Introduction
Patients with CKD experience high symptom burden and medical complexity, and are faced with complex decisions regarding their treatment choices (1,2). Nephrology clinicians express difficulty in prognostication and tend to avoid discussions about kidney treatment decision making and end-of-life decisions (34–5). As a result, patients with kidney disease have low rates of advance care planning (ACP) and shared decision making (SDM), which may influence the high intensity of care at end of life and limited access to hospice services (67891011–12). Dialysis is often presented as the only option and active medical management without dialysis (AMMWD) is rarely presented as a viable treatment choice, despite endorsement from professional societies and association with less hospital time and higher palliative care and hospice utilization (10,131415–16).
Better integration of palliative care into nephrology care may improve symptom management, ACP, and utilization outcomes for patients living with CKD (17,18). In other serious illnesses, such as heart failure and cancer, palliative care has resulted in improvements in quality-of-life symptoms, such as mood, depression, and spiritual distress (19,20). Within kidney disease, most of the experience comes from outside the United States, where AMMWD has a higher prevalence and survival for patients opting to forgo dialysis frequently surpasses 12 months (21222324–25). Compared with other countries, there is also a higher rate of dialysis initiation in the United States among patients who are least likely to benefit from it (26,27). Prior work in the United States has demonstrated that integrating specialty palliative care into an outpatient nephrology clinic can be a useful way to manage symptoms and increase ACP discussions (28,29).
In this study, we describe a kidney palliative care (KPC) clinic embedded within an academic nephrology clinic with a focus on treatment decision making and ACP. This paper aims to describe the patient population, outline key palliative care clinical activities, and describe how these clinical activities enable delivery of AMMWD in the United States.
Materials and Methods
Development of the KPC Clinic
The KPC clinic was created in 2012 to support the palliative care needs of patients with CKD. Clinical and administrative leadership of the clinic allowed (1) flexibility of appointment duration so that providers could request longer appointment slots if needed, (2) providers to see patients with ESKD in a setting typically reserved for patients with CKD, and (3) modifications to the patient intake process related to surveys and educational materials (described below).
The KPC clinic is embedded within the nephrology clinic space. This structure has led to improved use of shared resources and workflow integration. The nephrology clinic space has incorporated resources to facilitate ACP including, (1) Pennsylvania Advance Directive forms, (2) Physician Orders for Life-Sustaining Treatment (POLST) forms, (3) written materials on AMMWD and withdrawal from dialysis, and (4) staff training for scanning these forms into the appropriate section of the electronic health record (EHR).
Target Population for the KPC Clinic
Patients with all stages of CKD, including those who are receiving dialysis and those with a transplant, can be referred to the KPC clinic. Providers from any specialty or care setting (e.g., primary care, nephrology, and inpatient services, including palliative care) can initiate referrals. Patients or family members may also initiate the process. Patients can choose to either receive collaborative kidney care with an existing nephrologist and an KPC clinic provider, or transfer care from an existing nephrologist to a KPC provider.
Common reasons to establish care in the KPC clinic include management of physical and psychologic symptoms, coping, support, treatment decision making with a focus on AMMWD, end-of-life decision making, and referral to supportive care services, including hospice. Currently, there are no specific triggers leading to automated referral to the KPC clinic.
KPC Clinic Team
The KPC clinic is staffed by two physicians, who are board certified in both nephrology and palliative care, and experienced nurses, some of whom have received additional training in communication with patients with CKD. Since the creation of the KPC clinic, the preexisting educational material in the nephrology clinic was modified to also include information about AMMWD. The nurses also coordinate hospice referrals and collaborate with patients’ primary care providers. Lastly, medical assistants and administrative staff have also been trained to help facilitate responding to patient requests for supportive/palliative care, uploading advance directives into the EHR, and giving patients symptom surveys (described below).
Description of KPC Clinic Activities
Symptom Management
The KPC clinic initially used the Edmonton Symptom Assessment Scale (ESAS) and later transitioned to the Integrated Palliative Care Outcome Scale-Renal (iPOS-Renal) (30). KPC providers frequently initiate and adjust medications for symptom relief, including antidepressants and anxiolytics, erythropoiesis-stimulating agents, and analgesics. Home health services, including home palliative care, are often ordered to further alleviate patient symptom and caregiver burden.
