PURPOSE: To explore the experiences of hope of palliative care patients.
METHODS: A qualitative study was conducted at University of Malaya, Kuala Lumpur, Malaysia. Adult palliative care in-patients were recruited and interviewed with semi structured questions on hope. Transcripts from the interviews were thematically analyzed with qualitative data management software NVIVO.
FINDINGS: 20 palliative care patients participated in the study. The themes generated from thematic analysis were (1) The notions of hope, (2) The sources and barriers of hope and (3) The contents of hope.
CONCLUSION: Hope is an ever-present source of energy that gives people strength to carry on even in the most adverse situations. Understanding hope from the palliative care perspective may allow healthcare providers to develop strategies to better foster hope in the terminally ill.
METHOD: Publicly available data, and databases of registered palliative care services were obtained from governmental and nongovernmental sources. Google Maps and Rome2Rio web-based applications were used to assess geographical disparities by estimating the median distance, travel time, and travel costs from every Malaysian district to the closest palliative care service.
RESULTS: Substantial variations in availability, components, and accessibility (distance, time, and cost to access care) of palliative care services were observed. In the highly developed Central Region of Peninsular Malaysia, specialty care was available within 4 km whereas in the less-developed East Coast of Peninsular Malaysia, patients had to travel approximately 46 km. In the predominantly rural East Malaysia, basic palliative care services were 82 km away and, in some instances, where land connectivity was scarce, it took 2.5 h to access care via boat. The corresponding median travel costs were USD2 (RM9) and USD23 (RM114) in Peninsular Malaysia and East Malaysia.
CONCLUSION: The stark urban-rural divide in the availability and accessibility of palliative care services even in a setting that has made good progress toward UHC highlights the urgent need for decentralization of palliative care in the LMICs. This may be achieved by capacity building and task shifting in primary care and community settings.