SUE: The World Health Organisation defines palliative care as an approach that takes into consideration the physical, psycho-social and spiritual needs of patients and their families and seeks to improves their quality of life. Bongiwe Mhlongo is the project co-ordinator for Zululand Hospice in Empangeni in northern KwaZulu-Natal. She explains what hospice brings through its palliative care approach to HIV/AIDS.
BONGIWE MHLONGO: I think the difference that hospice brings into the community is that hospice is doing holistic care for the patient. It goes beyond that, it cares for the patient, it cares for the whole family, that is the children of patients are well looked after. And when hospice cares for the patient, hospice does not only take care of the physical needs like giving medicines, but also hospice goes beyond, to provide emotional support to the children and the parents as well and that removes a lot of emotional pain that people go with.
SUE: Further down the KwaZulu-Natal coast at Port Shepstone, South Coast Hospice cares for more than a thousand adults with HIV as well as some 200 children made vulnerable by the impact of the disease. The director of South Coast Hospice is Kath Defilippi who explains the symbiotic relationship between hospice and hospitals and clinics in the area.
KATH DEFILIPPI: At the time of diagnosis of any life-threatening illness an element of palliative care is required. People need to be able to talk about their fears, they need emotional support, if they break down and cry. Normally the health care system doesn’t deal very well with those kinds of things, so an element of palliative care is necessary right from the time of diagnosis. They need people to be able to communicate honestly with them and inform them of what’s happening. Those are the kinds of things that palliative care and hospice is very good at doing. At the same time, they need state of the art management of their opportunistic infection. Palliative care principles ought to be incorporated into every aspect of health care,and I think that’s what the hospice movement is doing worldwide, is trying to get those palliative care principles that really give respectful personal care to people.
SUE: Virginia Nzama has worked on the Children’s team at South Coast hospice for almost four years, caring for orphans or families where parents are sick with AIDS-related illnesses. I asked her how she copes with this work.
VIRGINIA NZAMA: It’s hard. [sighs] Very hard, because although you do, it’s very nice and happy when you see people that although there is painful and problem, there is light for everything you are doing. It also makes me feel very happy to help other people because some of them don’t know where to go and they don’t know where to start. So for showing them light, for me it’s healing. Even if things may look darker, but there is a light.
SUE: Back in Empangeni, Bongiwe Mhlongo says the pain of dealing with the impact of HIV/AIDS on individuals, families and communities is matched by the fulfilment one gets from making a difference. Pulling out a letter sent by a patient, she says it is feedback like this that makes the work worthwhile.
BONGIWE MHLONGO: The letter was written by the patient on the 26 of May 2004. It goes like this: ‘Hospice I am writing this letter in great joy because of all the beautiful work that you have done for me. I am now feeling better emotionally and my children are very happy. I really had no means of paying my children’s school fees and to buy them school uniforms, but you have done all this for me. I just want to thank you for your love and care. Bonisiwe, your care-giver, visits me all the time to check me. She does not get tired to do this. All this makes me feel in warm hands. I believe that my days will be now prolonged because I am emotionally secured. You have removed the schooling burden of my children. God will thank you on my behalf according to the way He deems fit to bless you, thank you very much, your patient, Mrs Nelisiwe Mbele.’
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