The evolving role and impact of patient navigators in serious illness care: a narrative review
Review Article | Palliative Medicine and Palliative Care for Serious or Advanced Diseases

The evolving role and impact of patient navigators in serious illness care: a narrative review

Jennifer A. Wylie ORCID logo, Crystal Diaz ORCID logo, Audry S. Sebikali-Potts, Fabian M. Johnston ORCID logo

Department of Surgery, Atrium Health Wake Forest Baptist Medical Center, Winston-Salem, NC, USA

Contributions: (I) Conception and design: All authors; (II) Administrative support: All authors; (III) Provision of study materials or patients: All authors; (IV) Collection and assembly of data: JA Wylie, C Diaz, AS Sebikali-Potts; (V) Data analysis and interpretation: JA Wylie, C Diaz, AS Sebikali-Potts; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Fabian M. Johnston, MD, MHS; Jennifer A. Wylie, MD, MS. Department of Surgery, Atrium Health Wake Forest Baptist Medical Center, 1 Medical Center Blvd, Winston-Salem, NC 27157, USA. Email: Fabian.Johnston@advocatehealth.org; Jennifer.wylie@advocatehealth.org.

Background and Objective: In today’s increasingly complex and fragmented healthcare system, patient navigation has emerged as a strategy to improve access to palliative care and reduce health inequities among historically marginalized populations. This narrative review aims to examine the evolution of patient navigation and its implementation across care settings to identify key themes and opportunities to optimize outcomes and reduce disparities in patients with serious illnesses.

Methods: A literature search was conducted in PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL) Ultimate, and Google Scholar by three independent investigators on articles related to patient navigation in palliative care and patients with serious illnesses. A total of 49 academic articles and 5 additional articles were included.

Key Content and Findings: A review of the literature revealed a number of diverse models of care navigation and implementation strategies. Navigation models involved varying degrees of community-based personnel and healthcare professionals from a range of disciplines. Through culturally informed support, education, and empowerment, many of these programs demonstrated improved patient outcomes such as reduced symptom burden, increased advance care planning, improved hospice referrals, more goal-concordant care at the end of life, reduced end-of-life cost expenditure, hospitalizations and emergency room visits. Integration of navigation across both medical and community settings also helped to reduce health disparities by addressing barriers across multiple levels of influence. However, in order for such models to be successful, understanding and integration of cultural values, trusted community figures, and strategies for addressing language barriers are essential.

Conclusions: While a variety of approaches to patient navigation can help improve care for seriously ill patients, common themes of effective interventions include social connection, engagement in what is most meaningful to the patient, identification of patient needs, access to culturally grounded resources, patient advocacy and empowerment, incorporation of navigators embedded within the local community, and support from key stakeholders.

Keywords: Palliative care; patient navigation; social determinates of health; health equity


Submitted Dec 05, 2025. Accepted for publication Mar 24, 2026. Published online May 20, 2026.

doi: 10.21037/apm-2025-1-140


Introduction

The modern healthcare system is highly specialized and fragmented, posing significant challenges for patients managing chronic or serious illness. The system’s complexity can lead to delays in care, poorer outcomes, and heightened patient and family distress (1). Prior to navigator programs, the American Cancer Society issued a “Report to the Nation on Cancer in the Poor” in 1989, identifying five critical issues disproportionately affecting low-income populations. The report found that individuals living in poverty experience greater pain and suffering from cancer, and that their families often make extraordinary sacrifices to obtain and pay for treatment (1). It further highlighted that poor individuals face substantial barriers to obtaining and using health insurance and frequently forgo medical care due to cost. Additionally, existing cancer education programs were deemed culturally insensitive and irrelevant to many poor communities, and a widespread sense of fatalism about cancer discouraged individuals from seeking timely care. The report led to ten actionable items, including guaranteeing access to cancer prevention, detection, and treatment services regardless of ability to pay. Additional recommendations centered on culturally tailored education to reduce fatalism, expanding insurance and financial support programs, and providing patient navigation services to help low-income individuals overcome barriers to care (1). Following this call-to-action, Dr. Harold P. Freeman founded the nation’s first patient navigation program at Harlem Hospital in 1990 (2). Since then, patient navigation has emerged as a crucial, evidence-based intervention designed to address systemic deficiencies faced by diverse communities. Today, patient navigation is not simply limited to low-income patients but has become a structured, patient-centric approach that provides a “guiding force” to help many patients move seamlessly through the continuum of care, from prevention and diagnosis to treatment, survivorship, and end-of-life support (3). This role is centered on eliminating barriers to timely care and promoting health equity (4). This review aims to first define and discuss navigator roles, then examine various navigation models within serious illness and palliative care and finally explore implementation themes and future opportunities.

Background: foundations of patient navigation & equity

Who are patient navigators?

Patient navigators are essential for bridging the gap between patients and the complex healthcare system. The field is characterized by various models that include both lay and professional health workers. Lay patient navigators are trained community-based personnel without formal healthcare credentials (5). Although known by many names, including “community health worker (CHW)”, “lay health advisor”, and “natural helpers”, this model prioritizes demographic concordance, recruiting individuals who share the ethnic, cultural, or linguistic backgrounds of the target population (6,7). Their shared background can be critical for addressing deep-rooted issues such as distrust of the healthcare system (8).

