Marie Backeberg – nursing sister, Centurion Hospice: interviewed by Michael Wright, 13 Aug 2004. Length of interview (Centurion group): 32 minutes.

Marie Backeberg tells of her nursing background and of her work as a wound care practitioner. Her mother had died of cancer and when she sought to re-locate her practice, she approached Centurion Hospice as she considered that her nursing skills could be of value to the patients. Since her move to the hospice, she has been elected to the committee and now makes a broader contribution to the life of the organisation. Among many successes of hospice she considers that teamwork features prominently, pointing to the willingness of staff to work together in a collaborative, non-hierarchical way for the good of the patients.

Dr Alan Barnard – GP and hospice physician, St Luke’s Hospice, Cape Town: interviewed by Michael Wright, 12 Aug 2004. Length of interview: 26 minutes.

Alan Barnard is a GP who trained at UCT and for the past 15 years has practised in the southern suburbs of Cape Town. He has a long-standing interest in palliative care and provides part-time cover for St Luke’s Hospice. He is currently taking the UCT masters degree in palliative medicine and pursuing an interest in research. He speaks of the family physician’s role in palliative care, of the impetus brought about by the new (PEPFAR) funding, and of the need to keep sight of other disease categories alongside HIV/AIDS.
On the question of ethics, he refers to issues around confidentiality and disclosure – especially for HIV patients - and perceives a growing interest in euthanasia debate.

Peter Buckland – chief executive, North Shore Hospice, New Zealand; formerly executive officer of St Luke’s Hospice, Cape Town and the Hospice Association of the Witwatersrand: interviewed by Michael Wright, 2 Sep 2004. Length of interview: 14 minutes.

At the beginning of the 1980s Peter Bucklandran a personnel recruitment company in Cape Town. He became aware of the hospice movement about the time that his father died and when the hospice subsequently advertised for an administrator he decided to apply. After his appointment in 1985 he spent 7 years at St Luke’s at a time when the organisation grew from small beginnings into a much larger organisation with home care, day care and an inpatient unit. He then took up a post with the newly formed national association – the Hospice Association of South Africa – and supported the developing hospice movement at a time of countrywide growth. In 1996, he moved as chief executive to the Hospice Association of the Witwatersrand at the time when Soweto Hospice was in the process of being established. Three years later, he left South Africa for New Zealand. He remembers reading A Way to Die ­- written by Victor and Rosemary Zorza about the death of their daughter in an English Hospice - and speaks of the impact it made on him. Despite the passage of time and the changes along the way, he tells how he retains an idealistic vision of the essence of hospice care: of a patient-oriented service where staff also have time to be alongside the family offering care and support.

Barbara Campbell-Ker – executive director, Hospice Association of the Witwatersrand: interviewed by Michael Wright, 11 Aug 04. Length of interview: 48 minutes.

Barbara Campbell-Ker became a volunteer accountant at the Witwatersrand Hospice Association in 1986. By 1992, she had become a full time member of staff in charge of finance and administration. In the intervening years, she had undertaken a role with the national hospice association and become chairperson of the provincial association covering Gauteng, Limpopo, Mpumalanga and North West Province – previously known as Transvaal. She recalls the late 1980s when Witwatersrand had 16 paid members of staff and outlines the transition to the organisation that operates today: a large NGO covering an area which encompasses 7 million people. She outlines the services provided by the association, including two distinct types of home care, and acknowledges the challenge of running an organisation that receives only three per cent of its funding from government. Turning to the national picture, she then speaks of the vision for South Africa and the development of a strategy that takes account of training needs, standards development, the place of mentoring and the availability of PEPFAR funding.

Jeanette Daniel – community palliative care nurse, St Luke’s Hospice, Cape Town: interviewed by Michael Wright, 6Aug 2004. Length of interview: 24 minutes.

