As the 1970s drew to a close, issues around care of the dying attracted a groundswell of interest in South Africa. Centres of activity developed across the country in places such as Cape Town, Durban and Johannesburg. These initiatives centred on two key features: an affirmation of the value of all human beings - irrespective of race or religion, and an open engagement in the debate surrounding death and the dying process. During her visit to South Africa in 1979, Cicely Saunders encouraged these developments and within a year or two, hospice organisations were operating in a variety of settings throughout the country. This section highlights some formative events through the lived experience of people involved in them.

Highway Hospice, Durban⁷⁰

Greta Schoeman was the inspiration behind Highway Hospice Durban, joined at an early stage by Karen Hinton and Stella Thackray.

Greta Schoeman was born in the UK and nursed her father when he developed cancer of the rectum. Having re-located to Durban with her South African husband, she came across A Way to Die⁷¹ by Victor and Rosemary Zorza. The book tells of the death of Jane, the Zorzas’ 25 year-old daughter, in an English hospice (1977); how her suffering was relieved; and how she described the hospice experience as the happiest time of her life. Inspired by the story of Jane, Greta Schoeman went to Sir Michael Sobell House ( Oxford), met the Zorzas, and trained as a hospice nurse before returning to establish a hospice in Durban (1982). She recalls how she came to care for patients in her family home.

I did have quite an idea. So I donned a uniform, you see, and thought I knew it all, which of course you never do, even today, and went out looking for patients. Well the first patient I got to, she was too sick, she lived way up in Hill Crest and, as I say, I’d got small children so I couldn’t spend all my time up there. We’d got a guest cottage at home so I decided that maybe I should open the guest cottage as a miniature hospice. So I rang up my husband and I said, ‘Do you mind if we have patients in?’ So he said, ‘Well, whatever I say you’re going to do it anyway, aren’t you?’ I said, ‘Yes!’. So I did. But I must say I had quite a shock when I suddenly realised when the ambulance arrived that this lady was going to die on me and I hadn’t sort of thought about all this, but it worked, it worked. And then I quickly put some adverts in the papers and wrote some articles and then the Karens [Hinton] of this world and Stella [Thackray], rallied round and they’d come and help me. That’s how we started. And we ran [the hospice] there for 18 months; yes, had about 22 patients I think who died in my house.

Karen Hinton was born in Ellesmere Port in Cheshire, UK and trained at the Birkenhead School of Nursing. She re-located to Durban after marrying her South African husband. She nursed her 23 year old sister in law - who was diagnosed with a brain tumour – for about two months before she died. When she heard that Greta Schoeman was beginning a hospice (they belonged to the same church at that time) she contacted her and offered to help. She continues:

We had a lot of difficulty at Greta’s [Schoeman] house. We had our office there and we had this little two-bedded unit and the neighbours were not happy about it. They had visions of the hearse arriving day and night and, again, did not understand the hospice. There were a lot of newspaper articles and one of the headlines was about Greta and the headline involved was ‘Come to my house to die;’ it was quite an upper suburb where she lived, so neighbours weren’t happy. Greta used to go overseas quite regularly to her family and we never actually took too many patients, those of us who were left to hold the fort; but I remember one day we had our meeting at Greta’s house and when we came out the neighbours had done a blockade of their cars in protest. So, yeah, we were very naughty, I suppose; but we just ignored people, you know. They couldn’t do anything because nobody was charging.⁷²

Stella Thackray arrived in South Africa from Perthshire, Scotland (1980):

I came into hospice by accident. I worked in a doctor’s surgery and a lady came in one day with a nurse’s uniform on and she said, ‘I work for a charity that doesn’t have any money, could I possibly give her some sutures: a needle and a suture. An old man had fallen out of bed’. I said to her, ‘Where do you work? What is your uniform?’ And she told me that there had been a hospice which had just started in Westville and she told me all about it and she said, ‘If you’d like to come and help, you’re welcome’. So she gave me the address of Greta Schoeman’s house in Westville and she said they had a meeting every Monday; and I went there and they had already just started. I think they had been going for about a month, and I just went to the meeting and sat round a table and we discussed a few patients and Greta said to me, ‘Would you go and visit this man on Berea?’ and I had only been in South Africa for a year, and I said, ‘Yes, I’ll go,’ but I didn’t even know where Berea was, but that’s how I started.

