SUE: Mention the term hospice and what comes to mind? Death and dying usually, but this is too narrow a picture as I discovered when I had the opportunity a little while back, to travel around the country and report on the work of the South African Hospice and Palliative Care Association. While end of life care is one aspect of their work, I discovered that Hospice was as much about quality of life, as it was about death with dignity. And far from being a service for patients in the leafy suburbs, hospice offers palliative in-patient care to all who need it, wherever it has facilities. I met a number of remarkable women who are doing amazing work. The first of whom was Nkosazana Ngidi, a social worker at Highway Hospice in Durban where she’€™s worked for the past seven years.

NKOSAZANA NGIDI: Since we started having programmes in the communities the whole: concept of hospice has changed. In the black communities it was not known. It was just this elite thing for the selected few to die comfortably, but now we’€™ve changed that way of thinking and it’€™s more now like helping people who have been diagnosed with HIV and have been told there’€™s nothing that can be done to live until they die and not die before, you know, the minute they are told there’€™s nothing we can do for you. So it’€™s more about continuing to affirm life and improving their quality of life right up until they die.

EMMA BELOT: I’€™m Emma Belot, I’€™m a provincial palliative care development co-ordinator for the Free State.I’€™m working under the Hospice & Palliative Care Association of South Africa.

SUE: Can you tell me a little about the work of Naledi Hospice?

EMMA BELOT: Naledi Hospice started initially as Bloemfontein Hospice working in the area of Bloemfontein & surroundings. Initially we had a few patients with cancer, now we have a large number of patients, up to 500 patients, with cancer and HIV. But 95% of these patients are patients with AIDS.

Our main focus in hospice is palliative care. Which is not very much known to many people ‘€“ we define it as a holistic type of care that is given to people with incurable life limiting diseases. We mainly focus on cancer and AIDS as we know that these are the two diseases that are progressive and they may lead to the death of the patient. But the purpose of palliative care is more to improve the quality of life of the patient. Although the patient is living with a disease that may lead to his or her death, we encourage the fact that the patient must live to the best. We continue giving support to the patient and the family. We’€™ve seen that this has really improved the quality of life of patients.

Previously with palliative care, people were only thinking about death and dying in dignity and being with the patient until the patient dies, but now the focus is mainly on the life of the patient and to make sure that we are with the patient for everyday of their life, rather than be with the patient at death.

SUE: One of the strengths of hospice and its commitment to palliative care is the holistic nature of its approach. The need to care for the whole person seems so obvious, but all too often it is missing from our clinical services. This is especially so for patients who are jobless, often hungry, distressed about their condition and sometimes desperately ill and in pain.   Emma Belot again.

EMMA BELOT: The main needs of our patients ‘€“ first of all the pain. Our patients are suffering from total pain ‘€“ the physical pain is a result of the disease and also social and psychological pain as a result of the loss they are experiencing as a result of the disease. Most of our patients they lose their jobs because of their ill health and they lose family and friends because of the rejection as a result of stigma of HIV and AIDS. Some of them lose their children because they are too weak to care for them. The relatives take them not because they don’€™t want them to live with the patients, but because they feel that the patient is too weak to look after their own children.

So in palliative care we make sure that this bond and relationship between the patient, the family and the children remains strong, even if the patient is very sick. We make sure that every symptom that the patient is complaining about, we attend to. And we also make sure that we don’€™t overlook bereavement that the patients are undergoing.

We all know that the patients and their families have grief as a result of having incurable disease. And even the familes themselves they grieve, even if the patient hasn’€™t died yet, they are under stress, especially with HIV and AIDS. And you know, immediately a person is diagnosed with an incurable disease they start feeling bereaved already because they’€™ve lost their health. So the psychological support is very crucial.

SUE: Virginia Nzama is a member of the Children’€™s Team at South Coast Hospice in Port Shepstone. Their work includes counselling and support for children who have lost their parents, more often than not because of AIDS. The programme includes the distribution of memory boxes, small metal containers in which the children can store precious objects. They are also given paints and encouraged to decorate the boxes and talk about their feelings. I drove with Virginia along a dusty hilly road, heading inland from Port Shepstone as she explained the process.

