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. Author manuscript; available in PMC: 2025 Mar 1.
Published in final edited form as: Am J Kidney Dis. 2023 Sep 20;83(3):318–328. doi: 10.1053/j.ajkd.2023.07.018

Advance Care Planning and Palliative Care Consultation in Kidney Transplantation

Marlena C Fisher a, Xiaomeng Chen b, Deidra C Crews c, Lyndsay DeGroot a, Nwamaka D Eneanya d, Nidhi Ghildayal e, Marshall Gold a, Yi Liu e, Justin J Sanders f, Jennifer S Scherer g, Dorry L Segev e, Mara A McAdams-DeMarco e
PMCID: PMC10922230  NIHMSID: NIHMS1933301  PMID: 37734687

Abstract

Rationale & Objective:

Due to the high risk of waitlist mortality and post-transplant complications, kidney transplant (KT) patients may benefit from advance care planning (ACP) and palliative care consultation (PCC). We quantified the prevalence and racial disparities in ACP and PCC among KT candidates and recipients.

Study Design:

Prospective cohort study

Setting & Participants:

2,575 adult KT candidates and 1,233 adult recipients (2008–2020).

Exposure:

Race and ethnicity.

Outcomes:

All reports of ACP and PCC were abstracted from chart review. ACP was defined as patient self-report of an advance directive, presence of an advance directive in the medical record, or a documented goals-of-care conversation with a provider. PCC was defined as an ordered referral, or a documented palliative care note in the medical record.

Analytical Approach:

Racial/ethnic disparities in ACP/PCC were estimated using adjusted logistic regression.

Results:

21.4% of candidates and 34.9% of recipients engaged in ACP. There were racial/ethnic disparities in ACP among candidates (White=24.4%, Black=19.1%, Hispanic=15%, Other race and ethnicity=21.1% p=0.008) and recipients (White=39.5%, Black=31.2%, Hispanic=26.3%, Other race and ethnicity=26.6% p=0.007). After adjustment, Black recipients had a 29% lower likelihood of engaging in ACP (odds ratio [OR]=0.71, 95% confidence interval [CI]:0.55–0.91) than White recipients. Among older (aged ≥65 years) recipients, those who were Black had a lower likelihood of engaging in ACP, but there was no racial disparity among younger recipients (pinteraction=0.020). 4.2% of candidates and 5.1% of recipients engaged in PCC; there were no racial disparities in PCC among candidates (White=5.3%, Black=3.6%, Hispanic=2.5%, Other race and ethnicity=2.1%, p=0.13) or recipients (White=5.5%, Black=5.6%, Hispanic=0.0%, Other race and ethnicity=1.3% p=0.21).

Limitations:

Generalizability may be limited to academic transplant centers.

Conclusions:

ACP is not common among KT patients and minoritized transplant patients are least likely to engage in ACP; PCC is less common. Future efforts should aim to integrate ACP and PCC into the KT process.

Keywords: advance care planning, palliative care, epidemiology, kidney disease, transplantation

Plain Language Summary

KT candidates and recipients are at elevated risk of morbidity and mortality. They may benefit from completing a document or conversation with their palliative care provider that outlines their future healthcare wishes, known as advance care planning (ACP), which is a component of palliative care consultation (PCC). We wanted to determine how many KT candidates and recipients have engaged in ACP or PCC and identify potential racial disparities. 21.4% of candidates and 34.9% of recipients engaged in ACP. After adjustment, Black recipients had a 29% lower likelihood of having ACP. 4.2% of KT candidates and 5.1% of recipients engaged in PCC. No racial disparities were found in PCC.

INTRODUCTION

After years on dialysis, candidates for kidney transplantation (KT) experience a high burden of comorbidities, symptoms, frailty, and cognitive impairment even at younger ages;1–6 consequently, 27% percent of those listed for KT die or are removed from the transplant list within three years.1–10 KT recipients undergo a major surgery which results in a median of 5 days1 of hospitalization and 15.9% of recipients are admitted to an intensive care unit (ICU).4 After KT, symptoms take time to improve and may not fully resolve.7 Although advancements in KT have led to longer post-KT survival,6 20.7% of deceased donor recipients and 12.3% of living donor recipients die within five years of KT.8 KT candidates and recipients experience distinct risks of morbidity and mortality.

Therefore, advance care planning (ACP), an iterative process to explore, communicate, and record preferences for future medical treatment and care and a common component of palliative care consultation (PCC),9 may be beneficial for KT candidates and recipients. Palliative care consultation is a method that addresses quality of life for patients and family members who are dealing with life-threatening illness through early and ongoing assessment and management of symptoms and pain, as well as provision of psychosocial and spiritual resources.10 PCC can simultaneously be delivered with curative care, and it can also help individuals plan and receive end-of-life care that is congruent with their wishes.11 Benefits of PCC include fewer admissions to the emergency department or intensive care unit, decreasing symptom burden, improving quality of life, and increasing ACP engagement.10,11,15–17 While it is likely that ACP and PCC would benefit KT patients while on the waiting list and after KT, it is unclear how often they are being used in transplantation. Furthermore, it is unclear whether access to ACP and PCC is equitable, as there are clear racial disparities in their use among patients undergoing dialysis.12,13 The goals of our study were to determine how many KT candidates and recipients have engaged in ACP or PCC and identify potential racial disparities.