Jeanette Daniel speaks of how she came to work at the hospice after experiencing the sudden death of her mother. At that time she worked in the psychiatry department of a local hospital. Moving to a part-time post on the ward of St Luke’s, she saw the difference the hospice made in the lives of patients and their families. Eventually, she moved into the community, where she has worked for the past 12 years. As coverage grew, she moved to a new service in the Grassy Park area – her own locality - and helped establish a new clinic/ drop in centre, which has become a focal point locally. She speaks of issues around pain relief, euthanasia and spirituality and of the valuable, harmonious relationships which have been established with both Muslim and Christian sections of the local community.

Brenda Dass – provincial [PEPFAR] coordinator Limpopo, Gauteng and Mpumalanga: interviewed by Michael Wright, 12 Aug 2004. Length of interview: 29 minutes.

Brenda Dass began her work in palliative care as a community nurse in 1990 and after a period teaching auxiliary nurses, became nursing services manager for Hospice East Rand. She is currently employed as a PEPFAR Provincial Co-ordinator: a position which is directly related to the HPCA mentoring programme. Her provincial responsibility covers a vast expanse of land that includes large rural areas, most of them without palliative care provision. Activities include: the mentoring of established hospices; the mentoring of emerging hospices; and the setting up of new hospice programmes. Phase 1 began in 2003, supported by OSI, Phase 2 in 2004. Current work involves the identification of development sites and the areas of need; these needs are then met by a team of people that possess the required skills. She is currently working with 6 development sites, 12 emerging hospices and 6 new programmes. Liaison with the department of health, the development of a buddy system and the availability of ARVs are seen as key factors in the drive to combat HIV/AIDS.

Rosemary de Jager – home care coordinator, Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (Highway group): 1 hour 33 minutes.

Rosemary de Jager joined Highway Hospice in 1986, first as a volunteer and shortly afterwards as a member of staff when her husband was retrenched. She contrasts the role of the home care sister in the early years of hospice compared with the present day - when pressures are greater, the care more sophisticated and the training more detailed. These changes mirror the increasing demands being placed upon hospice and the need to care for AIDS patients alongside cancer patients. Given the demands of the work, care for staff is a high priority. Support, therefore, has been carefully structured within a closely- bonded home care team with added support, if required, from a psychologist who visits on a regular basis.

Joan de Jong - executive director, Hospice North West: interviewed by Michael Wright, 12 Aug 2004. Length of interview (with Angie Sehoke): 24 minutes.

Joan de Jong recalls how she joined Hospice North West after previous experience as director of Lifeline – a telephone counselling service. Over the course of the next eight years, the hospice grew from the small beginnings with a director, one nurse and a clerical assistant to an organisation with 17 staff that has become widely known in the locality. Sixty volunteers assist the nurses and each of them receives a (very small) stipend. Home based care is flourishing and day care centres have become established in the local townships. Transport is essential, however, since many patients live in the poorest areas some distance from the hospice. Among the successes of the hospice is a crèche that operates daily to ensure that children do not need to stay off school to help grannies care for younger children.

Kathleen Defilippi - HPCA board member and manager, South Coast Hospice, Port Shepstone: interviewed by David Clark, 5 th June 2004. Length of interview: 58 minutes.

Kath Defilippi first became interested in hospice care in 1979 as a result of hearing a talk given by Dr Cicely Saunders at a symposium on death and dying. At the time she was taking an advanced nursing course in Johannesburg, South Africa. It was not until a few years later however, following a move to the South Coast area in KwaZulu Natal, that she was able to further develop this interest. Together with others in the area, she began to get involved in the care of terminally ill patients. At this time, the apartheid regime was at its height. She began to realise however that a particular model of care was needed, one well suited to local circumstances:

‘… like all the hospices in South Africa … we had inherited the British model and that was the hallmark, [but] very soon I realised that the people in our part of the world who had the greatest need for pain and symptom control and holistic care, actually lived in the outlying areas and they were black people, and we were a group of white, middle-class white women at that stage, you know, all volunteers, and that, you know, it just didn’t make sense to have this sort of wonderful little, comfortable service for people who certainly needed it but not nearly as badly as others who had virtually no access to health care at all’.

