OBJECTIVES:To explore the level and nature of burden among primary caregivers of people with palliative care needs living in rural Nepal and to understand the sources of support available to them. METHOD:An explanatory sequential mixed-method design was used. A house-to-house survey in two rural districts identified people with palliative care needs. Primary caregivers were invited to complete a structured questionnaire including a modified Caregivers' Burden Scale in End-of-Life Care. A purposive subsample then took part in semi-structured interviews exploring caregiving experiences. Quantitative data were analysed descriptively; qualitative data were analysed thematically. Finally, both data sets were integrated and triangulated to gain deeper insights. RESULTS:52 caregivers of 58 people with palliative care needs participated; 42 (81%) were women, most commonly daughters-in-law (44%) and wives (23%). 83% reported high levels of emotional, physical and social burden, often feeling isolated and exhausted. Families provided most support, followed by neighbours. Only 38% reported any support from health professionals and 69% had little or no knowledge of the cared-for person's clinical condition. CONCLUSIONS:Primary caregivers in rural Nepal are predominantly women who experience multidimensional burden, with limited information and formal support. Palliative care services should recognise and respond to caregiver needs, building on family and community resources and empowering caregivers within primary care-based models of palliative care.

Objective To synthesise five purposively selected service-level primary palliative care interventions in six sub-Saharan African countries to identify the contextual barriers and facilitators and the implementation strategies employed to address them.Setting Primary palliative care studies that have taken place in sub-Saharan Africa in the last 5 years.Design We used an implementation-focused formative evaluation design involving semi-structured interviews with every site lead (n=7) supplemented by a review of study-related documentation. Data were analysed using framework analysis underpinned by the relevant constructs of the Consolidated Framework for Implementation Research.Participants Site leads from each of the five studies were interviewed.Results Facilitators to implementing primary palliative care interventions included the following: (1) the relative advantage compared with standard care (ie, person-centred approach, expansion to those with non-cancer conditions), (2) primary care worker champions within sites, (3) broad sustained engagement with policymakers, managers, healthcare workers, patients and families and (4) availability of linked healthcare records. Barriers included the following: (1) inconsistent staffing and training needs for the diverse workforce, (2) fragmented referral pathways, (3) inconsistent national and local policies and (4) physical infrastructural limitations.Conclusion Context-specific facilitators, barriers and recommendations should be considered to bolster the implementation process of future primary palliative care interventions. Advocacy is needed to ensure adequate investments in the design, equipping and staffing of primary healthcare in sub-Saharan Africa to properly support patients and their families.

BACKGROUND: Nepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limited. This study explores experiences of suffering and health seeking behaviour amongst people with palliative care needs (PWPCN) and their unpaid family caregivers in rural Nepal. METHODS: A constructivist multiple case study design was employed across four rural municipalities (cases) in two districts. Cases included communities of varied ethnicity and human development indices served by a community hospital and village health posts. A house-to-house survey using the Supportive and Palliative Care Indicators Tool for Low Income Settings (SPICT-LIS) identified PWPCN. Following completion of a structured questionnaire, a purposive sample of PWPCN was constructed (unit of analysis). They, their carers and key informants completed semi structured interviews. Quantitative data were analysed using descriptive statistics and qualitative data were analysed thematically both within and across case. RESULTS: Among 587 households surveyed, 58 PWPCN were identified. 20 units of analysis were formed with interviews from 17 PWPCN and 17 caregivers and 16 key informants. None of the PWPCN had access to palliative care services. Three themes emerged: (1) Everyone suffers: reflecting high levels of physical, emotional, spiritual and social pain. (2) Paying for healthcare: high out-of-pocket expenditure, debt, and financial vulnerability mitigated partially for some by health insurance. (3) Decision-making - no right answer: exposed difficulties choosing between limited local services and distant, costly tertiary care. Decisions were affected by distance to and location of health facility (particularly those offering health insurance), transportation, cost/family resources, and a strong belief that “better care is found in the city.” Bypassing nearby facilities for distant tertiary hospitals was common. High level of suffering and unmet need led to a feeling of lack of control. Older people particularly did not access health care because of cost and were resigned to their fate. CONCLUSION: PWPCN in rural Nepal endure substantial suffering through unmet holistic needs and limited access to appropriate care. Financial hardship, geographical barriers, and perceived low-quality local services drive people toward distant facilities thus increasing costs.

