ABSTRACT
Background
Advance care planning enables adults to express their goals and preferences for future care. Advance care planning has been widely recognised in oncology and palliative care for decades, but its use in kidney care is variable.
Objective
To examine interventions that promote advance care planning among adults with chronic kidney disease, including those receiving kidney replacement therapy.
Design
Systematic review.
Method
A comprehensive search was conducted in six databases: PubMed, MEDLINE, CINAHL, PsycINFO, Scopus, and Embase. Studies published from databases inception to September 2024 were included. Two independent reviewers identified studies for full‐text review and data extraction. Methodological quality was assessed using the Mixed Methods Appraisal Tool. The review protocol was registered in PROSPERO (CRD42024589958).
Results
Twenty‐seven studies were included: 22 were quantitative (10 randomised and 12 non‐randomised), three were qualitative, and two were mixed‐methods designs. Most studies were conducted in the United States of America. Five main strategies to promote advance care planning uptake and improve outcomes were educating and training kidney healthcare professionals; implementing advance care planning conversations; providing educational resources; offering peer facilitators; and integrating palliative care teams. The synthesis of qualitative findings indicated that advance care planning discussions instilled hopefulness about the future and did not induce anxiety.
Conclusion
Advance care planning conversations combined with educational resources and peer support facilitators are likely to improve rates of advance care planning completions in this population, although further evidence is needed. Kidney healthcare professionals should be trained to initiate these conversations with all patients.
Keywords: advance care planning, advance directives, chronic kidney disease, kidney replacement therapy, shared‐decision making
1. Introduction
Adults with chronic kidney disease (CKD) frequently experience a high symptom burden, which leads to reduced quality of life (Almutary et al. 2016; Yapa et al. 2020) and have a higher mortality rate compared to the general population (Bello et al. 2022). These consequences highlight the importance of advance care planning (ACP) in complementing kidney care for adults with CKD.
ACP is a voluntary process, the purpose of which is to encourage discussions that assist individuals in expressing their goals of care, values, and treatment preferences to family members and healthcare professionals (Rietjens et al. 2021). Discussions also help individuals in identifying a trusted person to act as their surrogate decision‐maker or healthcare proxy, who will make decisions on their behalf in the event of incapacity (Sedini et al. 2022; Sudore et al. 2017). ACP should be iterative rather than a single event, as clarifying goals and priorities can be challenging and require regular updates as symptoms or illness status change over time (Rietjens et al. 2021; Robinson and Paes 2025).
ACP is largely based on discussions between the individual, healthcare professional, and family members, while the completion of ACP documents remains optional but is recommended (Rietjens et al. 2021; Sudore et al. 2017). These documents, however, have an important role in guiding healthcare professionals and surrogate decision‐makers to ensure that healthcare aligns with the individual's preferences when the individual is no longer able to make decisions (Rosa et al. 2023; Sedini et al. 2022). Types of ACP documentation used vary according to country and the laws and legal framework of each jurisdiction (Robinson and Paes 2025; Toledo‐Franco et al. 2025). In the United Kingdom (UK), advance directives (ADs) are known as living wills, or advance decision to refuse treatment (Sedini et al. 2022). In Australia, ACP documents are known as advance health directives, advance care directives, or medical treatment decision makers, with terminology differing across state (Australian Government 2021). In the United States of America (USA), ADs are recognised as living wills and may include specified medical consent form used, such as physician orders for life‐sustaining treatment (POLST) or medical orders for life‐sustaining treatment (MOLST), as part of the ACP process (Toledo‐Franco et al. 2025).
ACP is relevant for all adults with CKD and is not limited to individuals choosing conservative kidney care (Davison et al. 2024; Stevens et al. 2024). Previous research has demonstrated several benefits of ACP. These include reducing unwanted medical interventions, promoting human dignity, and improving the quality of end‐of‐life care by ensuring that treatments align with the individual's wishes (Ladin et al. 2021; Sudore et al. 2017). While ACP is advocated as improving end‐of‐life care, some studies have not found benefits of ACP (Malhotra et al. 2022; Morrison et al. 2021; Wolff et al. 2025), which underlines the need for more research on how ACP is delivered and evaluated. ACP also helps alleviate stress and anxiety for caregivers (e.g. family members, close personal friends) who may also take on the responsibilities of a legal surrogate decision‐maker (McMahan et al. 2021; Rosa et al. 2023). Despite evidence supporting the benefits of ACP for adults with CKD and caregivers, global uptake remains low (Adenwalla et al. 2024; Davison et al. 2024).
