A recent qualitative study examined the understanding and experiences of palliative care among cancer patients and their informal caregivers in New Jersey. The research was conducted in collaboration with the Goals of Care Coalition of New Jersey (GOCCNJ) and Rutgers Cancer Institute (CINJ). Its purpose was to inform patient education, identify obstacles to accessing care, and help guide equitable implementation of New Jersey’s Medicaid palliative care initiative.
The study involved sixteen semi-structured interviews with either patients receiving palliative services or their caregivers. According to the findings, many participants began their care without a clear explanation of what palliative care involved. This often led to initial fear or hesitation, as most associated it solely with end-of-life or hospice services.
However, after experiencing palliative care firsthand, most interviewees reported a significant change in perception. They highlighted benefits such as relief from symptoms, emotional support, and better coordination between providers. Many also praised the compassion and attentiveness shown by their care teams.
Despite these positive outcomes, several gaps were identified by both patients and caregivers. These included logistical challenges related to accessing services, fragmented communication among healthcare providers, limited access for non-cancer conditions, and delays in being referred for palliative support.
Caregivers raised additional concerns about the lack of structured resources for themselves and confusion about how best to navigate or advocate within the healthcare system. These themes matched those found in previous studies on community-based models of palliative care delivery.
The authors suggest that earlier engagement with patients, clearer communication about what palliative care offers, and more integrated approaches could address some of these issues.
"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," stated the report's authors.
"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," they added.
"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," according to the study.