Professional patient navigators are qualified health professionals such as physicians, physician assistants, nurses, social workers, psychologists, and others who take on the role of patient navigator (5). Their strength lies in their clinical expertise and deep understanding of the healthcare system, enabling them to provide more advanced information regarding diagnosis and treatment than their lay counterparts (5). For example, an oncology nurse navigator can provide in-depth education about treatment plans and address questions regarding a patient’s physician encounter—tasks that a lay patient navigator may not have the clinical knowledge to perform (9).

There is limited literature regarding the comparison of lay versus professional patient navigators. In a randomized clinical trial by Jandorf et al., 240 African American patients referred for screening colonoscopy by their primary care providers were recruited during routine, non-acute visits at an urban primary care clinic. Participants received navigation from either a lay or professional navigator. The investigators found no significant difference in adherence rates between the two groups for completing the colonoscopy, and both reported high levels of satisfaction (10). Studies such as these suggest that, regardless of background, all navigators share a common core principle of patient-centricity and can be effective in improving patient outcomes (3).

Patient navigator scope & responsibilities

At its core, the role of the patient navigator is to guide individuals through screening, diagnosis, treatment, and follow-up (11). Navigators serve as critical liaisons providing a consistent point of contact and facilitate communication among patients, families, and the clinical team. Their responsibilities are broad and context-dependent, varying by care setting and patient need. These include:

  • Access to care and timeliness: navigators assist with appointment coordination, reducing time from diagnosis to treatment and ensuring timely access to specialists or resources.
  • Logistical and financial support: navigators may assist with complex financial guidance, insurance and transportation barriers, and work to connect patients with financial assistance programs (12,13).
  • Educational and emotional support: many navigators provide education on illness management, simplifying medical jargon, and offering emotional support to the patient and their caregivers (9).
  • Advocacy and empowerment: navigators serve as an important part of the multidisciplinary team by communicating patient preferences and empowering patients to actively participate in medical decision-making (14).

Furthermore, a qualitative study of navigator field notes conducted by Fink et al. [2020] found nine common themes describing the lay patient navigator role. These included activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and patient experience (15). Through these functions, navigators have been shown to effectively improve a wide range of patient outcomes in areas such as nutrition, physical activity, smoking cessation, breastfeeding, immunization rates, infectious disease treatment, cancer screening, and early cancer treatment (16).

Navigation as a bridge for patients with serious illness

Patients with serious illnesses require more than just clinical care—they have unique needs required to navigate complex and fragmented healthcare systems. Patient navigation plays a vital role in ensuring a seamless flow of care while prioritizing the patients’ individual needs and preferences. This is achieved through establishing a one-on-one relationship and working diligently to eliminate barriers across the entire healthcare continuum (3).

Rationale and knowledge gap

While navigation improves access and timeliness to care for seriously ill patients, its role in supporting patients and families with symptom burden, decision-making, and care coordination at the end of life remains unclear. The most effective navigation delivery and implementation strategies are also poorly understood.

Objective

This narrative review explores the evolving role of patient navigators and identifies opportunities for optimizing their implementation in palliative and serious illness care to improve patient outcomes and reduce disparities among marginalized patient populations. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-140/rc).


Methods

A comprehensive narrative review was performed by three reviewers utilizing a non-systematic search strategy to identify literature on patient navigation encompassing serious illness and palliative care. The literature search was conducted from July to October 2025 using electronic databases, including PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL) Ultimate, and Google Scholar. Key search terms and phrases to target the themes of the review included phrases such as “patient navigator”, “lay patient navigator”, “history of patient navigation”, “patient navigation artificial intelligence”, “patient navigator disparities”, “community health workers”, “nurse navigators”, and “palliative care”. Only articles published in English were included and original research reports, systematic reviews, and community resource webpages were used. Given limited available literature, no date limits were exercised. References from reports of interest were also reviewed.

In addition to traditional database searches, the official website for the Centers for Medicare & Medicaid Services (CMS) was consulted to retrieve policy documents, press releases, and details regarding payment models for patient navigation. Specific search terms used on the CMS platform included “patient navigation”, “navigator program”, and “principal illness navigation”. Information was compiled through a descriptive summary of findings and interpretations.

Our initial search yielded 966 results which decreased to 385 after limiting to human studies in adults and full-text articles in English. Title screening for study relevance to navigator interventions left 69 articles. Following abstract and full-manuscript review, a total of 58 studies remained, including 16 navigator interventions (Table 1). An example of detailed search included in the Table S1.

Table 1

The search strategy summary

Items Specification
Date of search July 2025 to October 2025
Databases and other sources searched PubMed, CINAHL Ultimate, Google Scholar, and Centers for Medicare & Medicaid Services
Search terms used “Patient navigator”, “lay patient navigator”, “history of patient navigation”, “patient navigation artificial intelligence”, “patient navigator disparities”, “community health workers”, “nurse navigators”, and “palliative care”, “patient navigation”, “navigator program”, and “principal illness navigation”
Timeframe 1989–2025
Inclusion and exclusion criteria References written in the English-language on topics relevant to patient navigation, palliative care, and social determinates of health, including primary research reports as well as systematic reviews were included. References not written in English, conference abstracts, presentation materials, and studies in patients younger than 18 years of age were not included
Selection process Three authors screened articles separately. Selected articles were reviewed for relevance and applicability and approved by all authors

CINAHL, Cumulative Index of Nursing and Allied Health Literature.