Adults with CKD frequently expect healthcare professionals to initiate conversations about their prognosis and future healthcare wishes (Frandsen et al. 2022; Luckett et al. 2014; Saeed et al. 2019), but this is difficult because of the unpredictable illness trajectory of CKD, particularly in older adults and individuals with multiple comorbidities (Collister et al. 2016; Wasylynuk and Davison 2016). Despite the difficulty in determining the appropriate time to begin ACP discussions (Adenwalla et al. 2024; Rietjens et al. 2021), many kidney healthcare professionals avoid starting ACP conversations unless prompted by the patient due to concerns about causing anxiety or distress (Bristowe et al. 2015; Ladin et al. 2021). Kidney healthcare professionals have also reported limited ACP knowledge, a lack of communication skills to initiate discussions by themselves, a high caseload, as well as insufficient time during haemodialysis (HD) days to begin conversations (Chen et al. 2022; Ladin et al. 2021).
Multiple ACP interventions have been developed to support the adoption of ACP conversations in routine kidney care. Such as ACP discussion‐based programmes, educational aid programmes and peer support programmes for adults with CKD (Holley 2012; O'Halloran et al. 2020; Perry et al. 2005; Tigert et al. 2005; Yamarik et al. 2024; Yuen et al. 2016), as well as educational and communication skills training programmes for kidney healthcare professionals (Bristowe et al. 2014; Cheung et al. 2021). Yet, no systematic review has been conducted to synthesise the evidence on the characteristics and outcomes of interventions specifically for adults with CKD. This review, therefore, sought to identify: (1) What interventions are used to promote ACP in adults with CKD? (2) Who initiates or delivers ACP interventions? (3) What is the rate of uptake of ACP among adults with CKD? and (4) what are the outcomes of ACP interventions?
2. Methods
The review protocol was prospectively registered in the PROSPERO (CRD42024589958). The systematic review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta‐analyses (PRISMA) guidelines (Page et al. 2021); see Supporting Information Table 1.
2.1. Eligibility Criteria
Eligibility criteria were defined using the PICO (Population, Intervention, Comparison, Outcome) framework. This review included all research designs that described ACP interventions aimed at promoting ACP uptake among adults with CKD, including those receiving HD and/or their caregivers. Studies reporting ACP interventions characteristics and evaluating efficacy among adults with CKD were included. Eligible studies were published in English. Also eligible were studies with CKD and other chronic disease participants, where data related to those with CKD could be extracted. Non‐research articles, protocol, reviews, grey literature, abstracts or conference proceedings were excluded. Details of the criteria are presented in Table 1.
Table 1.
Study eligibility criteria.
| Inclusion criteria | Exclusion criteria |
|---|---|
|
|
2.2. Search Strategy
A librarian was consulted to develop a comprehensive search strategy. Six databases were searched: CINAHL Complete, MEDLINE (Ovid), PubMed, PsycINFO, Scopus, and Embase (Elsevier). The search was conducted from the inception through to 10 September 2024. Medical subject headings (MeSH) e.g., “Chronic Kidney Failure” OR “Renal Dialysis” OR “Chronic Renal Insufficiency” OR “Haemodialysis” OR “Kidney Replacement Therapy” AND “Advance Care Planning” OR “Advance Directives” OR “Durable Power of Attorney” OR “Living Wills” OR “Shared Decision Making.” Keywords e.g., end‐stage kidney disease, dialysis, ACP, advance directive, living will, and health care power of attorney were combined using Boolean, truncation and wildcard operators for the search. The search strategy was first applied to CINAHL and then adapted for the other databases (see Supporting Information Table 2).
2.3. Study Selection
Following the search process, all identified citations were transferred into EndNote (The EndNote Team 2013) and then exported to Covidence (Veritas Health Innovation 2024). Duplicate citations were removed. Titles and abstracts were screened by two independent reviewers (J.T. with either M.J.B. or L.P.) based on the eligibility criteria. Any disagreements were resolved through consultation with a third reviewer (A.B.). Remaining studies were retrieved for full‐text review, screened by two independent reviewers for inclusion with disagreement resolved by a third reviewer.
2.4. Data Extraction and Data Synthesis
Data were extracted using a structured data extraction form, including author, year of publication, country, study design, sample characteristics, sample size, theoretical framework, characteristics of intervention and control, and results (see Supporting Information Table 3). Any disagreements were resolved by a third author to reach consensus. For the study involving mixed participants, data specific to CKD participants were extracted and synthesised separately. For studies in which outcomes were reported in combination, the findings were interpreted with caution.
A narrative synthesis was conducted because heterogeneity in study designs, data collection methods, and reported outcomes made a meta‐analysis infeasible (Campbell et al. 2020). All outcomes of interest were narratively summarised by interventions characteristics, types of interventions, strategies used, ACP outcomes for adults with CKD, and the healthcare system. Qualitative findings from participants' evaluation of ACP interventions were also synthesised and categorised.
2.5. Quality Appraisal
The Mixed Methods Appraisal Tool (MMAT) was used to appraise the quality of all studies (Hong et al. 2018) due to the diversity of study designs included in the review. Each study was evaluated based on research design quality, with scores ranging from 0/5 to 5/5. To provide an overall measure of methodological quality, scores were converted to percentages, with each criterion contributing 20%. A score of 1 out of 5 indicates that 20% of the quality criteria were met, while a score of 5 out of 5 indicates (100%) full compliance with all criteria (Hong et al. 2018).
