Objective: To explore how people living with Parkinson’s disease (PwP), and their families, in Kenya negotiate the end of life.

Background: Parkinson’s disease (PD) is a progressive condition that can result in significant pain and suffering towards the end of life [1]. End-of-life care in high-income countries (HICs) often takes place in institutional settings, especially considering the prevalence of comorbidities in advanced PD. Yet few healthcare professionals in Kenya receive any palliative care training, while facilities are lacking [2]. There is limited research exploring end-of-life care for PwP in Kenya, sub-Saharan Africa (SSA), or any low-/middle-income setting.

Method: Ethnographic methods comprising interviews and observations took place over 10 months across Kenya. Participants included PwP (N=55), family members (N=23) and healthcare professionals (N=13).

Results: End-of-life care fell on families as hospitals were unaffordable for most and government hospitals had no palliative care facilities. Hope of a miracle recovery through faith/prayer was important for families but could make death more shocking when it came. The study illustrated the societal reluctance to discuss death and dying among families and healthcare professionals due to complex factors at the societal level (cultural “taboo” about death-talk) and individual level (doctors did not want to be seen as “failing” or family members did not want to accept death). Acknowledging that death was near allowed patients to “give up”. Challenges existed around preferred place of death (home, hospice, hospital), which was dependent on social/financial resources, and required improvisation from family and healthcare professionals.

Conclusion: The reluctance to discuss death and dying requires consideration when thinking about end-of-life care for PD in SSA. Palliative care requires an acceptance that the end is near and awareness of the proximity of death, although in Kenya, this was perceived as antithetical to care. Perhaps ‘palliative care’ in its current form needs repackaging in Kenya if doctors are to be equipped with the necessary skills to deliver effective end-of-life care. Initiating discussions around death/dying and normalising death talk could improve acceptance. Findings also provide insights into inequalities in access to care for PwP from BAME groups living across HICs and avenues to address existing disparities in uptake of palliative services [3].

References: [1] Lennaerts, H., Groot, M., Steppe, M., van der Steen, J.T., Van den Brand, M., van Amelsvoort, D., Vissers, K., Munneke, M. and Bloem, B.R. ‘Palliative care for patients with Parkinson’s disease: study protocol for a mixed methods study’, BMC Palliative Care, 2017; 16(61), pp. 1-7. [2] Ali, Z. ‘Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya’, Ecancermedicalscience, 2016; 10, pp. 655-655 [3] Calanzani, N., Koffman, J. and Higginson, I. Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK: Demographic profile and the current state of palliative and end of life care provision, 2013; Kings College London, Cicely Saunders Institute and Marie Curie Cancer Care.

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