In South Africa, around 60 organisations linked to the national association – the Hospice and Palliative Care Association of South Africa (HPCA) - provide a range of services for patients and their families (Table 1).

During the association’s annual general meeting in 2004 (Rustenburg), delegates who attended a parallel session presented by Michael Wright were invited to complete a questionnaire that focused on palliative care service types, education and training, challenges, opportunities and service successes. A self-select sample returned 34 questionnaires and the data therein have helped to inform this report.

Service types include the following:

• Inpatient care
• Home care
• Day care
• Clinics/ drop-in centres
• Hospital support teams
• Education and training
• Patient support groups
• Bereavement care
• Foster parent support groups
• Orphan support groups
• Hospice care for the homeless²

Table 1 Palliative care provision in South Africa: HPCA members/affiliated members, 2004

Many of these organisations have branches which provide palliative care services in local settings; examples are shown in Table 2.

Table 2 Examples of hospice/palliative care organisations with local branches

Source: Member Hospices of HPCA, 2004

Not all organisations that provide palliative care in South Africa are members of HPCA. This may partly be due to a desire among international organisations to retain a strong element of independence. The Dream Centre ( Durban) appears a case in point. Yet without the networks and support of HPCA, establishing a patient base and collaborative relationships can be problematic.

The Dream Centre opened in 2002. Publicity material describes it as a palliative care centre with a 240 bed inpatient facility that provides institutional home based care. Collaboration has been established with McCord Hospital, Durban, and the centre operates as a mission in association with Ambassadors of Christ, Canada. Staff and services are stated to include medical doctors, nursing staff, social workers, psychologists, physiotherapists, occupational therapists, HIV counsellors, spiritual counsellors, support group services, income generation projects, and antiretroviral treatment programmes.³

By October 2004, however, the facility was little used with two thirds of the beds remaining empty. IRIN, part of the United Nations Office for the Co-ordination of Humanitarian Affairs, reports:

According to the centre's management, the low usage is because the concept of step-down-care, which functions as an intermediary between hospital and home-based care, is relatively new and has not been integrated into provincial hospitals' response to the HIV/AIDS pandemic. Although the centre is funded by the South African department of health, there has been "a lack of proper cooperation" between provincial hospitals and the Dream Centre, said Dr. Henry Sunpath, the medical director.

There are less than a handful of step-down-care institutions in the entire country, added Vincent Chitray, one of the Dream Centre's social workers. Most provinces operate drop-in-centres that provide immediate aid, rather than practical long-term assistance. The Centre integrates palliative care and rehabilitation, which it provides to HIV/AIDS patients until they are ready to return to their homes, and offers terminal care to patients in the last stages of the disease. "We provide care for those who need care the most and for whom no [customised] care system exists," Sunpath explained.

After the Dream Centre opened in July 2002, Sunpath visited all provincial hospitals to introduce the concept of step-down-care to doctors, nurses and other healthcare workers. With beds remaining empty and public hospitals showing little initiative to collaborate, Sunpath and Dream Centre general manager Les Harris have asked the KZN department of health to intervene and organise a meeting with the province's hospital managers.⁴

In South Africa - unlike most other African countries - palliative care services may be found in hospital settings country-wide (Table 3). This feature is reflected in the movement towards a free-standing palliative care society, a proposal discussed at the HPCA AGM in 2004.

Table 3 Examples of hospitals with palliative care services/ interest

In Cape Town, palliative care provision at the 2 Military Hospital is described as follows:

Situated within a general hospital, the patient has access to palliative care and all its facets from the time of diagnosis of curable and incurable cancer. A major advantage is the availability and affordability of a full multi-disciplinary team, which can provide services and support to other departments, e.g. dietician.  Additionally, this particular hospice is combined with a rehabilitation unit, which allows cost effective use of staff as well as space.  The issues of loss/grieving/disability and impact on psycho/social functioning are similar.  Because of this system, by the time a new symptom develops or some serious event occurs, the patient and family are familiar with palliative care, the ward and the system.⁵

 In addition to 2 Military Hospital, St Luke’s Hospice ( Cape Town) has established close relationships with Groote Schuur Hospital (especially the oncology and pharmacy departments) and Michael Mapongwana Hospital (where a hospice sister runs a day clinic on the premises).⁶

Barbara Campbell-Ker, executive director of the Hospice Association of the Witwatersrand, describes the links with Johannesburg Hospitals:

As far as the hospitals are concerned, we actually employed one of the palliative care doctors in the Johannesburg General Hospital because the Palliative Care Institute, which was run by professor Selma Browde, who’s well-known as far as palliative care in concerned, she has partially retired: and she asked me if I couldn’t possibly help with some funding for the doctor, which I did for five or six months. But, yes, there is a team of doctor and two nurses in the Johannesburg General Hospital doing palliative care, not just palliative care of the dying, palliative care of everybody, in other words if burn victim needs palliative care, if somebody who’s really ill with early stages motor neurone et cetera - so not just the terminally ill. Then there’s a very fine palliative care team in the Chris Hani [Baragwanath] Hospital in Soweto: they’ve done sterling, sterling work and Dr Rusty Russell [Alison Russell], she’s exemplary in her passion for palliative care. But, yes, palliative care is beginning to be visible in the hospitals as well.⁷

Patient statistics (national), 2003-2004

Between 2003 and 2004, data returned to HPCA indicate that 24,613 patients were cared for, of whom 12,413 had an AIDS diagnosis and 9,233 had cancer. Most referrals originated from family, friends or state hospitals (Tables 4-6).

Table 4 Number of patients: HPCA membership, 2003-2004

Source: HPCA SA Annual National Statistics 2003-2004

Table 5 Patient diagnoses: HPCA membership, 2003-2004

Source: HPCA SA Annual National Statistics 2003-2004

Table 6 Source of referrals: HPCA membership, 2003-2004

Source: HPCA SA Annual National Statistics 2003-2004

During 2003-2204, an aggregate of around 48,000 patients utilized hospice and palliative care services in South Africa (Table 7)

Table 7 Utilisation of services: HPCA membership, 2003-2004

The following extracts from interviews with palliative care workers give an insight into the nature of these services:

In the Integrated Community Home Based Care programme, we have a community care worker – what you would call an ancillary care worker; it’s a base level of three, four, five months of nurse training with a palliative care component. And on the first assessment, when the professional nursing sister goes to the patient’s home, she will take a community care worker with her so that the community care worker is well aware of the family dynamics, of the exact problem of the patient, and will work with the professional nursing sister; so that, once that patient has stabilised, symptom managed, pain controlled, any other problems ironed out - that community care worker can do those interim visits, bed-bathing the patient, washing the patient, perhaps cooking breakfast in the morning for the patient because of course we’re not talking first-world, we’re talking very much third-world with huge problems of stigma, of no resources whatsoever. So if that family member can get a job – even a part-time job – they will leave the patient unattended, and sometimes in the most appalling conditions. So the community care workers would pop in. We try and let the community care workers work in the area where they live so we divide the area into segments. We also try to have10 community care workers per nursing sister. The nursing sister will do the interim visits and the community care worker will do the regular visits in between. In their kit the community care worker can’t take any of the opioids because in our country, unless you’re a professional nursing sister at least, you cannot dispense medicine. That might have to change. Certain dispensing laws are being promulgated in parliament at the moment, but they can take in the very basic aspirin, with the dressings, gloves, aprons, soap, Savlon or Dettol to clean the wounds, but very little besides that. But at least it helps.⁸ Barbara Campbell-Ker – executive director, Hospice Association of the Witwatersrand, Johannesburg

The day centre opens here [in Inanda) twice a week. Activities in the day centre concern support groups; we give some talks and we try to partner with other organisations so that they can come and give talks. We find those patients that have been in support groups for some time make the others feel more at home. They talk about how he or she disclosed to her family about her [HIV] status; who did she talk to first? and how did she handle that? The average attendance I would say is 40 to 50 on a Thursday. Then we have opened up on Tuesday; the numbers are a bit less because we had to select for certain areas to come on such a day. And we have seen positive results. There were people that were said to pre-terminal or terminal when we initially had contact with them, but finding that the main problem was poor symptom management and hunger, then you know, when those things have been attended to we see people rising up and improving. Some are no longer in the programme; they started with a one-day job and then we feel they can go and hunt for the actual full-time job. So those are the positive results that we are seeing. Mandla Mtatembi – day centre manager, Inanda, Durban.⁹

