Navigating End-of-Life Choices: The Essential Role of Nurses in Advance Directives

Abbreviations

The following abbreviations are used in this manuscript:

ACP Advance Care Planning

AD Advance Directive

GI Gastrointestinal

EOL End of Life

Introduction

Cancer progression significantly impacts patients and their families, often resulting in uncontrolled symptoms, the need for advance care planning (ACP), psychosocial and spiritual support, and complex treatment decisions [1-4]. Additionally, understanding prognosis and preparing for end-of-life (EOL) transitions are essential aspects of patient-centered care [5,6]. ACP ensures that patients receive medical interventions aligned with their values, goals, and preferences [7-9]. Despite the well-documented benefits of advance directives (ADs), completion rates remain low, with only one-third of adults having them in place [10-12].

Patients and families should be empowered to communicate their EOL treatment preferences, regardless of the care setting [13]. Many patients in the terminal phase of illness are not enrolled in hospice or palliative care, underscoring the need for healthcare professionals—particularly nurses— to facilitate these discussions across various healthcare environments [14-16]. Nurses are integral to the assessment of patient and caregiver understanding of diagnoses, prognoses, and treatment options [17-19]. Effective communication strategies equip nurses to lead these essential conversations, ensuring that patients' voices are heard and respected in their care decisions [20-22].

Identifying and addressing patients’ goals of care in advanced cancer settings is critical for delivering high-quality healthcare [23-26]. However, multiple barriers hinder Advance Directive completion, including late-stage discussions, uncertainty regarding disease trajectory, complex family decision-making dynamics, and communication challenges between patients and providers [27,28]. Despite significant research on ACP, progress in overcoming these barriers remains limited.

Background

The growing population of older adults, particularly those over 65, has increased the demand for effective EOL communication between patients and healthcare providers [29,30]. Racial and ethnic disparities further complicate this issue. Studies indicate that White patients are more likely to discuss treatment limitations and complete ADs than Black and Hispanic patients [31-34]. Additionally, non-White patients are more likely to die in acute care settings and less likely to engage in EOL planning [35-38].

Beyond race and ethnicity, socioeconomic and cultural factors also influence EOL decision-making [39]. Mistrust of the healthcare system, religious and spiritual beliefs, literacy levels, and previous experiences with medical care impact patients’ willingness to engage in ACP [40-42]. Additionally, the perception that ACP discussions are relevant only to those with terminal illnesses contributes to low participation rates [43,44]. Addressing these disparities requires culturally responsive, patient-centered interventions that prioritize trust-building and health education.

Given that many patients receive EOL care outside of specialized palliative or hospice settings, nurses across all specialties must be well-versed in assessing EOL preferences. Their role in patient advocacy, education, and communication uniquely positions them to facilitate ACP conversations, ensuring that care delivery aligns with patient values and preferences.

Methods

Our team conducted a study to examine factors that predict advance directive completion of stage 4 solid tumor lung and GI cancer patients. The purpose of the original study was to understand how antecedent and process factors play a role in Advance Directive completion. This was a cross-sectional, descriptive, correlational study utilizing secondary data analysis. We examined how stage 4 solid tumor lung and GI cancer patients (n=235) and their caregivers (n=235) their decisions regarding advance directive completion. We postulated that caregiver factors influenced the patient to complete an advance directive. We examined patient and caregiver variables to understand their influence on patient EOL decision-making. The purpose of this article is to highlight the results of disparities in AD completion and make recommendations for clinical implications.

Results

Among the study cohort, 67% (n=157) of patients had documented ADs. However, significant disparities were evident. Of the patients with ADs, 28% (n=44) were non-White, including 24% African American, 50% Asian, and 50% Hispanic participants. Advance Directive completion rates varied by income: 48% among those earning ≤$20,000, 52% among those earning $21,000–$49,999, and 56% among those earning $50,000 or more. Logistic regression analysis identified age and race as significant predictors of Advance Directive completion, with older age positively associated with completion (OR = 1.09) and non-White patients exhibiting a 36% lower likelihood of Advance Directive completion compared to White patients. These findings highlight disparities in Advance Directive completion rates, emphasizing the necessity for targeted interventions to improve engagement in ACP among historically underserved populations. See Figure 1.

