IMPORTANCE: In 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'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 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.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A 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.
FINDINGS: In 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.
INTERPRETATION: The 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.
BACKGROUND: Since the late 1950's, a steadily increasing immigrant population in Germany is resulting in a subpopulation of aging immigrants. The German health care system needs to adjust its services-linguistically, culturally, and medically-for this subpopulation of patients. Immigrants make up over 20% of the population in Germany, yet the majority receive inadequate medical care. As many of the labor immigrants of the 1960s and 1970s are in need of hospice and palliative care (HPC), little is known about this specialized care for immigrants. This epidemiological study presents utilization of HPC facilities in Berlin with a focus on different immigrant groups.
METHODS: A validated questionnaire was used to collect data from patients at 34 HPC institutions in Berlin over 20 months. All newly admitted patients were recruited. Anonymized data were coded and analyzed by using SPSS and compared with the population statistics of Berlin.
RESULTS: 4118 questionnaires were completed and included in the analysis. At 11.4% the proportion of immigrants accessing HPC was significantly (p<0,001) below their proportion in the general Berlin population. This difference was especially seen in the age groups of 51-60 (21.46% immigrants in Berlin population, 17.7% immigrants in HPC population) and 61-70 years (16,9% vs. 13,1%). The largest ethnic groups are Turks, Russians, and Poles, with a different weighting than in the general population: Turkish immigrants were 24% of all Berlin immigrants, but only 13.6% of the study immigrant population (OR: 0.23, 95%CI: 0.18-0.29, p<0.001). Russian and Polish immigrants account for 5.6% and 9.2% in the population, but 11.5% and 24.8% in the study population respectively (Russian: OR 0.88, 95%CI: 0.66-1.16; Polish: OR 1.17, 95%CI: 0.97-1.42). Palliative care wards (PC) were used most often (16.7% immigrants of all PC patients); outpatient hospice services were used least often by immigrants (11.4%). Median age at first admission to HPC was younger in immigrants than non-immigrants: 61-70 vs. 71-80, p = 0.03.
CONCLUSIONS: Immigrants are underrepresented in Berlin´s HPC and immigrants on average make use of care at a younger age than non-immigrants. In this regard, Turkish immigrants in particular have the poorest utilization of HPC. These results should prompt research on Turkish immigrants, regarding access barriers, since they represent the largest immigrant group. This may be due to a lack of cultural sensitivity of the care-providers and a lack of knowledge about HPC among immigrants. In the comparison of the kinds of institutions, immigrants are less likely to access outpatient hospice services compared to PC. Apparently, PC appear to be a smaller hurdle for utilization. These results show a non-existent, but oft-cited "healthy immigrant effect" of the first generation of work immigrants, now entering old age. These findings correspond with studies suggesting increased health concerns in immigrants. Focused research is needed to promote efforts in providing adequate and fair access to HPC for all people in Berlin.