Associations of Specialist Palliative Care and Advance Care Planning with End-of-Life Outcomes in Kidney Transplant Recipients: A Single-Center Retrospective Study in Spain

Abstract

Background:

Evidence on specialist palliative care and advance care planning (ACP) for kidney transplant recipients (KTRs) near the end-of-life remains limited.

Methods:

We conducted a single-center retrospective observational study (electronic health record chart review) at a tertiary transplant center in Madrid, Spain. We included adult KTRs who died between January 1, 2021, and December 31, 2023, with sufficient end-of-life documentation; SARS-CoV-2-related deaths and deaths outside health care settings or with insufficient records were excluded. We compared end-of-life outcomes by specialist palliative care (PC) involvement and by ACP category. Outcomes included documented symptoms within 5 days before death, documented moderate-to-severe suffering within 48 hours (based on narrative chart descriptors), documented intent to prioritize symptom control in the last 24 hours, aggressive treatments within 7 days (intensive care unit/intermediate respiratory care unit admission, surgery/percutaneous intervention, renal replacement therapy, and/or intensive in-hospital management), place of death, and documented family positive perception of end-of-life care.

Results:

Fifty-nine deceased KTRs were analyzed; 20 (33.9%) received PC, and 39 (66.1%) did not. Compared with no PC, PC involvement was associated with a lower prevalence of documented symptoms within 5 days before death (5/20 [25.0%] vs. 38/39 [97.4%]; p < 0.001), documented moderate-to-severe suffering within 48 hours (0/20 [0%] vs. 36/39 [92.3%]; p < 0.001), and a higher documented intent to prioritize symptom control in the last 24 hours (20/20 [100%] vs. 22/39 [56.4%]; p < 0.001). PC involvement was also associated with fewer deaths in high-acuity settings and more home or hospice deaths (p < 0.001). Across ACP categories, comprehensive ACP was associated with fewer documented symptoms within 5 days (1/9 [11.1%] vs. 18/18 [100%] with no ACP; p < 0.001) and no documented moderate-to-severe suffering within 48 hours (0/9 [0%] vs. 18/18 [100%] with no ACP; p < 0.001).

Conclusions:

In this single-center retrospective study, PC involvement and more comprehensive ACP were associated with more favorable end-of-life outcomes among KTRs. Prospective studies are needed to confirm these associations.

Keywords

advance care planning end-of-life care kidney transplant recipients palliative care symptom assessment

Introduction

Palliative care (PC) is an interdisciplinary approach aimed at improving quality of life for patients with serious illness by addressing physical symptoms, psychological distress, social needs, and spiritual concerns, while supporting families and clinicians in complex decision making.^1–3 Across serious illnesses, specialist PC interventions have been associated with improved quality of life and symptom burden and, in some settings, with reduced health care utilization.^1,2 Importantly, high-quality end-of-life care (EOLC) is a relevant goal not only in oncology but also across nonmalignant serious illness trajectories, where symptom burden and unmet needs may be comparable.^4–6

Advanced chronic diseases are frequently accompanied by high levels of fatigue, pain, breathlessness, depression, anxiety, and overall distress.^4–7 In particular, chronic kidney disease (CKD) is prevalent and often progressive, with substantial multimorbidity and symptom burden.⁸ Patients with advanced kidney disease may experience symptom profiles and quality-of-life impairment similar to those of patients with advanced cancer.⁷ Contemporary kidney supportive care frameworks emphasize integrating symptom management, serious illness communication, and advance care planning (ACP) across the continuum of advanced kidney disease, rather than limiting these services to the last days of life.^9,10 The Kidney Disease: Improving Global Outcomes (KDIGO) supportive care roadmap also highlights the importance of systematic approaches to communication, symptom assessment, shared decision making, and care coordination for people with advanced CKD.¹⁰ Consistent with this, the kidney supportive care core curriculum and implementation-focused literature underscore the need to embed supportive/PC competencies into routine nephrology practice.^11,12

Kidney transplant recipients (KTRs) represent a population with unique supportive care needs. Although transplantation improves survival and quality of life relative to dialysis for many patients, KTRs may still experience complex comorbid illness, recurrent hospitalizations, and burdensome symptoms—particularly near the end of life.^8,13–16 EOLC patterns among people with kidney failure who are wait-listed for, or receive, kidney transplantation may include high-intensity interventions in the last months of life, underscoring the importance of goal-concordant decision making and supportive care integration.¹⁶ In solid organ transplantation, multiple publications emphasize that PC remains underutilized and is often introduced late, despite frequent symptom burden and challenging decisions.^13–15 Transplant clinicians also report barriers to integrating PC, including prognostic uncertainty, concerns about mixed messaging, and misconceptions that PC is incompatible with transplant-oriented care.^17,18

