Home-Based Palliative Care in sub-Saharan Africa

298 Home Healthcare Nurse www.homehealthcarenurseonline.com

Burden of Disease in sub-Saharan AfricaJennifer Kiwanuka, 43, has ovarian cancer that has spread to her lungs. She lives in Rukungiri district, western Uganda, with her daughter Rose, 17, and her two grandchildren, Patience, 3, and Mirembe, 1. She had two other children; Denis, 20, lives in the country’s capital, Kampala; Deborah, 23, died 6 months earlier of AIDS, leaving her two young children, Patience and Mirembe, for Jennifer to care for.

By 2008 there was an estimated 22 million people living in sub-Saharan Africa with HIV and AIDS, which accounts for up to 67% of the global burden of the disease (Joint United Nations Programme on HIV/AIDS, 2008). The problem is not restricted to adults; there were over 1.8 million children aged under 15 living with HIV in 2007, with 330,000 new infections and 240,000 deaths (Joint United Nations Programme on HIV/AIDS).

Palliative care within sub-Saharan African remains relatively new, with one

service delivery model used being home-based care (HBC), a well-established

mode of care provision within the HIV/AIDS context. The integration of pal-

liative care into HBC services is a major advance in increasing its accessibility

in the region. However, challenges exist to the provision of palliative services

through HBC, especially for nurses, and these challenges, along with some of

the responses to them, are discussed.

Julia Downing, PhD, MMedSci, BN (Hons), RGN

Richard A Powell, MA, MSc, BA

and Faith Mwangi-Powell, PhD, MSc (Econ)

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vol. 28 • no. 5 • May 2010 Home Healthcare Nurse 299

lematic. Even for those who present before the end stage of the disease (an estimated 70%–80% of cancer patients in Africa are diagnosed with late-stage disease [Hamad, 2006]), access to curative treatment such as chemotherapy or radiotherapy is limited. It is anticipated that as people’s lifestyles change, along with their nutritional preferences and work patterns, there may be an increase in the incidence of other chronic, life-limiting diseases (World Health Organization [WHO], 2006a).

Cancer is also a major chal-lenge in the region, with an estimated 700,000 new can-cer cases and nearly 600,000 cancer-related deaths in Africa in 2007 (Garcia et al., 2007), with 25% of these cancers re-lated to infectious diseases compared with less than 10% in developed countries (Ras-togi et al., 2004). However, a lack of national population-based cancer registries across the continent (Morris, 2003) means determining an accu-rate statistical picture of the extent of the burden is prob-


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nausea, changes in bowel pat-terns, and shortness of breath. Her pain was brought under control through oral mor-phine solution (10 mg, four hourly), and she was given medication for her nausea and altered bowel habits, along with advice on positioning and exercises for her shortness

given when it was discovered that the cancer had spread to her lungs and she could neither afford additional treatment nor stay in hospital any longer. She was referred to a branch of a local hospice, where she was seen before being dis-charged from the hospital suf-fering from pain as well as

Models of Palliative Care Delivery

Jennifer was receiving treat-ment at the regional referral hospital, approximately 80 km away. She was diagnosed with ovarian cancer 5 months ago and has since undergone two cycles of chemotherapy. No further chemotherapy was

Figure 1. Map of sub-Saharan Africa.Figure courtesy of the Canadian International Development Agency.

Facts and figuresThe second largest continent, stretching across five time zones, Africa covers an area of 30.2 million km2 (11.7 million square mile), including its adjacent islands, approximately 20% of the global land area. Its estimated 967 million inhabitants, amounting to 14.4% of the world’s total population, are distributed across five regions and 53 independent nations: Eastern Africa (17 nations); Central Africa (9); Northern Africa (6); Southern Africa (5); Western Africa (16).



liative care development. This approach is not symptom or disease focussed but rather population and risk-factor ori-ented and founded upon (i) ap-propriate government policies, (ii) adequate drug availability, (iii) the education of health professionals, and (iv) imple-mentation of palliative care at all levels (Stjernsward et al., 2007), emphasizing that pallia-tive care should be integrated into existing national health-care systems (WHO, 1990). This care should be provided at primary, secondary, and ter-tiary levels of care (Mpanga Sebuyira L. et al., 2003), that is, across all levels of service delivery and the continuum of care, as outlined below.

pice or palliative care service provision (Wright & Clark, 2006).

