Interlocking Poverty, Stigma, and Information Gaps Drive Hospice Exclusion for Low-Income Cancer Patients
Hospice exclusion among low-income cancer patients is not the result of a single barrier but a reinforcing web of poverty, stigma, and unequal access to knowledge that systematically limits end-of-life care choices, according to study results published in JAMA Network Open.
“We conducted a descriptive qualitative study to characterize barriers to hospice care among low-income patients with cancer,” the authors explained.
Many participants struggled to understand basic hospice concepts. Medical terms such as “palliative care” were frequently interpreted as “giving up” or “waiting to die,” reflecting gaps in health literacy rooted in limited education and unequal information systems. These deficits were compounded by poor communication with clinicians. Patients often felt embarrassed to ask questions and defaulted to passive agreement. As health care becomes increasingly digitized, low digital literacy further excluded participants from online tools and hospital platforms designed to improve access.
Stigma surrounding cancer and death emerged as a powerful deterrent. In participants’ communities, hospice care was commonly viewed as morally suspect, associated with abandoning treatment or failing family obligations. Fear of social judgment led many families into silence, avoiding open discussions about prognosis or comfort-focused care. For some, stigma was internalized, reinforcing avoidance of hospice and deepening isolation.
Economic hardship intensified these dynamics. Direct costs such as pain medications, home care, or travel for follow-up placed hospice services out of reach. Scarce resources also shaped values: when money was limited, families prioritized treatments perceived as curative, even when the likelihood of benefit was low. Weak social networks meant patients lacked advocates who could help navigate reimbursement policies or identify available services.
Despite these constraints, the study also documented resilience. Patients and families built informal support networks, relied on more educated relatives to communicate with clinicians, and gradually reframed their goals from cure to comfort. For some, hospice became acceptable only after redefining dignity at the end of life as relief from suffering and time with family.
“Advancing equitable hospice access will require integrated strategies that simultaneously promote cultural empowerment (eg, enhance health literacy and communication capacity), implement destigmatization efforts (eg, reshape societal narratives about hospice care), and coordinate structural support (eg, expand insurance coverage and social safety nets),” concluded the study authors.
Reference
Yan C, Ai J, Cao T, Jiang T. Cultural capital, stigma, class, and hospice care access among low-income patients with cancer. JAMA Netw Open. 2026;9(1):e2554797. doi:10.1001/jamanetworkopen.2025.54797
