Abstract
Background and objectives There is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease.
Design, setting, participants, & measurements Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory.
Results The comments of providers interviewed for this study spoke to significant system–level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients.
Conclusions The comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease.
- chronic kidney disease
- advance care planning
- care complexity
- multidisciplinary
- end-of-life
- communication
- cooperative behavior
- decision making
- grounded theory
- humans
- renal dialysis
Introduction
Advance care planning (ACP) is the process of communication between patients, family members, and providers to clarify the patient’s values, goals, and preferences for care if they were seriously ill or dying (1,2). There is growing interest in efforts to enhance ACP for patients with advanced kidney disease (3–6). In this population, low rates of completion of advance directives (7) and low levels of prognostic awareness (8) coexist with intensive patterns of end-of-life care focused on life prolongation (9,10).
There is emerging evidence that interventions to support ACP among patients with advanced kidney disease can lead to better preparation for end-of-life treatment decisions among patients and their surrogate decision makers (11,12) and more favorable bereavement outcomes among surrogates (12). Patients with kidney disease report being open to engaging in ACP but expect health care providers to initiate these conversations (13–17). Barriers to ACP among renal providers include inadequate knowledge and training in communication, belief that ACP may be distressing for patients, concerns that ACP is too time consuming, difficulty estimating prognosis, and uncertainty about their role in ACP (18–22).
Prior studies of provider perspectives on ACP among patients with advanced kidney disease were conducted almost exclusively among nephrologists and renal or dialysis unit staff (13,18–24). Because many of these patients have other serious health conditions and may be cared for by a range providers in a variety of settings during the course of illness (25), these earlier studies may have failed to capture and address the complexity of care for this patient population. We undertook a qualitative study to gain insight from providers from a range of disciplines and specialties who care for patients with advanced kidney disease to identify potential opportunities to enhance ACP for this population.
Materials and Methods
Participants
We approached providers who routinely care for patients with advanced kidney disease (defined as a sustained eGFR≤20 ml/min per 1.73 m2 or on dialysis) from different disciplines and specialties (cardiology, geriatric medicine, intensive care, nephrology, nursing, nutrition, palliative care, physiatry, primary care, social work, and vascular surgery) at the Department of Veterans Affairs (VA) Puget Sound Health Care System (Seattle, WA). Eligible providers were emailed an invitation to participate in the study, and those who agreed to participate signed an informed consent form. The protocol for the overall study was reviewed and approved by the VA Central Institutional Review Board.
Data Collection
Participants completed a 45- to 60-minute semistructured, one-on-one interview by phone or in person to elicit their perspectives and experiences related to ACP for patients with advanced kidney disease (Supplemental Table 1). Participants were prompted to provide details and examples to enhance the richness of the data. The interviews were conducted by one coinvestigator (J.S.), digitally recorded, and transcribed verbatim.
Analyses
Data analysis was based on grounded theory (26). To ensure that the analysis was not biased by the researchers’ expectations, we began with open coding to capture important themes from the transcripts using an emergent rather than an a priori approach. We used Atlas.ti software to organize the coding process (Atlas.ti; Scientific Software Development GmbH, Berlin, Germany). Each transcript was coded by at least two of four coauthors (A.M.O., J.S., L.V.M., or E.K.V.). One coauthor (J.S.) then reviewed all coded transcripts and refined, condensed, and organized open codes into code families (groupings of codes with related meaning). Emergent codes were added throughout the analysis, and in vivo codes were selected as exemplars (27). Five coauthors (A.M.O., J.S., L.V.M., J.S.T., and E.K.V.) iteratively reviewed and discussed the codes and code families, returned to the transcripts to ensure that coding remained well grounded in the data, and built consensus by open discussion of differing interpretations of the data, choice of codes, and thematic organization (28).
