Bridging Health Literacy Gaps: Developing a Standardized Protocol for Defining Common Palliative Care Terms

Key Message : Patients with non-English language preference (NELP) face cultural and linguistic barriers to palliative care. This study developed health-literacy-friendly (7th-grade-level English) definitions for 12 common terms using AI and expert consensus (≥70%). Eleven of twelve terms achieved consensus, creating a foundation for definitions and future translations to support equitable palliative communication.

Abstract:

Background:
Patients with non-English language preference (NELP) face barriers understanding medical terms, treatment options, and accessing palliative care. For example, older Asian Americans often receive more intensive end-of-life (EOL) care than their White counterparts (1,2), influenced by cultural and language factors. Translations of common medical terms often give limited attention to cultural nuances (3). Additionally, existing definitions developed by respected organizations use English at a reading level too high for broad accessibility. This project aims to develop a standardized definition and translation protocol for common palliative care terms that are health-literacy-friendly. This study is the initial step, creating evidence-based, easy-to-understand English definitions.

Methods:
We developed health-literacy-friendly definitions for 12 commonly used palliative care terms. We used Artificial Intelligence (AI) (ChatGPT-4o) and Flesch-Kincaid calculator to ensure a reading level below 7th grade. We created surveys assessing clarity and feasibility of the definitions (using five-point Likert scale) and distributed them to interdisciplinary palliative care experts at multiple U.S. medical centers. Terms were finalized if they achieved Majority Consensus (>70% of over 50 respondents selected “agree” or “strongly agree”).

Results:
Of 109 interdisciplinary team members, 52 (48%) responded: 62% physicians, 14% Nurse Practitioners, 10% social workers, 8% nurses, 4% chaplains. Median years of experience in Hospice and Palliative care was 10 years (SD 8.33 years). Consensus (≥70% agreement) was achieved for 11 of the 12 terms (92%): Advance care planning 92%, Advance Directives 90%, HealthCare Agent/Proxy 88%, Code Status 88%, Do Not Resuscitate 87%, Hospice Care 86%, Spiritual Care 84%, Cardiopulmonary Resuscitation 77%, Quality of Life 77%, Goals of Care 75%, Palliative Care 73%, Comfort Measures Only 65%.

Conclusion:
We developed a standardized protocol that vetted accessible, 7th-grade-level English definitions of key palliative care terms. These terms will help English-speaking patients and be translated into different languages to assist NELP patients.

References: 1. Jia Z, Leiter RE, Sanders JJ, et al. Asian American Medicare Beneficiaries Disproportionately Receive Invasive Mechanical Ventilation When Hospitalized at the End-of-Life. J Gen Intern Med. Mar 2022;37(4):737-744. doi:10.1007/s11606-021-06794-6
2. Yarnell CJ, Fu L, Bonares MJ, Nayfeh A, Fowler RA. Association between Chinese or South Asian ethnicity and end-of-life care in Ontario, Canada. Cmaj. Mar 16 2020;192(11):E266-e274. doi:10.1503/cmaj.190655
3. Latif Z, Kontrimas J, Goldhirsch J, Abrahm J, Warraich HJ. Top Ten Tips Palliative Care Clinicians Should Know About Working with Medical Interpreters. J Palliat Med. Sep 2022;25(9):1426-1430. doi:10.1089/jpm.2022.0091