A major advance in the de-velopment of palliative care in sub-Saharan Africa came with the “Cape Town Declaration” in November 2002 and the sub-sequent formation of the Afri-can Palliative Care Association (APCA). The declaration stated that palliative care (including pain and symptom control) is the right of every adult and child with life-limiting illness, and as such should be incorporated into national healthcare strate-gies, making it accessible and affordable for all in the region (Mpanga Sebuyira L. et al., 2003).

Underpinning the declara-tion was a commitment to the public health approach to pal-

of breath. She was discharged from the hospital with a 2-week supply of medicines and advised when she could visit the hospice team again because they do not conduct home visits that far away.

The provision of palliative care within sub-Saharan Africa remains relatively new. Despite the first services being devel-oped at Island Hospice in Zim-babwe in 1979, there are still some countries where palliative care provision is nonexistent or in its formative stages. Only four countries are currently ap-proaching some form of inte-gration (as defined in Table 1), whereas 21 of 47 (44.7%) African countries have no identified hos-

1. No known activity

2. Capacity building 3. Localized provision 4. Approaching integration

• Presence of sensitized personnel

• Expression of interest with key organizations

• Links established (international) with service providers

• Conference participation

• Visit to hospice–palliative care organizations

• Education and training (visiting teams)

• External training courses undertaken

• Preparation of a strategy for service development

• Lobbying policymakers/health ministers

A range of capacity building activities but also

• Critical mass of activists in one or more locations

• Service established—often linked to home care

• Local awareness/support

• Sources of funding established, although they may be heavily donor dependent and relatively isolated from one another with little impact on wider health policy

• Morphine available

• Some training undertaken by the hospice organizations

A range of capacity building activities but also

• Critical mass of activists country wide

• Range of providers and service types

• Broad awareness of palliative care

• Measure of integration with mainstream service providers

• Impact on policy

• Established education centers

• Academic links

• Research undertaken

• National association

Table 1. Typology of hospice–palliative care service type

Source: Wright and Clark (2006).



• Level 1: Primary/Basic level. The minimum pack-age for palliative care (e.g., community-based programs or primary-level govern-ment facilities).

• Level 2: Secondary/Intermediary level. Inter-mediary services providing a wide range of care com-ponents (e.g., integrated community-based home care programs, governmen-tal, regional and district-level services, and other district-level service providers such as mission hospitals).

• Level 3: Tertiary/Specialist level. What is desirable for a specialist palliative care service for people with life-threatening illnesses (APCA, 2009a).

Integration into existing health structures is key to palliative care provision, along with a well-defined patient referral system, to ensure that care is provided in a sustainable and appropriate manner. Consequently, there are

multiple models of palliative care delivery across the region, which include the following:

• HBC – both supportive HBC and specialist pallia-tive HBC

• Facility-based care, for example in Ministry of Health facilities

• Inpatient and day care services

• Outreach services, such as day care outreaches, road-side and mobile clinics

• Hospital-based palliative care teams

• Specialist palliative care services

• Integrated community-based healthcare

Home-Based Care and Its Components

Two weeks after Jennifer was discharged from the hospital, her condition deteriorated. Her pain was no longer being controlled through medica-tion, and she was constipated.