A total of 27 studies were appraised. Among these, 10 studies scored 100%, 14 studies scored 80%, and 3 studies scored 60% (see Supporting Information Table 4). Studies scoring 100% were considered to have high methodological quality. Scores of 80% were considered to have minor methodological limitations, 60% were considered to have moderate limitations, and scores of 40% or lower were rated as having major methodological limitations (Hong et al. 2018). No studies in this review were rated as having major methodological limitations.
3. Results
3.1. Study Characteristics
Twenty‐seven studies met the inclusion criteria (see Figure 1). These studies were conducted between 1993 and 2024. Of these, 22 were quantitative (10 randomised and 12 non‐randomised), three were qualitative, and two were mixed‐methods designs. The included studies were conducted in USA (n = 18), UK (n = 4), Australia (n = 1), Canada (n = 1), Denmark (n = 1), Hong Kong (n = 1), and Malaysia (n = 1). The total number of participants across the 27 studies was 4164, comprising of 3011 adults with CKD, 1053 caregivers/family members, and 100 healthcare professionals.
Figure 1.
PRISMA flow diagram (Page et al. 2021).
Among the 27 included studies, 14 studies focused on adults receiving HD, five studies involved adults receiving either HD or peritoneal dialysis (PD), and four involved adults with CKD grade 5 who were not receiving kidney replacement therapy. Three studies involved kidney healthcare professionals (Bristowe et al. 2014; Cheung et al. 2021; Nair et al. 2020). Another study involved bereaved surrogates, as it reported the characteristics and evaluated the efficacy of ACP intervention among adults with CKD (Song et al. 2017). Three studies involving mixed participants, adults with CKD and others with chronic diseases (e.g., heart failure and cancer), that reported the ACP intervention characteristics and evaluated the efficacy among adults with CKD were included (Douglas et al. 2021; Kirchhoff et al. 2012; Yamarik et al. 2024). These studies found that interventions increased an AD completion, promoted ACP or goals of care conversations, and supported patient autonomy, allowing patients to make their own care decisions until the end‐of‐life.
Sample sizes ranged from 12 (Cheung et al. 2021; Mandel et al. 2023) to 600 (Yuen et al. 2016). Seven studies involved caregivers (Frandsen et al. 2023; Kirchhoff et al. 2012; Song et al. 2010; Song et al. 2024; Song et al. 2017; Song et al. 2009). Seven studies were informed by a theoretical framework including the Representational Approach to patient education (Kirchhoff et al. 2012), Leventhal's Common‐Sense Model and the Conceptual Change Model (Song et al. 2024; Song et al. 2017; Song et al. 2015; Song et al. 2009), the Theory of Family‐Focused Care (Frandsen et al. 2023), and the Consolidated Framework for Implementation Research (Goff et al. 2019). Supporting Information Table 3 summarises the study characteristics.
3.2. Types of ACP Interventions and Strategies Used
Table 2 describes each of the interventions used across the 27 studies included in this review. Of these, one was an ACP intervention development study (Frandsen et al. 2023), three focused on ACP education and communication skills training for kidney healthcare professionals (Bristowe et al. 2014; Cheung et al. 2021; Nair et al. 2020). The remaining 23 interventions were designed to encourage engagement and improve outcomes in ACP among adults with CKD, with some studies also reporting outcomes involving caregivers or surrogates, and the healthcare system (Amro et al. 2016; Courtright et al. 2017; Douglas et al. 2021; Goff et al. 2019; Harrison et al. 2015; Hing Wong et al. 2016; Holley et al. 1993; Kirchhoff et al. 2012; Mandel et al. 2023; O'Halloran et al. 2020; Perry et al. 2005; Scherer et al. 2022; Sellars et al. 2019; Song et al. 2010; Song et al. 2024; Song et al. 2017; Song et al. 2015; Song et al. 2009; Thamcharoen et al. 2024; Tigert et al. 2005; Weisbord et al. 2003; Yamarik et al. 2024; Yuen et al. 2016).
Table 2.
Advance care plan interventions (n = 27 studies).
