-person recruitment, the primary author approached current nephrology trainees who had completed six weeks of the intervention to ensure participants had received adequate intervention exposure. Two male second-year trainees did not meet inclusion criteria due to inadequate intervention exposure, but all remaining trainees (N = 16) participated.

Each interview was conducted by the primary author, who at the time of the study was a nephrology trainee with formal training in qualitative research methodologies. Interviews occurred during May 2017 and May 2018 on campus and were audiorecorded on a secure device in real time. All participants were interviewed within six weeks of their last intervention exposure. Interviews ranged from 20 to 45 minutes each, only the interviewer and trainee were present, no field notes were taken, and no repeat interviews were conducted. Interviews were performed until thematic saturation was achieved (N = 16 interviews). Transcripts were offered for review, but all participants declined.

Two independent investigators (D.N. and K.B.) developed a hierarchical coding system to capture themes (Supplementary Table S2). Inductively, participant quotations were used to identify categories for the coding system from five initial transcripts. Deductively, literature related to ACP, health communication, and shared decision making, was reviewed.^18–21

Once the first full transcript was coded independently, initial agreement on the coding system was established between investigators, and each subsequent transcript was coded by each investigator independently. Coding was managed and processed using Microsoft Excel (version 2016) and Statistical Package for the Social Sciences Software (SPSS; version 26). Analyses began by reviewing frequencies of codes, sorting quotations by code, and identifying relationships between coded themes.

Results

Table 2 lists interviewee characteristics. A total of 16 trainees were interviewed. Median age was 33 years, and trainees were evenly distributed in terms of gender. Figure 1 is a conceptual framework of trainees' barriers and facilitators to discussing GOC before our intervention and perceptions of ACP-related behavior change as a result of our intervention. We captured the following themes and subthemes: (1) prior knowledge of information (ability to define GOC, knowledge of communication frameworks and prognostic data, prior exposure to outpatient GOC; (2) attitudes related to GOC conversations (personal responsibility, prior comfort in initiating GOC conversations, therapeutic alliance with patients, partnership with palliative care subspecialists and primary care teams, perceptions of patient preparedness for GOC); and (3) potential change in ACP-related behaviors (increased likelihood to initiate timely GOC conversations, more accurate identification of patients appropriate for a GOC conversation).

Table 2.

Demographic and Educational Characteristics of Trainees Interviewed

Trainee characteristic	Median [IQR] or number per category
Age (years)	33 [31–55]
Race or ethnicity	Whitea (9)
	Asian (4)
	Hispanic or Latino (2)
	Black or African American (1)
Gender	Female (8)
	Male (8)
Level of nephrology training (out of three years maximum)	First year (11)
	Second year (5)

^aIncludes Middle Eastern.

IQR, interquartile range.

FIG. 1.

Thematic representation of nephrology trainees' barriers and facilitators to discussing goals of care*. *Double arrow indicates hypothesized bidirectional relationship. ACP, advance care planning; GOC, goals of care.

Knowledge of information specific to GOC conversations

To me a [goals of care conversation] is related to a patient's values, beliefs, and wishes. It can be a series of conversations over many different visits. It is a means to help a patient identify things which are important to him or her… [and to] identify whether or not the current treatment plan is in line with those values and beliefs.

—Female trainee, accurately describing GOC

Trainees who reported the ability to accurately define GOC, who had prior knowledge of communication frameworks and prognostication in kidney disease, and who had greater prior exposure to outpatient ACP, all expressed increased comfort with initiating GOC conversations before the intervention. Trainees who could accurately define GOC expressed increased comfort with and likelihood to initiate GOC conversations in their practice.

If I hadn't read the study material, I would have felt unprepared. [It provided] a framework of how to approach it. The palliative care subspecialist also taught me some tricks on how to start the conversation…not just, ‘We're here from palliative care; we're going to talk about goals of care.’ We would try to get to know the patient a little bit and then explain why we were there.

—Male trainee, describing knowledge of communication frameworks

Knowledge of communication frameworks, both as described in the supplemental reading as well as by the palliative care subspecialist, played a key role in a trainee's comfort with initiating GOC conversations, both before and during the intervention.

I still need more outcome data. How long do people live on dialysis? What populations do poorly? I've had enough inpatient interactions where I can start to fit them into categories, so it [would be] nice to have some statistics.

—Female trainee, describing lack of prognostic knowledge

I have read the articles [assigned in the intervention] before, and that helped me. In the past, I didn't know about the Charlson Comorbidity Index. I thought there was a lot of useful information in those articles.

—Male trainee, describing prior prognostic knowledge

Five trainees emphasized the importance of understanding prognostic information specific to kidney disease. In contrast with those who lacked this knowledge, trainees who expressed increased knowledge of prognostic data expressed greater comfort in initiating GOC conversations before the educational intervention.