Navigation as a strategy to reduce disparities

Given their historical origins discussed above, navigator programs are designed to play an essential role in reducing disparities across the healthcare system. Health disparities refer to differences in health outcomes, risks, and overall health status that occur at disproportionately higher rates in certain population groups compared to others (17). These inequities appear in disease incidence, prevalence, mortality, and in how people access and experience care (18). These disparities are commonly examined across groups defined by race/ethnicity, socioeconomic status, geographic location, disability, gender, and sexual orientation (17). These inequities arise from systemic disadvantages. To better understand how health disparities emerge and persist, the National Institute of Health (NIH) and National Institute on Minority Health and Health Disparities (NIMHD) developed a research framework that outlines the multiple levels and domains that influence inequities. This model highlights how individual, interpersonal, community, and societal factors interact with biological, behavioral, environmental, sociocultural, and health care system domains to shape health outcomes (18). Patient navigation directly aligns with this framework, as it is designed to intervene at various levels and domains of influence to improve outcomes. While navigators support individual patients, their influence extends to support caregivers and family networks, strengthen ties to community-based services, and help patients overcome system-level barriers.

Building on the understanding that patient navigation mitigates systemic healthcare disparities (19) through multilevel intervention, multiple studies have demonstrated its effectiveness across both clinical and community settings. A notable study is the quality improvement randomized controlled trial by Phillips et al. [2011]. This study evaluated a navigation intervention to increase mammography screening among 3,895 women receiving primary care at an inner-city academic medical center. The intervention consisted of telephone outreach and reminder letters from patient navigators. The 9-month intervention resulted in a significantly higher adherence to biennial mammography (87% vs. 76% in controls, P<0.001) (20). The limitation of this study was the inability to reach some patients which underscores the importance of expanding navigation strategies beyond traditional clinical outreach and integrating community partnerships to reach individuals who might otherwise remain disconnected from care.

Addressing these outreach barriers, the Multi-Intervention Study to Improve Colorectal Cancer Screening (MISTER B) trial by Cole et al. [2017] integrated community partnerships to reach underserved populations through trusted settings such as barbershops. This study was implemented in a preclinical setting to reach individuals who may not have accessed the healthcare system and address disparities that prevent patients from even seeing a provider. The trial was a three-arm randomized controlled study of 731 Black men aged 50 years and older who were recruited from New York City barbershops and randomized to receive either patient navigation for colorectal cancer (CRC) screening, motivational interviewing for hypertension control, or both. Participants receiving telephone-based navigation were more than twice as likely to complete CRC screening within six months compared to those receiving only motivational interviewing for hypertension control (17.5% vs. 8.4%, P<0.01) (21). By meeting patients where they are, this preclinical community-based model successfully reached men who often lacked insurance, regular healthcare access, or trust in medical institutions.

Overall, these studies illustrate that patient navigation serves as a critical intervention for reducing health disparities by addressing barriers across multiple levels of influence. By integrating navigation across both medical and community settings, populations that have historically been excluded from timely or equitable care can be reached. As our healthcare system continues to evolve, it is crucial to expand patient navigation programs to enhance their efficiency and coordination and improve how we measure outcomes to ensure continued meaningful impact.

Navigation models in serious illness & palliative care

Given the power of patient navigators to reduce disparities, improve access to care, and enhance patient outcomes, various navigation models have expanded across the care continuum and global healthcare settings to address gaps in serious illness and palliative care through lay, professional, and hybrid approaches. This section highlights examples of several effective and ineffective models to explore commonalities and differences as summarized in Table 2.