ACP is a structured process that helps patients clarify values and preferences, identify surrogate decision-makers, and communicate goals for future care; it is increasingly considered a core component of high-quality serious illness care.^19–22 Best-practice communication approaches for serious illness emphasize early, iterative conversations that align medical decisions with patient priorities and reduce decisional burden for families during acute deterioration.^21,22 In kidney disease specifically, ACP has been framed as an evolving, longitudinal process that should be adapted to changing health status and decision points.^23–26 Nevertheless, access to specialist PC remains uneven, and even when PC is available, referrals may occur late in the disease course.²⁰

Despite growing interest in integrating PC and ACP into transplant and nephrology practice, evidence focused on end-of-life outcomes among KTRs remains limited, and most existing literature has centered on patients with failing allografts or specific health system contexts.^15,18 Recent population-level work also suggests variability in ACP and PC engagement among KTRs, reinforcing the need for better evidence to inform implementation strategies.^13,18

Therefore, we aimed to examine the associations of specialist PC involvement and ACP with end-of-life outcomes among KTRs in a single-center retrospective cohort in Spain.

Materials and Methods

Study population and design

We conducted a single-center retrospective observational study based on electronic health record (EHR) chart review at a tertiary referral transplant center in Madrid, Spain. We identified KTRs who died between January 1, 2021, and December 31, 2023, within our health area, and the EHR system had sufficient documentation to ascertain end-of-life outcomes. We excluded SARS-CoV-2-related deaths, deaths occurring outside health care settings, and deaths with insufficient documentation for the prespecified end-of-life variables (Fig. 1).

FIG. 1.

Flowchart of kidney transplant recipient (KTR) deaths included in the study (January 1, 2021, to December 31, 2023). Of 107 deaths, 59 met the inclusion criteria. Exclusions included SARS-CoV-2-related deaths (n = 21), deaths outside health care settings (n = 4), and deaths with insufficient documentation to ascertain end-of-life outcomes (n = 23).

PC service context and exposure definition

During the study period, our institution provided specialist PC as an interdisciplinary consultation service integrated with hospital teams, including transplant nephrology. Formal protocols for EOLC in KTRs were not standardized until 2023²⁴; from 2023 onward, a more interdisciplinary approach involving transplant nephrology and specialist PC focused on comfort and goal-concordant care when clinically appropriate. This evolution in practice during 2023 is provided for context; the study was not designed as a pre-/post-intervention analysis, and outcomes were abstracted using the same chart review approach across 2021–2023.

Specialist PC involvement was defined as at least one documented consultation by the specialist PC team during the end-of-life period (inpatient and/or outpatient), or a palliative approach documented by transplant nephrologists with formal post-graduate PC training, defined as completion of the official Specialist Master’s program in PC, together with a full clinical rotation and practical work experience in specialist PC. Given the retrospective documentation, PC involvement was ascertained as a binary exposure (yes/no), and the number or intensity of encounters could not be reliably quantified.

ACP definitions and categorization

ACP was defined as any documented conversation and/or plan addressing goals of care, limitation of life-sustaining treatment, prioritization of comfort-focused care, preferred location of care/death when feasible, and/or consideration of palliative sedation when symptom control was insufficient.^19,23–26 Based on EHR documentation, ACP was classified into four mutually exclusive categories: 1.

None: no documented goals-of-care/ACP discussion with the patient or family/surrogate.

Family-only ACP: documented goals-of-care/ACP discussion with family/surrogate without patient participation, typically due to lack of decision-making capacity or clinical inability to participate.

Partial ACP (patient ± family): documented patient-involved ACP discussion that addressed selected topics (e.g., limitation of therapeutic effort [LTE], prioritizing comfort over life-prolonging interventions, renal replacement therapy decisions, or consideration of palliative sedation) but did not cover the broader spectrum of end-of-life decisions.

Comprehensive ACP: documentation addressing multiple domains of end-of-life decision making, including acceptance/rejection of potentially aggressive measures (e.g., resuscitation, intensive care unit [ICU] admission, endotracheal intubation), preferred location of care/death when feasible, and explicit consideration of palliative sedation, typically with formal documentation and review as clinical status evolved.^19,23–26

ACP discussions could be initiated by transplant nephrology team members with formal PC training and/or specialist PC clinicians. ACP category assignment was based on explicit chart documentation and was adjudicated by consensus when documentation was ambiguous.^11,12,17,18

Timing variables

ACP time was defined as the interval (days) from the earliest documented initiation of ACP/goals-of-care planning (with the patient and/or family/surrogate) to death. For interpretability, we additionally examined two timing thresholds describing planning outside the final days of life: ACP initiation >48 hours before death and ≥7 days before death.^23–26

Outcomes and operational definitions

We prespecified end-of-life outcomes reflecting symptom experience, care intensity, and documented family experience, drawing on established domains in serious illness care quality measurement^27–31: 1.