| Author/year /country | Participants involved (n) | Type of interventions | The strategies used | Who delivered the intervention | Where/When intervention provided | Frequency of sessions | Length of session | Intervention follow‐up |
|---|---|---|---|---|---|---|---|---|
|
Amro et al. 2016 USA |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once | 15–60 min | 12‐month |
|
Bristowe et al. 2014 USA |
|
Education and training skills about ACP (REACT programme) |
|
|
Not described | 3 times | 30–90 min | None |
| ||||||||
|
Cheung et al. 2021 USA |
|
Education and training skills about ACP |
|
|
Not described | Once | 6 h lecture (one day) | None |
|
Courtright et al. 2017 USA |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once | Not described | 3‐months |
| ||||||||
|
Douglas et al. 2021 Canada |
|
Promote ACP uptake |
|
|
HD unit (HD day), kidney clinic, HF clinic, cancer clinic | Once | 8 min each video (ACP and GCD) | 3‐months |
| ||||||||
|
Frandsen et al. 2023 Denmark |
|
Development a prototype of an ACP intervention |
|
|
Not described | Twice | Not described | None |
|
Goff et al. 2019 USA |
|
Promote ACP uptake (SDM‐RSC programme) |
|
|
HD unit (non‐dialysis day) | Twice | Not described | 1 to 3‐days |
|
Harrison et al. 2015 UK |
|
Promote ACP uptake |
|
|
Palliative care service | Once | Not described | 8‐months |
|
Hing Wong et al. 2016 Malaysia |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Not described | Not described | 2 to 3‐days |
| ||||||||
|
Holley et al. 1993 USA |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once or individually determined | Not described |
1 to 3‐months 12‐months |
| ||||||||
| ||||||||
|
Kirchhoff et al. 2012 USA |
|
Improve ACP outcomes (PC‐ACP programme) |
|
|
Not described | Once | 60–90 min | None |
|
Mandel et al. 2023 USA |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once | Average 20.53 min | 3‐month |
|
Nair et al. 2020 USA |
|
Education and training about ACP |
|
|
Nephrology training during ambulatory rotation | Not described | 60 min | Not described |
|
O'Halloran et al. 2020 UK |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once or twice |
Average 19 min (ACP introduction) Average 74 min (ACP discussion) |
2‐weeks 12‐weeks |
| ||||||||
| ||||||||
|
Perry et al. 2005 USA |
|
Promote ACP uptake(Peer intervention) |
|
|
Not described | 8 times | Not described | 2 to 4‐months |
| ||||||||
|
Scherer et al. 2022 USA |
|
Promote ACP uptake (Integrated Palliative Care) |
|
|
Ambulatory KPC clinic | 3 times | Not described | 3‐months |
|
Sellars et al. 2019 Australia |
|
Promote ACP uptake (Nurse‐led ACP programme) |
|
|
Not described | Once, or more | Not described | None |
|
Song et al. 2010 USA |
|
Promote ACP uptake (Patient‐centred ACP) |
|
|
HD unit (HD day) PD clinic |
Once | 48–65 min | 1‐week |
|
Song et al. 2024 USA |
|
Promote ACP uptake (SPIRIT programme) |
|
|
HD unit (HD day)/ PD clinic (1st time) Home (2nd time) |
Twice |
1st time: 30–150 min 2nd time: 5–75 min |
3‐month after patient's death |
|
Song et al. 2017 USA |
|
Promote ACP uptake (SPIRIT programme) |
|
|
HD unit (HD day) (1st time) Home (2nd time) |
Twice | 20–30 min | None |
|
Song et al. 2015 USA |
|
Promote ACP uptake (SPIRIT programme) |
|
|
HD unit (HD day)/ PD clinic |
Twice |
average time 1st time: 82 min 2nd time: 20 min |
12‐months |
|
Song et al. 2009 USA |
|
Promote ACP uptake (SPIRIT programme) |
|
|
HD unit (HD day)/ PD clinic |
1‐2 times | Average 60 min |
1‐week 3‐months |
|
Thamcharoen et al. 2024 USA |
|
Promote ACP uptake |
|
|
Not described | Once | 11–53 min (average 22 min) | 24‐weeks |
|
Tiger et al. 2005 UK |
|
Promote ACP uptake |
|
|
HD unit (HD day) | Once | Not described | 1‐4‐weeks |
| ||||||||
| ||||||||
|
Weisbord et al. 2003 USA |
|
Promote ACP uptake (PC programme) |
|
|
HD unit (HD day) | Twice | Not described | 4‐weeks |
|
Yamarik et al. 2024 USA |
|
Promote ACP uptake (PREPARE programme) |
|
|
HD unit (HD day) Chemotherapy day | Once | Average 100 min | None |
| ||||||||
| ||||||||
|
Yuen et al. 2016 Hongkong |
|
Promote ACP uptake |
|
|
A designated clinic | Once | Not described | None |
|
Abbreviations: ACP: advance care planning, AD: advance directive, CKD: chronic kidney disease, COPD: chronic obstructive pulmonary disease, EoL: end‐of‐life, G3: grade 3, G4: grade 4, G5D: grade 5 dialysis, G5T: grade 5 transplant, GCD: goal of care designation, HD: haemodialysis, HF: heart failure, KPC: kidney palliative care, PC: palliative care, PD: peritoneal dialysis, PC‐ACP: patient‐centred advance care planning, REACT: REnal specific Advanced Communication, SDM‐RSC: shared decision making and renal supportive care, SICG: Serious Illness Conversations Guide, SPIRIT programme: Sharing Patients' Illness Representations to Increase Trust programme.
