Understanding Awareness and Perceptions of Palliative Care: A Qualitative Study of Cancer Patients and Caregivers in New Jersey
Iman Basit, Taylor Hughes, Alyssa King, Claudia Luca, Rita Mirabelli, Ashley Montuoro, Allison Smith & M. Hamza Habib, MD
This qualitative study investigates awareness, perceptions, and experiences of palliative care among cancer patients and informal caregivers in New Jersey. Conducted in partnership with the Goals of Care Coalition of New Jersey (GOCCNJ) and the Rutgers Cancer Institute (CINJ), the research aims to inform patient-facing education, identify barriers to care, and support equitable implementation of New Jersey’s Medicaid palliative care initiative. Despite the growing recognition of palliative care as a model that improves quality of life across the course of serious illness, findings reveal widespread confusion about its purpose, with many participants initially associating it exclusively with end-of-life or hospice care.
Sixteen semi-structured interviews were conducted with patients receiving palliative services or their caregivers. Participants commonly reported entering care without a clear explanation of what palliative care entails, often leading to fear or hesitation. However, most described a significant shift in perception after experiencing its benefits—particularly symptom relief, emotional support, and improved care coordination. While many praised the attentiveness and compassion of their palliative care teams, participants also identified meaningful gaps, including logistical burdens, fragmented communication, limited access to noncancer- related services, and delayed referrals.
Caregivers expressed parallel concerns, noting the lack of structured support for their own needs and confusion about how to navigate or advocate within the healthcare system. These themes were consistent with existing literature on community-based models and underscore the need for earlier engagement, clearer messaging, and a more integrated approach to care delivery.
This paper concludes with six policy and practice recommendations to enhance awareness, streamline access, and improve patient and caregiver support. Taken together, the findings affirm the transformative potential of palliative care while pointing to actionable strategies that can strengthen its delivery and ensure it meets the needs of all individuals living with serious illness in New Jersey.