She was unable to walk far, and it was impossible to get her back to the hospital or the hospice for her review appointment. Rose tried to care for both her mother and the two little children, one of whom had malaria. A vil-lage member was aware of how unwell Jennifer was and contacted the local HBC ser-vice, asking them to visit her. Jennifer was subsequently visited by a local commu-nity volunteer who assessed her situation and contacted a nurse whom they could call on for help. Jennifer knew she was dying and was worried about what would happen to Patience and Mirembe. She was also concerned about Mirembe’s health, fearing that she might be HIV positive. Her son, Denis, was sending money home to her when he could, but food was scarce as Jennifer was unable to work and Rose was too busy look-ing after her and the chil-dren to finish her schooling or earn money.

In sub-Saharan Africa there are many HBC services, a well-established model of care provi-sion within the HIV and AIDS context. Often HBC is provided through community volunteers and provides supportive care rather than palliative care—palliative care and HBC are not synonymous, with HBC being just one vehicle for palliative care delivery. However, the integra-tion of palliative care into these HBC services is possible, with some of the missing elements needed to ensure that the care provided through HBC is pallia-tive in nature listed in Table 2.

A review of existing HBC ser-vices identified seven types of

There is a significant deficit in skilled palliative care professionals, along with severe shortages in the number of health professionals within countries. Consequently, there is a heavy reliance on community volunteers for the provision of HBC, raising questions regarding the quality and sustainability of services significantly dependent upon their contribution.



2006b]) community volunteers form the backbone of many HBC care services.

Challenges to HBC, Especially for Nurses

The nurse attached to the HBC team was only able to visit Jennifer once per week given she had to cover the whole district (i.e., 1,500 km2), on murrum (i.e., nontarmac roads) and only had limited access to a vehicle. However, where possible, community volunteers visited Jennifer and her family every day and provided support where pos-sible. Although the palliative care team from the hospice in Mbarara were unable to visit Jennifer given the dis-tance involved, the nurse from the HBC team was able to re-ceive advice from them over the telephone and order more morphine for her, although it was 4 days before the nurse was able to travel to Mbarara to collect the supplies due to her workload, the distance entailed, and the lack of avail-able transport. Fortunately, the palliative care team there were prepared to continue to provide morphine for Jennifer because there was no supply

• Antiretroviral therapy (ART) (referral)

• ART direct provision • Facilitating access to sim-

ple pain medications only • Facilitating access to

strong pain medications with the prescription from a physician

• Home visiting

The components provided by HBC services were the same for all models; what differed was their delivery capacity. In short, the higher the level of integration of the service, the greater was the capacity to offer palliative care. There were simi-larities in some of the differ-ent models’ capacities to offer different components of HBC. There were no services where strong pain medications were accessible through prescrip-tions by cadre other than physi-cians, and because the doctor population ratio is limited on the continent, this restricted their prescription (APCA, 2009b). Moreover, due to the limited numbers of physicians and nurses available to provide HBC (e.g., in Tanzania there are only 2 physicians per 100,000 people and 37 nurses [WHO,

HBC provision across the re-gion that have numerous simi-larities (APCA, 2009b):

1. Community HBC 2. Integrated community-

based home care 3. Government district-level

HBC services 4. Hospital-supported HBC

services 5. Home visiting 6. Hospice care with HBC

services 7. Outreach services, which

include HBC

The main components of HBC identified by the review were as follows:

• Counselling/psychosocial support

• Nursing care and treatment of opportunistic infections

• Facilitation of income-generating activities

• Support of orphans and vulnerable children

• Prevention of mother-to-child transmission awareness

• Referral • Training/capacity building • Provision of food supple-

ments

Elements of supportive care often provided in HBC Missing elements of palliative care that can be integrated into HBC services

• “Holding-hands”

• Elements of psychosocial and spiritual care

• Basic hygiene within the home

• Practical help within the home

• May include some orphans and vulnerable children care

• May include basic patient care (e.g., bathing)

• Pain assessment and management

• Symptom assessment and management

• Meaningful emotional support

• Broader aspect of spiritual care

• Bereavement care and support

• Effective supervision of care providers

Table 2. Integrating palliative care into home-based care



reduce the quality of care being provided.