METHODS

Hypotheses

First, we hypothesized that the prevalence of ACP and PCC would be low but distinct among KT candidates and recipients. In our conceptual model, we considered that 1) candidates wait a substantial amount of time, often on dialysis, before receipt of KT which puts them at higher risk of mortality than those who receive KT;1–8 2) the cohort of KT recipients includes pre-emptive recipients who are often healthier than the overall population of dialysis patients;1–7 3) there are inherent risks to transplant surgery which impart short-term risks that decline after surgery, while there are long term risk for morbidity, like post-transplant diabetes mellitus (PTDM) for example;4–8 and 4) KT recipients are reliant on lifelong immunosuppression which has an overwhelming benefit but not without risks and side effects.4–8 We also hypothesized that racial disparities in ACP and PCC will be present in both KT candidates and recipients and these racial disparities will be more prevalent across uniquely vulnerable groups of minoritized populations, including individuals who are older and frail.

Study design

We leveraged a prospective cohort study of 2,575 adult candidates enrolled at evaluation for KT (11/2009–2/2020) and a separate prospective cohort of 1,233 adult recipients enrolled at admission for KT (12/2008–2/2020) at Johns Hopkins Hospital. In this study, candidates and recipients who were English-speaking and aged≥18 years at evaluation and transplantation, respectively, were eligible. We enrolled and re-consented candidates in the recipient cohort when they received KT (n=470). In 2020, we conducted chart reviews to assess presence of ACP and PCC as described below.

Patient characteristics were self-reported or calculated at the time of enrollment, including age, sex, education, marital status, household income, dialysis modality, years on dialysis, cause of kidney failure, and donor type. We ascertained comorbidities from self-report and supplemented the data with electronic medical chart abstraction; CCI (Charlson Comorbidity Index), a widely used weighted index reflecting patient mortality, was calculated from available patient comorbidity information.14,15 We assessed physical functional status of participants at enrollment including frailty (≥3 of 5 components from the Fried physical frailty phenotype),16 lower extremity impairment (Short Physical Performance Battery [SPPB] score≤10),17 Activities of Daily Living (ADL) dependence (≥1 activity),18 and Instrumental Activities of Daily Living (IADL) dependence (≥1 activity).18 We also assessed global cognitive impairment (score<80) using the Modified Mini Mental State Exam [3MS].20 Finally, we assessed Medical Distrust (scored from 9–45) using the Health Care System Distrust Scale, a 9-item scale with two subdomains: perceptions of technical competence and perceptions of value congruence. High Mistrust was defined as a score≥29 (90% percentile).

Participant race and ethnicity were self-reported at evaluation and KT; if a participant record was missing race and ethnicity, then it was supplemented with chart abstraction. To align with the transplant registry, race and ethnicity was measured and classified in a manner that was consistent with the collection of the race and ethnicity variable by the Organ Procurement and Transplantation Network: White, Non-Hispanic; Black, Non-Hispanic; Hispanic/Latino; Asian, Non-Hispanic; Amer Ind/Alaska Native, Non-Hispanic; Native Hawaiian/Other Pacific Islander, Non-Hispanic; Multiracial, Non-Hispanic. Race and ethnicity are social constructs, without scientific or biological meaning; thus, we explored race and ethnicity in the context of various sociodemographic characteristics, rather than focusing on race alone.

All clinical and research activities reported are consistent with the Declaration of Helsinki and the Declaration of Istanbul. The study protocol was approved by the Johns Hopkins University (JHU) Institutional Review Board. All participants provided written informed consent.

Ascertainments of ACP and PCC

At JHU, ACP is addressed on admission to the hospital. Patients are asked if they have completed an advance directive by registration or the admitting nurse. If individuals already have an advance directive, it is scanned into the patient chart. This information is presented in the Capacity and Advance Care Planning Information tab in each patient’s electronic health record. The palliative care team is multidisciplinary and includes physicians, nurse practitioners, registered nurses, and social workers that provided care to patients throughout the study period. The team was founded in 2007, and the team has grown since its inception. The palliative care team was formed prior to our study period, and services were consistently available to patients throughout this timespan. Palliative care referral is required to come from the attending physician. There were no clear criteria that lead to referral of PCC and is largely limited to the judgement of the attending provider. Once a referral is made, a member from the palliative care team is able to assess the patient within eight hours. Notes are documented in the electronic health record under the general notes section. From our understanding and general review of the literature, no change in the ACP/PCC process has occurred during the timeline of our study; therefore, we do not believe there is a need to consider an era effect in our study.

