Community-based palliative care in Kenya: its history, current status, challenges and future

Despite the growing number of people dying with preventable, health-related suffering—estimated to be 48 million per year by 2060 (47% of global deaths), an 87% increase compared to 2016 (1)—only 14% of all palliative care need is being met (2). These global inequities are especially marked in Africa, which, despite advances in palliative care provision (3), still faces significant hurdles: in 2024 the ratio of palliative care services provided per population was under 0.10 per 100,000 inhabitants and median morphine consumption was under 3 mg/per capita/year (4).

Located in east Africa, the Republic of Kenya is a lower middle-income country, unlike many other nations on the continent, with a population of more than 52 million, a relatively strong market-based economy, multi-lingual and ethnically and culturally diverse. Along with Uganda, the Republic of South Africa, and Rwanda, the country is at the forefront of palliative care provision and development on the continent (5). The first palliative care provider in the country was Nairobi Hospice, which started providing home care in 1990. Fifteen years later, the Kenya Hospice and Palliative Care Association (KEHPCA) was established, a non-profit, non-governmental organisation advocating for policy, education and research change and representing healthcare institutions providing palliative care (6,7).

Underpinning existing palliative care provision in the country is its community focus. Community-based palliative care (CBPC) is defined as palliative care delivered outside of hospital and outpatient clinic settings (8), providing compassionate, holistic palliative care services to people with serious, life-limiting illnesses in their own homes or local community (9). It is critical in countries like Kenya, with limited access to specialist healthcare facilities and with extensive rural areas, and is an integral component to chronic disease management at a time of an increasing burden of non-communicable diseases in the country (10). Community-based interventions have enabled effective sustainable and community-sensitive approaches to, for example, prevent and manage human immunodeficiency virus (11), empower communities (12), and help reduce stigma and barriers in discussing sensitive topics (13).

Current status

Currently, there are 121 registered organisations delivering palliative care in Kenya, including hospices for home care, inpatient units in government hospitals, private hospitals, faith-based institutions and community-based centres (14). These are distributed across the country, with the majority located around the capital, Nairobi, and major towns.

CBPC offers a service at the point of need, with community and family members able to provide input into the care process. Services are aimed at improving patients’ quality of life by managing pain and other symptoms, and offering emotional and spiritual support that is sensitive to local social, cultural, political and economic contexts. Additionally, CBPC programmes increase the likelihood that seriously ill, community-based patients have their place of death as home, fewer hospitalizations, fewer emergency department visits, decreased hospital length of stays, improved quality of life, and lower health care costs (15).

However, despite the increasing need for CBPC and the growing number of organisations providing palliative care—an increase from 70 in 2018 (7)—access to palliative care remains a challenge, particularly in rural areas, where resources are less, and patients and carers are geographically separated (16).

Challenges

While challenges to CBPC can be found across the four palliative care domains—i.e., physical (e.g., physician restrictions to opioid prescribing, despite the fact that most CBPC service providers are nurse led), psychological (e.g., difficulties in discussing and accepting a terminal prognosis), social (e.g., geographical disparities in accessing CBPC) and spiritual (e.g., equating spirituality with religion, which leads to a focus on the latter rather than broader spiritual concerns like meaning, purpose, and existentialism)—others fall outside them. These include: (I) patient costs; (II) attitudes to palliative care; (III) traditional African belief systems and fear of death; (IV) limitations in assessment tools; (V) health-seeking behaviour and traditional healers; (VI) lack of service standardisation and (VII) research, each of which is discussed below.