Five main strategies were used to promote ACP uptake among adults with CKD: (1) providing ACP education and skills training for kidney healthcare professionals; (2) implementing ACP conversations; (3) providing educational resources such as videos or written materials; (4) supporting peer ACP facilitators throughout the study period, including training other patients receiving HD or other healthcare professionals (e.g. nurse, social worker) who addressed patients' concerns and provided ongoing guidance; and (5) integrating palliative care team services into kidney care.
Among the 23 patient‐focused interventions, 19 interventions involved ACP conversations. Nine of these provided only the conversation component (Amro et al. 2016; Frandsen et al. 2022; Goff et al. 2019; Harrison et al. 2015; Kirchhoff et al. 2012; Mandel et al. 2023; Scherer et al. 2022; Song et al. 2010; Thamcharoen et al. 2024; Weisbord et al. 2003). Five interventions combined ACP conversations with support from a trained peer ACP facilitator (Sellars et al. 2019; Song et al. 2024; Song et al. 2017; Song et al. 2015; Song et al. 2009). Three interventions supplemented ACP conversations with educational resources (Holley et al. 1993; Tigert et al. 2005; Yuen et al. 2016). Two interventions incorporated all three strategies: implementing ACP conversations, providing educational resources, and supporting trained peer facilitators (O'Halloran et al. 2020; Perry et al. 2005).
The remaining four interventions did not include ACP conversations. Of these, three interventions provided only educational materials about ACP and ADs, including an online video, pamphlets, and booklets (Douglas et al. 2021; Hing Wong et al. 2016; Tigert et al. 2005). One intervention combined educational materials with support from a trained nurse facilitator (Yamarik et al. 2024).
3.3. Who Delivers ACP Interventions?
Among the 23 patient‐focused interventions promoting ACP uptake, kidney healthcare professionals, including nephrologists, nurses, and social workers, primarily delivered ACP interventions (see Table 2). Eight interventions were conducted solely by trained nurses (Sellars et al. 2019; Song et al. 2010; Song et al. 2024; Song et al. 2017; Song et al. 2015; Song et al. 2009; Tigert et al. 2005; Yamarik et al. 2024). Three interventions were delivered by a combination of nephrologists and social workers who were trained in ACP conversations (Goff et al. 2019; Mandel et al. 2023; Yuen et al. 2016). Other interventions involved nephrologists only (Amro et al. 2016), nephrologists and nurses (Holley et al. 1993), or nurses and social workers (Kirchhoff et al. 2012).
Four interventions were led by palliative care physicians, nephrologists who had a subspecialty in palliative care, or HD nurses who had experience or were trained in palliative care (Harrison et al. 2015; Scherer et al. 2022; Thamcharoen et al. 2024; Weisbord et al. 2003). Three interventions provided peer support to help and address concerns from participants throughout the programme. One intervention was delivered by an individual receiving HD who had completed a peer mentor training programme (Perry et al. 2005), one intervention was provided by a combination of a nurse and a patient peer (O'Halloran et al. 2020), and another intervention was provided by a healthcare peer support from a social worker who received training in an advance directive (Perry et al. 2005). Two interventions were led by researchers or clinical staff whose professional disciplines were not specified (Courtright et al. 2017; Douglas et al. 2021), and one study that provided only educational materials did not specify who delivered the intervention (Hing Wong et al. 2016).
3.4. Duration and Frequency of ACP Interventions
Among the 23 patient‐focused interventions promoting ACP uptake. There was considerable variation in the duration of ACP discussion, ranging from 11 to 53 minutes (Song et al. 2024; Thamcharoen et al. 2024). The frequency of ACP interventions ranged from one to eight sessions. Seven interventions provided only one session. Eighteen interventions included follow‐up sessions. Of these, 15 studies conducted one follow‐up, while three studies conducted two follow‐ups. The follow‐up period ranged from 1 day (Goff et al. 2019) to 12 months (Amro et al. 2016; Holley et al. 1993; Song et al. 2015).
3.5. Advance Care Planning Outcomes
This review reported key outcomes of ACP interventions, including individual and healthcare system outcomes, and participants' evaluation of ACP interventions. Individual outcomes involved the completion of ACP documentation, identification of a surrogate decision‐maker, improvements in health‐related quality of life and quality of end‐of‐life care. The healthcare system outcome was related to costs.
3.5.1. Individual Outcomes: Completion of ACP Documentation
Twelve studies evaluated ACP documentation completion rates (see Supporting Information Table 2). Five studies (5/12, 41.67%) reported a statistically significant increase following ACP interventions.