The primary author (MCF) constructed the data abstraction sheet. Research associates then reviewed the chart for evidence indicating ACP or PCC in 2020. ACP was defined as presence of at least one of three criteria within the patient’s chart: 1) the patient self-reported that he or she completed an advance directive, 2) the advance directive document was uploaded into the patient’s chart, or 3) there was a documented note of a goals-of-care conversation with a provider in the chart. PCC was defined as presence of least one of the two criteria: 1) there is an ordered referral for palliative care, or 2) there is a note present from a palliative care provider.

Statistical analysis

Descriptive analysis was performed to describe the distribution of characteristics overall and by race and ethnicity as presented in Table 1. We summarized means with standard deviations (SDs) for normally distributed continuous variables, medians with interquartile ranges (IQRs) for non-normally distributed continuous variables, and proportions for categorical variables. Differences by race and ethnicity were tested using ANOVA test, Kruskal-Wallis test, or Fisher’s exact test, where appropriate. We estimated the prevalence of ACP and PCC by race and ethnicity among KT candidates and recipients, separately; we also stratified these findings by age.

Table 1:

Characteristics by race and ethnicity for kidney transplant (KT) candidates (White, Black Hispanic, Other race and ethnicity) (n=2,575 at evaluation) and recipients (n=1,233 at admission).