I have had a lot of exposure to advance care planning. Part of my medical school research [related to] defining empathy in routine clinical situations. In residency, I [engaged] in my own goals of care discussions when appropriate, for my inpatients and outpatients.

—Female trainee, describing adequate outpatient ACP exposure

Trainees also varied in their exposure to outpatient ACP, and the majority had only experienced GOC conversations in the critical care setting. Each participant who described outpatient ACP exposure before the intervention also expressed increased comfort with and likelihood to initiate GOC conversations.

In residency… [I conducted] goals of care discussions for ICU patients in the inpatient setting. Even though we had a palliative care rotation, many [patients] were receiving hospice care…it wasn't as applicable to what I see right now. We would talk about outpatient discussions, but these didn't happen.

—Female trainee, describing inadequate outpatient ACP exposure

Attitudes toward GOC conversations

It should be part of your responsibility to have those uncomfortable conversations and prepare patients for less palatable options like, ‘What would I do if I'm running out of access options? What would I do if I just don't enjoy being on dialysis anymore?’ As nephrologists, it is part of our responsibility to engage our patients in these types of conversations.

—Female trainee, describing responsibility to initiate GOC conversations

All 16 trainees agreed that it was a nephrologist's responsibility to engage in GOC conversations with patients, but only those trainees who emphasized this more strongly expressed comfort with initiating future GOC conversations even before the intervention.

It's difficult. I don't feel very prepared. There are so many variables …if this is a patient that has been on dialysis for 20 years vs. one that just started. I don't think I'm fully proficient in these interviews.

—Male trainee, describing lack of comfort with initiating GOC conversations

When I walk into these conversations, I'm very comfortable. It's part of my upbringing. If I see that a patient dying or not going in the right direction, I'm very clear in saying, ‘I'm sorry that this is such a bad situation…’

—Male trainee, describing prior comfort with initiating GOC conversations

Ten trainees emphasized personal comfort as a key determinant of initiating a GOC conversation, and trainees expressed varying levels of this comfort. Those trainees who felt comfortable navigating GOC, these conversations all had prior outpatient ACP exposure.

Acceptance is a barrier. Some patients said, ‘I'm not ready for this conversation at all.’ It's like quitting smoking… the patient has to be ready. If you've really started thinking about it already and you've come to terms with the fact that you're not doing well, then you will want to have that conversation.

—Female trainee, describing importance of patient preparedness

Only if the patient trusts you would he talk… and not just the patient, the family of the patient [as well]… they would ask, ‘What do you think we could do? Continue treatment? Hospice care? Trust is very important.

—Male trainee, describing importance of therapeutic alliance

Trainees who were uncomfortable discussing GOC described patient-level barriers to initiating these conversations, including a lack of a therapeutic alliance between patients and their physicians as well as a lack of patient preparedness and acceptance of his or her illness severity.

I contacted a primary team and they [responded with], ‘This patient doesn't need palliative care. She's not dying… we like to give our patients a shot at life.’ It just reinforced the misunderstanding of [the meaning of] palliative care across the board… not just among patients but also among physicians.

—Female trainee, describing misperceptions of ACP

Just talking with the palliative doctors [about] how they converse was helpful. One attending, when discussing DNR/DNI with patients…uses his fingers, ‘Of every ten patients on TV that are coded, nine survive.’ He pulls up nine fingers so patients can see them. [He then says], ‘in real life, if you had ten people that coded, [only] two would survive.’

—Female trainee, describing helpful interface with palliative subspecialist

The importance of relationships with palliative subspecialists and primary care physicians was described by trainees as a key determinant of initiating GOC conversations. Seven trainees emphasized the need to have direct interface with and guidance from a palliative care subspecialist to optimize comfort in initiating GOC conversations, and each of these trainees also expressed increased likelihood to initiate a GOC conversation as a result of interfacing with the subspecialist during our intervention.

One trainee described a challenging encounter with a primary team physician that discouraged her from pursuing a GOC conversation, although the trainee later stated that it would affect her likelihood to do so in future patient encounters.

Perceptions of ACP-related behavior change

After completing six weeks of our intervention, 16 trainees reported increased comfort with and likelihood to initiate GOC conversations in the future. Twelve trainees reported improved ability to identify patients with kidney disease who were appropriate for a GOC conversation. Two trainees who had extensive prior outpatient ACP exposure reported no perceptions of behavior change.

Discussion

We conducted semistructured interviews among nephrology trainees to better understand their barriers and facilitators to initiating timely GOC conversations and to evaluate the success of our educational intervention.^22,23 According to our results, knowledge of definitions of GOC and prognostication in kidney disease, prior exposure to outpatient ACP, personal comfort, therapeutic alliance with patients, and partnerships with care teams were key facilitators of initiating timely GOC conversations (Fig. 1). Although these behaviors were not directly observed, our intervention resulted in trainee reports of improvements in comfort with and likelihood to initiative GOC conversations in practice.