Table 2

Summary of patient navigator interventions

Author [year] Study design Patient population Sample size Navigator type Intervention characteristics Main findings
Phillips et al. [2011] (20) Randomized controlled trial Women aged 51–70 years in a hospital-based primary care practice in Boston, Massachusetts 3,895 women Lay patient navigators with experience caring for diverse patient populations and knowledge of existing local health systems 3 phone calls over 2 weeks followed by 2 reminder letters if no contact was made were sent to women whose last mammogram was >18 months prior; navigators integrated into the primary care team and access to radiology scheduling inquired about individual barriers to accessing care Improved mammography adherence after 9 months
Cole et al. [2017] (21) 3-arm randomized controlled trial Black men, aged >50 years with uncontrolled hypertension recruited from New York City barbershops 731 participants CHW 2 or more phone sessions with periodic follow-up calls from CHW including brief educational session followed by readiness assessment and inquiry regarding logistical and psychosocial barriers; this was in comparison to motivational interviewing for blood pressure control by a trained counselor (control group) or both interventions CHW navigation groups demonstrated improved colorectal screening at 6 months
Rocque et al. [2016] (22) Descriptive analysis and implementation study Medicare primary fee-for-service beneficiaries aged 65 years or older with a cancer diagnosis in Alabama, Georgia, Florida, Mississippi, and Tennessee 8,787 patients Lay patient navigators with a bachelor’s degree Navigators integrated into healthcare teams utilized care maps for workflow guidance and navigation activities, conducted distress assessments, and integrated a software platform for documentation and assessment/intervention prompting High reported patient satisfaction; reduced Medicare costs and healthcare utilization (decreased emergency department visits, hospitalization and intensive care unit admissions)
Sedhom et al. [2021] (23) Prospective feasibility study Advanced solid organ cancer (stage IV or III with a palliative performance score <60%) 12 patients CHW Comprehensive CHW assessment of multiple palliative care domains and social determinates of health with associated patient education and iterative patient needs assessment High 3- and 6-month retention; improved reported symptoms and psychological distress; improved advance care planning documentation and palliative care referrals
Fischer et al. [2018] (24) Randomized clinical trial Latino adults with advanced cancer in Colorado 223 patients Bilingual bicultural lay patient navigator At least 5 home visits from bicultural patient navigators and culturally tailored educational packet Improved advance directive documentation; no change in pain management or hospice use
Fischer et al. [2024] (25) Randomized clinical trial Latino patients with serious noncancer illness in Colorado 209 patients Bilingual bicultural lay patient navigator At least 5 home visits from bicultural patient navigators and culturally tailored educational packet Improved advanced care planning and increased hospice use; no change in quality of life, pain, or symptom burden
Dionne-Odom et al. [2022] (26) Randomized clinical pilot study Family caregivers of African American and/or rural dwelling patients with newly diagnosed stage III/IV solid-tumor cancer 63 family caregivers Palliative care lay patient navigators 6 weekly telehealth coaching sessions plus monthly follow-up meetings to review stress management skills, self-care, getting help, staying organized, and future planning High acceptability and satisfaction; improved caregiver anxiety and depression
Hanson et al. [2014] (27) Pre-post study design African American patients with advanced cancer or other disease 88 organizations consisting of 130 volunteers; 25 patients Community volunteers Volunteers underwent 3–6 hours of training and received advance care planning tools and region-specific information on pain management/palliative care providers, hospice agencies, and community care support services; patients were matched with teams of 3–10 volunteers and received community-based practical, emotional, and spiritual support Increase communication about cancer care needs; increased hospice awareness; no change in quality of life
Soto-Perez-de-Celis et al. [2021] (28) Randomized clinical trial Adults with newly diagnosed metastatic cancer in Mexico City 134 patients Psychologist with training in patient navigation and palliative care Creation of personalized intervention plan to address health care access barriers, prognostic understanding, treatment goals, medical decision-making, and advanced care planning; weekly telephone follow-ups Improved advanced care directive completion and pain management; no difference in quality of life
Van den Block [2020] (29) Cluster-randomized clinical trial Adult nursing home residents 78 nursing homes across 7 European countries Nursing home staff Train-the-trainer approach to teach palliative care principles in advance care planning, needs assessment, care coordination, pain and depression interventions, care in the final days of life and after death to nursing home staff No difference in comfort in last week of life; improved staff knowledge of palliative care
Temkin-Greener et al. [2018] (30) Randomized 2-arm controlled trial with difference-in-difference analysis and nonrandomized second control group to assess placebo effect Residents of New York State nursing homes 25 nursing homes completed randomized trial; 609 nursing homes in the non-randomized group Gero-palliative care nurse practitioner and nursing home staff 2-month team development and staff training with nurse practitioner who rounded with team; 8 months as needed coaching by nurse practitioner Reduced in-hospital death and depressive symptoms; no difference in pain or hospitalizations
Larson et al. [2023] (31) Exploratory mixed-methods participatory action research design Latino patients with cancer in North Carolina 15 community leaders; 35 patients Bilingual Latino community leaders 10 hours of palliative care training for community leaders led by palliative care nurses followed by monthly online booster sessions; average of 3 patient telephone calls by community leaders Improved advanced care planning; no significant differences in physical or emotional symptoms
Bekelman et al. [2018] (32) Single-arm mixed-methods prospective feasibility clinical trial Patients with advanced cancer receiving care at a Colorado VA Medical Center whose Oncologist would not be surprised if the patient died in the subsequent year 1 navigator; 9 patients Volunteer Veteran patient navigator and social worker 5 planned volunteer in-person or phone visits with patients guided by an intervention manual to educate patient on 3 palliative care domains (advance care planning, pain/symptom management, and hospice care) and emotional support; social worker visits for psychosocial care for patients meeting the distress thermometer threshold or with repeated distress problems reported Improved advance care directive documentation; positive patient perception of intervention; limited feasibility due to high proportion of patients in hospice or palliative care, low baseline distress, high functional status, and loss to follow-up
Bekelman et al. [2024] (33) Single-blind, 2-group, multisite randomized clinical trial Outpatient VA patients in Colorado and Washington with COPD, heart failure, and interstitial lung disease at risk of hospitalization or death 306 patients; 177 with COPD, 67 with heart failure, 49 with COPD and heart failure, and 13 with interstitial lung disease Nurse and social workers 6 phone calls with a nurse for symptom management; 6 phone calls with a social worker to provide psychosocial care Improved patient reported quality of life, COPD health status, heart failure health status, depression, and anxiety at 6 months
Pesut et al. [2020] (34) Pragmatic prospective single-arm, multisite pre-post intervention study and mixed-method evaluation Older patients living with chronic illness that could reasonably lead to death within the next year and their families 49 patients, 18 family members, 38 volunteers Hospice society volunteers from 8 sites in Canada and nurse navigators 14 hours of volunteer training followed by monthly coaching sessions; biweekly patient visits in-person or by phone for 12 or 18 months Patients and volunteers were highly satisfied with the intervention; no change in quality of life
Miranda et al. [2024] (35) International multisite pragmatic randomized controlled trial and embedded mixed-method evaluation Older adults with cancer and declining health in 6 European countries Aim to enroll 489 patients over 1 year Community volunteers trained by local organizations In person home visits every 2–3 weeks to assess patient needs, identify barriers, provide emotional support, advocacy, and encouragement and help with technology use Results pending

CHW, community health worker; COPD, chronic obstructive pulmonary disease; VA, Veterans Health Administration.