Symptoms within 5 days before death: presence of documented symptoms during the last 5 days of life.

Documented suffering within 48 hours before death: categorized as none, moderate, or intense, as described below.

Documented intent to prioritize symptom control in the last 24 hours (comfort-focused intent rather than disease-directed escalation).

Aggressive interventions within 7 days before death: ICU/intermediate respiratory care unit (IRCU) admission; surgery and/or percutaneous intervention; initiation of renal replacement therapy; and/or intensive in-hospital management (Hospitalization+), defined as active inpatient management involving more than two diagnostic and/or therapeutic measures (computed tomography scan, bronchoscopy, colonoscopy, daily blood work, intravenous antibiotic therapy, and/or central venous line insertion).

Place of death: categorized as home/community, PC center/hospice, hospital ward, or high-acuity hospital setting (ICU/IRCU/emergency department).

Family positive perception: explicit documentation in the EHR of family expressions of gratitude or positive evaluation of EOLC (e.g., appreciation of communication, comfort-focused care, or perceived peacefulness).

Symptom assessment and grading of suffering

Symptoms and suffering were assessed retrospectively based on daily narrative clinical documentation recorded in the EHR by nurses, nursing assistants, and responsible physicians. Because standardized symptom scales were not routinely documented,^32,33 narrative descriptors were interpreted and graded using a Numeric Rating Scale (NRS) equivalent framework,^33,34 adapted to reflect global symptom burden and suffering. Specifically, qualitative descriptors documented in the medical records were mapped to three levels of symptom burden, corresponding to increasing degrees of suffering:

Optimal symptom control (NRS-equivalent 0–3): when documentation included terms such as “good control,” “excellent symptom control,” “asymptomatic,” “comfortable,” “no signs of suffering,” or equivalent expressions.

Moderate suffering (NRS-equivalent 4–6): when terms such as “moderate,” “medium,” “partial control,” “fair control,” or similar descriptors were used.

Intense suffering (NRS-equivalent 7–10): when documentation included terms such as “intense,” “severe,” “unbearable,” “unacceptable,” “disproportionate,” “refractory,” or comparable expressions indicating poor symptom control despite treatment.

Palliative sedation

When palliative sedation was documented, we extracted indication(s) and timing during the last 24 hours of life. Conceptual framing of palliative sedation followed contemporary consensus-based guidance emphasizing proportionality, refractoriness, and careful documentation in imminently dying patients.^35,36

Degree of control over the dying process

Degree of control over the dying process was defined as the extent to which the patient, family, and clinical team were able to anticipate, plan, and manage the dying trajectory and symptom burden, based on explicit EHR documentation of expectedness of death, goals-of-care discussions, LTE, and symptom management decisions.^27,37 Each death was classified into one of three mutually exclusive categories: 1.

No control: assigned when death was documented as unexpected and life-prolonging or aggressive therapeutic measures were continued until very near death, with inadequate or absent symptom management documentation. In these cases, there was limited opportunity for ACP or documented alignment of care with patient values.

Intermediate control: assigned when death was not initially expected, but a rapid transition to comfort-focused care was documented during an acute deterioration, often based on family and clinical team consensus and frequently without the patient’s direct input due to clinical condition or lack of decision-making capacity. Symptom control was prioritized in the final days, although advance directives or documented patient preferences were incomplete or absent.

Absolute control: assigned when prognosis and goals of care were clearly documented, ACP had been completed, and the care plan reflected agreement to prioritize comfort over life-prolonging interventions.

Classification was based on explicit chart documentation regarding expectedness of death, presence of goals-of-care discussions, LTE, and recorded symptom management decisions.

Chart abstraction

Data were abstracted from the EHR using a standardized data extraction template by two investigators (B.R.C. and A.V.), who independently reviewed all charts. Discrepancies were resolved by consensus; when consensus could not be reached, a third investigator adjudicated (M.M.). Third-reviewer adjudication was required in approximately 10% of cases.

Statistical analysis

Categorical variables are presented as counts and percentages, and continuous variables are presented as medians with interquartile ranges (IQRs). Nonparametric tests were used to compare distributions. Group comparisons were performed using χ² or Fisher’s exact tests for categorical variables and Mann–Whitney U or Kruskal–Wallis tests for continuous variables, as appropriate. Statistical analyses were performed using IBM SPSS Statistics for Windows, Version 25.0 (IBM Corp., Armonk, NY).