Characteristics KT candidates at evaluation KT recipients at admission
Total n=2,575 White n=1,152 Black n=1,200 Hispanic n=80 Other n=143 p value Total n=1,233 White n=615 Black n=502 Hispanic n=37 Other n=79 p value
Age, mean (SD) 55.0 (13.4) 57.0 (13.8) 54.2 (12.5) 44.8 (14.2) 51.9 (13.4) <0.001 52.9 (13.8) 54.0 (14.6) 52.6 (12.6) 48.9 (15.0) 48.4 (13.9) 0.001
Female sex 41.0% 38.1% 44.0% 40.0% 39.2% 0.03 39.5% 38.9% 40.6% 40.5% 36.7% 0.9
High school or below 44.8% 37.3% 53.9% 41.2% 31.4% <0.001 38.9% 31.4% 48.5% 43.2% 33.3% <0.001
Marital status
 Single 24.5% 16.4% 32.1% 33.8% 20.7% <0.001 23.7% 19.4% 29.0% 24.3% 23.1% <0.001
 Married/Cohabitating 58.4% 68.6% 47.5% 55.0% 68.1% 62.2% 69.1% 52.5% 62.2% 69.2%
 Divorced/Separated 12.9% 10.8% 15.3% 10.0% 10.4% 10.5% 7.2% 15.0% 13.5% 6.2%
 Widowed 4.3% 4.2% 5.0% 1.2% 0.7% 3.6% 4.2% 3.6% 0.0% 1.5%
Employed 35.1% 38.1% 30.6% 47.5% 41.5% <0.001 44.8% 51.3% 36.9% 43.2% 44.9% <0.001
Household income <$35,000 28.5% 21.5% 38.1% 27.8% 13.0% <0.001 20.2% 12.5% 32.1% 6.7% 16.1% <0.001
Type of dialysis
 Pre-emptive KT 29.1% 38.1% 20.1% 29.1% 31.6% <0.001 19.9% 29.4% 8.8% 13.9% 17.1% <0.001
 Hemodialysis 57.3% 46.8% 69.0% 54.4% 46.3% 64.6% 53.8% 78.3% 66.7% 63.2%
 Peritoneal dialysis 13.6% 15.1% 11.0% 16.5% 22.1% 15.5% 16.8% 12.8% 19.4% 19.7%
Years on dialysis, median (IQR) 0.8 (0.0, 3.0) 0.4 (0.0, 2.1) 1.3 (0.2, 3.9) 0.9 (0.0, 3.3) 0.6 (0.0, 3.0) <0.001 2.4 (0.5, 5.3) 1.3 (0.0, 3.7) 3.9 (1.7, 6.6) 3.7 (0.8, 7.0) 2.8 (0.9, 5.5) <0.001
Cause of ESKD
 Glomerulonephritis 22.1% 22.4% 19.4% 32.7% 31.5% <0.001 25.6% 27.4% 20.8% 24.3% 43.0% <0.001
 Diabetes mellitus 20.2% 15.7% 25.5% 20.0% 18.9% 16.3% 13.5% 21.2% 2.7% 13.9%
 Hypertension 30.2% 23.5% 38.3% 27.3% 28.8% 31.5% 21.7% 44.4% 45.9% 20.3%
 Others 27.4% 38.4% 16.8% 20.0% 20.7% 26.5% 37.5% 13.6% 27.0% 22.8%
Frailty 23.4% 21.4% 26.9% 18.4% 12.4% <0.001 17.7% 16.1% 20.0% 20.0% 15.3% 0.4
Global cognitive impairment 20.7% 12.3% 28.2% 23.9% 24.4% <0.001 10.3% 7.1% 12.1% 21.9% 18.2% <0.001
Lower extremity impairment 53.4% 51.4% 58.4% 38.0% 38.2% <0.001 52.6% 45.9% 59.9% 55.2% 53.8% 0.001
ADL dependence 8.9% 7.7% 10.3% 7.8% 7.0% 0.2 6.0% 6.7% 5.1% 2.9% 8.3% 0.6
IADL dependence 22.0% 21.2% 23.0% 23.1% 20.0% 0.7 14.9% 15.1% 13.2% 18.8% 21.7% 0.3
CCI Category 0.002 0.002
 1st Quartile 38.0% 40.9% 34.2% 51.4% 36.5% 46.2% 50.1% 38.8% 62.2% 54.5%
 2nd Quartile 22.8% 21.3% 24.0% 14.3% 29.6% 12.1% 12.5% 11.6% 13.5% 11.7%
 3rd Quartile 19.2% 16.7% 22.4% 14.3% 16.5% 28.7% 25.7% 34.1% 21.6% 22.1%
 4th Quartile 20.1% 21.1% 19.4% 20.0% 17.4% 12.9% 11.7% 15.5% 2.7% 11.7%
Comorbidities
 Myocardial infarction 9.5% 11.6% 7.5% 8.6% 8.7% 0.02 5.9% 6.5% 5.6% 2.7% 5.2% 0.9
 Peripheral vascular disease 5.8% 6.9% 5.2% 5.7% 2.6% 0.2 5.7% 6.4% 4.8% 5.4% 6.5% 0.7
 Cerebral vascular disease 5.6% 6.0% 5.7% 4.3% 2.6% 0.5 3.5% 2.7% 4.4% 2.7% 5.3% 0.3
 Dementia 0.4% 0.5% 0.3% 1.4% 0.0% 0.4 0.2% 0.2% 0.2% 0.0% 0.0% 0.9
 Chronic lung disease 6.3% 7.0% 5.4% 4.3% 8.7% 0.3 5.4% 4.2% 6.6% 8.1% 5.2% 0.2
 Rheumatological disease 7.0% 6.1% 7.9% 4.3% 8.8% 0.3 14.8% 15.9% 14.1% 13.5% 11.8% 0.8
 Peptic ulcer disease 3.9% 4.4% 3.2% 7.1% 3.5% 0.2 4.1% 5.3% 3.1% 2.7% 1.3% 0.2
 Diabetes 41.2% 37.9% 44.8% 35.7% 40.9% 0.02 31.0% 26.5% 38.8% 13.5% 24.7% <0.001
 Diabetes with complications 36.9% 37.3% 38.3% 25.9% 28.2% 0.9 31.2% 30.6% 35.5% 8.7% 19.6% 0.01
 Moderate/severe liver disease 3.2% 2.6% 3.6% 4.3% 3.5% 0.6 2.7% 1.7% 4.4% 0.0% 1.3% 0.04
 Metastatic cancer 1.0% 1.2% 0.8% 0.0% 0.9% 0.9 0.4% 0.5% 0.4% 0.0% 0.0% 0.9
 Leukemia 0.3% 0.4% 0.2% 0.0% 0.0% 0.7 0.3% 0.3% 0.2% 0.0% 0.0% 0.9
 Lymphoma 1.0% 1.5% 0.6% 1.4% 0.0% 0.2 0.2% 0.3% 0.0% 0.0% 0.0% 0.6
 HIV 3.6% 0.5% 6.8% 4.3% 0.9% <0.001 2.7% 0.8% 5.6% 0.0% 0.0% <0.001
 Congestive heart failure 13.8% 10.5% 17.7% 7.0% 16.3% <0.001 6.1% 4.7% 8.3% 0.0% 6.7% 0.04
High Distrust, % 14.5% 9.5% 19.6% 8.3% 17.6% 0.10 11.2% 3.9% 22.7% 0.0% 0.0% 0.018
Donor type
 Living donor - - - - - - 37.5% 53.5% 18.1% 37.8% 35.4% <0.001
 Deceased donor - - - - - - 62.5% 46.5% 81.9% 62.2% 64.6%
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Abbreviations: KT, kidney transplant; SD, standard deviation; IQR, interquartile range; ESKD, end-stage kidney disease; ADL, activities of daily living; IADL, instrumental activities of daily living; CCI, Charlson comorbidity index.

