Bruce Chooma
18 September 2007
Ndola — Extremely ill and diminutive souls lying in bed with sores or cancers eating into their flesh as it snugly clings to their bones, they clearly are awaiting their last breath.
This is the picture that normally comes to mind whenever the word hospice is mentioned. It is a widely held view that a hospice is a place meant to help people die in serenity. Essentially, hospices are viewed as places of solace and comfort that offer an opportunity for a peaceful and less painful transition to the other life. In recent years, so many hospices have formed in sub-Saharan Africa to provide what is called palliative care - helping people with HIV/AIDS cope with pain and with the trauma of facing death.
As a result, people with HIV/AIDS are suffering less and facing their deaths with a degree of dignity, helped of course by hospices and community-based caregivers. The problem is that these hospices unfortunately operate with thin resources and often times with little Government support. Our Lady's Hospice in Lusaka's Kalingalinga area on Kamloops Road is one classic example of a hospice trying hard to address its challenges one of which is the increasing levels of AIDS stigma.
The hospice had recently facilitated a tour to the institution by first republican president Kenneth Kaunda and some members of the donor community. Hospice administrator, Kay O'Neill observes that the magnitude of work that the centre does necessitates request for more resources.
"We have 33 in house patients and we are struggling to pay our workers because of lack of finances and first republican president Dr Kenneth Kaunda visited the hospice with some diplomats with the view of helping us to fundraise. His coming here was meant to help us realise some support from overseas donors. We have some resources from CIDRZ for the ART programme but we need resources to meet our many obligations," Ms O' Neil said. Reed Lindsay of the Independent International Reporter observes in her story, 'Africa AIDS Hospices' that while some experts argue that the only long-term solution to the HIV/AIDS pandemic is the prevention of future infections or the discovery of a vaccine, health care professionals and volunteers working in sub-Saharan Africa's poor rural areas and slums are trying to answer the more starkly immediate question of what to do about the dying. This is the gap that institutions such as Our Lady's Hospice are striving to fill. It is worth noting the background to the situation. In Zambia, as the HIV and AIDS pandemic begun to have its toll in the 1990s, there was subsequent increased pressure on hospices as more people were falling terminally ill at a faster rate, most of them in the prime of their productive lives. Our Lady's Hospice started in 2001 upon which care givers were trained to offer care to the terminally sick, mostly suffering from cancer and AIDS.
The introduction of anti-retroviral therapy (ART) has eased the burden on hospices, as more people are now able to lead longer and healthier lives once put on medication. Ms O'Neill observes that the coming of ART has brought new challenges and changed the way that hospices operate. Because of anti retro-viral drugs (ARVs), days when any frail looking person with a cough was instantly suspected of 'kanayaka', in colloquial vernacular, meaning he has full-blown AIDS seem to be gone. The hospice successfully enrolled over 4, 000 people on ART. Because ARVs prolong life and improve the health of people living with HIV, new challenges have emerged mostly relating to adherence to treatment as some people stop taking the drugs once their condition improves and when they try to start again they experience drug resistance. Coupled with this, is the issue of increased stigma when one is known to be on the drugs. "In 2004 the Centre for Infectious Diseases Research in Zambia (CIDRZ) introduced ART at this centre and this extended our mandate from merely offering care to the terminally ill but we have to deal with the challenges of ART administration. One of the biggest and most unfortunate developments is that the levels of stigma have also gone up as a result we treat a lot of people who travel long distances," Ms O'Neil said.
Apparently because of stigma from friends and other people in the community, some people opt to seek treatment at the centre, leaving ART centres close to their homes.
Lillian Mwando, a counsellor at the hospice said the levels of stigma in the community were at alarming levels as some people came from far-flung areas such as Solwezi, Mongu and Luanshya to seek treatment at the centre in Lusaka. She said even the visits that were conducted in the community to promote adherence counselling are affected as people do not want to be seen being visited by counsellors worse more if they are clad in hospice attire.
She said the hospice needed assistance in the area of transport as most field visits were affected by lack of transport. The Network of ARV Users in Zambia chairperson, Daniel Lungu observes that stigma is a major problem and has unfortunately made the cost of living for people using ARVs very high. He says his organisation has with support from the Zambia National AIDS Network undertaken activities aimed at raising public knowledge on the importance of ART in fighting the AIDS pandemic and to sensitise people living with the HIV virus to avoid any shame or self -pity. Lungu says the network is working on addressing the issue of adherence to treatment and how to deal with drug resistance. ART scale up is the best response for now with 7,000 people a day dying from AIDS in Africa, and under horrible circumstances for most people. As Peter Sarver, of the New York-based Foundation for Hospices in Sub-Saharan Africa put it, "it's an intolerable holocaust -there is a critical mass of people who decided to face this head on," In reference to the HIV and AIDS pandemic and the crucial role that hospices play. In Zambia, like other sub-Saharan countries, most hospitals have neither the resources nor the expertise to care for dying AIDS patients. Hospices and the community-based volunteers with whom they work are often the only source of support for those who are dying from the disease.
The hospice administrator further observed that chaplain work was a major part of the hospice. She said the patients were encouraged on God's word and strengthened to handle their status.
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