Results

Of 107 KTR deaths between January 1, 2021, and December 31, 2023, 59 met the inclusion criteria (Fig. 1). Exclusions included SARS-CoV-2-related deaths (n = 21), deaths occurring outside health care settings (n = 4), and deaths with insufficient documentation to ascertain end-of-life outcomes (n = 23).

Among the 59 deceased individuals, the average age was 78.5 years (IQR: 75.2–85.25), with 37.3% females. Median transplant-to-death duration was 11.46 years (IQR: 7.82–20.48). Most patients (96.6%) had preexisting end-stage disease, most commonly multimorbidity (30.5%), advanced cancer (23.7%), end-stage cardiovascular disease (13.6%), and end-stage neurological disease or dementia (22%). The Necesidades Paliativas, a palliative care needs identification tool (NECPAL) categorized all as having high supportive care needs. Causes of death included infection (33.9%), neoplasia (22.0%), and cardiovascular disease (18.6%). In 18.6% of cases, no aggressive diagnostic techniques were performed due to comorbid conditions. Two patients had no known serious preexisting disease; one died of massive cerebral hemorrhage and one after existential distress (suicide attempt) following renal graft loss (Table 1).

Table 1.

End-of-Life Outcomes: Intervention of Palliative Care

End-of-life outcomes in kidney transplant recipients (n = 59)	All patients (n = 59)	No palliative care intervention 39 (66.1)	Palliative care intervention20 (33.9)	p
Basal characteristics
Female genre, n (%)	22 (37.3)	12 (30.8)	10 (50)	0.163
Age, median (IQR)	78.5 (75.25–85.25)	77 (66–82)	76 (68.5–82.25)	0.750
Transplant time, years, median (IQR)	11.46 (7.82–20.48)	14.21 (7.84–22.59)	9.63 (7.7–18.70)	0.200
High needs for support care^a	56 (94.9)	37 (94.9)	19 (95)	0.737
Terminal disease, n (%)
Cardiovascular	8 (13.6)	6 (15.4)	2 (10)	0.576
Neoplasia	14 (23.7)	10 (25.6)	4 (20)
Neurological/dementia	13 (22)	7 (17.9)	6 (30)
Pulmonary	4 (6.8)	4 (10.3)	0
Comorbidity^b	18 (30.5)	11 (28.2)	7 (35)
None	2 (3.4)	1 (2.6)	1 (5)
End-of-life outcomes
Death cause
Cardiovascular	11 (18.69)	7 (17.9)	4 (21.1)	<0.001
Neoplasia	13 (22)	10 (25.6)	3 (15.8)
Sudden death	3 (5.1)	3 (7.7)	0
Infection	20 (33.9)	18 (46.2)	2 (10.5)
Comorbidity/LTE	11 (18.6)	1 (2.6)	10 (52.6)
Control on dying process
Absolute	19 (32.2)	2 (5.1)	17 (85)	<0.001
Intermediate	27 (45.8)	24 (61.6)	3 (15)
No control	13 (22)	13 (33.3)	0
Symptoms <5 days
Yes	43 (72.9)	38 (97.4)	5 (25)	<0.001
Symptoms type
Dyspnea	20 (33.9)	17 (42.7)	3 (16.7)	<0.001
Agitation	6 (10.2)	4 (11.1)	2 (11.1)
Pain	9 (15.3)	8 (22.2)	1 (5.6)
Anxiety	3 (5.1)	1 (2.8)	2 (11.1)
Suffering grade pre death (<48 hours)
None	23 (39)	3 (7.7)	20 (100)	<0.001
Moderate	20 (33.9)	19 (48.7)	0
Important	16 (27.1)	17 (43.6)	0
Intention to prior symptoms
Yes	42 (71.2)	22 (56.4)	20 (100)	<0.001
Last aggressive treatments (<7 days)
Yes (total)	27 (45.8)	24 (61.1)	3 (15)	<0.001
ICU/IRCU	3 (5.1)/5 (8.5)	3 (7.7)/5 (12.8)	0	0.018
Surgery/percutaneous	3 (5.1)/2 (3.4)	3 (7.7)/2 (5.1)	0
Hospitalization+^c	11 (18.64)	22 (56.4)	2 (10)
RRT	4 (6.8)	2 (5.1)	2 (10)
Last rejection treatments
ICU/IRCU	20 (33.9)/4 (6.8)	20 (51.3)/4 (10.3)	0	<0.001
Surgery/oncology treatment	7 (11.9)/2 (3.4)	6 (15.4)/1 (2.6)	1 (5.4)/1 (5)
RRT	5 (8.5)	1 (2.6)	4 (20)
New rehospitalization	5 (8.5)	0	5 (25)
Nasogastric tube/ATB	4 (6.8)/4 (6.8)	0	4 (20)/4 (20)
ACP time	—	2 days (0–2.75)	9 days (6–31)
Palliative sedation
Yes	35 (59.32)	21 (88)	13 (75.8)	0.226
Palliative sedation causes
Dyspnoea	20 (33.9)	14 (56)	6 (35)
Pain	6 (10.2)	3 (12)	3 (17.6)
Anxiety	5 (8.5)	2 (8)	3 (17.6)
Agitation or delirium	4 (6.8)	3 (12)	1 (5.9)
Death place
Home/palliative center	5 (8.5)/5 (8.5)	0	5 (25)/5 (25)	<0.001
Hospitalization ward	37 (62.7)	27 (69.2)	10 (50)
ICU/IRCU/emergency room	3/4/5 (5.1)/(8.5)/(6.8)	3 (7.7)/4 (10.3)/5 (12.8)	0
Family positive perception
Yes	9 (15.3)	0	9 (45)	<0.001