Due to small samples sizes for individuals who reported Hispanic or Other race and ethnicity, these participants were excluded from the following adjusted models. Among White and Black candidates (n=2,352) and recipients (n=1,117), multivariate logistic regression models were used to examine the associations of ACP and PCC, including patient characteristics (race and ethnicity, age, sex, education, marital status, employment, household income, dialysis modality, CCI, donor type [for recipients]) and functional status (frailty, global cognitive impairment, lower extremity impairment, ADL dependence, and IADL dependence). We adjusted for patient characteristics. Additionally, we tested whether associations between race and ethnicity (Black vs. White) and ACP as well as PCC differed by other characteristics or functional status by including an interaction term between race and ethnicity and each factor in separate models; a Wald test was used to examine the significance.

All analyses were performed using Stata version 15 (StataCorp, College Station, TX). Twosided p-values <0.05 were considered statistically significant.

Missing Data

Multivariate imputation with chained equations (MICE) were used to impute missing covariates.21,22 10 datasets were imputed. Rubin’s Rule was used to pool the results. Missing covariates and race and ethnicity, age, and sex were included in the model (Item S1).

Sensitivity analysis

Medical distrust score (scored:9–45) was assessed as described above. We quantified the adjusted association of Distrust with engagement in ACP and PCC (Table S1).

RESULTS

Study populations

Among 2,575 KT candidates, the mean age at evaluation was 55 years (SD=13.4), 41.0% were female, 70.9% were on dialysis, and 46.6% were Black. The median number of years on dialysis was 0.8 (IQR=0.0–3.0); 57.3% of participants were undergoing hemodialysis and 13.6% were undergoing peritoneal dialysis. Furthermore, 23.4% were frail, 20.7% had global cognitive impairment, 53.4% had lower extremity impairment, 8.9% had ADL dependence, and 22.0% had IADL dependence (Table 1).

Among 1,233 KT recipients, the mean age at admission for KT was 52.9 years (SD=13.8), 39.5% were female, 40.7% were Black, and 80.1% were receiving dialysis. The median number of years on pre-KT dialysis was 2.4 (IQR=0.5–5.3); 64.6% were undergoing hemodialysis and 15.5% were undergoing peritoneal dialysis. Furthermore, 17.7% were frail, 10.3% had global cognitive impairment, 52.6% had lower extremity impairment, 6.0% had ADL dependence, and 14.9% had IADL dependence (Table 1).

ACP among KT candidates

21.4% of KT candidates engaged in ACP; 15.9% self-reported that they completed an advance directive, 7.8% had an advance directive document uploaded into their chart, and 5.5% had a documented goals-of-care conversation with a provider in the chart (Figure S1). Older candidates were more likely to engage in ACP; 19.9% of candidates aged 18–64 years and 25.7% of candidates aged ≥65 years engaged in ACP (p=0.002) (Figure 1). Candidates undergoing hemodialysis were 35% less likely to have ACP when compared to candidates who received a pre-emptive KT (OR=0.65, 95%CI:0.51–0.82) (Table S2).

Figure 1:

Figure 1:

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Race and ethnicity disparities in advance care planning by kidney transplant (KT) candidate (n=2,575) (2009–2020) and recipient age (n=1,233) (2008–2020).

After adjustment, there were no race and ethnicity differences in ACP (Black vs. White odds ratio [OR]=0.85, 95% confidence interval [CI]:0.69–1.05) among candidates (Table 2). The association between race and ethnicity and ACP did not differ across pre-KT dialysis status. However, Black candidates on hemodialysis were 26% less likely to engage in ACP than White candidates (OR=0.74, 95%CI:0.56–0.98), while there were no racial/ethnic differences among pre-emptive KT candidates (OR=1.05, 95%CI:0.73–1.53) or those on peritoneal dialysis (OR=.90, 95%CI:0.50, 1.62) (Table S3).

Table 2: Associations between race and ethnicity and advance care planning and palliative care consultation among White and Black kidney transplant (KT) candidates and recipients.

Odds ratios (ORs) with 95% confidence interval (CI) are presented from logistic regression models. Bolded estimates represent statistically significant associations with advance care planning. Abbreviations: KT, kidney transplant; OR, odds ratio; 95% CI, 95% confidence interval; CCI, Charlson comorbidity index.

Crude Odd Ratios (cORs) Adjusted Odd Ratios (aORs)*
KT candidates KT recipients KT candidates KT recipients
n=2,352
OR (95% CI)		 n=1,117
OR (95% CI)		 n=2,352
OR (95% CI)		 n=1,117
OR (95% CI)
ACP
 White Reference Reference Reference Reference
 Black 0.73 (0.60, 0.89) 0.71 (0.55, 0.91) 0.85 (0.69, 1.05) 0.69 (0.52, 0.92)
PCC
 White Reference Reference Reference Reference
 Black 0.68 (0.46, 1.01) 1.01 (0.60, 1.69) 0.65 (0.42, 1.00) 0.81 (0.44, 1.46)
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*

Adjusted for age, sex, race and ethnicity, education, marital status, employment, household income, type of dialysis, CCI, and donor type (for KT recipients).