There could also be problems when patients cared for in the hospital facility were established on good pain relief, but then had to return home where no morphine was available. In response to this, they began to build a rural outreach programme. For a long time they had very little funds to support their operation, relying on donations of money, time, materials and goodwill. In this way the South Coast Hospice was able to expand the five million rand organisation that it had become by 2004.

Initially, almost all of the patients had cancer, but in the 1990s they began to see an increasing number with HIV/AIDS. They began to address the question of how they could care for people in such growing numbers. They strengthened and widened their links with the primary health care teams and the hospitals. They described the model as ‘Integrated Community Based Home Care’. Kath Defilippi describes the complex social problems faced by their patients: poverty, starvation, unemployment, substance abuse and sexual abuse.

She also describes the wider development of hospice and palliative care in South Africa, drawing on her experience as a board member of the national association – first in the Hospice Association of South Africa, later renamed the Hospice Palliative Care Association of South Africa. She describes the isolation of South Africa from the wider palliative care community during the years of apartheid. She reflects on the importance of bringing together both ‘quality’ and ‘coverage’ in the development of palliative care services in South Africa. She concludes with a discussion of her role in the work of the African Palliative Care Association, of which she is the first President, and also some observations on the impact of PEPFAR funding on the developing palliative care scene in South Africa and other countries in the region.

Kathleen Defilippi (2) - HPCA board member and manager, South Coast Hospice, Port Shepstone: interviewed by Michael Wright, 12 Aug 2004. Length of interview: 10 minutes.

In this interview, Kath Defilippi focuses on the concept of mentorship and its relevance to the hospice movement in South Africa and in the broader African context. Funding was provided by the Open Society Institute in 2002 to develop a programme that utilised well-established, developed hospices to provide guidance and support to emerging or less-developed organisations within their geographic area. Underpinning this initiative was a forward-looking looking response to the HIV/AIDS epidemic that enabled hospices belonging to HPCA to function as a resource that could reach out and empower other faith based and community organisations to provide quality home based care that includes pain and symptom control. After a successful first phase, funding became available for a second phase, beginning in 2003 – an initiative that has co-incided with the PEPFAR funding. This has enable HPCA to recruit provincial palliative care development teams and a full time PEPFAR provincial co-ordinator. The aim is to have a provincial association in each of the South Africa’s nine provinces, linked to nine provincial development teams. Crucially, this is linked to a three stage accreditation system developed in partnership with the Council of Health Services Accreditation for Southern Africa.

Sr Priscilla Dlamini – founder, Holy Cross Hospice, Gingindlovu: interviewed by Michael Wright, 12 Aug 2004. Length of interview: 40 minutes.

Sr Priscilla Dlamini has a background in nursing and founded Holy Cross Hospice in 1999, converting a block of stables to a 40-bedded inpatient unit with 20 adult and 20 paediatric places. She speaks of the difficulties posed by around 470 child-headed families in the locality and of the project’s support for young family members by the provision of a crèche and day centre. Around 25 carers provide home based care to around 200 patients, although the inpatient unit is available for sole-surviving family members or carers who are exhausted. The hospice is self-supporting and where appropriate, modern medicines are used alongside herbal and homeopathic treatments; some morphine is available prescribed by sympathetic doctors. A social care project supports children by ensuring death certificates are provided for their parents, thereby giving access to government grants. Orphans are further supported by the construction of two-roomed pre-fabricated houses imported from Holland. A target figure of 215 houses has been set and these houses arrive in containers carrying fifteen at a time. Links have been established with the University of Zululand for the provision of counselling and psychological support. Sister Priscilla speaks of the challenges she has faced initiating and sustaining these projects and of the generosity of the local communities and international donors.

Stella Dubazana – child care manager, Cotlands Hospice, Johannesburg: Interviewed by Michael Wright. Length of interview: 30 minutes.