Two studies showed that ACP conversations were associated with a higher completion rate. Specifically, one study found a noticeable increase in MOLST completion (p < 0.001; Amro et al. 2016), while another reported that a nurse‐led programme resulted in a higher rate of ACP document completion (p < 0.05; Sellars et al. 2019). In addition, combining ACP conversations with peer patient support and educational materials led to more advance directive completions than applying printed materials alone (35% vs 12%, p < 0.05; Perry et al. 2005). Another intervention reported that advance directive completion increased from 13% to 37% (p < 0.002) after participants received educational resources and discussed ACP with their nephrologists and HD nurses (Holley 2012). Similarly, a palliative care‐led intervention resulted in a significant increase in end‐of‐life planning documentation (p = 0.008; Harrison et al. 2015). In contrast, studies that provided only educational resources showed a non‐significant increase in ACP completion rate (Courtright et al. 2017; Douglas et al. 2021; Hing Wong et al. 2016).
Four other studies found increases in the percentage of ACP completion rate but did not undertake further statistical analysis. All adults in one study (100%, n = 28) completed and signed an advance directive within a day of intervention after receiving ACP education through both videos and written pamphlets, with support from trained nurse facilitators (Yamarik et al. 2024). One study showed that the completion rate of MOLST increased to 64% among adults who received integrated care, compared to those who received kidney care alone (7%; Scherer et al. 2022).
Another study showed that 32% of participants completed living wills, and some verbally communicated their wishes to their nephrologists following the introduction of a palliative care team (Weisbord et al. 2003). Use of the Serious Illness Conversation Guide (SICG) for ACP discussions also led to an increase in MOLST completion in 12% of participants, with an additional 7.7% completing an advance directive during hospitalisation (Thamcharoen et al. 2024).
3.5.2. Individual Outcomes: Identification of Caregiver as Decision‐Maker
Five studies reported outcomes related to the identification of caregivers as decision‐makers following ACP interventions (see Supporting Information Table 2) with most studies using the term ‘surrogate’. The majority of decision‐makers' relationships to the patient were spouse/partner, child or sibling, respectively. Adults who had ACP conversations with a trained nurse were significantly more likely to identify a caregiver who could be a surrogate decision‐maker than those receiving usual kidney care (67.2% vs 5.2%, p < 0.001; Sellars et al. 2019). In studies involving integrated palliative care with kidney care, participants were more likely to identify an alternative decision‐maker (Scherer et al. 2022; Thamcharoen et al. 2024; Tigert et al. 2005; Weisbord et al. 2003).
3.5.3. Individual Outcomes: Improvements in Health‐Related Quality of Life
Three studies evaluated health‐related quality of life outcomes following ACP interventions (see Supporting Information Table 2). One intervention that provided integrated palliative and kidney care significantly improved overall health‐related quality of life (p = 0.004; Scherer et al. 2022). A nurse‐led intervention showed significant changes in three subscales: effects, burden, and SF‐12 physical of the KDQOL‐36 (O'Halloran et al. 2020). Another study that provided only educational resources reported no significant improvement in health‐related quality of life (p = 0.63; Courtright et al. 2017).
3.5.4. Individual Outcomes: Improvements in Quality of End‐of‐Life Care
One study evaluated improvements in the quality of end‐of‐life care (see Supporting Information Table 2). The intervention was delivered by a palliative care team, which initiated discussions about end‐of‐life planning, place of death, and the nomination of a designated decision‐maker. The study reported a 19.7% increase in the number of participants who died in their preferred place (p = 0.01), and a 23.6% increase in participants who were registered for care under the Gold Standards Framework (p = 0.002; Harrison et al. 2015).
3.5.5. Healthcare System Outcome: Healthcare Costs
Two studies evaluated the cost of ACP interventions. One study reported that the average hospital cost during the last 12 months of life was AUD $99,077 (SD = $71002) per patient, while the total cost of the ACP programme was AUD $26,821, representing just 0.5% of hospital costs (Sellars et al. 2019). Another study found no significant difference in health system costs between the immediate intervention and deferred groups. Both groups received the same ACP interventions at different times, but there was no usual care group available for cost comparison (O'Halloran et al. 2020).
3.5.6. Participants' Evaluation of ACP Interventions
Seven studies reported the perspectives of adults with CKD on ACP interventions, as presented in Table 3. Of these, four studies reported qualitative findings from patient interviews (Goff et al. 2019; O'Halloran et al. 2020; Scherer et al. 2022; Song et al. 2009). One study assessed patients' comfort in discussing end‐of‐life issues quantitatively using survey instruments (Perry et al. 2005). Two studies reported both qualitative and quantitative findings on the acceptability of ACP and patients' anxiety, and emotional responses during ACP conversations (Mandel et al. 2023; Thamcharoen et al. 2024).
Table 3.
