Abstract
ImportanceIn the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a ‘good death’.ObjectiveEvaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.Design13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.SettingKilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.ParticipantsA total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.FindingsIn characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.InterpretationThe results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
Highlights
Due to advancements in modern medicine, especially intensive care treatments, the process of dying is happening over longer periods of time and an increasing number of people require long-term care for chronic conditions [1, 2]
80% of annual deaths worldwide occur in low-and-middle countries (LMICs) [8]
Many participants held the sentiment that death is generally unwanted but certain; and they endorsed a belief that quality of death (QoD) can be differentiated into good or bad
Summary
Due to advancements in modern medicine, especially intensive care treatments, the process of dying is happening over longer periods of time and an increasing number of people require long-term care for chronic conditions [1, 2]. In high-income countries (HICs), advance care planning (ACP) has been increasingly promoted since the 1990s [4] due to mounting awareness about the poor quality of end-of-life (EoL) care and the poor knowledge of patients’ preferences for EoL treatment decision-making [5, 6]. 80% of annual deaths worldwide occur in low-and-middle countries (LMICs) [8]. Due to cultural perceptions of death as a taboo subject in northern Tanzania, there is a general avoidance of advance care planning conversations [10]. In many non-Western cultures, whereby a dying person is largely regarded within the context of strong relational ties, family and community are considered the source of treatment decisions, more so than the autonomous individual [16, 17]
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