Thembi Nyuswa, the first black sister at Highway Hospice, trained as a psychiatric nurse and found the broad approach associated with hospice care resonated with her view of holistic care:

When I first came to work for the hospice it was on a part-time basis and I became the first black sister. It was quite different, you know, from the usual kind of nursing that I’d always been involved in. And I discovered that the hospice concept was also a very new thing to the average black patient. At that time all the patients were referred to us from the provincial hospitals. They would get admitted in the hospice inpatient unit and when they went home there was no follow-up system to see how they were doing until they were re-admitted. So, I worked here on and off because I had to finish my studies; and when I left to do my psychiatric medicine the matron said, ‘Thembi, go and finish your studies and come back and start an African home care service,’ which I was excited about. So I went and finished my studies, got my drivers’ licence and there I was: I came back and I started this service.⁷³

Hospice Association of the Witwatersrand Johannesburg ⁷⁴

In 1977, the arrival of Margaret Lebish⁷⁵ an English nurse with a social work background, added impetus to the developing interest in end of life care in the Johannesburg area. The visit was unexpected:

My brother had emigrated to South Africa with his wife. They had just had their first baby and my sister in law had a brain haemorrhage and died, and the baby was just a few weeks old; and so my brother was left alone with a new born baby. I had just finished my nurse training and was actually on my way to Australia, waiting for my documents to come through and I just decided to go to South Africa instead, as I didn’t think he’d find it very easy in the circumstances.

It was while seeking work that Margaret Lebish met Sylvia Poss,⁷⁶ a social worker at Johannesburg General Hospital, and discovered that they shared a common interest: care for the dying. Before she left England for South Africa, Margaret Lebish worked at St Mary’s Hospital, London – an organisation that included St Luke’s, a long-established home for the dying in Bayswater. It was here that the young Cicely Saunders had worked as a volunteer social worker (1948) during what became a formative time for the development of her ground-breaking ideas.⁷⁷ More than twenty five years later, Margaret Lebish was familiar with the hospice philosophy and a supporter of the hospice movement.

In Johannesburg, Sylvia Poss became involved with the TLC (Tender Loving Care) group that focused on the needs of the terminally ill - and Margaret Lebish was invited to join as a community representative. When she subsequently found employment with the humanitarian organisation Toc H,⁷⁸ Margaret Lebish found that an inclusive approach to the dying was in keeping with the organisation’s mission. Consequently, her involvement in the nascent hospice movement increased significantly. She recalls:

The South African Cancer Association had sent its administrator, Mr Delport, to America to research the hospice movement there. A hospice conference was called by local nurses and doctors at which there were many attendees. Then

Sylvia Poss approached me in 1978 and asked if I would be willing to start [hospice development] work in the community, and I had no hesitation in agreeing. I went to Toc H and explained the position. Much to my delight they agreed to pay my salary for 6 months to work full time on the project. A new worker was being funded and sent out from the UK who would take over my existing workload and free me up to help establish a hospice in Johannesburg. Arend Hoogervorst eventually became the project chairman where his administrative skills and enthusiasm helped to steer the project in those vital early days.

In the beginning there was just me, a vision and a simple knowledge of the possibilities. I felt that the UK hospice models of care with which I was familiar were inappropriate to the beginnings of a project in a developing country. I needed a clear model of ‘How do we do it here’. So I selected a model of care called the ‘consultative group’ which consists of a team providing a home care service which follows a patient into hospital if admission becomes necessary. The model was based on the ‘ Hospice of Marin’⁷⁹ in California; its founders were influenced by the work of Elizabeth Kübler Ross and it was the second homecare hospice service to be developed in America. But it started with a vision, no money and a group of volunteers and I knew that if they had succeeded, so could we.