Results
In total, 35 providers routinely involved in the care of patients with advanced kidney disease were invited to participate in this study. Of these, 26 (74%) agreed to participate, including 13 physicians (from cardiology, intensive care, nephrology, palliative care, primary care, physiatry, and vascular surgery), six nurses (including nurses and nurse practitioners in palliative care, nephrology, and dialysis), three dialysis technicians, two dieticians, and two social workers. Thematic saturation was reached after analyzing data from 22 interviews. The remaining four interviews were reviewed for concurrence (29). The mean age of providers was 49.3±9.7 years old (range =28–65 years old), 46% were men, 77% were white, and the average time in clinical practice was 18±9.0 years (ranging from 1 to 32 years).
Although all providers interviewed for this study seemed to appreciate the potential value of ACP for patients with kidney disease, the following four interrelated themes pertaining to barriers to ACP in this population emerged from provider interviews (Figure 1). An overarching theme was that medical care for these patients is complex and fragmented across settings and providers and over time (theme 1). This theme provided a backdrop for the following three subsidiary themes: lack of a shared understanding and vision of ACP and its relationship with other aspects of care (theme 2), unclear locus of responsibility and authority for ACP (theme 3), and lack of active collaboration and communication around ACP (theme 4) among providers.
Emergent themes. The figure represents a qualitative rather than a quantitative description of the relationship between themes. ACP, advance care planning.
Theme 1: Medical Care for Patients with Advanced Kidney Disease Is Complex and Fragmented across Settings and Providers and over Time
Providers tended to move in and out of the care of individual patients over time. Their reach was often confined to particular phases in the illness trajectory, clinical settings, or roles. Primary care providers reported becoming less involved after their patients started dialysis (Table 1, exemplar quotation 1). Some expressed concern about the way that decisions about dialysis sometimes unfolded and provided examples of situations where they did not feel that their patients had been offered a meaningful choice or where they questioned the wisdom of initiating dialysis in particular patients (Table 1, exemplar quotation 2). Some lacked a clear understanding of how decisions about dialysis were made, and some had the sense that such decisions were often shaped by wider social forces and treatment imperatives beyond the control of individual providers (Table 1, exemplar quotation 3).
Complex and fragmented medical care across settings and providers and over time (theme 1)
Providers involved later in the course of illness often wondered why patients were not better prepared for the advanced stages of kidney disease and were struck by how “blindsided” patients often seemed when faced with decisions about dialysis (Table 1, exemplar quotation 4). Dialysis unit staff became involved later in the illness trajectory, and many felt that ACP should have been initiated much earlier in the course of illness in the clinic (Table 1, exemplar quotation 5) by nephrologists (Table 1, exemplar quotation 6). A palliative care nurse—who reported assisting with hospice referrals—shared that her “pet peeve” was when providers involved early on did not help patients to identify a surrogate decision maker (Table 1, exemplar quotation 7).
Compartmentalization and fragmentation of care also occurred across settings. Many providers recognized the importance of addressing ACP in the clinic setting with trusted providers but acknowledged that, most commonly, these discussions occurred in the acute setting with a provider that the patient did not know well (Table 1, exemplar quotation 8). Compartmentalization within settings was also challenging. A general internist described a situation in which she did not follow the rationale for dialysis initiation in a very elderly patient while rotating on the inpatient medicine service (Table 1, exemplar quotation 9). Although the dialysis unit at the VA Puget Sound Health Care System is located in the hospital and provides both inpatient and outpatient dialysis, one dialysis nurse explained that she was not able to participate in the end-of-life care of her patients on dialysis when they were seriously ill in the intensive care unit, because “dialysis nurses are not part of that” (Table 1, exemplar quotation 10).
Theme 2: Lack of a Shared Understanding and Vision of ACP and Its Relationship with Other Aspects of Care
Providers differed in their understanding of ACP and its relationship to other aspects of care. Some providers viewed ACP as a discrete task or a series of tasks, such as completion of advance directives and discussions about code status (Table 2, exemplar quotation 1). Some viewed these as potentially standalone procedures that did not need to be closely integrated with other aspects of care (Table 2, exemplar quotation 2). Others viewed ACP more as an ongoing process that is best supported within an established patient-provider relationship (Table 2, exemplar quotation 3) and may even be impeded by a focus on task completion (Table 2, exemplar quotation 4).
Lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care (theme 2)
Some nephrologists viewed ACP as a series of tasks that were largely separate from other elements of nephrology care (Table 2, exemplar quotation 5). One nephrologist drew a distinction between discussions about resuscitation—which he understood to be part of the dialysis consent process–and other aspects of ACP, such as advance directives (Table 2, exemplar quotation 6). He reported having some limited discussion with patients about the “big picture” but felt that his time was too “limited” to fully address ACP (Table 2, exemplar quotation 7).
Other nephrologists saw ACP as more integral to the care that they provided. One nephrologist described dialysis planning as “emblematic” of ACP (Table 2, exemplar quotation 8) but acknowledged that conversations about dialysis may not always extend to a detailed discussion of prognosis or alternatives to dialysis (Table 2, exemplar quotation 9). The more circumscribed nature of dialysis decision making was seen by some providers as advantageous in supporting discussions about ACP (Table 2, exemplar quotation 10). Nephrologists (Table 2, exemplar quotation 11) and other providers (Table 2, exemplar quotation 12) who viewed ACP as integral to their care tended not to view time as a constraint (“the grace of time”).
Theme 3: Unclear Locus of Responsibility and Authority for ACP
Not all providers felt responsible for conducting ACP with their patients; many felt that this was someone else’s job. Although some dialysis nurses embraced ACP as part of their role (Table 3, exemplar quotation 1), most dialysis unit staff did not consider this to be within their scope of practice (Table 3, exemplar quotation 2). A dietician felt that she could contribute to ACP but was uncertain whether she should be involved (Table 3, exemplar quotation 3). Some providers had a rigid understanding of sources of authority in completing discrete tasks related to ACP. Some nurses considered advance directives to be the domain of the social worker and did not feel authorized to complete this paperwork themselves (Table 3, exemplar quotation 4). One social worker believed that physicians and nurses were not technically authorized to complete an advance directive (Table 3, exemplar quotation 5). Although primary care physicians usually viewed ACP as their responsibility, some spoke of a reality in which tasks related to ACP fell to support staff because of time constraints (Table 3, exemplar quotation 6).
Unclear locus of responsibility and authority for advance care planning (theme 3)
Although nephrologists felt ownership of discussions related to dialysis initiation, they differed in how they viewed their role with respect to ACP (theme 2). Some considered this to be someone else’s responsibility but often, had only a vague notion of whose responsibility (Table 2, exemplar quotation 6 and Table 3, exemplar quotation 7). One nephrologist reported sometimes being involved in discussions about resuscitation in the inpatient setting but did not feel “in the driver’s seat” with those discussions (Table 3, exemplar quotation 8).
There was uniform agreement among non-nephrology providers that ACP should be addressed well in advance of dialysis initiation. A primary care provider commented that waiting until dialysis was initiated to complete ACP would be “shockingly late” (Table 3, exemplar quotation 9). Primary care providers and specialists outside nephrology often did not feel empowered—or did not see the need—to discuss dialysis initiation with their patients, because they believed this to be the responsibility of nephrology (Table 3, exemplar quotation 10). Providers outside nephrology tended to assume that nephrologists were conducting ACP as part of discussions about dialysis (Table 3, exemplar quotation 11) and even saw this as a strength of nephrology (Table 3, exemplar quotation 12).
Theme 4: Lack of Active Collaboration and Communication around ACP
There seemed to be little active collaboration or open communication around ACP among providers interviewed for this study. Completion of advance directives was recognized by dialysis unit staff as one of the functions of the multidisciplinary dialysis team after patients had initiated dialysis. However, neither completion of advance directives nor the broader process of ACP seemed to be a central function of this team, and only select team members were involved (Table 2, exemplar quotation 1 and Table 4, exemplar quotation 1).