Most of our patients live in the poorest of the poor conditions, and our sisters said there were so many mothers dying and very ill, there was no-one to take care of the children. Sometimes they lived with grannies. For example, one granny had arthritis, she had the three-year-old she was looking after, mother had died, and an eight- and a ten-year-old, who were not doing well at school. And one day I said to Angie [Sehoke] ‘Why are they not doing well at school?’ She said, ‘Well granny’s got arthritis and she can’t pick up the children so they only go to school on alternate days so that one can stay home and help granny’. And that motivated us­- with no money - to go and look at the house next door - which we purchased. The bank wanted to know how we were buying a house, and I said, ‘On faith!’ They weren’t so keen to give us a bond on faith; but they did, and we started a crèche there for our children, a palliative day care crèche. We pay for taxis to fetch them and they bring them in every morning and take them home at about two o’clock, or half past two in the afternoon. With us they have two meals a day, get vitamins and they’re really doing so well; they’re all HIV infected, or affected. Joan de Jong –executive director, Hospice North West.¹⁰

I think one of the special challenges is actually just dealing with the dying child and the emotion and the impact it has on those caring for the children; it’s very hard and we’re lucky in having tremendous spiritual support, especially from our chaplain, Father Keith, who brings in rituals and support programmes for the staff to help them to cope; so that’s one of the big things. The other, of course, is communicating with children. You know, we’re very good at communicating with words but children need play and we work in poor communities where people have forgotten to play or they just feel that there’s no fun left in life and to bring that back into their communication with the children; and then of course the abject poverty that most of our children live in, when the basic need is food just to keep them alive ‘til the next day; and we also often see children who are sent in - dying of AIDS according to the doctors - and when they come to hospice we find they’re dying of starvation; and we actually act very, very aggressively to feed them because we found three quarters of the children that are sent to us dying, if we feed them properly we actually bring them through. Then of course are the issues of orphanhood. So many children are orphaned - not necessarily that their parents are dead but their parents are very ill and can’t care for them or they’re abandoned. We have one little boy whose in our programmes and his mother died of AIDS. His father’s infected; and his father one day locked him in the shack and went to Johannesburg and for three months this child who was three years old was fed by neighbours through the window; and it sounds strange that they didn’t call anyone in or take him out - but there’s often this fear that if they interfere, they will be assaulted or abused or have their shacks burned down. So the neighbours kept on putting food and water through the window for this little child. It was only when somebody doing a project in the community found him that he was brought to us. And he was totally, totally traumatised as you can imagine; covered in sores, skin and bone, and for about two months all he did was sit and rock and cry. But then he started eating and now he’s the fattest, chubbiest, happiest little son and he’s been fostered by a family. So nutrition is so very important, you know, before you even go in with palliative care interventions, you actually need to take food in to the situations that we’re working in. Joan Marston – founder, St Nicholas Children’s Hospice, Bloemfontein; and advocacy officer HPCA.

Challenges facing palliative care development in South Africa have been stated to be:

• Raising palliative care awareness for the public, health professionals and ministry of health officials
• Recruiting qualified staff
• Emigration of trained staff
• Funding and resources
• Partnering with government
• Lack of palliative care policy-making and integration into practice
• Resistance to change on the part of health professionals
• Smooth referral from clinic and hospital to hospice
• Availability of opioid drugs
• Number of child-headed families
• Denial of the seriousness of the illness
• Transport
• Time taken to admit a patient to a programme
• Poverty
• Lack of volunteers in some regions
• Distances covered by individual services
• Roll out of ARV therapy.

Flora Kobotlo Modiba and Elna van der Merwe speak of some of these challenges:

I had many challenges and problems setting up the service. Firstly from funding: I didn’t have money to set up the proper structure, I had to use what was my salary and I found a lot of resistance from the medical fraternity: the doctors, they didn’t know anything about palliative care and they wouldn’t accept instructions from me as a nurse to ask them to prescribe morphine for the patient - because at that stage the perception was that morphine was only prescribed for people when you want them to die. They did not understand that it was actually a rescue medicine that makes people more comfortable. So I had a problem with the doctors accepting my expertise in palliative care. And also the referrers: I had problems getting referrals from the clinics and from the doctors because they just did not understand the work that I was doing. And as the bulk of my patients came from lay referrals and I did not have medical reports that substantiated the patients’ conditions and diagnoses, at times I had to take blood myself and send it to laboratories so that I could have something in writing that would say a patient is an HIV/AIDS patient. That cost me a lot of money that I didn’t have. Flora Kobotlo Modiba – founder/ directorArebaokeng Hospice.¹¹