The next step was to share the vision and form a steering group for the project. I was invited to speak to a group of social workers and to my disappointment, the group focused on the fact that I hadn’t established the need! Being young and enthusiastic, I was bitterly disappointed that this group didn’t catch my vision! As I was leaving a gentleman approached me and said: ‘I think it’s a fantastic idea, what can I do to help?’ Stan Henen and I had already met at a meeting for community workers in Soweto and Stan was my answer to prayer. He became a member of the steering group and was later to become the hospice administrator.

Over the next 6 months, the team grew as more people joined us. Dr Brown was chairman of the Hospital TLC group at Johannesburg General Hospital and with his colleague Dr Browde, was responsible for inviting Cecily Saunders to visit us during her visit to Cape Town. The press publicity from that visit put us on the national map. Others joined: Thelma Avent came to us as a potential user and offered us the use of a room in her garage as an office, free of charge. I approached a gentleman who had recently lost his wife to become our accountant - and so Alistair Bruce joined us. Stan Henen took over public relations. Fr Ronald Cairns, Catholic priest from Alexandra township, joined us as chaplain and Mrs van Heuren Chief Nursing Officer from the Provincial Nursing Service also joined the group. Annette Schmidt [Toc H] joined as our secretary and later, Dion Rhoder [Toc H] joined as a lawyer. Dr Barry from the department of community medicine at the medical school at Witwatersrand University joined as vice chairman. Our core Steering Committee was in place.⁸⁰

Activities became formalised at the TLC meting held on 9 March 1979. In her historic report to the group, Margaret Lebish writes:

I initially attended the Pathways terminal care symposium where a lot of private discussion and contacts were made. I have also personally approached representatives from the various groups at present concerned with the field of terminal care. My opinions are subjective but my conclusions are as follows:

• There is a general lack of knowledge of existing resources
• There is a lack of co-ordination and communication among different bodies concerned
• Existing resources and organisations are specialised in their scope of activity
• There is no one body sufficiently organised to promote effective action for the establishment and development of comprehensive care facilities for the terminally ill, the bereaved and their families.

I therefore recommend:

Thanks to the work of organisations like Pathways and TLC the ground seems well prepared for action and for sympathetic response from the public. It is recommended therefore that an independent voluntary organisation be established as soon as possible. It has been suggested that a suitable name for this group would be HOSPICE.

A preliminary meeting of interested bodies has been called for 15 March at 5 pm to be held at Toc H headquarters, Johannesburg. Anyone interested in attending, please make themselves known to be or to the TLC chairman, Dr Brown.⁸¹

Records of these meetings in March 1979 throw new light on the early development of palliative care, not just in South Africa but across the African continent, and add weight to the claim that the first formal steps in hospice care were taken not in Harare ( Zimbabwe), but in Johannesburg.

Among the early pioneers of Witwatersrand hospice were Stan and Shirley Henen. A history of the hospice acknowledges their involvement:

Stan and Shirley Henen became actively involved with the hospice concept in 1979 and began training caregivers and started operations from their home in Hurlingham, Sandton. Stan was a qualified pharmacist and also worked as an insurance consultant. The Henens and a few loyal and enthusiastic volunteers began ‘marketing’ the hospice, so much so that by 1984 the first property in Houghton was purchased for R380,000, of which JCI⁸² donated R300,000. A 5-6 bed unit and hospice pharmacy were opened.⁸³

Barbara Campbell-Ker, currently the executive director of Witwatersrand, joined the hospice in 1986 when the organisation was looking for a volunteer bookkeeper:

At that time, we had 16 paid members of staff; innumerable volunteers. I remember distinctly in about 1988 when we admitted our first AIDS patient into the inpatient unit - and of course since then we’ve come an awfully long way, yes. Things have changed greatly. We were in a wonderful house. About three or four of us shared one of the servant’s accommodation at the back, which was our office. Everybody multi-tasked: if you were a board member you worked in the flea market, you counted money, you mopped, you folded, you licked stamps, you did anything that helped and saved costs and, yes, it was very exciting. Actually it probably was more fun than what we have now, because we’ve grown so; with such a large staff, eventually you’ve got to decide you’re not a little welfare organisation, you’re actually a business and you need the business policies, procedures and principles with the standards. In some way you’ve got to change focus - because if you have to run a large organisation like an organisation with 16 staff, it’s not going to work. So we’ve had to make that transition, trying to keep that family approach, but becoming more effective from a business perspective.⁸⁴

In 1998 Soweto hospice opened under the Witwatersrand umbrella. It began with home-based care but today, located in the grounds of Mofolo Clinic, the hospice provides a day care service, home care service and inpatient unit. Hospice coordinator Sibongile Mafata:

When I started in ’98 people were not aware of a hospice in Soweto – but it was just two sisters who were working here. We had to work very hard to go out, make people aware that there is a hospice in Soweto; and then with the efforts, the growth then started. At that time we were getting cancer patients only, we didn’t have HIV/AIDS patients. And slowly, slowly the AIDS patients started coming to our programme. Presently it’s unbelievable, the number of AIDS patients – it’s about 70 to 80 per cent in comparison to the cancer patients. When I started in ’98 we had between 40 and 50 patients. This place was adequate for what we were doing, but now we have really, really grown: everyday there is a growth of something.

As I said, we started being just two nursing sisters, then we grew. We had an extra nursing sister, and then we had a social worker in the problem areas. The social problems are overwhelming. In the beginning, we didn’t have an inpatient unit and we had to apply to other places to get a placement for our patients. We started with a four-bedded inpatient unit just to see whether we were going to be sustained, and then we opened the nine beds. So the challenges have been seeing to the growth of hospice in Soweto and also making the community aware. But now, people have really become aware of the hospice. You’ll find that the referrals are no longer from hospital only, but by word of mouth, from individuals. People refer each other knowing that there is a hospice, but at the moment our place is inadequate, it’s now another challenge.⁸⁵

St Luke’s Hospice, Cape Town⁸⁶

Christine Dare was the driving force behind St Luke’s Hospice, Cape Town. She had come to know Cicely Saunders when she worked at St Thomas’ Hospital ( London)⁸⁷ and was keen to bring her to South Africa to contribute to the debate on end of life care. Finally, Dr Saunders arranged to visit (1979) on condition she could have a public debate with Christian Barnard on euthanasia. Richard Scheffer, a fellow student of Christine Dare in the UCT medical school, recalls how Cicely Saunders came to be in South Africa:

I was at the University of Cape Town from 74 to 79. While I was there, I sat on a committee called the Student Visiting Lecturers Organisation which had some money available to bring visiting lecturers to the university for specific projects of interest to the students: and in our class was a girl called Christine Dare who was a physiotherapist by training and had actually trained as a physiotherapist at St Thomas’s [London] at the time when Cicely Saunders was a medical student at St Thomas’s and they had had known each other. And we had to write an essay on the care of the dying as part of our 3 rd year programme and Christine was saying how wonderful it would be if we could get Dame Cicely to come out to South Africa and we said ‘well let’s go to the Student Visiting Lecturers Organisation and see if we can get them to fund the visit’.