ACP among KT recipients

34.9% of KT recipients engaged in ACP; 28.5% self-reported that they completed an advance directive, 12.8% had an advance directive document uploaded into their chart, and 7.6% had a documented goals-of-care conversation with a provider in the chart (Figure S1). 31.7% of younger recipients and 46.9% of older recipients engaged in ACP (p<0.001) (Figure 1). 77 of 470 (16.4%) individuals who were reenrolled as recipients from the candidate cohort engaged in ACP or PCC or both as recipients, but neither as candidates.

Recipients with a high school education or below had a 34% lower likelihood of engaging in ACP (OR=0.66, 95%CI:0.50–0.87); while older age (OR=1.80, 95%CI:1.31–2.49), pre-KT hemodialysis (OR=1.59, 95%CI:1.12–2.26), lower extremity impairment (OR=1.60, 95%CI:1.16–2.20), ADL dependence (OR=1.85, 95%CI:1.05–3.28), and IADL dependence (OR=1.72, 95%CI:1.16–2.54) were associated with a higher likelihood of engaging in ACP (Table S2).

Black recipients were 29% less likely to engage in ACP (OR=0.71, 95%CI:0.55–0.91) than their White counterparts, after adjustment (Table 2). Furthermore, the association between race and ethnicity and ACP differed by age (p=0.020): among older recipients, those who were Black had a 62% lower likelihood of engaging in ACP (OR=0.38, 95%CI:0.22–0.68), but there was no racial disparity among younger recipients (OR=0.81, 95%CI:0.59–1.12) (p=0.020) (Table S4).

PCC among KT candidates

4.2% of KT candidates engaged in PCC; 4.1% of candidates had referral for PCC and 3.1% of candidates had a documented palliative care note in the chart (Figure S2). 3.8% of younger candidates and 5.6% of older candidates engaged in PCC (p=0.047) (Figure 2). Candidates who were employed were 58% less likely to engage in PCC (OR=0.42, 95%CI:0.24–0.73). Furthermore, having a CCI score in the highest quartile (OR=2.07, 95%CI:1.12–3.80), lower extremity impairment (OR=1.78, 95%CI:1.05–3.01) were associated with higher likelihoods of engaging in PCC (Table S5).

Figure 2.

Figure 2.

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Race and ethnicity disparities in palliative care consultation by kidney transplant candidate (n=2,575) (2009–2020) and recipient age (n=1,233) (2008–2020)

There were no race and ethnicity disparities in PCC after adjustment (OR=0.65, 95%CI:0.42–1.00) for KT candidates (Table 2). However, this association differed by frailty status (p=0.02): among frail candidates, those who were Black were 65% less likely to engage in PCC (OR=0.35, 95%CI:0.17–0.73) while there was no racial/ethnic differences among the non-frail candidates (OR=0.96, 95%CI:0.57–1.61) In addition, the association between race and ethnicity and PCC did not differ across employment status (p=.643): however, among candidates who were not employed, Black candidates were 38% less likely to engage in PCC than their White counterparts (OR=0.62, 95%CI:0.39–1.00), while there were no racial/ethnic differences among candidates who were employed (OR=.80, 95%CI:0.30–2.10) (Table S6)

PCC among KT recipients

5.1% of KT recipients, engaged in PCC; 4.9% had referral to a palliative care provider and 3.7% had a documented note by a palliative care provider in the chart (Figure S2). 3.8% of younger recipients and 10.0% of older recipients engaged in PCC (p<0.001) (Figure 2). Older recipients were more likely to engage in PCC (OR=2.19, 95%CI:1.22–3.94), and those who were employed were 51% less likely to engage in PCC (OR=0.49, 95%CI:0.26–0.95) (Table S5).

There were no race and ethnicity disparities in PCC after adjustment (OR=0.81, 95%CI:0.44–1.46) among White and Black recipients (Table 2) and the association between race and ethnicity and PCC did not differ by any of the pre-specified factors (all p>0.05) (Table S7).

Sensitivity analysis

We did not find an association of medical distrust with engagement in ACP or PCC (Table S1) in White and Black KT candidates or recipients.

DISCUSSION

In this prospective cohort study, 21.4% of candidates and 34.9% of recipients engaged in ACP. After adjustment, Black recipients had a 29% lower likelihood of having ACP (OR=0.71, 95%CI:0.55–0.91) than White recipients. Among older recipients, those who were Black had a lower likelihood of engaging in ACP, but there was no racial disparity among younger recipients (p=0.020). KT candidates on hemodialysis had a decreased likelihood of engaging in ACP (OR=0.65, 95%CI:0.51–0.82). 4.2% of candidates and 5.1% of recipients engaged in PCC; there were no significant racial disparities in PCC engagement. The association between race and ethnicity and PCC only differed by frailty status, where Black candidates who were frail were significantly less likely to receive a PCC (OR=0.35, 95%CI:0.17–0.73).

