"They don't just treat the sickness; they treat you like a whole person": What patients with pancreatic cancer want their healthcare providers to know

ObjectivePatients with advanced pancreatic cancer and their families encounter multidimensional challenges that extend beyond disease management, encompassing informational gaps, cultural barriers, and unmet psychosocial needs. Few studies have examined the perspectives of patients and their caregivers on what constitutes effective, compassionate care, especially following the peak of the COVID-19 global health emergency, a time of delayed screening and treatments, partly due to an overburdened healthcare system. The purpose of this study was to identify current gaps and factors responsible for improving quality of life among patients diagnosed with pancreatic cancer and their caregivers. MethodsThis qualitative study was conducted in 2024 and 2025 using content analysis. Semi-structured interviews of 21 adults, including patients recently diagnosed with pancreatic cancer (N=10) and family caregivers (N=11) across multiple care settings explored their experiences with pancreatic cancer diagnosis and treatment. Interviews were audio-recorded, transcribed and analyzed with MaxQDA software. Constant comparative analyses to identify major themes and subthemes were used and inductively derived codes were created to develop the conceptual model for patients with pancreatic cancer. ResultsThe analyses yielded four major themes: (1) Patient experience and medical journey were marked by frequent treatment delays; (2) Healthcare navigation and barriers included systemic delays, financial strain, and depersonalized interactions with the healthcare team; (3) End-of-life conversations and palliative care were often misunderstood, and (4) Suggestions for healthcare providers emphasized the need for a more holistic approach respecting patient agency, with timely provision of practical resources. The resulting themes fit well into an adaptation of the ARC framework. ConclusionsPatients with advanced pancreatic cancer desire care that is holistic, culturally responsive, patient centered and delivered with clarity and compassion. Using the suggested conceptual model, providers can improve experiences by aligning care with patient values, facilitating practical and spiritual needs early and integrating culturally relevant supports. Embedding these practices across the care continuum may enhance quality of life, reduce suffering, and minimize unnecessary healthcare costs among patients diagnosed with pancreatic cancer.