I think the biggest challenge for us is not to get into the mentality that we are a hospice and we need your support and your money - because that’s true, we all do. But take out patients that are at home that are diagnosed quite early in their disease: if their symptoms are under control then they can live an active life. But if you do not have a job and you do not have a way of getting an income or a job creation situation, then you are putting that patient back into a situation where he’s under stress, because he can’t provide for his family. And I think that one of our challenges is: how are we going to incorporate the services of hospice into community upliftment projects, where the community are able to generate an income for themselves? If hospice can play a role in exporting that - whether it be arts and crafts, whether it be cultural aspects of society, whether it’s any of those things - if we can help them to export that and earn an income from that we are actually creating a circle where everyone is doing something for the other. And I would really like to see this hospice ten years from now, where we have say ten projects that we are marketing overseas - yah, that we can market overseas - that are bringing in an income for this hospice. And I think that we are not just doing something for them, but they are also serving us, and we are helping each other to create a new way of looking at palliative care, because it then makes the whole circle - and until they die - and we give them such a hope that they feel they are still able to contribute to society in such a special way; it’s not just that they are on the receiving side of everything every time, but they are actually giving something back. Elna van der Merwe – nursing services manager, Centurion Hospice. ¹²

Opportunities for palliative care development in South Africa are considered to be:

• Gradual raising of palliative care awareness
• Education and training
• Greater focus upon research
• Structured programmes
• Education for life: behaviour change
• Community involvement and interest
• Growing recognition from the ministry of health
• Well developed district health systems as an infrastructure for pc development
• Programme of capacity building
• PEPFAR funding
• Involvement of faith based organisations
• Growth and acceptance of support groups
• Increased cross-cultural awareness
• Expansion of pc programmes to include the development of skills: sewing, art
• Growing international recognition of HIV/AIDS in Africa
• International networks.¹³

Edith Khumalo, social worker at Soweto Hospice refers to many of these opportunities:

We do get challenges although there are those days when we feel very [uplifted]. For instance, I’ll speak of my part as a social worker: to trace a patient’s family; to give support to that patient; when we have money, to get the family and the patient being cooperative; and you feel that you have achieved some success. Dr Thobi [Segabi] has just mentioned: most of our people, when they start getting sick the majority don’t just go immediately to seek help from the doctors; they will try this and that. And it’s only when they come here, when they are really sick that, you know, they realise how serious their sickness is. They were told - especially most of our female patients, when they go for check-up, especially when they are pregnant - they are immediately told, but because the wife feels she’s still OK they don’t realise the implications of being HIV positive. Despite the counselling, despite what they were taught, the changing of lifestyle, they’ll just go on and on. So when they come here, they haven’t even started, you know. They’ve not applied for this grant, this state grant, which actually helps them to be able to buy good food, so that when they take medication then they are able to become better because they eat healthily.

So what I achieve at times is, like I said, help from the outside agencies - for instance our home affairs person has been very cooperative. Most of our sick patients, when they are unable to go to apply for this grant, [the officials] come here to our hospice; they bring their machinery and all that. And they have agreed that as long as we have sent somebody home, that somebody has been appointed by the patient herself - who would be given power of attorney - then we can manage to apply for those people. And it becomes so great when we know that the grant has been approved and the family is no longer suffering. And at times, you know, people come crying because, you know, they cannot accept that; but just talking to them, just talking and counselling, we find a changed person.¹⁴

A patient who attends a hospice day centre in Cape Town speaks about what hospice means to her:

It is very interesting; it helps you get away from the house. They make you welcome and make you feel part of a family. Sometimes, when I’m feeling sick, I’m happy to just be there and listen to what’s going on. I don’t feel so lonely. When I stay here, at home, I sometimes feel very, very lonely.¹⁵

A Cape Town home care patient says:

The hospice staff are wonderful. They encourage me to go on. I think the doctor and nursing staff are marvellous. They treat us like babies; most of all we get love. They have carried me like a baby. It’s like the Garden of Eden: beautiful!¹⁶

Patients at the hospice day centre in Soweto speak about why they attend:

I feel quite at home here; we can socialise with each other and we give advice to each other.¹⁷

The more we come here, the more we get relief from stress because we live in families where we get no social support.¹⁸

They give us medication because some of it we can’t buy on our own.¹⁹

I very much look forward to coming because it makes me feel good while I am here.²⁰

