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 generally 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.

In Zambia, palliative care is provided by the following organisations (Table 1):

Table 1 Palliative care provision in Zambia, 2004

A feature of Zambian palliative care services is the prominence of the inpatient unit. During her visit to Zambia (2004) on behalf of the Diana, Princess of Wales Memorial Fund (Diana Fund), Anne Merriman comments:

Hospices have sprung up to meet needs where caring people have been inspired to set up alternative provision for those dying or critically ill within an inpatient setting. Most have an additional home care service which is mainly support care, covering patients from diagnosis to end of life…[There was] the presumption throughout all we met in hospices in Zambia that for everyone there came a time when they were too sick to stay at home. We found this rather sad, when we have witnessed dying at home to bring so much more peace for patient and family in other parts of Africa.⁴

She goes on to list the following reasons for the growth of inpatient units in Zambia:

1. Death certification is done in the hospital and police have to be notified of a death at home and order the body to be taken to hospital for certification which costs a lot of money.
2. The history of the men being employed in the copper mines means that 20% of the population are urban and have not the network support from local communities seen in other African countries. Thus families reject the dying and orphans. This is also given as a reason for the many orphanages.
3. Powdered morphine only available for cancer and only at UTH. Thus patient has to have injectable [morphine] unless there are tablets available from donors. This is only possible in an inpatient facility.
4. Morphine: Laws regulating morphine are very strict, leading to imprisonment. Law enforcement is separate to the police and is a group of clinical officers with a mandate to imprison without asking questions if the drugs are found on health worker or patient!

Mother of Mercy Hospice.⁵ The programme was established in 1992 to provide care for terminally ill patients in the community of Chilanga, approximately 16 km south of Lusaka. Most patients are HIV positive. The original home based care programme grew rapidly to meet the growing need for medical care and palliative support. It now operates a home based care programme for 520 patients, a 22 bed in-patient hospice, an out-patient clinic and a school for children affected by HIV/AIDS. The small day centre that was built three years ago has been converted to a large community school ( Guardian Angel School) for about 130 pupils ranging from 6 to 16 years old. There are 4 teachers. Up to 60 patients at a time are attended to at the out patient clinic, and 280 patients from the home based care programme receive food from the UN WorldFood Program.

There is an active ARV programme in place with 80 patients (50 children, 30 adults) currently enrolled on the programme. Less than 10% of in-patients are on ARV therapy. A local doctor who has specialised in ARV treatments allocates 2 to 4 hours per week to this programme. The acting director, Alison Hill connects a donor (either international or local) with a patient, whereupon the donor agrees to pay for treatment during the patient’s life. She then conducts the basic examinations, management of opportunistic infections, the preliminary laboratory work, CD4 counts and liver function. The doctor then has a consultation with the patient and prescribes any necessary medication. Patients are counselled and monitored. The adherence rate is very good due to the close monitoring on site. For the first 6-8 weeks, the children live in close proximity to the director, and she directly observes their treatment. During this time they spend 15 minutes or more with the counsellor every day to discuss the importance of taking medication and what their medications look like.

Up to 100 patients are visited in their homes each month by the home care team. The average occupancy at the hospice is between 95-100%, many of which are registered home based care patients requiring intensive care. The hospice additionally provides physiotherapy and extensive laboratory testing. All in-patients are screened for HIV, have a full blood count, and urine and stool analysis. The laboratory has capacity to do most STI screenings, pregnancy testing, cryptoccocal meningitis and sputum testing for TB. The hospice approaches palliative care for HIV/AIDS patients with a combination of symptom management, aggressive therapy, public health work in local communities, counselling and nutritional support. The hospice has a refrigerated 3 body mortuary unit on site. The deceased are kept here until such time as funeral arrangements have been made by the family.

Jon Hospice. This service is one of several programmes run by Kara Counselling. The hospice was founded in 1999 to cater for the needs of those dying from AIDS. Apart from a 26 bed hospice unit Jon Hospice operates a mobile hospice service to cater for the needs of patients, primarily children, in the community, as well as a day care centre for children. In 2003 there were approximately 500 admissions to Jon Hospice, and approximately 40% of those patients died at the unit. In April 2004 there were 56 admissions. There are 130 children registered at the day centre although 30 children attend regularly. Many receive education here as well although some attend for medical care only. The multidisciplinary mobile hospice team works closely with other home based care programmes to complement rather than duplicate services, and travels twice weekly into the surrounding community. A 3-body mortuary is on site and operates as a transit facility for the removal of the body from the ward prior to removal to a government health facility.

Other Kara Counselling programmes include Hope House (life skills training and VCT), Umoyo training centre (skills training and literacy classes for orphaned girls), Martin Hospice and Ranchhod House, Kabwe.

Ranchhod House.⁶ This service was established in late 2003. A town office in Kabwe doubles as a drop-in centre for HIV counselling and testing. From July to December 2003, 182 Voluntary Counselling and Testing (VCT) sessions were held. For the same period 21 people received general counselling. Numbers have increased dramatically since then. From January to May 2004 a total of 551 received VCT counselling while 31 people were counselled on other issues. Ranchhod House (named after the Asian businessman who donated the house) incorporates a 15-bed adult hospice unit that opened on 9 October 2003. It has expanded to provide a children’s day centre for 40 children aged up to 7 years. A street children’s programme is also being established as a preventative measure for vulnerable children. There were 127 admissions and 29 deaths at the hospice from October 2003 to May 2004.

Our Lady’s Hospice. This establishment began operating its training and outreach programme in 2001 and the custom-designed 22-bed in-patient unit opened in August 2003. The facility is designed to serve patients with any terminal condition, but most have HIV related cancers. The hospice comprises 4 houses, each with 3 rooms that are furnished with 2 beds. There is also an 8-bedded special care/observation unit where acute day patients are stabilised before transfer to the wards.

The organisation trains its volunteers who then visit patients in their homes. The outreach programme is thought to be the most important aspect of the service. Relatives are encouraged to look after patients at home with support from hospice staff who provide medical care and training, together with advice and encouragement. An outpatient clinic operates twice weekly and provides a mobile service – also twice a week. A comprehensive ARV programme has been implemented by the doctors on the Board. This links into an agreement between the Zambian and US governments and the University of Alabama. All in-patients receive these treatments. School fees for 30 children in the surrounding community are paid by the hospice as a sustainable effort to help families cope with poverty and illness.

Martin Hospice. Based in Choma, about 5 hours drive from Lusaka, this programme offers a 12-bed in-patient unit, a day care centre for 25 children and an outreach programme using already existing diocese home based care programmes.

Cicetekelo Hospice ( Ndola Hospice). Anne Merriman notes in her report to the Diana Fund:

At the entrance to the Ndola Hospice Compound there is a notice: Ecumenical Hospice Association, Ndola. However it is known popularly as Ndola Hospice.⁷

Robert Sihubwa visited the hospice in October 2004 as part of a national survey of hospices in Zambia (on behalf of the Power of Love Foundation) and comments:

Cicetekelo Hospice is about 30 minutes drive from the main town of Ndola in Lubutu Community…The hospice is built on a plot of land measuring approximately 30x 100 metres. The hospice also owns and manages a grocery shop and grinding hammer mill that are used as income generating activities for the hospice.⁸

There is a 25-bedded inpatient unit for cancer patients and HIV patients. This can be extended to 30 beds if necessary. The majority of patients are terminally ill with HIV related There is also home based care for 200 registered patients and 1200 orphans. Provision of food through the World Food Programme is a central part of the organisation’s provision.⁹