Lay patient navigator models

One example of a successful lay navigation model for geriatric oncology patients is called the Patient Care Connect Program (PCCP) which was implemented across 12 associated clinical cancer sites in the southern U.S. Navigators were hired independently within each different community and went through a training consisting of a mix of self-paced web-based modules, in-person skills workshops, and phone-based booster sessions covering topics of basic and advanced navigation, addressing pain, fatigue, and functional mobility, as well as advanced care planning (ACP). Lay community navigators used navigation software, care maps, and a comprehensive distress assessment to assist with patient needs. Patients who requested assistance or scored a 4 or greater on the distress assessment were contacted via phone, mail, or seen in person by the navigator at least monthly while those with lower distress scores were contacted every 3 months. Eighty-three percent of patients reported high satisfaction scores with 89.5% of patients claiming they would recommend this intervention to others (22). Given this model’s focus on oncology Medicare fee-for-service beneficiaries aged 65 or older, it was one of three programs awarded a Health Care Innovation Award from the CMS. On further analysis, this program was shown to reduce the average cost in the last 30, 90, and 180 days of life as well as number of hospitalizations and emergency department visits. It also increased the use of hospice care in the last two weeks of life. Of the three award winners, this navigation program had the strongest impact on quality-of-life care, healthcare utilization and spending measures when compared to a community oncology medical homes model (COME HOME) and patient-reported outcomes survey for palliative care referrals (CARE Track) (36). These findings emphasize the clinical impact and importance of such navigation programs.

Several lay navigator models have successfully supported underserved communities and reduced inequities in patient navigation and palliative care. Before implementing such interventions, researchers assessed key stakeholder attitudes to better understand community needs and inform culturally relevant program design. Monton et al. [2024] interviewed African American cancer patients and their caregivers, who, despite limited awareness and understanding of palliative care, demonstrated an overall positive attitude towards integrating CHWs as lay patient navigators. Patients and caregivers felt that CHWs should demonstrate qualities of kindness, patience, positivity, interpersonal skills, adequate training, and knowledge about relevant topics such as insurance plans. In addition to connecting patients with palliative care and providing patient navigation services, they felt that having a community member who was integrated into their care team that they could relate to and trust would be one of the major benefits of such an intervention (37). Additional stakeholder interviews with oncologists, healthcare administrators, and CHWs revealed similarly positive attitudes. These stakeholders felt that CHWs could help provide education and clarity regarding the differences between palliative care and hospice, assist with culturally competent communication and information processing for patients, improve timely access to palliative care and available resources, and enhance the therapeutic relationship by empowering patients to engage in their care and discuss palliative care with their providers. They also reiterated the importance of CHW integration into the community and familiarity with the history, culture, and norms of the people they serve (38).

Based on these insights, the researchers developed a CHW intervention implemented at three clinical sites in attempt to improve access to palliative care for African American patients with advanced (stage III/IV) solid organ cancer and palliative performance score of <60%. Each CHW underwent training via a combination of synchronous and asynchronous modules incorporating roleplay, motivational interview training, and peer-based discussions regarding topics in palliative care, oncology, patient navigation, and health disparities. Patients initially met in-person with the CHW either in their own home or clinical setting. Semi-structured interviews informed individualized action plans that were enacted through a series of weekly phone calls and five CHW visits. This model demonstrated a high retention rate of 75% at three months and 66% at six months. Patients experienced improved symptom burden with trends toward improved psychological distress and depressive symptoms, increased ACP documentation, palliative care referral, and hospice use at end of life (23).

A similar model of a palliative care-focused lay navigator intervention was implemented for older Latino patients with advanced cancer in Colorado. These researchers also started by collecting input from a community-academic advisory panel and focus groups to develop an intervention incorporating Latino values such as “familia” (the importance of family), “confianza” (trust), and “personalizmo” (the importance of personal message and connection). Lay bilingual and bicultural navigators who lived in the community and had a background in health were trained through extensive role-play to become a “guia” (guide), terminology chosen to represent “a guide accompanying a person through the last phase of their life journey” (15,24). Lay navigators, or guias, conducted five patient home visits over the 3-month study period to address issues related to ACP, pain and symptom management, and hospice utilization. They were also available by phone and to visit patients in the hospital or clinic. At the end of this study, patients experienced increased rates of ACP and improved physical symptoms. However, there were no clear changes in quality of life, pain management, or hospice use (24). This intervention was subsequently offered to a population of Hispanic patients with serious noncancer illnesses. While quality of life measures and pain management remained unchanged, these patients not only experienced an improvement in ACP, but they also had increased hospice utilization (25).

Another example of a lay patient navigator model attempting to reduce disparities was implemented through a randomized controlled trial in Alabama titled Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone. This study aimed to pair African American and rural-dwelling patients with advanced solid organ cancers and their caregivers with lay navigators trained by palliative care clinicians. In addition to six weekly in-person visits, this model uniquely incorporated monthly telehealth coaching sessions for 24 weeks focusing on skills in stress management, self-care, obtaining help, staying organized, and ACP. This intervention proved effective in reducing mean hospital anxiety and depression scores and appeared acceptable by patients with average ratings of 9.4/10 for likelihood of recommending the program to others. While this program did not meet the feasibility goal of an 80% completion rate, the authors attributed this to the impact of coronavirus disease 2019 (COVID-19) and the patient stress of navigating both COVID-19 precautions and cancer care (26,39).