Treatment Decision Making and AMMWD
The most common referral to KPC is for treatment decision-making support. There is a strong emphasis on using an SDM framework because it can lead to improvements in patient knowledge and experience (4,31,32). As part of this process, physician providers share prognostic information. Providers rely on a variety of patient-level factors, such as functional status, nursing home status, comorbidities, and other life-limiting conditions, to estimate prognosis. After deliberate attention to the emotional responses patients and families may experience when hearing about prognosis, the emphasis shifts to learning about patient and family values. When values align with life extension and the trade-offs resulting from dialysis initiation seem acceptable, preparation for dialysis with ongoing symptom management is recommended. When values align with a focus on quality of life as opposed to life extension, or if the burdens of dialysis are likely to outweigh its potential benefits, providers recommend AMMWD (333435–36).
AMMWD consists of ongoing visits in the KPC clinic, focused on active adjustment of medications to preserve residual kidney function, manage common CKD-related issues, symptom management, preparation for end-of-life care, and ongoing emotional and decisional support (37). Patients receiving AMMWD are routinely referred to home care, home palliative care, and, when appropriate, hospice services, depending on their caregiving needs, treatment goals, and illness trajectory.
Regardless of which specific treatment plan is recommended by KPC providers, an essential aspect of our care model includes clear communication with the patient’s other providers.
ACP and End-of-Life Care
ACP involves discussing patients’ healthcare preferences during a period of clinical stability (38). As part of this process, patients are asked to identify a surrogate decision maker who understands their values and could speak on their behalf should they become unable to meaningfully participate in healthcare decisions. Providers also encourage completion of written advance directives and POLST forms to increase the likelihood that patient preferences and any treatment-limiting directives are honored across healthcare settings. If advance directives or POLST forms are completed, KPC clinic staff upload them into the EHR for visibility across different healthcare settings.
Data Abstraction from the EHR
We conducted a retrospective chart review study of all patients seen in the KPC clinic between January 2015 and February 2019 (inclusive). All study procedures were approved by the University of Pittsburgh Institutional Review Board.
We reviewed all KPC clinic notes from the initial visit onward and selected inpatient records (i.e., palliative care consults, renal consults, discharge summaries) occurring after the initial KPC clinic visit until the end of the study period. Patients who saw KPC clinic nephrologists for general kidney care but subsequently developed symptom management or ACP needs were included in the analysis.
One member of the research team (A.E.B.) conducted all chart reviews using a structured chart review template. She met regularly with the clinic codirector (A.D.B.) to discuss discrepancies and challenges during data collection. These two coauthors systematically adjudicated all areas of potential conflict.
We collected data regarding demographics, comorbid medical conditions, prior dialysis or ongoing maintenance dialysis, and laboratory values, such as serum creatinine, measured closest to the first visit in the KPC clinic.
Consistent with prior studies describing outpatient KPC populations, the cause of CKD was determined via the treating nephrologist’s clinical documentation (28). When available, we also recorded patient self-reported symptom burden using standardized symptom assessment scales. The clinic initially administered the ESAS, but later transitioned to the iPOS-Renal. The ESAS consists of a four-point scale, whereas the iPOS-Renal uses a five-point scale. To reconcile this, we collapsed the highest scores from iPOS-Renal into a combined category of “severe or very severe.”
We reviewed each visit for documentation of clinic activities, including identification of a surrogate decision maker and completion of written advance directives. There was also adjudication on whether an ACP conversation took place (defined as a conversation aiming to learn either about future healthcare preferences or values that would inform treatment choices for kidney care). Interventions for physical or mood symptoms; referral to home-care services, such as home palliative care or hospice; prescription of erythropoiesis-stimulating agents; and prescription of opioids were also reviewed.
Clinically important events were identified by manually reviewing all KPC clinic encounters, including telephone visits. These events included a decision to choose AMMWD, dialysis initiation, transplantation, number of hospitalizations, hospice enrollment, or death. In addition, the keyword search function (see Supplemental Table 1) in the EHR was used to verify the manual review process. Whenever possible, we abstracted death data from both the EHR and review of obituaries via an internet search.
Determination of whether a patient elected AMMWD was made on the basis of documentation in the EHR during our study period that a patient’s values were not consistent with dialysis initiation if the need arose. Structuring the classification in this way allowed an assessment of preference stability, which is an important aspect of understanding AMMWD (39,40).