High needs for support care according to NECPAL tool.³⁸

Comorbidities: heart disease, lung disease, cirrhosis, cognitive impairment.

Hospitalization+ involves active treatment that includes more than two of these diagnostic and/or therapeutic measures (computed tomography scan, bronchoscopy, colonoscopy, daily blood work, intravenous antibiotic therapy, central line insertion); family positive perception: explicit documentation of family expressions of gratitude or positive evaluation of end-of-life care.

ACP, advance care planning; ATB, antibiotic therapy; ICU, intensive care unit; IQR, interquartile range; IRCU, intermediate respiratory care unit; KRT, renal replacement treatment; LTE, limitation of therapeutic effort.

Overall end-of-life outcomes

Table 1 summarizes the main EOLC outcomes. Symptoms were documented in 72.9% (n = 43) of patients within five days before death. Within the last 48 hours, 61.0% had documented suffering, including 33.9% moderate and 27.1% intense suffering. Predominant symptoms included dyspnea (33.9%), pain (15.3%), agitation or delirium (10.2%), and anxiety (5.1%); 84.7% had more than one symptom. Documented intent to prioritize symptom control within the last 24 hours was present in 71.2% of patients.

In the last seven days of life, 45.8% of patients (n = 27) received at least one aggressive intervention, including ICU admission (5.1%, n = 3), IRCU admission (8.5%, n = 5), surgery or percutaneous intervention (8.5%), and initiation of renal replacement therapy (6.8%, n = 4). In addition, 18.6% (n = 11) met criteria for Hospitalization+ (Table 1). Antibiotics were administered to 66.1% (n = 39) of patients as the final intervention before death. In 88.1% of cases (n = 52), further invasive procedures were withheld due to perceived nonbeneficial intent and/or disproportionate burden (Table 1).

Regarding the degree of control over the dying process, only 32.2% of deaths (n = 19) met criteria for absolute control, with documented goals-of-care discussions and pre-agreed comfort-focused measures. A further 45.8% (n = 27) met criteria for intermediate control, reflecting a late transition to comfort-focused care during acute deterioration, typically agreed with the family and clinical team, with symptom management prioritized in the final hours. The remaining 22.0% (n = 13) were classified as no control, characterized by limited documented opportunity to implement symptom-focused care prior to death and/or lack of prioritized comfort measures.

Palliative sedation was administered to 59.3% of patients (n = 35) for symptom control within the last 24 hours, most commonly for dyspnea (33.9%), pain (10.2%), agitation or delirium (6.8%), and anxiety (8.5%) (Table 1). Most patients died in hospital wards (62.7%, n = 37), while 20.4% died in high-acuity settings (ICU/IRCU/emergency department). A minority died outside the hospital (home with PC support or in a specialized PC center) (Table 1). Documented family positive perception was present in 15.3% of cases (Table 1).

Based on these findings, we performed additional analyses to examine the associations of specialist PC involvement and ACP with end-of-life outcomes.

Associations of PC involvement with end-of-life outcomes

Table 1 compares outcomes for the total sample and distinguishes between patients who received specialist PC (n = 20, 33.9%) and those who did not (no PC, n = 39, 66.1%). Baseline characteristics did not differ significantly between groups; 95% of patients in both groups were suitable for conservative management due to comorbidities, age, or terminal illness. Referral to PC varied by cause of death, being most frequent among deaths attributed to multimorbidity (52.6%) and least frequent among infection-related deaths (10.5%). Only 10% of patients with metastatic neoplasia were referred for PC, and no patients with end-stage lung disease received specialist PC. These differences likely reflect referral patterns varied by cause of death, with lower PC involvement among infection-related deaths or end-stage lung disease, compared with more predictable trajectories.

