A Good Death in Rural Kenya? Listening to Meru Patients and Their Families Talk about Care Needs at the End of Life

Abstract

What constitutes a good death in sub-Saharan Africa? In Meru District in Eastern Kenya, we listened to 32 patients with ongoing cancer or AIDS, and to their carers as they talked about end-of-life experiences and care needs. Patients described how the support of close family relationships, and the care shown by their community and religious fellowships helped meet many of their emotional, social, and spiritual needs. But physical needs often went unmet. Patients died in pain. Some suffered in poverty, others were troubled by the guilt of using all available family resources to pay for treatment and care. Accessible pain relief, affordable clinic or inpatient care when required, and help to cope with the burden of care we~e among the key needs of patients. Until these are available, many will not die well. Resume I Qu'est-ce qui constitue une « bonne mort » en Afrique sous-saharienne? Dans Ie district de Meru, situe dans I'est du Kenya, nous avons interviewe 32 patients atteints du sida ou du cancer ainsi que leurs soignants afin qu'ils nous parlent de leurs experiences de fin de vie et des soins dont lis avaient besoin. Les patients nous ont dit a quel point Ie support de .Ieurs proches et "aide de leur eornmunaute et de leur Eglise leur avaient ete d'un grand secours en repondant a leurs besoins d'ordre emotionnel, social, et spirituel. Par ailleurs, leurs besoins d'ordre physique sont souvent derneures sans reponse. Les patients meurent dans la douleur. D'autres souffrent dans une grande pauvrete, ou encore eprouvent des sentiments de culpabllite parce qu'ils utilisent toutes les :essources flnancieres de leur famille pour payer les tralternents et les soins dont i1s ont besoin. Parmi les besoins primerdiaux qui ont ete souleves mentionnons I' acc.e~a des medicaments pour soulager la douleur, les cliniques a prix abordables, les soins dispenses en etablissements hospitaliers, et I'aide d'autres personnes pour partager et soulager Ie fardeau des soignants. Tant qu'on ne pourra repondre aces besoins, beaucoup de patients n'auront pas une « bonne mort ».

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