And Dame Cicely very kindly agreed to come - because it was a difficult time for South Africa; it was at a time of academic boycott and there weren’t many people prepared to visit. And she generated enormous interest amongst medical students. All her lectures were given outside of tutoring time, so they were in our lunch hours or after work and she played to full houses. And also, I think the other interesting thing was: we were a society that was hurting enormously and she spoke in to that, in the sense that she tried to address – and I think she gave us ideas to think about - what the meaning of suffering could be. And so for some of us who were finding the situation in South Africa very, very, very stressful, she had some very powerful things to say, not just about dying. So, all in all it was a very successful visit and personally, it made me quite sure that I wanted to do palliative medicine.⁸⁸

The deputy dean of UCT medical school at that time was JP van Niekerk - and he acknowledges the special contribution made by Christine Dare:

In 1979 I was approached by a senior medical student – whom I would later come to know well – to assist in bringing out Dr Cicely Saunders to spread the gospel of hospice. The medical student was, of course, Chris Dare, who went on to start St Luke’s Hospice in Cape Town and had a major influence on the development of hospice in South Africa.

She was inspired by what Cicely had done in developing a new concept and determined to follow suit in South Africa. At that stage Chris was a physiotherapist and applied to do medicine at UCT in order to prepare herself for this task. Since she was missing some of the required background courses for entry she first commenced with BSc studies. The whole saga of her eventual acceptance was typical of her career, in which the word No was something which simply had to be overcome.⁸⁹

Meg Meyers, a trained nurse who was seeking to return to work, was the first person to be employed by the hospice – originally as voluntary services co-ordinator:

St Luke’s Hospice, was formed as a company, not for gain, in August 1980. A lot of the medical personnel had realised there was a great hiatus between patients being cared for in a hospital and going home, particularly if they were terminally ill. A lot of people were working and couldn’t afford to care for them so it was felt that there was a need for something like a hospice. And we stayed in a committee stage for about two or three years.

Now I had known Chris [Dare] for a long time through my church connections and eventually, once she had qualified she would go and give talks and speak to people, and everybody knew she was very enthusiastic about opening a hospice. And then we were given the opportunity in 1983 to rent rooms at the Vincent Pallotti Hospital, which was a private hospital run by nuns, and they felt they’d like to get us started. So we leased their old staff dining room, which was a very large room with a double-sided desk, a rusty filing cabinet and that was about it. But a lady was employed to be the very first voluntary services organiser, because Chris felt that what she needed to do was to train up volunteers and then she could at least have somebody to go and help the patients that she was seeing. And unfortunately the lady came for a morning and then resigned, and it was decided that the board, most of whom came from the same church, should put on their thinking caps and see if they could think of anybody who could help us for the interim. And rumour had it that all four of them thought of me. So - that was the year that I had been planning on going back into work - so Chris approached me and said, could I help out until they could find somebody. So I started in February 1983 as the voluntary services organiser; and we had two volunteer training courses that year, and some of those volunteers are still with us.⁹⁰

In the early days, the hospice had strong links with a local church and concerns arose relating to both religion and race: religion, due to fears about a Christian-based health organisation that would have little relevance to those of other faiths; and race, because the hospice began during the days of the apartheid government which endured until 1994. Meg Meyers:

I think initially there was the fear we were all highly religious and were going to come in and preach hell fire and brimstone, but once they got to realise that that was not the case, things eased. And then I think it was a case of testing the waters. Some of our patients found it a bit difficult when we opened a ward: we had black, white, coloured, everybody in together, sort of thing; and you could feel a little bit of tension, you know. But the interesting thing was we had a wonderful occasion in our female ward: we had one white lady, and this was an extremely foreign thing for her; and she was very sick and in a lot of pain and thought she would rather go home. But there was a delay in the family being able to get her home and so she was there for a couple of days. One evening she was trying to reach the bell – I think she’d vomited or something – and it was the black lady in the bed next to her who came to help her: and she was so caring of her and rang her bell to call the sister, that it changed her whole attitude. And we’ve had a lot of those sorts of incidents. But everybody is treated the same: it doesn’t matter if you’ve money; it doesn’t matter if you haven’t got money; it doesn’t matter if you’re a gangster - we’ve had lots of those; it doesn’t matter where you come from. Everybody is treated with love and compassion; and the bottom line is we want to walk alongside you, we want to control your symptoms, make you comfortable, and allow you to die with dignity. And to me there’s no room for racism or antagonism about somebody of a different faith.⁹¹