Compared with no PC, PC involvement was associated with fewer documented symptoms within 5 days before death (25.0% vs. 97.4%), a higher proportion of patients with no documented suffering within 48 hours (100% vs. 7.7%), and a higher documented intent to prioritize symptom control in the last 24 hours (100% vs. 56.4%) (all p < 0.001) (Table 1). PC involvement was also associated with lower rates of aggressive treatments in the last 7 days and more frequent documented refusal of nonbeneficial interventions (Table 1). In addition, PC recipients had a higher proportion of deaths at home or in a PC center (25% vs. 0%), whereas deaths in high-acuity settings (ICU/IRCU/emergency department) occurred more frequently in the no PC group (30.8% vs. 0%) (Table 1). Finally, documented family positive perception was more frequent among PC recipients (45% vs. 0%) (Table 1).

The association of ACP on EOLC outcomes

ACP interventions were classified into four mutually exclusive categories: none (30.5%, n = 18), family-only ACP (44.1%, n = 26), partial ACP (patient with or without family involvement; 10.2%, n = 6), and comprehensive ACP (15.3%, n = 9) (Table 2). Frequently discussed topics included LTE (33.9%, n = 20), prioritizing comfort measures over life-prolonging interventions (15.3%, n = 9), and the possibility of palliative sedation when symptom control was insufficient (20.3%, n = 12). Time from ACP discussion to death differed across categories (family-only: median 2 days; partial ACP: median 7 days; comprehensive ACP: median 38 days; p < 0.001) (Table 2).

Table 2.

End-of-Life Outcomes: Advance Care Planning

End-of-life outcomes in renal transplant recipients (n = 59)Advance care planning	NoneN = 18 (30.5)	Family-only conversationN = 26 (44.1%)	Partial conversation (patient ± family)N = 6 (10.2%)	Comprehensive ACP (patient)N = 9 (15.3%)	p
Time ACP, days, median (IQR)	—	2 (0–4)	7 (5–21)	38 (21–274)	<0.001
Discussed ACP topics, n (%)
Comfort/sedation	N/A	20 (76.9)	1 (16.7)	0	<0.001
LTE	N/A	6 (23)	5 (83.3)	9 (100)	<0.001
Basal characteristics
Female genre, n (%)	5 (27.8)	9 (34.6)	1 (16.7)	7 (77.8)	0.043
Age, median (IQR)	78.5 (67–85)	76.5 (63.7–81.2)	69 (62.5–77.7)	76 (73–82)	0.462
Transplant time, years, median (IQR)	14.98 (9.20–23.7)	15.28 (9.06–19.2)	8.64 (4.99–20.22)	8.11 (5.86–18.25)	0.414
High needs for support care^a	16 (88.9)	26 (100)	5 (83.3)	9 (100)	0.179
Terminal disease, n (%)
Cardiovascular	3 (16.7)	3 (11.5)	2 (33.3)	0	0.231
Neoplasia	3 (16.7)	7 (26)	1 (16.7)	3 (33.3)
Neurological/dementia	1 (5.6)	9 (34.6)	1 (16.7)	2 (22)
Pulmonary	3 (16.7)	1 (3.8)	0	0
Comorbidity^b	7 (38.9)	6 (23.1)	1 (16.7)	4 (44.4)
None	1 (5.6)	0	1 (16.7)	0
End-of-life outcomes
Death cause
Cardiovascular	4 (22.2)	4 (15)	1 (20)	2 (22.2)	0.038
Neoplasia	3 (16.7)	7 (26.9)	1 (20)	2 (22.2)
Sudden death	3 (16.7)	0	0	0
Infection	7 (38.9)	12 (46.2)	1 (20)	0
Comorbidity/LTE	1 (5.6)	3 (11.5)	2 (40)	5 (55.6)
Control on dying process
Absolute	0	6 (23.1)	4 (66.7)	9 (100)	<0.001
Intermediate	5 (27.8)	20 (76.9)	2 (33.4)	0
No control	13 (72.2)	0	0	0
Symptoms <5 days
Yes	18 (100)	21 (80.8)	3 (50)	1 (11.1)	<0.001
Main symptom
Dyspnea	10 (62.5)	7 (30.4)	1 (16.7)	0	0.006
Agitation	0	5 (21.7)	2 (33.3)	0
Pain	3 (18.8)	5 (21.7)	0	0
Anxiety	0	1 (4.3)	1 (16.7)	1 (11.1)
Suffering grade pre death (<48 hours)
None	0	8 (30.8)	6 (100)	9 (100)	<0.001
Moderate	10 (55.6)	9 (34.6)	0	0
Important	8 (44.4)	9 (34.6)	0	0
Intention to prior symptoms
Yes	3 (16.7)	24 (92.3)	6 (100)	9 (100)	<0.001
Aggressive treatments (<7 days)
Yes (total)	11 (61.1)	13 (50)	2 (33.3)	1 (11.1)	0.085
ICU/IRCU	1 (5.6)/2 (7.7)	2 (7.7)/3 (11.5)	0	0	0.037
Surgery/percutaneous	2 (11)/0	1 (3.8)/2 (7.7)	0	0/1 (0/11.1)
Hospitalization+^c	11 (61.1)	16 (65.1)	1 (16.7)	1 (11.1)
RRT	2 (11)	0	2 (33.3)	0
Last rejection treatments
ICU/IRCU	8 (44.4)/3 (16.7)	12 (46.2)/1 (3.8)	0	0	<0.001
Surgery/oncology treatment	2 (11.1)/0	4 (15.4)/0	0/2 (33.3)	0
RRT	0	2 (7.7)	2 (33.3)	1 (11.1)
New rehospitalization	0	3 (11.5)	0	2 (22.2)
Nasogastric tube/ATB	0	2 (7.7)/0	0/1 (16.7)	2 (22.2)/4 (44.4)
Death place
Home/palliative center	0	1 (3.8)/2 (7.7)	0/1 (16.7)	4 (44.4)/2 (22.2)	0.035
Hospitalization ward	13 (72.2)	16 (61.5)	5 (83.3)	3 (33)
ICU/IRCU/emergency room	1 (5.6)/2 (11.1)/2 (11.1)	2 (7.7)/2 (7.7)/3 (11.5)	0	0
Family positive perception
Yes	0	2 (7.7)	2 (33.3)	5 (55.6)	0.003