Stella Dubazana has a background in nursing and began work at Cotlands paediatric hospice in 2001 in a search for more job satisfaction. She is now the hospice’s child care manager, having undergone palliative care training at Pretoria Sungardens Hospice - and speaks of her new role as her ‘passion’. She tells of the children’s backgrounds and of the combined difficulties caused by sickness and poverty. She draws attention to the hospice facilities and the relationships established with local hospitals and other child-focused organisations. Outlining the nature of the relationship between the hospice and the child’s family, she says, ‘We say to them, “we’ll take care of the child for you,” but the family remains the first people that can tell us what we can do; we never take decisions for them’. This relationship is supported by the provision of funding so that family members can visit; financial support is also available when funeral arrangements become necessary. In the community, families are also supported by outreach workers who, once they become involved with a child, maintain support wherever the child is located. Finally, Stella Dubazana speaks of the needs of staff and the ways in which support is given to those involved with children who die.

Dr Sarah Fakroodeen – palliative care physician, Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (group): 1 hour 33 minutes.

Sarah Fakroodeen studied at the Royal College of Physicians and Surgeons in Dublin ( Ireland) and followed her initial studies with a post-graduate course in Obstetrics. She subsequently travelled to South Africa to see her father and never returned to Ireland. She eventually saw a post advertised at the hospice and was appointed day centre doctor, part-time. She found herself suited to the work and took the palliative medicine diploma at Cardiff, followed by the Master’s course at the University of Cape Town. She highlights a number of issues: getting palliative medicine recognised as a medical specialty; communicating with GPs regarding a patient’s quality if life; ensuring symptom relief and maintaining an accepting, non-judgemental approach towards religious diversity. She sees patient care and the difference it makes to people’s lives as being the major success of the hospice.

Dr Elizabeth Gwyther (1) – HPCA board member; education and research co-ordinator : interviewed by David Clark, 4 June 2004. Length of interview: 30 minutes.

This interview focuses chiefly on the impact of PEPFAR funding on the palliative care scene in South Africa. The country is one of 12 in Africa to be eligible for support and the first to receive palliative care funding from PEPFAR. The foundation of the proposal to PEPFAR is the Hospice Palliative Care Association’s Mentorship Programme, where hospices with established programmes and people with the technical expertise, the knowledge and skills assist smaller programmes or new and emerging home-based care and hospice programmes to develop their own palliative care components. That mentorship programme has been supported for the past two and a half years [up to June 2004] by Open Society Institute and is being used as the vehicle for the PEPFAR funding, of which the first year’s grant is 2 million US dollars.

The aim of the Mentorship Programme is to deliver quality palliative care to patients and families, looking at organisations that have a component of clinical palliative care but that also have good management, good governance and financial accountability. The idea is to develop those organisations. This involves looking at the holistic care of patients and families, together with pain and symptom control and with psycho-social and spiritual support. The mentorship programme started with standards of clinical care, to which were added standards of management and good governance. There are different levels of accreditation: pre-entry level, entry level, intermediate level and those that get full accreditation. This covers the range of services that hospices offer: home-based care services, inpatient services, day hospice, spiritual counselling, bereavement counselling, education and training.

Liz Gwyther discusses the key elements of palliative care and their definition. She outlines the process of applying for PEPFAR funds and the short timescale involved.

There are six objectives for the programme of PEPFAR funded work: 1) to build capacity in the national office 2) to strengthen services 3) to develop new hospices 4) advocacy 5) palliative care research and training 6) monitoring and evaluation. The interview concludes with reference to the work of the newly created African Association of Palliative Care and the role of South Africa within it.

Dr Elizabeth Gwyther (2) - interviewed by Michael Wright, 7 Aug 2004. Length of interview: 51 minutes.

Liz Gwyther tells how she was a contemporary of Christine Dare at the University of Cape Town (UCT) Medical School. After qualifying, she first practised in Zimbabwe before returning to the Cape in the early ’80s as the hospice service at St Luke’s was gathering momentum. She referred her first patient to St Luke’s in 1983 and collaborated intermittently with the hospice during the next 10 years. As her interest developed, she became directly involved in hospice care during the 1980s and obtained a diploma in palliative medicine from the University of Wales. She subsequently explored the possibilities of establishing a palliative medicine course at UTC; an initiative which eventually commenced with a first intake of 23 doctors; around 60 have since qualified. After serving as chairperson of the Helderberg board she became CEO at St Luke’s Hospice, Cape Town in 2001 at a time when the service was being expanded to include HIV/AIDS patients. She refers to the developments that focused on the needs of patients, orphans, and families; comments on the how morphine is prescribed and dispensed; and raises the ethical issues surrounding access to care and the positions of women and children. Finally, she acknowledges the strengthening relationships between hospice personnel, traditional healers, and the leaders of different faiths,

Bonnie Haak – director, Human Resources and Training, Cotlands, Johannesburg: interviewed by Michael Wright, 11 Aug 2004. Length of interview: 21 minutes.