Additional researchers have taken a different approach to lay patient navigation by creating volunteer support teams called Circles of Care. In this model, church leaders and health ministries were recruited as health advisors to build teams of additional volunteers from community organizations or individual social networks in support of African American patients with cancer. Team leaders attended a one-day training session, while team member volunteers attended a three-hour session. In total, 88 organizations participated and 80% of volunteers remained active at two months. Volunteer teams provided patients with practical support, such as providing meals, running errands or completing household tasks, spiritual support through fellowship and prayer, emotional support through visits and calls, and quality of life support through shared hobbies and helping patients attend activities outside the home. The number of unmet needs decreased, patients were more likely to have communicated with someone about their cancer care needs, and patients demonstrated an increased awareness of hospice. However, there were no observed changes in awareness of palliative care, pain specialists or other supportive care specialists, and no change in health-related quality of life was observed (16,27).

Professional navigator models

In contrast to these lay navigator models, several groups have implemented programs focused on harnessing the skills of professional navigators. A group in Mexico City, for example, conducted a randomized controlled trial in patients with a recent diagnosis (6 weeks or less) of metastatic solid tumors. A psychologist trained in both palliative care and patient navigation worked with an interdisciplinary team of oncologists, pain and palliative care specialists, and physical therapists to create individualized intervention plans based on patient questionnaires. This psychologist navigator met with patients during clinic visits to explore barriers to care, assess prognostic understanding, and support medical decision-making. A second visit was scheduled to discuss ACP, which was subsequently followed by weekly phone calls. Using this model, researchers identified key barriers to care, most commonly financial constraints, followed by beliefs associated with cancer and treatment, transportation challenges, fear, and distance to the treatment center. This intervention effectively increased the implementation of all recommended interventions, the rate of advanced directive completion, and improved pain severity. This study demonstrated relative feasibility with a 75% completion rate; among the 16 patients who did not reach completion, 14 were due to death and only two were lost to follow-up. However, the generalizability and sustainability of such a model was not assessed and may be more limited given the time intensive work and cost of the single professional navigator (28).

In various parts of the world, some have attempted to implement navigation models within nursing homes. The Palliative Care for Older People (PACE) cluster-randomized clinical trial, for example, used a train-the-trainer model to educate nursing home staff from seven different countries, half of whom were nurses and all of whom had a mean of 15 years of experience in direct patient care. Staff education included ACP, patient needs assessment, care coordination within multidisciplinary teams, delivery of high-quality care focusing on pain and depression, care in the last days of life, and care after death. While staff knowledge regarding primary palliative care principles appeared to improve, this model did not demonstrate a significant clinical impact on the primary objective measure of comfort in the last week of life. Authors postulated that perhaps this objective was not the most appropriate outcome for measuring intervention effectiveness. They also commented on the complexity of the intervention and nursing home setting, in which staff turnover rate can be high, and the rigid nature of the intervention being implemented across multiple geographic settings, as potential reasons for the lack of effectiveness (29). These findings were reflected in another study attempting to implement palliative care in nursing homes in New York. Facilities varied in their ability to adopt and sustain new care practices, impacting intervention effectiveness (30). Such results thus highlight the importance of understanding the complex multifaceted settings in which these various models are being applied and the need to understand stakeholder perspectives and allow for program customizability for successful implementation.

Hybrid lay and professional navigator models

Several groups have also attempted to combine the use of lay navigators with professional navigators. For example, Larson et al. [2023] recruited 15 Latino community leaders to complete a 10-hour training program led by palliative care nurses. These lay health advisors subsequently delivered information on home symptom management and ACP over an average of three phone calls per patient, with nurses serving as additional resources for advisors. This intervention resulted in improved ACP engagement with trends toward physical and emotional symptom improvement (31).

Bekelman et al. [2018] devised another model of peer and professional navigation called “Vets Helping Vets” for veterans with advanced cancer whose oncologist reported the possibility of death in the subsequent year. In this model, volunteer veterans who had received care through the Veterans Health Administration (VA) and worked as a volunteer driver, were trained in motivational interviewing, communication techniques, conflict resolution, professional boundary setting, self-care, ending therapeutic relationships, ACP, palliative care, and hospice services taught by the co-investigator and social worker. The volunteers met with participants for five planned visits, usually in the infusion clinic or by phone. At the start of each visit, a distress thermometer assessment was conducted to help guide the focus of the visit, which was typically centered around educating patients on symptom management, ACP, and hospice care. Patients who marked a problem on the assessment more than once were then scheduled to meet with the social worker who provided psychosocial care targeting depression, manualized psychotherapy, and ACP. While this model increased the number of advanced directives completed and patients reported high satisfaction, this study did not meet the predefined enrollment or retention rates. The authors found that many patients were either already receiving palliative care or hospice services or had low distress and good performance status at baseline, which likely contributed to the lack of feasibility (32).

