Background What are the perspectives of palliative care patients living in an urban area in Malaysia on advance care planning ? Exploratory study to shape the concept of advance care planning according to local understanding and needs.
Methods This is a qualitative study, using semi-structured interviews with a purposive sampling of fifteen participants. All interviews were conducted in participants’ homes. Interviews were audio-taped, transcribed verbatim and analysed. Thematic analysis was done through coding, theoretical sampling and finally integrating it into a conceptual framework.
Results All participants did not know what advance care planning was but was receptive to the idea of planning ahead. The main theme emerged from this exploratory qualitative study was individualised non-medical planning. This was shaped by factors such as participant’s spirituality, prior health-related experiences, perceived psychosocial burden and information received on diagnosis, prognosis and availability of resources.
Conclusions The concept of advance care planning is foreign to palliative care patients living in Malaysia. Advance care planning is not seen as just purely medical-decision planning but it is seen as an interplay between psychosocial and relational factors. Palliative care patients in Malaysia vary considerably with regards to the extent to which they wish to engage in advance care planning discussion, but at the same time, may face barriers from healthcare professionals with poor communication skills. Awareness and education on advance care planning for both healthcare professionals and palliative care patients will eventually lead to improvement in end-of-life care planning.
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