Bonnie Haak joined the staff of Cotlands in 1994 as pre-school teacher and principal. At that time there were around 45 staff involved with sanctuary (the residential unit) and the hospice was in the process of development. As the number of personnel increased, she developed an interest in staff issues and devised a programme of meetings that was accessible to a staff body that worked shifts. Today, the Cotlands organisation employs around 150 staff spread across several sites as far afield as Cape Town and East London in addition to Johannesburg. In caring for children, staff are seen as a major resource and related issues are given high priority. She tells how the movement towards hospice care was a ‘paradigm shift’ that prompted a detailed review of practice. Central to this review was a debate about non-hospice staff and their relationship with children in the hospice. Subsequently, those who wished to be involved were included and experience has shown the lasting effects of human contact. Among the many successes of Cotlands, Bonnie Haak considers that the team approach and the willingness of staff to undertake extra roles for the well-being of the children is a strength of the organisation.

Karen Hinton (1) interviewed by Michelle Winslow, 28 June 2002. Length of interview: 56 minutes.

Karen Hinton grew up in Ellesmere Port in Cheshire, England. She trained as a nurse in Birkenhead and in 1969 met and married her South African husband. She moved to South Africa in 1970, continued her nursing career, and after the birth of her children became involved with Greta Schoeman, who was seeking help to establish a hospice in Durban. In 1982, Greta started Highway Hospice from her own home. Karen Hinton discusses the early days of the service, working with local doctors, and Greta’s UK visit to gain experience in palliative care. In 1984, following a fundraising campaign, an in-patient unit opened. This was during the apartheid era but the political system was disregarded and patients from all backgrounds were admitted, predominantly with cancer but increasingly with AIDS. She talks about issues involved in caring for AIDS patients, particularly economic hardship, and then reflects on the hospice's growth and development, treatment and pain relief, staff and volunteers, education, and involvement with the Hospice Association of South Africa. At the time of interview, Karen was Education Manager at Highway Hospice and Chairman of the KwaZulu Natal Hospice Association.

Karen Hinton (2) – chairperson: Hospice Association of KwaZulu Natal; quality assurance adviser, Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (Highway group): 1 hour 33 minutes.

Karen Hinton has been at Highway Hospice since it opened in 1982 and in those days was instrumental in forming the shape of the hospice in association with Greta Schoeman. Until 2004, she mainly focused on education, serving also on the national sub-committee for patient care and education and being a member of the team which developed the certificate course for professional nurses. Recalling the development of the hospice movement in South Africa, she points to the role played by nurses as a counter to the contemporary focus upon palliative medicine. Turning next to the changing hospice provision, she describes how the ‘British model’ of hospice care – an inpatient unit and accompanying home care service – did not meet the needs of the whole community. The reduction of inpatient beds, therefore, did not just reflect the financial problems of the day, but also a growing realisation that the service had to be amongst and accessible to the whole community. Bringing this about has been one of the biggest challenges of recent times.

Theresa Hlongwa – nursing sister, manager of Umlazi day centre, Highway Hospice , Durban: Interviewed by Michael Wright 9 Aug 2004. Length of interview: 25 minutes.