We conducted univariate statistics using Microsoft Excel 365.
eGFR
The Chronic Kidney Disease Epidemiology Collaboration formula was used to obtain an eGFR (41). If there were two serum creatinine values an equivalent number of days before and after the first KPC clinic visit, the more recent value was chosen for eGFR determination (shown in Table 1). If no laboratory values were documented within a year of the first KPC clinic visit, the data were entered as missing. Due to the clinical practice patterns during the study time frame, eGFR trends in this work are race based. The health system in which the KPC is located transitioned away from race-based eGFR reporting in 2021.
Table 1. -
Demographics of patients seen in the KPC clinic
| Demographic |
KPC Patients (n=165) |
AMMWD Patients (n=67) |
| Age (yr), mean±SD |
72±15 |
75±15 |
| Women, n (%) |
88 (53) |
39 (57) |
|
Race and ethnicity, n (%)
|
| White |
116 (70) |
46 (68) |
| Black |
46 (28) |
20 (30) |
| Asian |
2 (1) |
1 (2) |
| Native American/Alaska Native |
1 (0.6) |
1 (2) |
| eGFR at initial visit (ml/min per m2), mean±SD |
25±18 |
23±17 |
|
CKD stage at initial visit, n (%)
|
| 5 |
56 (34) |
27 (40) |
| 4 |
53 (32) |
21 (31) |
| 3b |
37 (23) |
16 (24) |
| 3a |
10 (6) |
1 (2) |
| 2 |
6 (4) |
1 (2) |
| 1 |
2 (1) |
1 (2) |
| Dialysis at time of initial visit, n (%) |
26 (16) |
N/A |
| Previous dialysis with renal recovery, n (%) |
10 (6) |
4 (6) |
| Albumin at initial visit (g/dl), mean±SD |
3.6±0.6 |
3.6±0.5 |
| First recorded Karnofsky PPS, mean±SD |
69±14 |
66±14 |
| Number of visits during study period, mean±SD |
3.4±2.9 |
4.2±3.5 |
| Number of hospitalizations during study period, mean±SD |
2.4±3.9 |
1.9±2.5 |
| Deaths during study period, n (%) |
60 (36) |
30 (45) |
|
Comorbidities, n (%)
|
| Hypertension |
147 (90) |
62 (93) |
| Diabetes |
83 (50) |
35 (52) |
| CHF |
71 (43) |
30 (45) |
| CVA |
41 (25) |
16 (24) |
| PVD |
36 (22) |
15 (22) |
| Dementia |
29 (18) |
13 (19) |
KPC, kidney palliative care; AMMWD, active medical management without dialysis; PPS, Palliative Performance Scale; CHF, congestive heart failure; CVA, cerebrovascular accident; PVD, peripheral vascular disease.
For the subset of patients choosing AMMWD, there was additional review of creatinine trends to estimate the time at which the eGFR fell consistently <20 ml/min per m2, a benchmark commonly used to guide preparation for dialysis (21). The date at which eGFR fell <20 ml/min per m2 (excluding episodes of AKI) was used to determine the duration of time until death (where death date was available), or the end of the study follow-up period for all patients who elected AMMWD at any point during the study period.
Results
Description of Patient Population
A total of 165 patients were seen in the KPC clinic during the study period. Mean age at initial visit was 72 years; 53% of patients were women. Seventy percent of patients were White and 28% identified as Black. Nearly two thirds of patients presented with CKD stage 4 or 5 (34% and 32%, respectively), with an average (±SD) eGFR of 25±18 ml/min per m2 at initial presentation. This reasonably high prevalence of CKD stage 4 is likely related to referrals for patients with life-limiting illnesses (e.g., metastatic cancer) other than CKD. A total of 26 patients (16%) were receiving dialysis at the time of the initial visit. Table 1 summarizes key demographic data for the KPC clinic. Of the total 165 patients, 60 (36%) died within the study period.
Symptom Identification and Management
Figure 1 (Supplemental Table 2) shows the proportion of respondents reporting each category of symptom severity. The three symptoms most frequently reported by clinic patients were fatigue, mobility issues, and pain (reported by 85%, 66%, and 58% of respondents, respectively). Poor mobility (18%), fatigue (12%), and anxiety (11%) were rated as “severe” or “very severe” by the greatest proportion of respondents. Figure 2 illustrates the percentage of patients who received a variety of common clinical activities (from both KPC and non-KPC providers). Of the pharmacologic interventions, antidepressants or anxiolytics were present for 50% of patients, and nonopioid analgesics for 66% of patients. Thirty-three percent of patients were prescribed opioids by any provider (with only 8% of these prescriptions coming directly from a KPC provider).