Bekelman and colleagues subsequently revised their navigation model to create the Advancing Symptom Alleviation with Palliative Treatment (ADAPT) program. In this design, they focused on the use of a combination of professional navigators to address the needs of patients with chronic obstructive pulmonary disease (COPD), interstitial lung disease, or heart failure who were at high risk of hospitalization or death. Each patient received six phone calls from a nurse navigator to assist with symptom management and healthcare navigation as well as six phone calls from a social worker who provided psychosocial support. Nurses and social workers met weekly with patients’ primary and palliative care providers to discuss patient needs. At six months, patients demonstrated improved quality of life assessment scores, COPD and heart failure health status, and anxiety and depression (33,40-42). Qualitative analysis also revealed improved patient engagement and agency. Unlike most palliative care navigation models that are rooted in cancer care, this model was one of only a few studies assessing and demonstrating benefits by providing similar services to patients with other serious noncancer illnesses. Additionally, it demonstrated that telehealth models may also be effective in improving care for certain populations.

Pesut et al. [2017] constructed a program which included a more extensive integration of patient care with both lay and nurse navigators to treat patients aged 55 years and older with any advanced serious illness (including both cancer and noncancer diagnoses) living in rural areas of Canada. This group recruited seven community volunteers with at least one year of volunteer experience to participate in a three-day training workshop that had undergone several iterations of piloting and development (43). Volunteers then participated in mentoring meetings with nurse navigators every six weeks. Patients initially met both the volunteer and nurse in a joint visit. This was followed by home visits or phone calls by the volunteer every 2–3 weeks and nursing visits every 3 months. The results of the pilot studies demonstrated both high patient and volunteer satisfaction and acceptability with minimal attrition. Reported benefits included improved confidence in asking for help, perception of having someone knowledgeable and available, perception of having back-up available, aiding in contextualizing experiences, helping make difficult experiences more livable, raising awareness of available resources, and helping patients die in their preferred place of death. However, with this increased involvement, patients did report difficulty in finding time to meet amidst other appointments (44,45).

Based on this pilot data, this program was further expanded and developed into the Navigation-Connecting, Accessing, Resourcing, and Engaging (Nav-CARE) intervention. Implementation of this intervention at eight rural sites over a 12-to-18-month period revealed similarly high patient satisfaction with additional benefits of assistance in negotiating the social aspects of healthcare, increased personal connection and support, access to cost-effective resources, improved confidence in medical decision-making, and reprieve for family caregivers. However, in this study, they struggled with volunteer attrition (34). Subsequent studies using various implementation science frameworks such as the Consolidated Framework for Implementation Research and integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) found the Nav-CARE model to be feasible, acceptable, and easy to use. These studies identified potential barriers to implementation such as poor organizational readiness for implementation, highlighting the importance of establishing relationships with primary care and hospice providers to increase understanding of Nav-CARE. Potential facilitators identified included the alignment of Nav-CARE with organizational priorities, organizational capacity and structural mechanisms to integrate Nav-CARE into current practices, presence of a volunteer coordinator champion, training of volunteer navigators with a plan for continued mentorship, and regular sustainability planning meetings (46-49). As a result of over 15 years of dedicated research, this group is now working to adapt, implement, and evaluate a version of the Nav-CARE program in older people with cancer in six different countries in the European Union (EU) including Belgium, Ireland, Italy, the Netherlands, Poland, and Portugal via the EU NAVIGATE randomized controlled trial (35). This work provides an excellent example for future researchers aiming to create expansive patient navigation programs through rigorous scientific and iterative development, adaptation, evaluation, and implementation processes.

Cross-model themes and lessons

It is evident that a variety of approaches have been used to expand access to palliative care through patient navigation. Although some models have demonstrated greater effectiveness and undergone more extensive evaluation, no single model has emerged as universally superior. While many interventions share common goals, specific aims and outcomes may differ. A scoping review recently published by Yee et al. [2025] found that interventions aimed at improving end-of-life care for racial and ethnic minority patients with cancer were most effective when they integrated cultural values, trusted community figures, and addressed language barriers. They found that for African American patients, faith-based models were particularly effective, while family-centered bilingual navigation improved outcomes for Latino patients. Barriers included resource constraints, recruitment and retention, as well as cultural and trust issues. Common facilitators included family-centered approaches and involvement of trusted community leaders such as pastors or CHWs (50). These findings align with those of Larson et al. [2023] who found that the most effective recruitment strategy included personal networking within the community and in-person referral follow-up (31). The extensive work conducted by Pesut and colleagues demonstrated that all intervention personnel should be supported by culturally adapted training and resources. They identified key components of effective navigation intervention including social connection, engaging clients in what is most meaningful to them, identifying patient needs, providing culturally appropriate resources, patient advocacy, embedding navigators within local organizations, and support from community stakeholders (35). These themes and implementation insights are critical for guiding future development, implementation, and expansion of palliative care navigation programs within communities.

Role of patient navigation in improving palliative care outcomes and quality of life

Patient navigation has emerged as an essential component of comprehensive cancer care, helping patients overcome barriers to timely diagnosis, treatment, and follow-up. While evidence supports its effectiveness in increasing screening rates and reducing time to diagnosis and treatment, the models outlined above highlight its potential role in improving palliative care outcomes and quality of life (51). The integration of navigation through the cancer continuum allows for earlier introduction of palliative principles, ensuring that patients receive symptom management, psychological support, and guidance on care preferences from the time of diagnosis rather than only at the end of life (52).