Participants' evaluation of ACP interventions.
| Studies | Participants' perspective |
|---|---|
| Emotional response and perceived value of ACP | |
| Mandel et al. (2023); Thamcharoen et al. (2024) | Conversations did not cause anxiety or an increase in anxiety |
| Mandel et al. (2023); O'Halloran et al. (2020); Thamcharoen et al. (2024) | Increased their hopefulness about future quality of life |
| Song et al. (2009) | Getting to the root of things that were never thought of or talked about |
| Mandel et al. (2023); O'Halloran et al. (2020); Song et al. (2009) | Felt the conversation was worthwhile (e.g., helped them discuss and plan for their final illness, helped them clarify their wishes with both staff and family) |
| Goff et al. (2019); Perry et al. (2005); Scherer et al. (2022) | Felt comfort with talked about their health issues or future healthcare preferences |
| Song et al. (2009) | ACP questions were actually emotional and challenging, but needed to be asked |
| Goff et al. (2019) | Preference for more specific discussion about prognosis during discussions |
| Timing of ACP | |
| O'Halloran et al. (2020) | ACP should be offered earlier in the disease trajectory. |
| Family involvement in ACP | |
| Mandel et al. (2023); O'Halloran et al. (2020); Song et al. (2009) | Family member involvement (felt a sense of relief) in ACP or end of life decision‐making |
Participants expressed a range of responses to ACP interventions, including positive, mixed, and negative views; however, most feedback was positive. Participants' qualitative evaluations were synthesised into three groups: (1) emotional response and perceived value of ACP, (2) timing of ACP, and (3) family involvement in ACP (see Table 3). For emotional response and perceived value of ACP, two studies found that ACP conversations did not cause anxiety or increase anxiety levels (Mandel et al. 2023; Thamcharoen et al. 2024), and three studies reported that participants felt peaceful and hopeful about their future quality of life (Mandel et al. 2023; O'Halloran et al. 2020; Thamcharoen et al. 2024). Only one study found that participants identified that ACP should be initiated earlier in the disease trajectory (O'Halloran et al. 2020). For family involvement in ACP, participants reported that involving family members in ACP or end‐of‐life decision‐making provided a sense of relief (Mandel et al. 2023; O'Halloran et al. 2020; Song et al. 2009).
4. Discussion
This systematic review examined 27 ACP interventions used to promote ACP uptake and improve ACP outcomes among adults with CKD, published since 1993. For the past 10 years, the number of ACP interventions (n = 19) have notably increased following the Kidney Disease: Improving Global Outcomes (KDIGO CKD Work Group 2024) announcement of the roadmap to improve the quality of supportive care for adults with CKD in 2015 (Davison et al. 2015).
Providing ACP education and training in communication skills to kidney healthcare professionals enhances ACP uptake, as a lack of knowledge and communication skills are key barriers to initiating these conversations (Ladin et al. 2021; Luckett et al. 2014). While ACP education alone may improve awareness and attitudes toward ACP among kidney healthcare professionals, it is not sufficient (Cheung et al. 2021; Nair et al. 2020). Practising ACP communication skills in simulation scenarios or real‐life situations is also crucial, as it can enhance kidney healthcare professionals' confidence and preparedness in conducting ACP independently (Bristowe et al. 2014; Cheung et al. 2021; Poveda‐Moral et al. 2021).
The findings emphasise a key recommendation from KDIGO, which advocates for integrating palliative care specialists into kidney care teams to improve ACP. This approach can help address the skill‐set deficits as well as the time limits faced by kidney healthcare professionals in implementing ACP in HD units or clinics (Davison et al. 2015; Davison et al. 2024; Luckett et al. 2014). One study in this review reported that integrated palliative care specialists significantly improved patients' quality of life (Scherer et al. 2022). Integrating palliative care specialists as part of a kidney supportive care programme regardless of CKD grade can assist adults to articulate, document and implement their healthcare preferences while still competent to do so (Purtell et al. 2024).
Interventions that provided ACP knowledge and initiated ACP conversations for adults with CKD demonstrated positive outcomes, because these interventions encouraged individuals to express their values and future preferences (Rietjens et al. 2021), helping them to be aware and make plans for their future. This review indicated that ACP discussions did not cause anxiety about CKD, instead, ACP discussions made patients feel more hopeful about their future (Mandel et al. 2023; O'Halloran et al. 2020; Thamcharoen et al. 2024).
Involving a peer patient facilitator as part of an ACP programme improved ACP documentation as it assisted adults to identify a surrogate decision‐maker, and helped them discuss and plan for their final illness (O'Halloran et al. 2020). The importance of training peer facilitators and integrating them into the intervention was emphasised, as these strategies provide consistent and address individuals' information needs. These findings align with evidence that integrating peer support effectively addresses the informational and emotional needs of adults with CKD by fostering empathy, encouraging discussion of their preferences, and assists with ACP document completion when patients require help translating their wishes into formal legal terms (Carter et al. 2023; Elliott et al. 2022; Winterbottom et al. 2025).
The appropriate timing for when to initiate ACP discussion in adults with CKD remains unclear. ACP is not only for older adults, working‐age adults with CKD also experience a high symptom burden and face existential decisions, also require initiating ACP conversations (Liu et al. 2024). Meanwhile, KDIGO recommends that adults with CKD, regardless of age and health state, should receive ACP as part of kidney supportive care to enhance quality of life and improve healthcare (Davison et al. 2024).