Palliative care is integral to Universal Health Coverage. In Nepal 80

BACKGROUND:World Health Assembly Resolution 67.19 affirms that palliative care is an ethical responsibility of health systems and urges member states to ensure domestic funding. Yet, even in countries with established services, palliative care is often fragmented and underfunded, with limited government support. AIM:The aim of this special article is thus to present a health economic appraisal of palliative care, building on established evidence of its clinical benefits. METHODOLOGY:Under the auspices of the World Health Organization, a multidisciplinary, international team of palliative care researchers, global health experts and health economists conducted a literature review addressing six themes: current health financing for advanced illness, models of palliative care, cost savings for health systems and households, improved patient and caregiver outcomes, and strategies for sustainable financing. RESULTS:Results show that palliative care can prevent catastrophic health expenditures for families, increase efficiency in use of health resources, and support integration within national health systems. Palliative care also facilitates monitoring of service costs and enables the development of effective financing frameworks. CONCLUSION:This review offers practical guidance for policymakers, funders, and health system leaders to integrate palliative care into universal health coverage schemes. It underscores the dual imperative-ethical and economic-of investing in palliative care to promote equity and sustainability in health care delivery.

Background The WHO primary palliative care strategy states that palliative care is ‘an ethical responsibility of health systems’ and calls for integration of palliative care into public healthcare systems to achieve universal health coverage. We aimed to determine stakeholders’ perspectives on the necessary components of and considerations for a feasible and acceptable model of integrated palliative care and primary care for older people living with serious multimorbid illness in Sub-Saharan Africa.Methods We conducted a multicountry cross-sectional qualitative study in Ghana, Malawi and Zimbabwe. In-depth qualitative interviews were conducted with multimorbid older people and family caregivers. Focus groups were conducted with healthcare staff. Verbatim transcripts were subjected to inductive framework analysis to identify stakeholders’ needs and preferences for delivering and receiving palliative care in primary care facilities.Results The coding framework identified five main themes: (i) communication; (ii) coordination of care; (iii) impact of living with chronic illness; (iv) seeking healthcare; and (v) living with chronic illness: coping strategies and resources. The impact of multimorbid illness on older people was multidimensional, including pain and symptom control, catastrophic spending, social exclusion and limitations on activities of daily living. Specific challenges were identified in care pathways and delivery. Communication was sub-optimal, with lack of appropriate information and patient involvement.Conclusion Person-centred approaches are required to deliver palliative care to older multimorbid people in primary care settings. This study informs implementation of the WHO Healthy Ageing Policy intention to deliver person-centred primary palliative care and the WHO primary palliative care guidance.

Background Multimorbidity is a growing global concern, affecting patient outcomes and healthcare costs. In low- and middle-income countries, data on multimorbidity in primary care beyond prevalence is limited. Our study explored the demographic and clinical characteristics of multimorbidity among older people attending primary health care in Malawi. Methods We conducted a cross-sectional analysis on medical records from 15,009 older patients aged ≥50 years across three hospitals in Malawi (one tertiary, two district). Data from 2019-2021 was analyzed using R statistical software to examine patterns of multimorbidity (two or more chronic conditions). Outcome estimates were adjusted for sex, age, location, and year of clinic visit. Results The overall prevalence of multimorbidity, defined across 17 recorded chronic conditions, was 19.6%. Among the 2,941 cases of multimorbidity, 2,708 (92.0%) involved two chronic conditions, while 233 (8.0%) involved three. While most conditions increased steadily in prevalence with age, diabetes followed a different pattern, with higher prevalence among individuals aged 50–59 years (53.9%) and 60–69 years (52.4%) compared to those 70 years and older (40.3%). After adjusting for clinic visit year, gender, and study location, individuals aged 70 years and older were significantly less likely to have multimorbidity compared to those aged 50–59 years (AOR = 0.57, 95% CI: 0.52–0.62, p < 0.001). Conclusion The study revealed a wide range of multimorbidity combinations among older people attending primary health care. Strategies to address multimorbidity in older people should include efforts to identify other, less common clusters of chronic conditions.