(f) Lack of recognition of the importance of palliative care in different sectors in some countries – for ex-ample, from the ministries of health, universities, do-nors, nongovernmental or-ganizations, etc. As a result, resources are distributed elsewhere and not toward palliative care provision.

(g) Logistics and infrastructure – for some it is impossible to travel to their nearest palliative care provider due to the distance entailed. For example, in Namibia there are only approximately two people per square kilome-ter, with health facilities widely dispersed, rendering access difficult to the seri-ously ill. Other logistical challenges—such as the availability of transport for clinicians, or the stock-outs of medications due to fail-ures in the supply chain—all add to the challenges in providing home-based pal-liative care.

(h) The high burden of disease means care is often needed by the whole family—this is particularly the case with HIV and AIDS, when it is rare that only one family member is infected, and care is needed by adults and children alike. This challenge can be compounded when trying to support child-headed households, which can be overseen by children as young as 10.

(i) Role overload, role conflict, and inadequate authority for nurses—the workload of many nurses is high, causing role overload. At

number of health profes-sionals within countries. Consequently, there is a heavy reliance on com-munity volunteers for the provision of HBC, raising questions regarding the quality and sustainability of services significantly dependent upon their contribution (Powell & Mwangi-Powell, 2008).

(d) Limited availability of drugs and other resources—overly restrictive regula-tions governing the use of strong opioids, such as oral morphine, have meant that often such medicines are unavailable. For example, they may only be available at the regional hospitals, or through palliative care organizations, thus limiting their availability to the vast majority of individuals in need. Where strong opioids are available, clinicians may be hampered in their use by a lack of training, along with erroneous beliefs regarding their use, thus rendering them reluctant to prescribe. Moreover, it is typically the doctor who prescribes such medicines (as directed by national leg-islation) and they are often based in urban settings, thereby restricting access to people in rural areas. Consequently, many people who need strong analgesics cannot access them and suffer in pain.

(e) Extending coverage and ensuring quality—although it is important to make palliative care accessible to all those who need it through models of service delivery such as HBC, it is also important not to

at the district hospital where, although it had been ordered, it had not yet been provided. Jennifer received care from the community volunteers for 3 weeks before she died at home. The presence of the volunteers helped her family considerably, enabling them to feel they were not alone but were being cared for.

Challenges to the provision of palliative care through HBC include the following:

(a) The immense need for pal-liative care and insufficient numbers of palliative care services—with the high disease burden across the region, the demand for pal-liative care service provi-sion far exceeds supply. As palliative care becomes integrated into HBC pro-grams, however, accessibil-ity to it will increase.

(b) Delayed health-seeking behaviour—as mentioned, many people present late to health professionals, having often received treatment from a tradi-tional healer first, meaning they cannot access cura-tive treatments. For exam-ple, there are an estimated 20,000 new cancer pa-tients per year in Uganda (Kiyonga, 2000) and less than 5% of these have ac-cess to curative treatment (Merriman, 2000).

(c) A lack of trained palliative care professionals and a reliance on community volunteers—throughout sub-Saharan Africa, there is a significant deficit in skilled palliative care professionals, along with severe shortages in the



Conducting a home visit.

A patient being cared for at home.

A home care nurse explaining to a patient how to take their medication.

Assessing pain through using the ‘hand scale’ of pain assessment (where a closed fist represents no pain and five extended fingers represents worse possible pain, with each extended finger indicating in-creasing levels of pain).

A palliative care nurse in Uganda.



in rural areas) through HBC pro-vision some countries are chang-ing existing legislation so that palliative care-trained nurses are enabled to prescribe medications such as oral morphine (what the WHO calls task-shifting), and the extended role that they play is being recognized by local nurs-ing and medical councils.

