Supporting Palliative Care Engagement for Hispanic Patients Through a Culturally Tailored Patient Navigation Model

Apoyo con Cariño (Support through Caring) is a culturally tailored lay patient navigation intervention designed to improve palliative care outcomes for Hispanic/Latino patients facing serious illness. The model was developed to address persistent gaps in pain and symptom management, advance care planning completion, and increase both hospice awareness and use among Hispanic communities. Research shows that Hispanic people often face language barriers, less culturally responsive care, and mistrust or misunderstanding of palliative care and hospice.

The program was developed using community-engaged methods, including focus groups/surveys, and collaboration with community members and clinicians who best understand the needs of Hispanic patients and families. According to project leaders, the intervention was intentionally grounded in cultural values such as familismo (devotion to family), personalismo (interacting with others through a warm, caring, personal relationship), and confianza (building trust), recognizing that “one-size-fits-all rarely works.” These values shaped how patient navigators approached education, relationship-building, and support.

The Apoyo con Cariño model was evaluated across three related studies. The initial pilot at Denver Health included 64 Hispanic adults with serious life-limiting illness, including both cancer and noncancer conditions (e.g., heart and lung disease, renal failure, and liver disease). Participants were screened using the CARING criteria. All participants received culturally and linguistically tailored educational materials, while patients in the intervention group also received up to five visits from a bilingual, bicultural patient navigator focused on pain management, advance care planning, and hospice education.

The model was later adapted for Hispanic patients with advanced cancer across three urban and five rural cancer centers in Colorado. In this American Cancer Society funded study, four lay patient navigators delivered five visits over three months to 112 patients in the intervention group. A qualitative analysis of 499 navigator visits showed that navigators did more than provide education. They helped patients and families build understanding, prepare for conversations with clinicians, identify barriers, and feel supported throughout the course of serious illness.

Finally, a multicenter randomized clinical trial took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado with self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis. Participants randomized to the intervention group (N=105) received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control (N=104) received usual care. As in the previous study, both groups received culturally tailored educational materials. While the study results showed that QOL was not improved for patients. the intervention did increase advance care planning engagement, advance directive documentation, and hospice utilization.

The Apoyo con Cariño pilot was evaluated through a randomized controlled trial and a later qualitative analysis examining how patient navigators supported patients and families in practice.

The pilot trial assessed feasibility and several palliative care engagement outcomes, including advance care planning documentation, pain management discussions, and hospice use (see additional details in the full study). Highlights below:

Pain Management and Clinical Engagement

• 79% of patients receiving navigation had a pain management discussion documented in the medical record, compared with 54% of control patients
• 76% had a pain medication prescribed, compared with 58% of control patients

Advance Care Planning

• 47% of patients receiving navigator support had some kind of advance directive documented in the electronic health record, compared with 25% of control patients
• 38% documented a medical durable power of attorney, compared with 19% in the control group
• 22% completed the study advance directive form (Rebecca Sudore’s advance directive form was used for the purpose of this study), compared with none in the control group

Hospice Use

• Hospice use rates were similar between groups - however, patients receiving navigator support had longer average hospice stays (about 42 days vs. 23 days) and were more likely to receive hospice care for at least seven days

The study was designed as a feasibility pilot and was not large enough to confirm statistically significant differences. However, more outcomes moved in a favorable direction for patients receiving navigator support.

The later qualitative analysis found that across 499 navigator visits, researchers identified nine common navigator functions:

• Activation and empowerment:
• Advocacy
• Awareness and education
• Improving access to care
• Building rapport and trust
• Providing emotional and practical support
• Exploring barriers to care
• Symptom screening
• Centering the patient and family experience

Together, these findings suggest that culturally tailored patient navigation may help improve engagement with palliative care services for Hispanic patients facing serious illness.

• A bilingual, bicultural navigator model was feasible for Hispanic patients with serious illness and advanced cancer. In the pilot study, 81% of intervention participants completed at least one navigator visit.
• Patients receiving navigator support were more likely to have advance care planning (ACP) documentation and pain management discussions recorded in the medical record
• The intervention works best when it is culturally grounded rather than simply translated. Materials and conversations reflected cultural values such as familismo (family-centered care), personalismo (relationship-based communication), and confianza (trust). For example, brochures featured images of Latino individuals, while pain management materials incorporated familia by emphasizing, “If you have your pain treated, you can care for your family.”
• Navigator support extended beyond education alone. Navigators helped patients prepare questions for clinicians, advocate for their needs, address barriers to care, and navigate emotionally complex decisions.
• Community connection mattered. Navigators who were embedded in or familiar with the communities they served were often better able to build trust and sustain engagement.