To our knowledge, this is the first study to characterize engagement in ACP among KT candidates and recipients, rather than chronic kidney disease patients or those undergoing dialysis.26 A prior study found higher engagement in ACP among nursing home residents receiving dialysis in 2006 and 2007 and they reported an adjusted ACP prevalence of 47%.24 Our sample covered a broader patient population of KT candidate and recipients which is healthier. Interestingly, the prevalence of ACP reported in our study is consistent with the general US population of 36.7%,27 despite the higher burden of morbidity and mortality in KT candidates and recipients. The results of our study signal a need for greater opportunity to engage in ACP and PCC during the KT process.

Notably, KT candidates who were receiving hemodialysis were 35% less likely to engage in ACP. In the clinical hemodialysis setting, caregivers may focus on curative treatment or laboratory results and the patient’s present condition, rather than addressing what may come in the future.28–29 Caregivers who regularly interact with patients during these treatments may also not have the training required to properly communicate regarding sensitive or emotional topics, such as ACP.29 A cohesive national policy on routine ACP may facilitate more comprehensive training on ACP delivery for caregivers who have frequent patient interaction during delivery of hemodialysis treatments.28–36

This study also highlights the race and ethnicity disparities in ACP. Our results are consistent with other studies in the United States that have identified racial and ethnic disparities in ACP among non-transplant populations.32–34 These disparities may be attributable to differing cultural preferences in the method of ACP among racial, ethnic, and cultural groups. For example, a study of in-center dialysis patients identified that Black and Latino dialysis patients were more inclined and preferred to engage in informal end of life discussions as opposed to written documentation.23 Ahn et al.35 found that 31% of Black dialysis patients had ACP conversations with their healthcare provider, despite 92% reporting that their healthcare provider approached them to discuss ACP. Ladin and colleagues36 found that the definition of ACP varies between clinicians and patients, which may result in miscommunication regarding the intervention. Further, clinicians reported avoiding ACP conversations with patients from minority groups due to perceived cultural or religious barriers. Additionally, religion and spirituality are important to many, yet are not currently integrated into the ACP process in hospitals; this may exacerbate disparities in groups that value religion and spirituality.37 The results of our study on ACP expand upon existing literature in ESKD and highlight the persistence of racial disparities in ACP among KT candidates and recipients. Future studies are needed to explore cultural difference and examine how providers can personalize care.

In contrast to other solid organ transplant populations, our results illustrate marginally higher ACP engagement among KT candidates and recipients. For example, Wang et al.38 examined ACP in liver transplant candidates and found only 5.5% of these patients had ACP documentation and a goals of care discussion present in the medical record compared to 7.8% in our study. Further, only 9% of liver transplant candidates self-reported completing ACP prior to transplant, yet none of them had ACP documentation or a goals of care discussion with a provider other than a social worker present in the medical record.38 While these populations are quite different from KT patients the sum of the literature highlights the need for ACP/PCC throughout the field of transplantation.

PCC engagement was higher among KT candidates and recipients in all race and ethnicity groups than what was reported in hospitalized patients with ESKD on dialysis in 2014 (White=3.69%, Black=1.91%, Hispanic=1.89%),13 and lower than non-hospitalized patients with ESKD on dialysis (16.7%)26 and patients with chronic kidney disease (eGFR<60: 14.7%, eGFR 15–60: 14.3%, and eGFR <15: 17.9%).11 While our study found low rates of PCC use with no significant race and ethnicity disparities, Wen et al.13 noted an upward trend in PCC from 2006 to 2014 in a US sample, along with lower PCC engagement by Black and Hispanic patients than White patients.13 This disparity has also been reported in other studies on hospitalized patients with ESKD on dialysis and in older adults.13,39,40 Notably, the association of race and ethnicity and PCC in our study differed by frailty status only among KT candidates, where patients who were Black and frail had a significantly less likelihood of engaging in PCC. This finding highlights the need to assess frailty during pre-transplant evaluation,2,41 with elevated results triggering a PCC due to the increased risk of adverse outcomes among frail candidates and recipients.42–50

There were several limitations in this study. First, this study is limited to a single transplant centers potentially reducing generalizability. Second, this is a cross-sectional study that measured ACP and PCC at the time of chart review; therefore, we were not able to identify if there were changes over time in a patient’s ACP or PCC use. Third, we were not powered to test associations for Hispanic and Other race and ethnicity groups due to small sample sizes and the differences in PCC. Fourth, our cohorts did not capture spirituality and religiosity which are important cultural concepts to consider in the ACP/PCC framework. Similarly, we were also not able to determine whether ACP/PCC was driven by caregiver offers or individual acceptance of ACP/PCC; this information would be helpful in understanding differences in engagement between sociodemographic groups. Finally, the definition of ACP completion included self-report of advance directive completion, which could potentially foster a bias. However, this was mitigated by also including documentation in the medical record that included the presence of an advance directive or a provider note of a goals of care discussion. Despite these limitations, this study has notable strengths, including the large sample size and diversity of this cohort study across various sociodemographic dimensions; the ability to characterize and analyze ACP and PCC engagement with patient data on multiple comorbidities; and the use of data abstracted from review that utilized several ACP/PCC criteria, allowing for a comprehensive examination of our outcomes.