Education and training for all nurses and community volun-teers working in HBC on pallia-tive care is vital. Although nurses vastly outnumber doctors on the continent, there are still insuffi-cient numbers of nurses, so care is often provided by community volunteers. Nurses must train and supervise these carers to give appropriate and adequate palliative care. The supervision of trained nonprofessional care-givers has assumed paramount importance in Africa (Downing, 2006). Community volunteers have a vital role to play in HBC with regard to assessment and referral for services such as pain and symptom management. Therefore, community volunteer training needs to include aspects of palliative care to equip them with the competencies that they require, as outlined in the APCA competency framework (APCA, 2009c). Education and training for nurses needs to be provided at different levels, for both those working within the general setting and those wishing to be specialist palliative care clinicians—training programs need to be fit for purpose and in line with the competencies required at the different levels of care provision.

Improvements can also be made to local and district-wide referral networks and patterns—often organizations are unaware of others working in their area and how to refer to them, in

Responses to These Challenges

Following Jennifer’s death, the nurse involved in her HBC spent time with the commu-nity volunteers discussing what went well and what they could have done better. Con-cern was expressed regarding the plight of Rose, Patience, and Mirembe. Patience and Mirembe were tested for HIV and found to be positive, so they were able to link Rose and her children to a local AIDS support organization to receive support and counsel-ling. The nurse was aware of her lack of understanding of palliative care and was keen to undertake relevant training. Meanwhile, she investigated the possibility of establishing effective referral networks be-tween their HBC organization, the district hospital, and the palliative care team.

It is not easy for nurses work-ing in HBC to work with the above-mentioned challenges. There are, however, ways in which they can overcome them.

To ensure accessibility to pal-liative care services (particularly

the same time, some nurses face a role conflict because they themselves are HIV positive or caring for fam-ily members who are ill. Finally, hierarchies within the health service in many countries mean that nurses, although often working alone and unsupervised, are not given the authority and respect they deserve, hin-dering them in advocating for the care of their patients (Downing et al., 2006).

(j) Developing services that are sustainable—within the context of a high burden of disease, limited resources is a perennial challenge and one that is faced by clini-cians in the HBC setting on a regular basis. Therefore it is important that, where possible, palliative care provision is linked closely with the community, inte-grated into existing health-care structures, and (in the absence of the funding re-quired) not resource heavy, thus providing local owner-ship and commitment from the district level to sustain services (Downing, 2007).

The high burden of disease means care is often needed by the whole family – this is particularly the case with HIV and AIDS, when it is rare that only one family member is infected, and care is needed by adults and children alike. This challenge can be compounded when trying to support child-headed households, which can be overseen by children as young as ten.



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PO Box 72518, Kampala, Uganda [email protected].

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particular between health facili-ties and HBC programs. There-fore, a comprehensive referral network can be set up to en-sure care is provided across the continuum of care and ser-vice providers. Improvements can also be made to the supply chain management, particularly with regard to ensuring that the essential medicines suggested for palliative care are available (De Lima & Doyle, 2007).

ConclusionThere are a variety of models of palliative care delivery across sub-Saharan Africa. However, HBC is one of the primary models of care that is helping to increase its accessibility and ensure the sustainability of palliative care provision. Nurses have a key role to play in the provision of pallia-tive HBC, both through direct clinical care and supervision and through mentorship of com-munity volunteers and others providing the care. Although challenges exist in sub-Saharan Africa to the delivery of pallia-tive HBC, these challenges can be overcome and palliative care can be successfully provided through the HBC model.

Julia Downing, PhD, MMedSci, BN (Hons), RGN, is the Deputy Executive Director, African Pallia-tive Care Association, Kampala, Uganda.

Richard A Powell, MA MSc BA, is an M&E and Research Manager, African Palliative Care Association, Kampala, Uganda.

Faith Mwangi-Powell, PhD, MSc Econ, Executive Director, African Palliative Care Associa-tion, Kampala, Uganda.

Address for correspondance: Julia Downing PhD, MMedSci, BN (Hons), Deputy Executive Director, African Palliative Care Association,


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Home-Based Palliative Care in sub-Saharan Africa

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