Eight organizations in Kenya provide palliative care services (Table 1).

Table 1 Palliative care provision in Kenya, 2004

In resource poor areas, the blending of supportive care with hospice/palliative care is frequently linked to the development of previously established services, particularly home based care. Where opioids are unavailable, however, the definition of palliative care can be problematic. We have taken the view that where a service is in the process of development from (largely) physical care to a broader form of holistic care that approximates to the WHO definition, it should be included in the review.

The government of Kenya has no official palliative care policy although it is supportive of palliative care in the country. The Ministry of Health is working on a five-year Health Sector Strategic Plan and has invited Nairobi Hospice to sit on that committee. Nairobi Hospice is also consulting with the Ministry of Health on the development of a manual guiding palliative care for cancer of the cervix.

There are six established hospices in the country: Nairobi, Meru, Kisumu, Nyeri, Eldoret and Coast (Mombassa). A further service is developing in Nyaharuru. There are palliative care teams in two mission hospitals, Chogoria Hospital and Maua Methodist Hospital, both in Meru district.

Nairobi Hospice

Nairobi Hospice started in 1990. From the outset the approach of this hospice was two-pronged to provide both a home based care service and training . The 2003 Annual Report describes this hospice as providing and promoting

the highest quality of total care possible for people with advanced cancer and AIDS and to provide counseling and support for their families and other individuals important to their care…The care is given to terminally ill patients on an outpatient basis, in the hospitals and in the patients’ own homes within a radius of 20 kms. The service combines patient care, education and training of relatives, community and health care professionals.²

A day care facility was initiated in 1993 and operates every Thursday for up to 20 patients. Dr Zipporah Ali describes the service:

[We] have somebody who has offered us a van, a tour van that goes to pick the very sick patients from their homes and they’ll be dropped here and they usually spend the whole day here and they’re able to have breakfast, lunch cooked for them by the volunteers, and of course will be reviewed by the medical team for their medical needs. If there’s any counseling… that has to be done, they are all done on that day. So they spend day among themselves where they interact and share whatever is going on their lives, and I think this is a very positive thing for those patients³

An acre of land was provided by the Kenya government in 2001 in the grounds of the Kenyatta Hospital in recognition of the work of the hospice. Fund raising is underway to raise money to be able to build permanent premises on this land.

Nairobi Hospice has an average caseload of 100 per month within the city. Referrals come mainly from Kenyatta National Hospital in whose grounds the hospice is situated. Other referrals come from private doctors and hospitals in Nairobi. Upcountry patients are referred when they receive radiotherapy, chemotherapy and associated hospice support, and swell the hospice numbers to around 1,500 patients. Thus over 90% of patients are from up-country and only 6% from Nairobi itself. From July 2002 to June 2003 the total number of home contacts reached 1186 while hospital contacts accounted for 1,862. Follow up bereavement visits numbered 116 relating to 132 deaths during that year. Over 60% of these occurred at home.⁴ There were 601 new cases referred to the hospice in the year 2002-2003, an increase of nearly 10% compared to the previous year. The gender profile indicates close to twice as many females as males. The increase is attributed to effective marketing of the service, and a positive reputation in the community. Cancer of the stomach is one of the 3 most common cancers seen at the hospice. This follows cancer of the breast and cervix⁵. An estimated 65% of cancer patients are expected to be HIV positive, and approximately 25% of patient load are non cancer-related HIV positive.⁶ It is estimated that since inception to the end of September 2004 about 5,690 patients have been registered with Nairobi Hospice.⁷

The service provides symptom control, psychosocial support and bereavement support. Care is home based although there is an out patient clinic for patients well enough to attend. The hospice team also does hospital visits. Those patients who are not too ill and able to come to the hospice spend the day at the day care centre in order to interact with one another. This gives them the opportunity to be examined and reviewed by the clinical team, and is a respite for the main carers. Volunteers do the shopping, cooking, and serving of meals, and socialize with the patients.

Most Nairobi Hospice patients live in poverty in slum areas of Nairobi. One of these, Kibera, is the largest slum in Sub-Saharan Africa where close to a million people occupy shanty dwellings with few facilities.⁸ Provision of food to patients is often necessary so that medications can be taken safely. Nairobi Hospice is the main trainer in palliative care in Kenya.