While inaccurate definitions of ACP have not previously been described among nephrologists, prior work has demonstrated that both medical trainees and patients mistakenly equate ACP with hospice care.^24,25 These inaccuracies, as well as the misconceptions related to ACP expressed by members of the primary care team in our study highlight the need to educate all health care professionals on the indication and purpose of ACP. Consistent with prior work, knowledge of communication frameworks also emerged as a facilitator of GOC conversations.²⁶ Communication about serious illness involves eliciting patient values, understanding life goals, sharing prognostic information, and incorporating caregiver perspectives. These conversations may take time, but importantly, they need not occur in one setting.¹⁵ Communication frameworks for GOC discussions are becoming more widely available and should continue to be advertised to nephrology trainees.^27,28

No trainees could cite tools used to estimate a patient's risk of progression to end-stage kidney disease.¹⁶ Nephrologists infrequently discuss prognosis, and discomfort with making prognostic estimations has previously been described in the palliative care community as well.²⁹ In a qualitative analysis among palliative care subspecialists and nurses in the United Kingdom, difficulties with communicating uncertainty, lack of confidence, fear of error, and hesitancy to elicit negative patient reactions were all barriers to discussing prognosis.²⁶ The unpredictability of a patient's rate of kidney disease progression and each patient's complex comorbidities make prognostication challenging and nuanced. For this reason, nephrology trainees must not only be educated about tools to estimate prognosis but must also receive guidance on ways to communicate uncertainty.

Similar to the results in our study, patients' lack of prognostic awareness and acceptance of illness severity have previously emerged as barriers to timely GOC conversations. In a multicenter survey of clinicians at an academic medical center, patients' difficulty with accepting the severity of their illness was the main barrier to discussing GOC with providers.³⁰ The therapeutic alliance has also previously emerged as a key facilitator to timely GOC conversations between patients and providers.³¹ In a qualitative analysis of patients receiving in-center hemodialysis, patients reported a desire to connect on a deeper level with their nephrologists.³² Providing trainees with the tools necessary to share serious news with respect and empathy may help them develop trusting relationships with their patients.

Prior work has also shown that nephrology trainees desire guidance from palliative care subspecialists to optimize comfort in initiating GOC conversations.⁷ Additionally, in a survey of emergency medicine training program directors, a desire for mentorship from palliative care subspecialists and a lack of personal expertise in palliative care were cited as barriers to trainee education in ACP.³³ Partnerships with palliative care subspecialists, who have specific training and expertise in empathetic communication and value clarification, are essential to facilitate best practices to educate trainees regarding GOC conversations. Encouragingly, evidence suggests that nephrologists in practice have a desire to engage more with these teams.³⁴

Our study and its corresponding educational intervention have important limitations. Timely initiation of GOC discussions may be affected by additional patient and system-level factors unexplored in this study, and only 16 trainees at a single institution were interviewed. Given the workforce shortage in palliative care, the time intensive nature of the intervention may not be scalable across institutions. Finally, potential ACP-related behavior changes were assessed by self-report. A more formal assessment of communication skills or documentation of Advance Directives in the electronic medical record was not done.³⁵

Nephrology trainees, including those in our study, feel a strong responsibility to engage in ACP with their patients.¹¹ The need to develop a palliative care curriculum that offers longitudinal, outpatient exposure has previously been demonstrated in other specialties and may also have an important role in nephrology.^36,37 Our intervention seamlessly integrated into a traditional clinical rotation, incurred no additional cost, allowed for direct observation from palliative care subspecialists, and increased trainee's self-report of willingness to engage in ACP. Based on trainee feedback, we have incorporated a communication skills workshop using a standardized patient into the current version of this curriculum (Supplementary Data S2) and aim to develop a transitions clinic for patients with kidney disease choosing conservative care to facilitate longitudinal relationships between patients and trainees. Barriers to initiating GOC conversations in nephrology exist, but incorporating a similar intervention in a fellowship curriculum may be a feasible, sustainable way to meet a critical need in nephrology education.

Funding Information

This work was supported by the National Institutes of Health (NIH) National Institute of Diabetes and Digestive and Kidney Diseases (grant 5T32DK007569-30 to D.N.), and the NIH National Center for Advancing Translational Sciences (grant UL1TR002243 to D.N. and M.E.)

Author Disclosure Statement

No competing financial interests exist.

Supplementary Material

Supplementary Data S1

Supplementary Data S2

Supplementary Table S1

Supplementary Table S2

Supplementary Reference