Also in Soweto, a young patient’s carer speaks about how the hospice responded to her request for help:

Since I’ve contacted hospice and told them about my sister’s daughter – she has no mother, no father, no ID card, no birth certificate, no money for food, and she’s very sick - they gave us food and [incontinence] napkins. They come to see us, and they care about us. It’s helped a lot.²¹

To commentators in developed countries, some of the services provided by palliative care organisations - in South Africa and in Africa generally – may seem unfamiliar. In their report (2004) to the Diana Fund, Richard Harding and Irene Higginson address this point:

Although the definition of palliative care is globally relevant, what constitutes palliative care needs and services in sub-Saharan Africa is continent–specific, particularly in the light of poverty and HIV disease. Necessary components include practical care, pain and symptom control, counselling/ emotional/ psychological support, income generation, financial support for food, shelter, funeral costs and school fees, respite, spiritual care and orphan care.²²

Integrated Community-Based Home Care

At South Coast Hospice, Port Shepstone, an innovative form of care has been developed, in collaboration with networking partners, known as Integrated Community-Based Home Care (ICHC). This care is available to people living with HIV/AIDS (PLHA), and to their families - and includes the following elements:

• Clinical management – providing early diagnosis, including HIV testing, appropriate prophylaxis and treatment of opportunistic infections as well as effective management of pain and symptom control
• Nursing care – promoting and maintaining hygiene and nutrition, teaching the family and micro-community basic nursing skills and comfort as well as emergency measures, supervising the taking of meditation and DOTS (directly observed treatment short course) for TB, teaching and observance of universal precautions
• Psycho-spiritual support – providing counselling and spiritual support, including stress and risk reduction planning, promoting and supporting the acceptance and disclosure of serostatus. Enabling coping in terms of positive living and planning for the future of the family in particular placement of children
• Social support – providing welfare services and legal advice; providing information and referrals between the partners who make up the care network, including poverty alleviation and pastoral and bereavement care; facilitating peer support.

The ICHC model was piloted at seven hospice sites across South Africa in 1999-2000 on behalf of the South African national department of health’s HIV/ AIDS Directorate. Research conducted by HASA (now HPCA) and the University of Natal demonstrated the replicability and cost effectiveness of ICHC and recommended the model be rolled out country-wide. South Coast Hospice was subsequently awarded a research tender by the South African department of health to develop Port Shepstone as an HIV/ AIDS TB/ STI demonstration site.²³

In 2002, a review of the South African model of Integrated Community-based Home Care was undertaken by the Centre for AIDS Development, Research and Evaluation (CADRE) on behalf of the POLICY Futures Group. ²⁴ This research focused on seven hospices located in five of the nine provinces of South Africa. These were: Helderberg, Somerset West ( Western Cape); Naledi, Bloemfontein ( Free State); Pretoria Sungardens ( Gauteng); South Coast, Port Shepstone ( KwaZulu-Natal); St Bernard’s, East London ( Eastern Cape); St Francis, Port Elizabeth ( Eastern Cape); Zululand, Empangeni ( KwaZulu-Natal). ²⁵

Objectives of the research were to:

• identify and discuss key similarities and differences between the hospice ICHC model and other home-based care models used in South Africa
• identify and critically review the core elements related to the ICHC model as implemented by Hospice Association of South Africa (now HPCA)
• highlight key aspects of best practice related to the hospice ICHC model internal development and transformation, and in relation to its reach into the community

The report concludes:

• in some hospices, existing systems and structures have been retained and underpin emerging response, whilst in others, systems, structures and infrastructure have been considerably realigned
• as a whole, hospices are being transformed and expanded as a direct result of the emerging needs of the HIV/AIDS epidemic. Transformation is never easy, especially where new ground is being charted and where human resources need to be managed, but the value of developing and working with models is that this allows transformation to be well-considered and systematic. At the same time, the ICHC model is flexible, and any part of it can be adapted to an individual home-based care need or situation
• within hospice, new models of operation are evolving which incorporate diverse human resources and capacities, and in social and community contexts that are themselves changing, and in circumstances that are constrained by poverty and hardship. However, the underlying ethos of care provision combined with an understanding of the community contexts, is maintained within the ICHC model
• hospices are integral to the developing response to HIV/AIDS, and the organisation has risen to the emerging challenges. However, continued support is required from other role players in relation to both its internal development and transformation, and in relation to its reach into the community²⁶