Meru Hospice

Meru is situated at the base of Mount Kenya and is hilly with plentiful rain and volcanic soils. Meru Hospice provides a 6 faceted programme for those living with terminal cancer and AIDS. This includes:

• care and support including physical, psychosocial support and material support for the patient and family
• nutrition. A 2 acre garden provides space where families are taught agricultural methods to produce high yields. Counselling on nutrition and diet is provided
• care of orphans and vulnerable children including facilitating adoption, enrolling children into school and clothing them
• economic empowerment and rehabilitation of patients well enough to return to work
• medication and ARV treatments are provided
• public awareness and providing palliative health care training in the community

These goals are accomplished through two separate but interlinked services. An outpatient hospice clinic based in the grounds of the district hospital receives referrals for both cancer and HIV positive patients. This is referred to as the End of Life Care programme. Home visits are made twice a week to patients in both district and private hospitals as required.

An HIV/AIDS care centre in another part of the town has been developed specifically for patients living with AIDS. This daily service provides counselling, nutrition education, symptom control and treatment and antiretroviral (ARV) support. It also serves as a recreational centre for children affected by AIDS. Dr Bactrin Killingo comments:

…in the era of HIV we were faced with the challenge of responding to the plight of people who are HIV positive, for the following reasons. There are those who presented to us with cancers and who are HIV positive and these individuals had spouses and children who were HIV positive. When they passed on we found that there was no way we were going to abandon them because they too started entering in non-cancer-related chronic illnesses but who are actually fairly advanced, so we felt that we needed to come up with a formal support for people living with HIV/AIDS who … end up in the chronic stage, and provide care for them. And that is where we got involved with treating the opportunistic infections, offering them prophylactic measures, providing antiretrovirals ...⁹

Partnerships with other HIV/AIDS organizations, such as UNICEF avoid duplication of services.

Both programmes link families with micro financing institutions to develop business projects. A local bank provides low interest loans for income-generating activities to people living with AIDS who may have lost jobs through ill health.

Now we have come, we have provided them with physical support, social support, spiritual support, they are back on their feet, their children are back on their feet, but they have nothing to do, so we felt that economic rehabilitation [was necessary] in terms of providing them with these opportunities for them to go back and use their energies to go back to life, and also be able to support their children and also be able to support themselves.¹⁰

An average of 8-10 new patients are referred to the hospice each month accumulating in a patient load of between 100 and 150. Up to 10 patients attend the HIV/AIDS day centre each day and spend approximately 3 hours receiving medical and emotional attention.

Eldoret Hospice

This palliative care team was established in 1994.¹¹ The number of patients cared for by the end of 2004 reached 1342. In 2004 a total of 103 visits were made to patients in hospital and 35 home visits. The hospice has potential for 8 admission beds but these are not in use at present due to inadequate resources.

Presently, we visit the patients in hospital following consultations by the ward doctors. We do assessment of the patients and put them on appropriate palliative treatment. We follow up the patients while they are in the ward, and on discharge they pass through our clinic before they go home. At our clinic, we review them and give them a new appointment.¹²

The team visits the hospital twice weekly on Mondays and Fridays. Home visits are done on Tuesdays and Thursdays.

Coast Hospice

This hospice was established in 2001 and is hosted by the Coast Provincial General Hospital. Based in Mombasa city, it is the largest Government hospital in the province. The disused morgue has been donated to the hospice for renovation and rehabilitation into a clinic. The patient base starts with a visit to those diagnosed with cancer in the hospital. After discharge through the hospice system, follow up support in the form of symptom management and pain control is provided at the patient’s home. In 2004 a total of 1,088 contacts with patients were made. Of these 52% were hospice clinic-based while 42% were seen in the wards. The remainder were home visits. There were 424 new patients registered in 2004.¹³

Nyeri Hospice

Nyeri hospice is a non-profit making registered charitable organization. Services include home based care, hospital consultations, day care, outpatient, bereavement services and training. Established in October 1995 originally as a satellite of the Nairobi Hospice, its objective is to extend quality palliative care to rural areas of Kenya.¹⁴ Initially care for people living with HIV/AIDS was achieved through networking with a home-based centre in Karatina. However, from mid 2005, home based care for these patients will be provided by the hospice.