Background: Few interventions are documented to meet person-centred needs of older people with serious multimorbidity in low- and middle-income countries where access to palliative care is limited. Most of the care in these settings is delivered by primary care health workers. Aim: This study reports the development and acceptability testing of a communication skills training and mentorship intervention for primary health care workers in Malawi. Setting: This study was conducted at Mangochi District Hospital in the south-eastern region of Malawi. Methods: Twelve primary health care workers (four clinical officers and eight nurses) working in the primary care clinics received the intervention. The intervention was designed using modified nominal group technique, informed by stakeholder interviews and a theory of change workshop. Acceptability is reported from thematic analysis of a focus group discussion with primary health care workers who received the intervention using NVivo version 14. Results: Older persons with serious multi-morbidity and their caregivers identified a need for enhanced communication with their healthcare providers. This helped to inform the development of a communication training skills and mentorship intervention package based on the local best practice six-step Ask-Ask-Tell-Ask-Ask-Plan framework. Primary health care workers reported that the intervention supported person-centred communication and improved the quality of holistic assessments, although space, workload and availability of medication limited the implementation of person-centred communication. Conclusion: The Ask-Ask-Tell-Ask-Ask-Plan framework, supported person-centered communication and improved the quality of holistic assessment. Contribution: This intervention offers an affordable, local model for integrating person-centered palliative care in resource-limited primary healthcare settings.

Abstract Background The global population is undergoing a significant surge in aging leading to increased susceptibility to various forms of progressive illnesses. This phenomenon significantly impacts both individual health and healthcare systems. Low and Middle Income Countries face particular challenges, as their Primary Health Care (PHC) settings often lack the necessary human and material resources to effectively address the escalating healthcare demands of the older people. This study set out to explore the experiences of older people living with progressive multimorbidity in accessing PHC services in Malawi. Methods Between July 2022 and January 2023, a total of sixty in-depth interviews were conducted with dyads of individuals aged ≥ 50 years and their caregivers, and twelve healthcare workers in three public hospitals across Malawi’s three administrative regions. The study employed a stratified selection of sites, ensuring representation from rural, peri-urban, and urban settings, allowing for a comprehensive comparison of diverse perspectives. Guided by the Andersen-Newman theoretical framework, the study assessed the barriers, facilitators, and need factors influencing PHC service access and utilization by the older people. Results Three themes, consistent across all sites emerged, encompassing barriers, facilitators, and need factors respectively. The themes include: (1) clinic environment: inconvenient clinic setup, reliable PHC services and research on diabetic foods; (2) geographical factors: available means of transportation, bad road conditions, lack of comprehensive PHC services at local health facility and need for community approaches; and (3) social and personal factors: encompassing use of alternative medicine, perceived health care benefit and support with startup capital for small-scale businesses. Conclusion This research highlights the impact of various factors on older people’s access to and use of PHC services. A comprehensive understanding of the barriers, facilitators, and specific needs of older people is essential for developing tailored services that effectively address their unique challenges and preferences. The study underscores the necessity of community-based approaches to improve PHC access for this demographic. Engaging multiple stakeholders is important to tackle the diverse challenges, enhance PHC services at all levels, and facilitate access for older people living with progressive multimorbidity.

I am sure you have heard the sad story about Patricia Dawson, who died in a hospital emergency department (ED). She had a cardiac arrest while in the department, but the nursing staff mistakenly followed the DNACPR recommendations from a different patient's notes. The coroner ruled that the retired nurse died of neglect.

Ensuring primary healthcare (PHC) accessibility to older people with multimorbidity is vital in preventing unnecessary health deterioration. However, older people ≥50 y of age in low- and middle-income countries (LMICs) face challenges in effectively accessing and utilizing PHC. A systematic review was conducted adopting the Andersen-Newman theoretical framework for health services utilization to assess evidence on factors that affect access to PHC by older people. This framework predicts that a series of factors (predisposing, enabling and need factors) influence the utilization of health services by people in general. Seven publications were identified and a narrative analytical method revealed limited research in this area. Facilitating factors included family support, closeness to the PHC facility, friendly service providers and improved functional status of the older people. Barriers included long distance and disjointed PHC services, fewer health professionals and a lack of person-centred care. The following needs were identified: increasing the number of health professionals, provision of PHC services under one roof and regular screening services. There is a need for more investment in infrastructure development, coordination of service delivery and capacity building of service providers in LMICs to improve access and utilization of PHC services for older people.

Objective Evidence of the role of palliative care to reduce financial hardship and to support wellbeing in low/middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on healthcare use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC. Methods To identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO tuberculosis patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by healthcare professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted. Results The PaCCCt survey is a tablet-based, third-party administered survey recording healthcare service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving and so on), funeral costs and wellbeing at household level are included. Completion time is <30 min. Conclusion The PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship.