Figure 1: Advance Directive Completion vs. Study Sample Distribution

Discussion of Clinical Implications

The American Nurses Association (ANA) and the Hospice and Palliative Nurses Association (HPNA) emphasize the critical role of nurses in ACP facilitation [16,45,46]. Despite the availability of ADs for adults over 18, only a minority complete them, with older adults more likely to engage in ACP than younger populations. Racial and ethnic disparities persist, reinforcing the need for structured interventions that promote ACP engagement across diverse patient groups. Nurses must integrate discussions on EOL preferences into routine care while employing culturally sensitive communication strategies [47-49]. See Figure 2.

Figure 2: Clinical Implications

Expanding Nurses' Role in ACP and AD Completion

Nurses must proactively assess patients' familiarity with ADs and provide tailored education to facilitate their completion [7]. This process involves initiating open-ended, nonjudgmental discussions that normalize ADs as a fundamental aspect of comprehensive healthcare planning. Many patients, particularly those from underrepresented populations, lack exposure to ACP or misunderstand its purpose [50]. By addressing misconceptions, nurses can play a pivotal role in fostering informed decision- making.

Assessing Patient Readiness and Knowledge

To effectively guide patients, nurses should assess their level of understanding and comfort with ACP discussions using the following inquiries:

• “Have you considered documenting your preferences for medical care in case you cannot communicate them in the future?”

• “Do you know what treatment options, including life- sustaining interventions, are available to you?”

• “Have you had conversations about your healthcare wishes with your family or designated caregivers?”

Explaining the Benefits of ADs

To encourage Advance Directive completion, nurses must emphasize its advantages, such as ensuring patient autonomy, reducing family burden, aligning treatment with personal values, and preventing unnecessary or undesired interventions. Providing real-world examples can help patients contextualize the importance of ACP.

Facilitating AD Completion

Advance Directive documents can appear complex and legally intimidating to many patients. Nurses can support patients in this process by:

• Simplifying Advance Directive forms through step-by-step guidance.

• Explaining legal terms in accessible language.

• Discussing treatment preferences in alignment with patient goals.

• Encouraging family involvement in ACP discussions.

Addressing Barriers to ACP Completion

Barriers to Advance Directive completion include fear of discussing mortality, cultural and religious concerns, and distrust of the medical system. Nurses can mitigate these obstacles by:

• Creating a supportive environment for ACP discussions.

• Utilizing culturally competent communication strategies.

• Providing multilingual and literacy-friendly resources.

• Partnering with community organizations to extend outreach efforts.

Leveraging Interdisciplinary Collaboration

Nurses can enhance ACP implementation by collaborating with palliative care teams, social workers, and legal advisors. Interdisciplinary efforts ensure a comprehensive approach to Data are not available at this time due to the author not having the rights to the primary data set. completion and patient-centered care planning [51].

Future Research Directions

Although ADs are widely recognized as valuable, their completion rates remain low. Future research should explore the following:

• Evidence-based training programs for healthcare professionals in ACP facilitation.

• Policy changes integrating ACP into routine primary and specialty care.

• The role of technology and digital ACP tools in improving completion rates.

Conclusion

Nurses serve as critical facilitators in promoting ACP and ensuring patients’ EOL preferences are documented and honored. Culturally sensitive, proactive conversations regarding ACP are essential to bridging disparities in AD completion. Institutional policies must support nurses in integrating ACP discussions into clinical practice. By fostering trust, providing clear guidance, and leveraging interdisciplinary collaboration, nurses can significantly improve Advance Directive engagement and patient-centered EOL care

Author Contributions

Each of the authors had the following contributions: Conceptualization, S.A. and D.G.; methodology, S.A.; software, S.A.; validation, S.A. and D.G.; formal analysis, S.A.; investigation, S.A.; resources, S.A.; data curation, S.A.; writing—original draft preparation, S.A. and D.G.; writing—review and editing, S.A., D.G., and S.D.; visualization, S.A. and S.D.; supervision, S.A.; project administration, S.A. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Institutional Review Board Statement

Ethical review and approval were waived for this study due to the use of a secondary data analysis of de-identified data.

Informed Consent Statement

Patient consent was waived due to the work not including identified data.

Data Availability Statement

Data are not available at this time due to the author not having the rights to the primary data set.

Conflicts of Interest

The authors declare no conflicts of interest.

Disclaimer/Publishers Note

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