This review found no consistency in the duration or frequency of ACP discussions. Most interventions included only one to two sessions despite the literature suggesting that ACP is an iterative process (Rietjens et al. 2021). A similar pattern was observed in a review of ACP involving adults with heart failure, where there was variation in duration and frequency ACP discussions (Schichtel et al. 2020). The heterogeneity in duration and frequency of ACP interventions across studies in this review may have influenced participants' experiences and outcomes. One‐time conversations may have limited opportunities to complete the ACP documents and to identify an alternative (surrogate) decision‐maker who will act on their expressed wishes (Rietjens et al. 2021). There is a future research to determine key elements of an ACP intervention, including when ACP discussions should commence, who should be involved, how often should these discussions occur, and the appropriate time of each discussion.
4.1. Strengths and Limitations
The strengths of this review were that it searched for studies since inception, thereby providing a comprehensive review of ACP interventions for adults with CKD. Despite these strengths, some limitations should also be acknowledged. First, the included studies were heterogeneous, with variations in types of interventions, delivery mode and outcome measures. The certainty of evidence was not assessed in this review because the inclusion of various study designs and heterogeneity of the studies prevented a meta‐analysis of study outcomes. Overall, the included studies demonstrated acceptable methodological rigour, with most meeting moderate to high quality standards based on MMAT appraisal. Second, this review included only studies published in English. This analysis, therefore, might have missed studies published in other languages. Lastly, the studies included in this review were primarily conducted in Western countries. Willingness to engage in ACP and its outcomes may be influenced not only by individuals' knowledge and awareness but also by cultural norms, religious beliefs, and the healthcare support system (e.g., legal and policy frameworks, resource availability, and standards of care; Jimenez et al. 2018; Suen et al. 2024). Thus, caution is warranted when interpreting this review.
4.2. Implications for Clinical Practice
Findings from this review emphasise the importance of ACP in enhancing the quality of kidney care and highlight implications for kidney healthcare professionals. Providing ACP knowledge and communication skills training for the professionals is essential, particularly through role‐play in simulations and real situations. In addition, the healthcare organisation has a crucial role in promoting ACP uptake, encompassing both institutional support and organisational policy (Callahan 2019; Goff et al. 2019). Integrating ACP conversations combined with providing educational resources and peer support (both healthcare and patient facilitators) is recommended to enhance awareness and engagement in the ACP process. To address time constraints and skills deficits among kidney healthcare professionals, palliative care specialists should be integrated into kidney care teams, and while this has occurred in many countries it is not yet widespread. Lastly, conversations about future healthcare wishes should occur much earlier in the CKD trajectory rather than waiting until kidney failure occurs.
5. Conclusion
This review synthesised existing evidence on ACP interventions for adults with CKD, highlighting the types of intervention and outcomes. These interventions were shown to improve ACP uptake, particularly when facilitated by trained kidney healthcare professionals, supported by educational resources and peer support facilitators. These approaches were effective across adults with all grades of CKD and did not cause distress; instead, they fostered a sense of hopefulness about future care following the interventions. Despite the robust process of this review, there is insufficient evidence to reliability inform practice. Addressing this gap through future research is essential to strengthen the evidence base for the integration of ACP into routine kidney care.
Author Contributions
Juthamas Tiansaard: conceptualisation, methodology, formal analysis, writing original draft, writing review and editing, and visualisation. Melissa J Bloomer: conceptualisation, methodology, formal analysis, writing review and editing, supervision, critical review of intellectual content, and final approval of the manuscript. Louise Purtell: conceptualisation, methodology, formal analysis, writing review and editing, supervision, critical review of intellectual content, and final approval of the manuscript. Ann Bonner: conceptualisation, methodology, formal analysis, writing review and editing, supervision, critical review of intellectual content and final approval of the manuscript.
Funding
The authors received no specific funding for this work.
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
Supporting information table 1: PRISMA 2020 Checklist. Supporting information table 2: Systematic review search strategy. Supporting information table 3: Characteristics of included studies. Supporting information table 4: Quality assessment of included studies using Mixed Methods Appraisal Tool (MMAT).
Acknowledgements
Open access publishing facilitated by Griffith University, as part of the Wiley ‐ Griffith University agreement via the Council of Australian University Librarians.
Tiansaard, J. , Bloomer M. J., Purtell L., and Bonner A.. 2026. “Advance Care Planning Interventions for Adults With Chronic Kidney Disease: A Systematic Review.” Journal of Renal Care 52: 1–15. 10.1111/jorc.70046.
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Associated Data
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Supplementary Materials
Supporting information table 1: PRISMA 2020 Checklist. Supporting information table 2: Systematic review search strategy. Supporting information table 3: Characteristics of included studies. Supporting information table 4: Quality assessment of included studies using Mixed Methods Appraisal Tool (MMAT).