;)
Figure 1.: Patients seen in KPC clinic have high symptom burden. Please refer to
Supplemental Table 2 for the number of respondents for each symptom.
Figure 2.: Advance care planning and symptom management activities are common in KPC clinic. Analgesic refers to nonopioid agents. Homecare refers to any home-care services not including hospice. Mood refers to prescription or dose adjustment of an antidepressant, anxiolytic, or referral for psychotherapy. ESA, erythropoietin-stimulating agent.
Treatment Decision Making and AMMWD
Table 2 reviews treatment decision-making outcomes in the KPC clinic. Of the 139 patients who were not already on dialysis, 13 (9%) began dialysis during the study period and 67 (48%) elected to pursue AMMWD within the follow-up period. The AMMWD group was similar to those with dialysis management in terms of sex (57% women), race (68% White), and eGFR at presentation (23±17 ml/min per m2). Figure 3 illustrates the clinical trajectories of patients who elected AMMWD. Of the 67 patients who chose AMMWD, 44 (66%) had an eGFR that fell <20 ml/min per m2. Of these 44 patients, 25 (57%) continued with AMMWD and died within the follow-up period, whereas 17 (39%) remained alive at the end of data collection. Of the 25 patients who died within the study period, average time to death from the point when eGFR fell <20 ml/min per m2 was 472 days (range, 22–1782 days).
Table 2. -
Treatment decision making in the KPC clinic
| Key Clinical Decision |
N (% of appropriate denominator) |
Denominator Used (description) |
| Dialysis initiation |
13 (9) |
139 (patients in study cohort not on dialysis) |
| Active medical management without dialysis |
67 (48) |
139 (patients in study cohort not on dialysis) |
| Dialysis continuation |
19 (73) |
26 (patients in study cohort already on dialysis at time of first clinic visit) |
| Withdrawal from dialysis and hospice enrollment |
7 (27) |
26 (patients in study cohort already on dialysis at time of first clinic visit) |
| Transplantation |
0 (0) |
165 (total KPC clinic cohort) |
| Hospice |
41 (68) |
60 (patients who died within study period) |
KPC, kidney palliative care.
Figure 3.: Many patients in KPC clinic chose AMMWD. AMMWD, active medical management without dialysis.
Two of the patients who initially pursued an AMMWD trajectory ultimately decided to start dialysis. Of the patients who did not choose AMMWD, 11 initiated dialysis (in addition to the 26 who were on dialysis at initial presentation).
Of the 26 patients who were receiving dialysis at the time of the initial KPC clinic visit, 19 (73%) chose to continue dialysis throughout the study period. Of these 26 patients, ten died and seven (27%) received hospice after withdrawing from dialysis.
None of the patients seen in the KPC clinic received a kidney transplant.
ACP and End-of-Life Care
As shown in Figure 2, conversations about future healthcare preferences were the most common activity performed in the KPC clinic. Patients in the KPC clinic had an ACP or goals-of-care conversation, designation of a surrogate decision maker, and completion of an advance directive (such as a living will or POLST) in 87%, 91%, and 52% of instances, respectively.
Of all patients in the KPC clinic who died within the study period, 41 (68%) received hospice services (the denominator used in Table 2 includes patients on AMMWD and those receiving dialysis). More patients were referred to hospice among the subset who elected AMMWD (39% versus 15% of the patients who did not choose AMMWD). Slightly more than one third (37%) of our patients in the KPC clinic cohort died during the study period.
Discussion
Our description of an embedded KPC clinic demonstrates that integrating palliative care expertise into kidney care may address gaps in symptom management, ACP, and hospice access for people living with kidney disease. These gaps were addressed in two major ways: dedicated attention to symptom management, and using SDM to guide treatment choices, including end-of-life care.
Most patients reported fatigue, poor mobility, pain, and sleep difficulties, which aligns with patterns found in previous studies assessing symptom profiles in kidney disease (1,28,42). Fewer than 10% of patients in this study were prescribed opioids directly by KPC providers for pain management, highlighting that adequate pain management for patients living with kidney disease is not limited to opioid-responsive symptoms. Neuropathic etiologies and the presence of nonphysical pain stemming from emotional distress and unmet mental health needs are very prevalent, reflecting the need for a more integrative approach to symptom management (43).