Engagement in ACP was low and PCC was rare among KT candidates and recipients. Furthermore, there were racial disparities in ACP engagement among KT recipients. Several patient and functional status characteristics were associated with prevalence of ACP and PCC. Future studies should seek to better understand the low rates of and structural barriers to ACP and PCC. Future research should also identify potential interventions and opportunities to systematically integrate ACP and PCC into the routine care of patients undergoing KT.

Supplementary Material

1

Figure S1: Definitions of advance care planning among White, Black, Hispanic, Other race and ethnicity kidney transplant candidates (n=2,575)(2009–2020) and recipients (n=1,233)(2008–2020).

Figure S2: Definitions of palliative care consultation among White, Black, Hispanic, Other race and ethnicity kidney transplant candidates (n=2,575)(2009–2020) and recipients (n=1,233)(2008–2020).

Item S1. Missing Data

Table S1. Associations between Medical Distrust and Advanced Care Planning (ACP) and Palliative Care Consultation (PCC) Among White and Black kidney transplant candidates (n=275) and recipients (n=95).

Table S2: Associations between patient characteristics and advance care planning among White and Black kidney transplant candidates and recipients.

Table S3. Effect Modifiers of the Association between Race and Ethnicity and Advance Care Planning Among White and Black Kidney Transplant Candidates.

Table S4. Effect Modifiers of the Association between Race and Ethnicity and Advance Care Planning Among White and Black Kidney Transplant Recipients.

Table S5: Associations between patient characteristics and palliative care consultation among White and Black kidney transplant candidates and recipients.

Table S6. Effect Modifiers of the Association between Race and Ethnicity and Palliative Care Consultation Among White and Black Kidney Transplant Candidates.

Table S7. Effect Modifiers of the Association between Race and Ethnicity and Palliative Care Consultation Among White and Black Kidney Transplant Recipients by Patient Characteristics.

Support:

This study was funded by National Institute of Aging, grant number R01AG077888 (PI: McAdams-DeMarco). Study investigators were funded by the National Institute of Aging, the National Institute of Allergy and Infectious Diseases, the National Heart, Lung, and Blood Institute, and the National Institute of Nursing Research: grant numbers K24HL148181 (PI: Crews), F31NR019733 (PI: DeGroot), F31NR019211 (PI: Fisher), R01AG055781 (PI: McAdams-DeMarco), R01AG077888 (PI: McAdams-DeMarco), R01AG078212 (PI: McAdams-DeMarco), K02AG076883 (PI: McAdams-DeMarco), and K24AI144954 (PI: Segev). The funders had no role in the study design, data collection, analysis, reporting, or the decision to submit for publication.

Footnotes

Financial Disclosure: The authors declare that they have no relevant financial interests.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Data Sharing: The data underlying this article are available upon request from the senior author.

Prior Presentation: Presented in part at the American Transplant Congress 2023; June 4, 2023; San Diego, CA.

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

1

Figure S1: Definitions of advance care planning among White, Black, Hispanic, Other race and ethnicity kidney transplant candidates (n=2,575)(2009–2020) and recipients (n=1,233)(2008–2020).

Figure S2: Definitions of palliative care consultation among White, Black, Hispanic, Other race and ethnicity kidney transplant candidates (n=2,575)(2009–2020) and recipients (n=1,233)(2008–2020).

Item S1. Missing Data

Table S1. Associations between Medical Distrust and Advanced Care Planning (ACP) and Palliative Care Consultation (PCC) Among White and Black kidney transplant candidates (n=275) and recipients (n=95).

Table S2: Associations between patient characteristics and advance care planning among White and Black kidney transplant candidates and recipients.

Table S3. Effect Modifiers of the Association between Race and Ethnicity and Advance Care Planning Among White and Black Kidney Transplant Candidates.

Table S4. Effect Modifiers of the Association between Race and Ethnicity and Advance Care Planning Among White and Black Kidney Transplant Recipients.

Table S5: Associations between patient characteristics and palliative care consultation among White and Black kidney transplant candidates and recipients.

Table S6. Effect Modifiers of the Association between Race and Ethnicity and Palliative Care Consultation Among White and Black Kidney Transplant Candidates.

Table S7. Effect Modifiers of the Association between Race and Ethnicity and Palliative Care Consultation Among White and Black Kidney Transplant Recipients by Patient Characteristics.

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