High needs for support care according to NECPAL tool.³⁸

Comorbidities: heart disease, lung disease, cirrhosis, cognitive impairment.

N/A, not available.

Comparisons across ACP groups showed significant differences in end-of-life symptom burden and suffering. Patients with more comprehensive planning had fewer documented symptoms within 5 days before death (0–11%) compared with those without any planning (100%) (p < 0.001). Patients without an EOLC plan had higher documented suffering within 48 hours before death (44.4% intense, 55.6% moderate) than those with comfort-focused measures at least discussed with the family (34.6% intense, 34.6% moderate), whereas patients with comprehensive ACP had no documented suffering (0%) (p < 0.001). Patients with more comprehensive planning also had fewer specific symptoms before death; for example, anxiety was documented in 11.1%, whereas among patients without planning, dyspnea was documented in 62%, pain in 21.7%, and agitation in 21.7% (p < 0.001). Increasing levels of planning were associated with greater documented control over the dying process (0% vs. 23.1% vs. 66.7% vs. 100%, p < 0.001) (Table 2).

Across ACP categories, more comprehensive planning was associated with progressively lower rates of documented symptoms and documented moderate-to-severe suffering near death, greater documented control over the dying process, less-frequent aggressive interventions, more frequent documented rejection of nonbeneficial treatments, and more deaths occurring outside high-acuity hospital settings (Table 2).

Discussion

In this single-center retrospective study of KTRs who died between 2021 and 2023 in Spain, we found a high burden of symptoms and documented suffering near the end of life. Specialist PC involvement and more comprehensive ACP were consistently associated with more favorable end-of-life outcomes, including fewer symptoms in the last days of life, less documented suffering in the final 48 hours, lower use of aggressive interventions, fewer deaths in high-acuity hospital settings, and more frequent documentation of family positive perception of EOLC.

Our findings are consistent with the broader PC literature, indicating that timely, interdisciplinary PC is associated with improved patient-centered outcomes and reduced aggressive EOLC across serious illnesses.^1–3 Prior work also demonstrates that EOLC quality and intensity vary across serious illnesses, and that high-intensity care near death remains common in some trajectories.^4,30,31 Kidney disease is a prototypical condition in which symptom burden is substantial and longitudinal decision making is frequent; supportive care frameworks explicitly recommend integrating PC principles across the continuum rather than confining them to the terminal phase.^9–12 The KDIGO supportive care roadmap emphasizes systematic approaches to symptom monitoring, shared decision making, and care coordination—components that directly map to the domains in which we observed differences by PC involvement and ACP depth.¹⁰

Despite these frameworks, integration of PC into transplant practice remains challenging. Solid organ transplantation literature highlights late or inconsistent PC involvement, prognostic uncertainty, and clinician concerns about mixed messages as barriers.^{13–15,17,18} Recent work among kidney transplant clinicians in the United States suggests that perceptions of PC, uncertainty around transplant trajectories, and structural limitations influence referral patterns, particularly for patients with failing allografts.^17,18 Population-level analyses also suggest variability in ACP and PC engagement among KTRs, reinforcing the need for implementation strategies tailored to transplant settings.¹⁸ In this context, our results extend prior literature by describing end-of-life outcomes in a European transplant center and by demonstrating that both specialist PC involvement and ACP completeness are associated with outcomes that matter to patients and families.