The goals of the hospice are stated to be:

• relief of pain and other distressing symptoms
• psychological and spiritual care for patients, so that they may come to terms with and prepare for their own death as fully as they can
• a support system to help the patient live as actively and creatively as possible until death, thereby promoting autonomy, personal integrity and self-esteem
• a support system to help families to cope during a patient’s illness and in bereavement
• ongoing emotionally support to carefully selected staff¹⁵

Palliative care awareness campaigns are considered a priority. These are directed at professionals in the surrounding hospitals as well as monthly hospice awareness campaigns to the lay community (adult classes, churches, primary and secondary schools and chiefs’ barazas¹⁶) in the surrounding divisions. These campaigns have been sustained for the last 8 years and have covered most catchment areas.

An average of 130 patients are attended to per month and about 30 home visits are undertaken each month. Approximately 24 new patients are registered every month.

Maua Methodist Hospital

 Since 2002 three home care programmes have become established, with organizational, nursing and medical support based at Maua Hospital. Palliative care coordinator Stephen Gitonga comments:

It’s a home-based sort of care. We have nurses from the hospital, we have a doctor and we have a clinical officer who is involved in this care. We make visits at a community level every week, one day a week. The hospital is really running on a very tight budget because of the resources and as such when they are available they move with the nurses to the community; and the patients know the days that we come and they will come [to see us]. If they are not able to come the volunteers will come who will give us the report and depending what the volunteers tell us, we conduct home visits.

So we go and see the patients there. We assess whether we have to adjust the morphine, whether we need to give them more drugs. We are able to do that at that level, and the volunteers are very instrumental. The patients who are now in our programme who are also receiving antiretroviral drugs, they have become changed images, they will come and report those patients who are not taking their ARVs and as such we are really in touch in that way.

The other thing also is that, because we believe this a community based palliative care programme, we have set up community based clinics at the community level. And we have equipped these clinics with very basic drugs, that the patients can access from there, so that if they need Brufen, if they need Paracetamol, the drugs are there and the patients are able to access the drugs.¹⁷

Chogoria Mission Hospital

In 2001, David Allbrook visited Kenya on an International Association of Hospice and Palliative Care (IAHPC) travel fellowship and gives some background information about Chogoria Hospital:

At Chogoria Hospital, in South in South Meru, HIV/ AIDS, malaria, cancer, and cardiac problems account for the majority of deaths. In year 2000, 286 cancer cases were diagnosed, comprising 27 gastric, 19 breast, 16 esophagus, and 17 primary liver cancers. Deaths attributable to HIV/AIDS were 20.36% of adult deaths. Half of bed occupancy in this hospital is said to be HIV/AIDS related.¹⁸

Community Health Adviser Elizabeth Grant and her colleagues enquired into the meaning of a good death in rural Kenya. The study was conducted on the eastern slopes of Mount Kenya, the home of the Meru people. They write:

We listened to 32 people patients with ongoing cancer or AIDS, and to their carers as they talked about end-of-life experiences and care needs. Patients described how the support of close family relationships, and the care shown by their community and religious fellowships helped meet many of their emotional, social and spiritual needs. But physical needs often went unmet. Patients died in pain. Some suffered in poverty, others were troubled by the guilt of using all available family resources to pay for treatment and care. Accessible pain relief, affordable clinic or inpatient care when required and help to cope with the burden of care were among the key needs of the patients. Until these are available, many will not die well.¹⁹ ,²⁰

Kenya is a multi-faith country and most Kenyans subscribe to some form of religion. Zipporah Ali, a physician from the Nairobi Hospice comments:

I think we are very spiritual people: OK we have got Christians, we’ve got Muslims, we’ve got Hindus, we’ve got Buddhists, whatever, … but I think people are very conscious of spirituality here and religion really, because actually we don’t differentiate between spirituality and religion. Women have fellowship groups, the young folk with the youth groups, you know, so these groups are very supportive. And it’s very rare that we ask somebody ‘Do you go to Church?’ and they say ‘No, I don’t go to church.’ You find that almost everybody goes to church. The Muslims here I think are also very supportive to children. The other day we had some people visiting from a Hindu community and they were coming to support our patients - and our patients are not Hindus, most of them, they are Christians. So I think there’s a lot of spirituality going on - it’s something of a platform for most of the things that we do in this community.²¹