VIRGINIA NZAMA: We are going to visit Madlala area, a family of three children where they lost their mother. They are living at the moment with the foster mother. We visit the children when the mother was very sick, so Children’€™s Team came along because there was someone sick in the house. When the mother passed away we did a bereavement (counselling) with the children and now we are going to do a memory box today with them. What we put in the memory box is a birth certificate for the children, a photo, it can be an old photo or a new photo. It can be anything which a child loves so much which was given by their mother or the foster mother can also give them, also a letter written by the foster mother explaining to them why they are involved with Hospice and explaining about their relationship, if something happens so they will know where to go. We have to build a good communication or a good frienship with the children because they can’€™t draw if they are scared of us. And they have to be comfortable enough to draw whatever feeling they could have because maybe they are still missing their mother which we could get. After the children draw everything on the memory box they have to tell us what did they draw and why.

SUE: providing care for almost two thousand people in the district, South Coast Hospice is involved in numerous mentorship and training programs for other hospices and home-based care groups in KwaZulu-Natal and beyond. She sums up the hospice philosophy and practice.

KATH DEFILIPPI: Hospice has for a long time been involved in social education ‘€“ if you look at trying to make people feel that death is a part of life, that it’€™s okay to die, you don’€™t have to put drips & tubes down people and that kind of thing, and that it’€™s also good to talk honestly and openly about what’€™s happening, not to try and suppress grief but go through the process of grief because that’€™s been happening since hospice was first started. But in terms of HIV that’€™s changed because now we find that morally any education we give must be linked to prevention, which is another aspect of prevention. Palliative care, because of the way it approaches groups and people etc. often is very successful with that kind of education. Here at SC Hospice for instance, we have a very special strong relationship with the traditional healers in our area. And that’€™s because of mutual respect. They have taught us a lot about   using some indigenous remedies very successfully, which we hope one day, with them, to document. We’€™ve even got a little medicinal garden which we grow and they sometimes give us plants and advice on things. And at the same time, they’€™ve listened to us about various things and they refer many people either to hospital and to ourselves. And this isn’€™t only with South Coast Hospice, I know community nurses in our area who have the same kind of relationship and where traditional healers play a strong role in monitoring TB treatment and also referring people for TB treatment and again teaching us so much about cultural norms and rituals which are so important. Because that’€™s the other thing I haven’€™t said yet about palliative care, is that palliative care is culturally sensitive care. Whoever comes to a hospice for care, no matter what the culture of the caregive is, but that their culture is respected.

SUE: Despite the good work that speaks for itself, palliative care is something of a Cinderella in the health sector. I asked Kath Defilippi why.

KATH DEFILIPPI: I think one of the reasons, is that we live in a technological age, the advances in medicine have been tremendous. When you think of in the last 60 years, what’€™s changed and so much focus has gone onto the hight technology stuff and much of that we’€™re all very grateful for. For instance, safety of blood transfusions, it’€™s even safe to have interuterine surgery before a baby’€™s born, so many wonderful things, but what got lost in the process; also the curriculi for training health care professionals got so crammed full with an ever-increasing body of knowledge, but the soft subjects like pain control, cultural and family things, something had to give and so they went missing. The hospice movement started in the UK in the early, mid-1950s and that was in response to the fact that because of the health care environment there was nothing for people who weren’€™t responding to cure. We live virtually in a death-denying society. In a society where perpetual youth is promoted. When people just didn’€™t respond to the wonderful, available interventions they were like a failure and health care professionals felt like a failure. And so they got very sadly neglected and pushed to one side.

I think that Hospice has had a big impact in the world, and has been very vocal, about the needs of the dying, and maybe it’€™s a pity that palliative care is seen as end of life care, and it’€™s so much more than end of life care and the focus is on improving the quality of life. It’€™s the combination of all the latest treatments and developments and drugs and technology, but that alone isn’€™t ok if it hasn’€™t got also human warmth and compassion and kindness and respect. And palliative care is looking at integrating those two fundamental aspects of care and of medicine. So really, it ought to be integrated. I think that HIV may be, despite the very many terrible, tragic results of HIV, I think it is going to lead to force palliative care to be more integrated into the formal health care system.

E-mail: Sue Valentine