Staff required:

• Bilingual, bicultural lay or community-based patient navigators
• Physician and nurse clinical leads
• Project manager/administrative support for training, supervision, and data collection
• Site partners across participating clinics or hospitals

Training and expertise: Navigators received intensive training in palliative care concepts, advance care planning, pain assessment, myths about pain medication, hospice care, motivational interviewing, and the use of structured visit guides (a structured script developed by the principal investigator to outline the key topics for each visit, ensuring consistency across sessions). In the pilot study, the navigator completed approximately 200 hours of training before recruitment began.

Resources required: Low literacy educational materials in English and Spanish, structured visit guides or scripts, time for home or phone-based visits, travel support for rural outreach, and ongoing team supervision. The model relies primarily on low-technology resources, including printed materials and phone communication.

Barriers encountered: Common challenges included patient mistrust, confusion between palliative care and hospice, recruitment during stressful hospitalizations, and lack of a provider introduction to the program. Travel across rural areas and the emotional intensity of serious illness navigation also posed challenges. Some patients did not complete all five visits, highlighting the importance of flexible scheduling and consistent follow-up.

Key elements of the model are adaptable, including bilingual and bicultural navigators, culturally tailored education, structured visit guides, home or phone-based outreach, and a strong emphasis on family involvement and trust. The qualitative analysis suggests that these features can be implemented in both urban and rural settings.

Simultaneously, scaling the model would require thoughtful local adaptation. The intervention depended heavily on trusted relationships, community knowledge, and careful navigator selection. Building these relationships required time and sustained engagement, particularly in rural communities where outreach sometimes involved traveling long distances to connect with clinicians and community partners.

Health systems considering replication would need to assess whether they have:

• Access to bilingual, culturally grounded navigators
• Clinicians who can introduce patients to the program and support recruitment
• Capacity to support outreach in geographically dispersed communities
• Systems for supervision and emotional support for navigators working with seriously ill patients

The Apoyo con Cariño interventions were primarily supported through grant funding, including funding from the American Cancer Society and the National Institute of Nursing Research. While the model demonstrated promise, sustaining the program after grant funding ended proved challenging. Some navigator roles continued temporarily through related projects, but the broader program was not maintained through institutional funding alone. This reflects a common historical challenge for navigation models. That said, new Principal Illness Navigation billing codes were published by Medicare in 2023 and offer a new opportunity for reimbursement for navigation services (see CAPC Billing Toolkit for information on billing PIN codes).

• Build the model with community input from the beginning, not after the design is finished
• Go beyond translation. Ground materials and conversations in cultural values, family roles, and trusted communication.
• Use bilingual, bicultural navigators who know the community well.
• Prioritize warm handoffs from clinicians. Patients were much more likely to enroll when a trusted provider introduced the program. Patients were less likely to enroll when approached during stressful hospitalizations without a provider introduction.
• Use careful language when introducing palliative care. Early emphasis on “hospice” or “end-of-life care” may create fear or misunderstanding. Framing the program around “quality-of-life,” “support,” or “symptom relief” was often more effective.
• Provide strong training and emotional support for navigators. This work can be deeply meaningful but also emotionally demanding.
• Recognize advocacy as part of the intervention. Navigators help patients and families prepare for visits, ask questions, and address barriers to care.
• Invest in navigator retention and team support. Structured training, team debriefing, and ongoing supervision help sustain the workforce.
• Plan for sustainability early. Grant funding can launch innovation, but health systems need a plan for maintaining the model after initial funding ends.

Stacy M. Fischer, MD

Division of General Internal Medicine, University of Colorado Anschutz Medical Campus School of Medicine

Regina M. Fink, PhD, APRN, AOCN, CHPN, FAAN

Division of General Internal Medicine, University of Colorado Anschutz Medical Campus School of Medicine and College of Nursing

Danielle M. Kline, MS

Division of General Internal Medicine, University of Colorado Anschutz Medical Campus School of Medicine