ACP showed particularly strong associations with symptom outcomes in our cohort. ACP is increasingly conceptualized as a longitudinal process rather than a one-time document, requiring iterative conversations, documentation, and revisiting preferences as illness evolves.^19,23–26 Communication best practices in serious illness emphasize early, values-based conversations that reduce decisional burden during acute deterioration and facilitate goal-concordant care.^21,22 In our data, longer time from ACP initiation to death was associated with less documented suffering and improved symptom control, suggesting that initiating ACP outside the final days of life may provide practical benefit—allowing time for clearer communication, anticipatory prescribing, and coordinated care planning. We also observed that PC involvement varied by cause of death, with lower PC involvement among infection-related deaths compared with more predictable trajectories. This likely reflects timing and context of deterioration rather than uniform referral criteria, and it underscores a key challenge in nephrology and transplant care: acute deteriorations may limit opportunities for anticipatory discussions and symptom-focused planning. This finding supports the need for systematic triggers and standardized workflows to identify high-risk patients earlier.^7,9

Limitations

This study has limitations inherent to its retrospective design, single-center setting, and modest sample size. Symptom severity and suffering were derived from narrative documentation rather than standardized patient-reported measures,^{27–29,32,33} which may introduce documentation bias, inter-observer variability, and misclassification. To mitigate this risk, all charts were independently reviewed by two investigators using a standardized extraction template, with third-reviewer adjudication for unresolved discrepancies (∼10%). In addition, interdisciplinary workflows at our center evolved during 2023, which may have influenced referral patterns and documentation practices; the study was not designed or powered to conduct stratified pre-/post-comparisons.

Our analyses are susceptible to selection bias and confounding by indication: PC involvement and ACP were not randomly assigned and may have been more likely in patients with a more predictable decline, while acute deterioration (e.g., infection-related deaths) may have limited opportunities for referral or planning. Therefore, observed associations should be interpreted cautiously and not as causal. In addition, comprehensive ACP was present in a small number of patients (n = 9), limiting precision and increasing the risk of model instability; these findings should be considered hypothesis generating and require confirmation in larger prospective multicenter studies. Finally, because PC involvement and ACP are partially overlapping processes in real-world practice, the depth and content of ACP may vary by documenting team and may be incompletely captured in the medical record.

Implications

Despite limitations, to the best of our knowledge, this is among the first studies to report detailed end-of-life outcomes and their associations with specialist PC involvement and ACP completeness in KTRs within a transplant program in Spain. Our findings support embedding structured symptom monitoring and serious-illness communication workflows in transplant nephrology, consistent with kidney supportive care frameworks.^9–12 Standardized documentation and validated outcome measures could further strengthen symptom assessment and facilitate goal-concordant care near the end of life.

Conclusions

Among KTRs in a tertiary transplant center in Spain, specialist PC involvement and more comprehensive ACP were associated with more favorable end-of-life outcomes, including fewer symptoms and less documented suffering near death, fewer aggressive interventions, and fewer deaths in high-acuity hospital settings. Prospective multicenter studies are needed to confirm these associations and guide implementation strategies tailored to transplant populations.

Authors’ Contributions

B.R.C., A.V., M.A.M.d.l.H., N.R., A.A., I.P.F., M.R.P., and R.F.D. contributed to the design and implementation of the research. B.R.C. contributed to the analysis of the results and drafted the article. A.I.S.F. conceived and supervised the project. All authors reviewed and approved the final article.

Footnotes

Ethical Approval and Consent to Participate

The Ethics Committee of the study institution approved the study (Internal code: 24/030-E). As this was a retrospective study with minimal risk, informed consent was waived by the Ethics Committee.

Availability of Data and Materials

The dataset is not publicly available due to privacy and institutional restrictions; it is available from the corresponding author upon reasonable request.

Author Disclosure Statement

The authors declare no competing interests.

Funding Information

The authors would like to acknowledge the Fundación para la Investigación Biomédica del Hospital Clínico San Carlos (IdISSC) for its support of this work and its publication. The authors also acknowledge the Working Group on Renal Supportive Care and Palliative Care of the Spanish Society of Nephrology/Spanish Society of Palliative Care for its support of this work.

Abbreviations used

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