Lack of active collaboration and communication around advance care planning (theme 4)
Dialysis unit staff members were sometimes critical of nephrologists in terms of how they handled end-of-life decision making (Table 4, exemplar quotation 2). Dialysis nurses often felt that they had a better grasp of patients’ circumstances and priorities than the nephrologists and expressed concern that nephrologists were not open with patients about what to expect in terms of dialysis treatment and future illness trajectory (Table 4, exemplar quotation 3). Some nurses saw their role as patient advocate in situations where they felt that physicians were not upholding patients’ values (Table 4, exemplar quotation 4). Several dialysis staff members saw ACP as an opportunity for patients to protect themselves from the defaults in the system and the agendas of others (Table 4, exemplar quotation 5).
The comments of some providers spoke to a mismatch between assigned roles and the skills needed to promote ACP. Some nurses felt that their training—specifically in communication skills—made them especially well suited to engaging in discussions about ACP (Table 4, exemplar quotation 6). In general, nurses were more likely than physicians to reference the importance of communication skills (Table 4, exemplar quotation 7) and assessing patients’ readiness to engage in ACP (Table 4, exemplar quotation 8). A social worker saw her role as assisting patients with advance directives in the clinic if physicians did not have time but noted that she had not been “asked to do that” (Table 4, exemplar quotation 9). Some dialysis nurses felt that they had more time than physicians to talk with patients and understand their goals (Table 4, exemplar quotations 10 and 11). Nevertheless, dialysis nurses often felt that patients expected to hear information about prognosis and treatment options from their nephrologists, and they did not always feel authorized or qualified to enter into these conversations (Table 4, exemplar quotation 12).
Discussion
The value of a systematic approach to orchestrating the process of ACP for complex patients—who are typically cared for by multiple different providers in a range of settings during the course of illness—has received relatively little attention in the literature (30–32). The comments of providers who care for patients with advanced kidney disease interviewed for this study speak to the complex and fragmented patterns of care experienced by these patients and spotlight both the need for and the challenges to an interdisciplinary approach to ACP for this population.
Not all providers intuitively know how to work effectively as part of an interdisciplinary team (33–39), especially in a complex and fragmented care environment. This study identified almost all facets of effective interdisciplinary collaboration as potential targets for intervention in efforts to enhance ACP for patients with advanced kidney disease (31,34–48). First, although most providers interviewed seemed to appreciate the potential value of ACP for patients with advanced kidney disease, they did not share a common vision or understanding of ACP and its relationship with other aspects of care, such as dialysis decision making. These findings are consistent with reports of differing conceptualizations of ACP among oncology nurses, community nurses, and primary care providers (49–51). Second, team membership and roles were poorly delineated, and lines of authority and accountability for ACP were unclear. ACP was often perceived as someone else’s responsibility. These findings resonate with reports of uncertainty about the locus of responsibility for ACP among palliative care physicians and generalists caring for patients in the hospital (52–54) and among providers caring for patients with chronic obstructive pulmonary disease (55). Third, relationships between different providers caring for the same patients were not always characterized by a spirit of collaboration and open communication. Providers often had difficulty understanding the roles and challenges of their colleagues caring for the same patients at different points along the illness trajectory or in different settings. Lack of collaboration and communication around ACP across providers and settings has been previously reported among oncology nurses (49,56) and among VA providers (51). Fourth, many providers seemed to feel that their skills were underutilized. Similar to earlier reports among oncology (49,56), nephrology (18), and intensive care unit nurses (32), some providers interviewed for this study did not feel authorized or qualified to shape the process of ACP for individual patients, despite having relevant experience, background, and/or training.