• Patient costs: although hospice and palliative care are reported to be cost effective (17), this mainly applies to high-income countries. The costs of providing palliative care in less economically developed countries remains significant for patients and families (18), with the diagnosis and treatment of life-threatening illnesses having a major impact on familial financial resources.
• Attitudes to palliative care: lack of understanding of palliative care among the general population is exacerbated by, for example, pastoral leaders who play a key role in shaping individual and community responses to those living with chronic and life-threatening illnesses. In their study of the knowledge and perceptions of religious leaders in Western Kenya regarding palliative care, Rialem et al. (19) found that while 81% of participants agreed pastors should encourage members with life-threatening illnesses to talk about death and dying, almost a third agreed that full use of palliative care can hasten death.
• Traditional African belief systems and fear of death: the traditional African belief system—also referred to as ancestor worship—is centred on the understanding that the life course is cyclical, rather than linear: those who die remain alive in a different world and can reincarnate and return to this world (20). While death is considered a rite of passage for those who die at an old age, death among those who are not elderly is considered unnatural and premature (21). In this context, many Africans prefer not to face the reality, or contemplate their own (or a loved one’s) death, which is considered a cultural taboo. These beliefs and attitudes can not only can hinder engagement with CBPC services, but also prevent any discussions around advance care directives, the writing of living wills, and the allocation of finances for their funeral while still alive (22).
• Limitations in assessment tools: prior to the development of the African Palliative Care Association (APCA) African Palliative Care Outcome Scale (23), a simple and brief multi-dimensional outcome tool, measuring progress in the quality of palliative care provided across the continent was problematic given the lack of rigorously validated outcome instruments. While the instrument has proved widely popular, there is a need for additional assessment tools to be developed that are suitable for the diversity of African settings, so they are compatible with existing cultural and religious practices. For example, it is considered inappropriate to discuss sexuality with elderly patients as culture demands this exchange can only happen among peers; consequently, tools—and research methods used to implement them—should be sensitive to this fact so they can be used effectively in palliative care settings locally (24).
• Health-seeking behaviour and traditional healers: traditional healers play a major role in many sub-Saharan African countries. They are considered to have received healing powers from God and are central to traditional African religion. Employing herbal treatment, ancestral incantation and other treatment-orientated religious healing practises, patients often only seek professional medical advice after such treatments have failed (25), including for cancer. This can have the effect of delaying and limiting the range of effective treatment options available to a patient.
• Lack of service standardisation: there are no guidelines that standardise existing CBPC in the country, resulting in discrepancies in what is provided across the different service settings. One such area is team constitution, with some teams comprised of nurses only, others with physicians, and yet others with social workers as the leaders, resulting in variation in the services provided.
• Research: while CBPC studies have been undertaken across Kenya, as in other African countries, methodologically they predominantly utilize cross-sectional and retrospective study designs, rather than interventionist and qualitative designs (26). Moreover, a more sustained and consistent research agenda, culture and workforce are required to ensure clinical practises are evidence-based and policies are supported by rigorous research.

Future

The glaring need to address global inequities in palliative care remains urgent, especially among countries in the Global South. It has been argued that doing so requires palliative care to be codified into national health policy, providing evidence-based, basic palliative care education and training for non-specialised healthcare workers, ensuring all essential palliative care medicines are available to those in need, and empowering and facilitating community involvement in research and service development (27).

Palliative care in Kenya ticks many of those boxes and more; notwithstanding the quality of services reported by some caregivers (28,29), the country has extensive service coverage, educational and training initiatives (30,31), made advances in a range of national policies (7), executed work at, and with, local communities, and undertaken primary research. However, efforts to engage the public and policy makers on the need for palliative care have met with inconsistent success.

By strengthening CBPC services further, palliative care practitioners in Kenya can work towards ensuring all individuals facing life-limiting illnesses have access to the care and support they need. In the meantime, identified persistent gaps exist that need to be addressed. These include, among others, regulatory limitations, dwindling funding for palliative care programmes, lack of trained palliative care physicians, nurses, pharmacists and community health volunteers, lack of awareness of palliative care among the general public and government officials, and the lack of trained personnel to prescribe medications (7). Moreover, to ensure CBPC is aligned with patients’ and families’ needs, further research needs to be undertaken. Research areas to establish a stronger evidence base, identified by Kenyan palliative care providers, include further integration of palliative care within the health system and community health volunteers (32). Creating a research culture, critical mass of researchers and the infrastructure necessary to implement this research is imperative (33). Furthermore, provider and community education on the ethos of CBPC is needed to improve the care provided to those in need of CBPC and it is imperative that policy makers in the country’s central and county governments formulate consistent CBPC guidelines that can further help alleviate existing inequalities in palliative care provision.

The recent changes in the international funding landscape, however, especially the withdrawal of US foreign aid by the Trump administration (34), have had deleterious repercussions for many clinical services across the continent. The extent to which it is impacting, and will impact, African palliative care services generally, and the CBPC services in Kenya particularly, has yet to be determined.

Acknowledgments

The views expressed by R.A.P. are not necessarily those of the National Institute for Health and Care Research (NIHR) or the Department of Health and Social Care, London, UK.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editors (Eva Oldenburger and Johan Menten) for the series “Multidisciplinary and Holistic Palliative Care”, published in Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-64/prf

Funding: This work was supported by the NIHR Applied Research Collaboration Northwest London (to R.A.P.); there is no specific award number.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-64/coif). The series “Multidisciplinary and Holistic Palliative Care” was commissioned by the editorial office without any funding sponsorship. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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