Theresa Hlongwa trained as a nurse at Edendale Hospital and undertook midwifery training at King Edward VIII Hospital. She undertook further training in community health nursing science and took a bachelor’s degree in nursing administration at the University of South Africa. Since her retirement as a professional nurse, she has become involved in hospice work as a home care sister and manager of the hospice day centre in Umlazi, near Durban. She regards poverty as a major challenge and has worked hard to ensure that the centre remains open despite the interest of local gangsters who have stripped the centre of its equipment. Yet Theresa Hlongwa has won the confidence of the local community and she regards it as a major success that residents recognise her car and stop her in the street to spontaneously ask for help

Goonam Jacob – social worker, Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (Highway group): 1 hour 33 minutes.

After retiring from her previous employment at the beginning of 2003, Goonam Jacob joined Highway Hospice as a volunteer social worker having previously studied death and dying as part of a Master’s degree course. From her work in the Indian community, she refers to the denial that is commonplace about AIDS – notably that Indian families are not affected. The reality however has become painfully obvious and this is causing huge distress, not only physically and emotionally but also conceptually. When these factors combine with cultural practices such as women remaining in their homes when a family member is dying, getting support and counselling to those who need can be problematic.

Jackie Jackson – nursing sister, Pretoria Sungardens, previously employed at Centurion Hospice: interviewed by Michael Wright, 13 Aug 2004. Length of interview (Centurion group): 32 minutes.

Jackie Jackson recalls the groundswell of energy during the mid-1990s that led to the establishment of Centurion Hospice. Local support was considerable: the municipality donated grounds and local activists raised funds to build the premises. Initially, the hospice opened a day centre but provision now includes counselling, home based care and an inpatient facility. Early challenges centred on the recruitment of staff with the medical and nursing skills to take the hospice forward. Jackie Jackson has since moved to Pretoria Sungardens Hospice which is the mentor hospice for Centurion.

Edith Khumalo – social worker, Soweto Hospice: interviewed by Michael Wright, 10 Aug 2004. Length of interview ( Soweto group): 34 minutes.

Edith Khumalo was a retired social worker when Sibongile Mafata approached her to work at Soweto Hospice; she was pleased to respond. She tells of the extreme pressures brought about by unemployment and poverty; of the hardships of life in the squatters’ camps; of the paralysing effects of sickness and AIDS; and the complex search for relatives when itinerant workers – often from rural areas – die in the city. She speaks too, of the problems of bereavement, especially for children, and of the ways in which the hospice supports those who are affected. This frequently involves the provision of food parcels, assistance with funeral expenses, help with documentation and grant applications. Despite the challenges, she is optimistic about the support which can be given and considers her present role to be the most fulfilling of her professional career.

Josef Lazarus - strategic adviser to the HPCA board : interviewed by Michael Wright, 13 Aug 2004. Length of interview: 33 minutes.

Josef Lazarus initially trained as a priest and then wished to find a practical application to his life and so became involved in the national training of health professionals in South Africa’s eight medical schools. When he led a development unit at the University of Natal, he became interested in the community dimension of medicine which eventually led to his involvement in the hospice movement (1994). In 1997, he was asked to undertake a strategic planning exercise for HPCA that focused on developmental aspects of the service. Key portfolios were established in patient care, education and training, organisational development, advocacy, and fund-raising; and people were appointed to those sub-committers who had the appropriate expertise. Joe Lazarus speaks of the Hospice Development Fund and its overall impact on the hospice movement; he also refers to the PEPFAR funding and how these funds will be used for capacity development and the establishment of regional (hospice) centres of excellence in each of South Africa’s health districts.

Margaret Lebish (McGettrick) – former Toc H-funded hospice project worker, JohannesburgInterviewed by Michael Wright, 25 March 2005. Length of interview; 58 minutes.

Margaret Lebish arrived in South Africa to support her brother whose wife had died after a brain haemorrhage in the autumn of 1976. She was aware of the hospice movement in Britain and when she worked in London, had experience of end of life care at St Mary’s Hospital (Paddington) which also incorporated St Luke’s Hospital, Bayswater.⁹⁹ After arriving in South Africa, she met the hospital social worker Sylvia Poss who was involved with the Tender Loving Care group: a special interest group based at Johannesburg General Hospital that focused on care of the dying. As interest in the hospice ideal developed, Toc H continued to pay the salary of Margaret Lebish while she encouraged local interest. This led her to present a paper at a meeting of the TLC group on 9 Mar 1979 which formally proposed the establishment of a hospice in Johannesburg. This proposal was accepted and led to the formation of a steering group that included Stan Henen – a local activist who became a key figure in the Witwatersrand hospice until the early 90s. Margaret Lebish reflects upon the early development of what became the Hospice Association of the Witwatersrand, the contributions of key individuals, and role of Toc H at this formative time.