More than a fifth of the world's population live in fragile settings, yet there is a paucity of health-related data on populations in this setting, and what data that do exist are often focused on infectious diseases rather than non-communicable diseases including cancer. In their Article in The Lancet Global Health, Isabel Mosquera and colleagues1Mosquera I Ilbawi A Muwonge R et al.Cancer burden and status of cancer control measures in fragile states.Lancet Glob Health. 2022; 10: e1443-e1452Google Scholar calculated cancer incidence and mortality on the basis of data from population-based cancer registries for 31 countries that had scored 90 or more on the Fragile States Index for at least 10 years. They found that the estimated cancer burden was lower than worldwide rates, except for cervical and prostate cancer, but with a higher proportion attributable to infections. The authors also highlight the lack of preparedness of fragile states to meet the needs of patients and families affected by an increasing cancer burden, the limited health promotion and prevention activities (particularly in relation to tobacco), and the notable gaps in treatment, rehabilitation, and palliative care support. The Article offers an important benchmark for cancer burden and cancer control measures, using a wide range of data sources to build a comprehensive overview. It also highlights areas for further research. There are population shifts both inside and outside of fragile countries. UN News, reporting on data from the United Nations High Commissioner for Refugees, estimated that 1% of the world's population comprises displaced people, many of whom leave their country of origin to move to nearby, often fragile, countries.2UN NewsUNHCR: a record 100 million people forcibly displaced worldwide.https://news.un.org/en/story/2022/05/1118772Date accessed: August 26, 2022Google Scholar Although this movement represents an important challenge to the host countries, it can also be an opportunity to improve access to cancer care for all. The global community is committed to the principles of universal health coverage, with the mandate to ensure access to comprehensive health care without being driven into financial hardship.3WHOUniversal health coverage. Fact sheets. World Health Organization, Geneva2021Google Scholar This commitment has particular relevance for people affected by cancer in fragile environments, where there are no free public services and out-of-pocket expenditure on health care is constrained by the scarcity of household resources, or even worse, the few existing resources are sold in order to pay for travel or for cancer treatment that may not be effective. We need to consider how to measure this burden and design interventions to mitigate the drive into poverty caused by catastrophic health-care costs. Research data suggests that access to early palliative care might deliver savings in out-of-pocket expenditure through patient-centred provision of information, and timely access to symptom management.4Jane Bates M Gordon MRP Gordon SB et al.Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study.Lancet Glob Health. 2021; 9e1657Google Scholar Cancer registry data, where it exists, might underestimate the true burden of disease in countries where access to pathology or imaging for definitive diagnosis is limited, recognising that many people die before reaching a cancer centre without accurate recording of deaths or death certification. Engaging in data collection closer to the community has shown interesting results through increasing use of verbal autopsy. The new concept of serious health-related suffering allows a different and arguably richer means of assessing cancer disease burden within the context of multimorbidity, highlighting the importance of holistic palliative care, including end-of-life care.5Knaul FM Farmer PE Krakauer EL et al.Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.Lancet. 2018; 391: 1391-1454Google Scholar Gaps in care can be seen in the quality of death index, in which both access and quality of care should be measured and reported within descriptions of health systems readiness.6WHOQuality of care in fragile, conflict-affected and vulnerable settings: taking action. World Health Organization, Geneva2020Google Scholar The WHO 2020 technical document on taking action on the quality of care in fragile settings and conflict-affected and vulnerable populations outlines a framework for multisectoral action underpinned by a culture of quality with key features such as equity, meaningful engagement, and compassionate care.7Economist Intelligence UnitThe quality of death: ranking end of life care across the world. Lien Foundation, Singapore2015Google Scholar Further validated tools to report quality and access should include these key features. In an era in which the health of the planet is affecting each one of us, we see the disproportionate effect on fragile settings and its links to the global burden of disease. Improved data on cancer needs to recognise the determinants of health beyond our medicalised systems. Mosquera and colleagues’ Article highlights the challenges of identifying cancer burden in states that have complex and multiple burdens which have made them fragile, not just in their capacity to deliver health care, but in their capacities to survive. Fragile states are being faced with planetary health challenges, such as floods and cyclones, requiring concerted actions at the global, regional, national, and local level.8Romanello M McGushin A Di Napoli C et al.The 2021 report of the Lancet Countdown on health and climate change: code red for a healthy future.Lancet. 2021; 3982148Google Scholar The increasing loss of biodiversity, the human environmental damage that conflict causes, the emergence of new and old infectious diseases, and the climate crisis are all changing the nature of what we mean by the burden of cancer. This important Article highlights cancer burden in fragile states and the absence of preparedness for the expected rise in cancer incidence and sets these factors within the context of complex fragility. It emphasises the need for policy and planning responses, especially in overstretched health systems. The challenges in data capture should result in greater focus and a multisectoral and comprehensive response. In accordance with the priorities of the Sustainable Development Goals, people affected by cancer in fragile states must not be left behind. We declare no competing interests. Cancer burden and status of cancer control measures in fragile states: a comparative analysis of 31 countriesFragile states have started the epidemiological transition but are still not implementing enough cancer control measures. There is a need to develop reliable cancer control plans and guidelines, and to create financial mechanisms for implementation. Full-Text PDF Open Access

