When cure ends: lived experiences of palliative care among Jordanian adults with hematological malignancies

Hematological malignancies (HMs) are aggressive cancers with unpredictable trajectories, high symptom burden, and frequent intensive end-of-life interventions. Despite global recognition of palliative care (PC) as essential for life-limiting illnesses, patients with HMs - particularly in Jordan - often have limited access to timely PC. This study aimed to explore the experience of PC from the perspective of Jordanian adult patients in the terminal stage of HMs. A qualitative interpretive design which followed a phenomenological approach was used to collect and analyze data. Ten participants (aged 45-83 years) were interviewed in-depth using an unstructured approach. The results showed two main themes emerged: 'This care is far from the spirit of palliative care', encompassing subthemes such as delayed referral and missed opportunities, fragmented communication and limited emotional support, psychological distress and spiritual guilt, loss of agency and social identity; 'Living between acceptance and resistance,' which included faith as a source of strength and acceptance, resistance through hope and uncertainty, and disrupted sense of meaning and purpose; and 'Faith as an anchor amid suffering', including illness as a divine test and path to acceptance, prayer and religious rituals as sources of strength, and faith amid doubt and exhaustion. In conclusion, physical and psychosocial suffering was a dominant feature of the lived experiences of patients with terminal HMs. Despite the severity of their needs, patients often received care that lacked core elements of palliative support, leading to feelings of neglect and compromised dignity. These findings underscore the need for timely, coordinated, and patient-centered palliative interventions to ensure that individuals receive compassionate and holistic care as they approach the end of life.