Emerging evidence indicates that patient navigation can positively influence several important outcomes within palliative care and end-of-life care. Patients receiving navigator interventions are more likely to engage in ACP, document their healthcare wishes, and have timely referrals to hospice (53). These patients also tend to experience less aggressive medical care in their final days, reflecting more goal-concordant and patient-centered decision making.

Although patient navigation has demonstrated benefits such as increased ACP, improved hospice referrals, and more goal-concordant care at the end of life, its impact on patient-reported quality of life is variable across studies (51-53). One explanation proposed is that lay navigator models often provide low-intensity, nonclinical support and therefore may not influence symptom control, which is central to specialty palliative care. Nonetheless, they play a valuable “pre-primary palliative care” role by empowering patients to discuss goals of care, symptom concerns, and future planning with their clinicians (53). Through these efforts, navigators help normalize palliative care conversations, enhance patient autonomy, and ease caregiver burden. To achieve meaningful improvements in quality of life, however, navigation should be embedded within collaborative, team-based models that integrate clinical and nonclinical navigators with palliative care specialists, ensuring seamless, patient-centered support as needs evolve across the illness trajectory (53). More evidence is needed on navigation in palliative and end-of-life care, including integration into palliative pathways, impact on symptom management and communication, and the required training. Strengthening this base will clarify how navigation can improve quality of life, promote timely palliative care, and advance equitable, value-based care.

Future directions

The sustainability of patient navigation programs depends on shifting from inconsistent grant-based funding to stable and reliable reimbursement models. Unfortunately, the federal approach to navigation has historically relied on grants that vary significantly by administration and are vulnerable to shifting policy priorities. One example of this inconsistency occurred in 2024, when the Biden-Harris administration awarded $100 million to navigation programs for the Affordable Care Act (ACA) (54). The following year, there was a reduction in funding for the ACA navigator program to just $10 million (55). This represents a nearly 90% cut to the ACA navigator program.

In contrast, the CMS introduced, for the first time in 2024, a reimbursement-based model for navigation services through the Physician Fee Schedule (PFS) (56). Under this model, Principal Illness Navigation (PIN) services provided by certified or trained personnel working under the supervision of a physician or other qualified healthcare provider are eligible for billing (56). Historically, the absence of reimbursement pathways forced navigation programs to depend on grants or institutional support, limiting their scalability and long-term sustainability. A 2019 national survey of 750 patient navigators and program administrators affiliated with oncology navigation programs found that most respondents reported program funding through operational budgets (57). The study aimed to examine the relationship between program characteristics and measures of sustainability, which they determined were length of program existence, use of operational funds, and participation in alternative/merit-based payment models. They found that respondents from larger and academic institutions were more likely to report multiple indicators of sustainability. These findings suggest that as navigation becomes increasingly recognized as a reimbursable service, through mechanisms such as the new CMS PIN codes introduced in the PFS, smaller or community-based programs may be able to reduce their dependence on grants, which they have historically relied on (57). This policy shift paves the way for broader implementation, workforce growth, and continued innovation in patient navigation.

As the evolving landscape of artificial intelligence (AI) continues to unfold, the next pivotal frontier for patient navigation lies in strategically integrating these technologies to enhance efficiency, scalability, and outreach. AI-driven tools can complement navigators by automating routine tasks, aiding in identifying high-risk patients, and reducing the time needed to find resources for patients, such as transportation or financial programs. A 2024 study conducted surveys and interviews with patient navigators to identify gaps and propose strategies for the future (19). The study found that about 80% of navigators did not use any software or digital tools in their workflow. The main barriers navigators reported that could be alleviated by technology in the study were: difficulty with scheduling appointments (63.0%), limited health literacy (51.9%), and lack of health insurance (44.4%). Beyond being a tool for navigators, AI can be used proactively to find patients who would benefit from patient navigation services. Machine-learning tools that analyze social determinants of health in electronic medical records can help detect high-risk patients who might otherwise go unnoticed (58). In summary, AI is not a replacement for human navigators but a strategic adjunct. One that enhances efficiency, broadens reach, and reduces administrative burden of non-patient-facing tasks. The future of patient navigation integrates AI-driven tools paired with reimbursement models that support workforce growth, equity, and innovation in serious care illness.


Conclusions

Patient navigation helps people with serious illness find the right care at the right time. It grew from a simple idea to remove barriers that keep people from getting help and now includes programs across multiple health settings and disease etiologies, including serious illness and palliative care, led by community members and trained clinicians. The best models respect culture and language, build trust with patients and families, stay connected to local resources, and rely on social connection, advocacy, and support from community and health-system stakeholders. When navigators work this way, care becomes more accessible, coordinated, and aligned with patient values.

Lasting impact depends on reliable funding, clear roles and training, and supportive organizational infrastructure. Technology can enhance efficiency but should not replace the human relationship at the center of navigation. Looking ahead, programs should be refined and evaluated across conditions and settings with equity-focused outcomes, making navigation a standard part of serious illness care and a practical way to close longstanding gaps.


Acknowledgments

None.


Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-140/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-140/prf

Funding: This work was supported by the National Institutes of Health under Award No. T32CA122061.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-140/coif). F.M.J. serves as an unpaid editorial board member of Annals of Palliative Medicine from February 2026 to January 2028. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.


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Cite this article as: Wylie JA, Diaz C, Sebikali-Potts AS, Johnston FM. The evolving role and impact of patient navigators in serious illness care: a narrative review. Ann Palliat Med 2026;15(3):45. doi: 10.21037/apm-2025-1-140

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