For patients with a dominant health condition, grounding discussions about ACP in situations and treatment decisions with unique relevance to that condition can offer powerful opportunities for synergy with ongoing disease management (57–59). A disease-specific approach to ACP may hold particular promise for patients with advanced kidney disease. Dialysis is often initiated in the acute setting and is among the intensive procedures that may be listed in an advance directive (60,61). Indeed, many of the providers interviewed for this study tended to default to discussing dialysis initiation and/or discontinuation when asked about ACP. Although it seemed self-evident to many providers (especially those outside nephrology) that patients should have an opportunity to engage in ACP before dialysis initiation, fragmentation of care seemed to conspire against this ideal. Primary care providers felt responsible for conducting ACP but did not typically engage in discussions about dialysis, whereas the opposite was often true for nephrologists. Taken together, these findings suggest that a primary care–based approach to ACP—as currently implemented in the VA (62) and elsewhere—may result in missed opportunities for synergy with specialized treatment decisions such as dialysis initiation and discontinuation.
System-level problems often call for system-level solutions. Based on insights gained from providers interviewed for this study, we suspect that systematic efforts to promote interdisciplinary collaboration at a variety of organizational levels beyond that of the individual provider will be needed to support ACP in this population (36,38,39). Interventions to promote effective teamwork around ACP might include strategies to define team membership, roles, and lines of accountability to clarify which providers have primary responsibility for conducting ACP with individual patients and how other providers might support this process. It will also be important to build a common understanding and vision of ACP among providers caring for the same patients; leverage the unique strengths of individual providers; and foster trust, empathy, mutual respect, and open communication among team members.
The single-center design of our study is both a strength and a limitation. The findings described here are all the more striking for having emerged from interviews with a small number of providers caring for the same group of patients at a single medical center. Themes related to shared vision, role delineation, and collaboration around ACP also resonate with published work in other settings and populations, supporting the broader relevance of our findings (18,32,49–56). Nevertheless, our study does not provide information on how ACP for patients with advanced kidney disease is approached at other centers within or outside the VA.
In conclusion, complexity and fragmentation of medical care across settings and providers and over time for patients with advanced kidney disease pose a significant challenge to orchestrating the process of ACP among members of this population. Systematic efforts to promote interdisciplinary collaboration among the diverse providers who care for patients with advanced kidney disease will likely be needed to promote effective ACP in this population.
Disclosures
None.
Acknowledgments
We thank Ms. Whitney Showalter for administrative support for this project and Drs. Susan Crowley (VA Renal Program Director and Nephrology Section Chief at the West Haven VA) and Robert Pearlman (Chief of Ethics Evaluation at the VA National Center for Ethics in Health Care and Staff Physician at the VA Puget Sound Health Care System) for supporting this project. We also thank the providers at the VA Puget Sound Health Care System who participated in this study.
This work was supported by VA Health Services Research and Development grant VA IIR 12-126 (principal investigator A.M.O). R.T. was supported by VA Health Services Research and Development Career Development Award CDA-09-206 (principal investigator R.T.).
The funding sources had no role in the design and conduct of the study, including collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication. The contents do not represent the views of the US Department of VA or the US Government.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
See related editorial, “The Provider’s Role in Conservative Care and Advance Care Planning for Patients with ESRD,” on pages 750–752.
This article contains supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.11351015/-/DCSupplemental.
- Received October 24, 2015.
- Accepted January 21, 2015.
- Copyright © 2016 by the American Society of Nephrology
References
In this issue
Jump to section
More in this TOC Section
Original Articles
Cited By...
- Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study
- Serious Illness Treatment Preferences for Older Adults with Advanced CKD
- Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study
- Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease
- Family Consultation to Reduce Early Hospital Readmissions among Patients with End Stage Kidney Disease: A Randomized Controlled Trial
- Nephrology Provider Prognostic Perceptions and Care Delivered to Older Adults with Advanced Kidney Disease
- "Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease
- Serious Illness Conversations in ESRD
- Advance Directives and End-of-Life Care among Nursing Home Residents Receiving Maintenance Dialysis
- Perspectives of Older Kidney Transplant Recipients on Kidney Transplantation
- Working Toward More Effective Advance Care Planning in Patients with ESRD
- The Providers Role in Conservative Care and Advance Care Planning for Patients with ESRD