An exploration of patients' preferences and priorities for end-of-life care at Titanjane Clinic for Palliative Care, Queen Elizabeth Central Hospital, Blantyre, Malawi

Master Thesis

2018

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University of Cape Town

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Background For patients to have a dignified death, their wishes should be known and respected. The challenge is that, if conversations about death are avoided by patients, their families and health professionals because talking about death is taboo, it becomes hard to plan and implement preferred care for such patients. The researcher undertook an exploration of patients’ preferences and priorities for end-of-life care at Tiyanjane Clinic for palliative care, Queen Elizabeth Central Hospital, Blantyre, Malawi. The topic is regarded as sensitive and taboo in Malawi because discussing end-of-life care preferences and priorities is taken as prophesying death. Methodology This was a qualitative, descriptive study. Equal opportunity to participate in the study was provided to all adult patients diagnosed with life-threatening illnesses at the Clinic. Most participants were infected with the HIV virus. Data was collected by means of semi-structured interviews that were recorded and afterwards transcribed verbatim. A thematic framework was used to inform the systematic approach to data analysis. Results In December 2015 and January 2016, interviews were conducted with 14 adults (six men and eight women). The following 10 themes emerged from the data: Awareness of reason for being at Tiyanjane; reluctance to mention HIV; psychosocial concerns, expressed emotions; legacy; receiving information; decision-making; place of care; place of death; and spiritual concerns. Conclusion This research shows that, although choices are limited in Malawi due to a lack of resources, patients need to be given an opportunity to make their own healthcare choices. This research has shown that it is not as hard to start end-of-life care conversations as previously thought. Further research needs to explore whether advance directives or legal wills should be offered as part of care for palliative patients in Malawi, as most of the participants highlighted the need to be heard in regard to their wishes being upheld after death.
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