The end-of-life experience of patients with rare cancers and their caregivers

Little is known about the end-of-life (EOL) experience of patients with rare cancers (PRC) or their caregivers. From September 2002 to August 2008, 618 stage IV cancer patients [195 PRC and 423 patients with common cancers (PCC)] and their caregivers participated in an interview-based cohort study. Patients were interviewed about EOL preferences, planning, medical care, and followed until death. Interviews with caregivers at baseline assessed caregiver mental and physical health; and postmortem, assessed EOL patient care. PRC were four times more likely than PCC to be receiving both radiation and chemotherapy at study entry (10.3% vs 3.3%, respectively, adjusted odds ratio 4.31, P=0.003). PRC's caregivers were more likely to report declining health (22.1% vs 15.7%, P=0.05) and marginally more likely to report using mental health services to cope than PCC's caregivers. PRC were as likely to acknowledge their illness was terminal, have EOL discussions, and participate in advance care planning as PCC. Future research should investigate terminal care for PRC and how providing care affects caregivers' physical and mental health.