Patients with kidney disease have low rates have ACP compared with other patients with serious illnesses, and this trend likely results in intense care delivery, especially near the end of life (7,9,12,44). Our work suggests that increased integration of palliative care into outpatient kidney care can increase ACP rates for patients with kidney disease. Over 80% of patients had an EHR-documented ACP conversation and designated surrogate decision maker.
We speculate that the high prevalence of ACP and goals-of-care conversations likely makes our care delivery model different from prevailing nephrology practice. This difference likely resulted in the high rate of patients choosing AMMWD (48% of referrals). Despite endorsement from professional societies, there are no clear guidelines on how to deliver AMMWD in the United States (18). Even when patients decline to initiate dialysis, there are barriers to providing AMMWD, including moral distress among nephrology providers and repeatedly asking patients if they would like to reconsider their decision (39). Our findings suggest that integration of palliative care into outpatient kidney care could potentially lead to lower rates of dialysis initiation in the United States, as is already the case in other developed countries (27,45).
Although our study is not designed as a survival analysis, our data support previous observations that survival with AMMWD can be months long, owing partly to the slow decline in GFR commonly seen in older patients (21,46,47).
Patients with kidney disease often have late referral to hospice care, resulting in very short hospice length of stay (48,49). Goals-of-care conversations typically happen during a terminal hospitalization, resulting in withdrawal from dialysis and very short survival. Of the patients who died within our study period, 68% were referred to hospice. We believe this value is higher than the national average for patients with kidney disease because of the reliance on SDM in our care delivery model.
Limitations of our work include limited generalizability because it is from a single center. The retrospective nature of the data prevents conclusions about causality or survival. It is important to note that, given individual variability in when eGFR fell <20 ml/min per m2, confounding from lead-time bias, and the need for longer follow-up, conclusions about survival on AMMWD are not possible from patients described in this study (50). Moreover, implementing clinical care that relies on dual-trained clinicians in nephrology and palliative care may not be feasible in many practice settings. Patients receiving care through the KPC clinic can reach an on-call general nephrology provider 24/7, but additional growth is needed to provide patients with more comprehensive support outside of normal clinic hours.
In terms of future work, our study provides an early description of KPC and AMMWD in the United States that can be useful to other centers to further develop care delivery models in a healthcare system where outpatient and home palliative care services are underfunded. Our study highlights the need for collaborative efforts in the form of a prospective, multisite registry, analogous to success seen in conditions like glomerular disease, where these efforts have resulted in larger sample sizes and more generalizable findings (51). Future work should also explore scalability of a model, likely incorporating nonphysician involvement from advance practice providers, and models of home-based care. Additionally, educational and operational interventions (e.g., utilization of decision aids) to improve primary palliative care delivery by nephrology providers could further improve scalability and lead to more goal-concordant care. Future work also needs to involve a more robust qualitative component to learn more about patient and family satisfaction, including during the bereavement period. These efforts can help refine future care delivery models in KPC.
Disclosures
A.E. Bansal reports being employed by University of Pittsburgh Medical Center, and receiving honoraria from UpToDate. N.C. Ernecoff reports being employed by the RAND Corporation. J.O. Schell reports having other interests in, or relationships with, Dialysis Clinic, Inc. (as palliative care advisor, receive salary support); receiving research funding from Palliative Care Research Collaborative; and being employed by University of Pittsburgh Medical Center; and receiving honoraria from UpToDate. The remaining author has nothing to disclose.
Funding
None.
Acknowledgments
The authors acknowledge support and mentorship from Dr. Robert Arnold and Dr. Tom Kleyman for the development of the KPC clinic.
Author Contributions
A.D. Bansal and J.O. Schell conceptualized the study, provided supervision, and were responsible for methodology and project administration; A.E. Bursic was responsible for data curation; A.E. Bursic and N.C. Ernecoff were responsible for formal analysis and validation; and all authors wrote the original draft and reviewed and edited the manuscript.
Data Sharing Statement
Partial restrictions to the data and/or materials apply. Anonymized data can be made available in a repository after obtaining permission from the University of Pittsburgh Institutional Review Board.
Supplemental Material
This article contains the following supplemental material online at http://kidney360.asnjournals.org/lookup/suppl/doi:10.34067/KID.0001352022/-/DCSupplemental.
Supplemental Table 1. List of search terms used to identify clinical outcomes.
Supplemental Table 2. Number of respondents for each symptom.
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