The article “The increased need for palliative cancer care in Sub-Saharan Africa” prompted a more comprehensive review of palliative care in Malawi [ [1] van der Plas W.Y. Benjamens S. Kruijff S. The increased need for palliative cancer care in Sub-Saharan Africa. Eur J Surg Oncol. 2020; 46: 1373-1376https://doi.org/10.1016/j.ejso.2020.03.212 Google Scholar ]. Following discussion and insights from the current literature, it became clear that there was a need to update the evidence on the state of palliative care reported from Malawi. By publishing progress made, we support early engagement with local expert opinion to ensure the availability of accurate information for reporting in future publications of this type. The increased need for palliative cancer care in Sub-Saharan AfricaEuropean Journal of Surgical OncologyVol. 46Issue 7PreviewAlthough palliative care as a discipline in high income countries is maturing, it is still somewhat in its infancy in sub-Saharan Africa, an area where this type of care is needed the most: more than 80% of people in urgent need of palliative care live in low- and middle-income countries (LMICs). We will describe why the development of palliative care in LMICs is increasingly essential, and how it is currently still underdeveloped. In this manuscript, we discuss the challenges in organizing palliative care in LMICs in regard to the four WHO palliative care pillars: policy, education, medication, and implementation. Full-Text PDF Open Access

BACKGROUND:Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. METHODS:In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed. FINDINGS:We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was -36% (95% CI -94 to 594; p=0·707). INTERPRETATION:Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified. FUNDING:Wellcome Trust; National Institute for Health Research; and EMMS International.

Background: Many households in low-and-middle income countries face the additional burden of crippling out-of-pocket expenditure when faced with a diagnosis of life-limiting illness. Available evidence suggests that receipt of palliative care supports cost-savings for cancer-affected households. This study will explore the relationship between receipt of palliative care, total household out-of-pocket expenditure on health and wellbeing following a first-time diagnosis of advanced cancer at Queen Elizabeth Central Hospital in Blantyre, Malawi. Protocol: Patients and their primary family caregivers will be recruited at the time of cancer diagnosis. Data on healthcare utilisation, related costs, coping strategies and wellbeing will be gathered using new and existing questionnaires (the Patient-and-Carer Cancer Cost Survey, EQ-5D-3L and the Integrated Palliative Care Outcome Score). Surveys will be repeated at one, three and six months after diagnosis. In the event of the patient’s death, a brief five-item questionnaire on funeral costs will be administered to caregivers not less than two weeks following the date of death. Descriptive and Poisson regression analyses will assess the relationship between exposure to palliative care and total household expenditure from baseline to six months. A sample size of 138 households has been calculated in order to detect a medium effect (as determined by Cohen’s f 2=0.15) of receipt of palliative care in a regression model for change in total household out-of-pocket expenditure as a proportion of annual household income. Ethics and dissemination: The study has received ethical approval. Results will be reported using STROBE guidelines and disseminated through scientific meetings, open access publications and a national stakeholder meeting. Conclusions: This study will provide data on expenditure for healthcare by households affected by advanced cancer in Malawi. We also explore whether receipt of palliative care is associated with a reduction in out-of-pocket expenditure at household level.

Introduction Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for ‘healthy life and wellbeing for all at all ages’, though there is a limited understanding of wellbeing particularly from patients’ and families’ perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is ‘largely ignored’ on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi. Methods Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held. Results Wellbeing was described as seeing improvements in the patients’ function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as ‘courage givers’ supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered ‘prematurely dead’ in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination. Conclusions To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.