Sibongile Mafata – co-ordinator, Soweto Hospice: interviewed by Michael Wright, 10 Aug 2004. Length of interview ( Soweto group): 34 minutes.

Sibongile Mafata trained as a nurse and was appointed co-ordinator of the new hospice facility in Soweto in 1998. She had previously worked at Chris Hani Baragwanath Hospital, and also as a First Aid instructor, but she missed the hands-on nursing and interaction with patients. At first, Soweto Hospice developed slowly since little was known about the nature of hospice care. As awareness increased, the number of patients rose dramatically. The first patients mostly had a cancer diagnosis but today, the majority of patients are living with AIDS. She considers a major success of the organisation is the way in which the local community has supported the hospice, which is struggling to meet the demands now being placed upon it; in the future, she hopes for an expansion of the inpatient unit.

Joan Marston – HPCA board member; advocacy officer; f ounder of St Nicholas Children’s Hospice Bloemfontein: interviewed by Michael Wright, 21 Sep 2004. Length of interview: 28 minutes.

Joan Marston is a nurse by profession and began working in hospice as a volunteer in Bloemfontein. As she worked as a nurse, she saw the overriding need for a children’s service. She was instrumental in securing premises and establishing an 18-bed inpatient unit, supported by 6 day-care centres and a home care programme that reaches 750 children. She recalls how children need play as well as words and how this dimension has been built into the service. Three quarters of the children are dying at presentation, so an aggressive policy of food provision has become and essential part of the service. Remarkably, children have a matter of fact way of thinking about spirituality and the after-life that challenges more sophisticated articulations. Joan Marston then speaks of her advocacy role, promoting hospice and palliative care throughout South Africa and the support received from the Diana, Princess of Wales Memorial Fund: a very pro-active funder. Among many successes has been the government commitment to hospice and palliative care.

Meg Meyers – director of nursing, St Luke’s Hospice, Cape Town: Interviewed by Michael Wright, 7 Aug 2004. Length of interview: 54 minutes.

Meg Myers was born in the country now known as Zambia and, with her family, re-located to Cape Town when she was about 11 years old. She trained as a nurse and throughout her professional life, enjoyed nursing patients and being integrally involved in their care. She became involved with the hospice movement through her connection with the local church, which Christine Dare, the founder of St Luke’s, also attended. Eventually, she became St Luke’s first employee and has remained with the hospice ever since. Meg Myers speaks of the issues and challenges which faced the hospice as it began to become established: raising funds; securing pain relief; promoting a racially integrated service; confronting the AIDS epidemic; and maintaining a broad patient base that includes all life-limiting conditions. She considers the success of St Luke’s is due to the commitment of staff and their generous gifs of time and expertise. She thinks that staff drawn to the hospice have a distinct empathy with dying people, and as a result, the hospice develops a dedicated team that generates a spirit of service and belonging.

Flora Kobotlo Modiba – founder, Arebaokeng Hospice: interviewed by Michael Wright, 13 Aug 2004. Length of interview: 20 minutes.

Under the guidance of Flora Kobotlo Modiba, Arebaokeng Hospice was registered as a non-profit organisation in 2000 and the first patients were cared for in 2001. When the hospice opened, she was working full time and caring for hospice patients on her day off, helped by one other caregiver. She became aware of the hospice movement when she worked with cancer patients and after undergoing a palliative care training course, decided to begin a service in her local community. She speaks of several challenges: obtaining funds; networking with health organisations and personnel; gaining access to patient records; and challenging the myths around morphine. Some local doctors support the hospice and good relationships have been established with traditional healers in the area. An orphan programme has begun and a day centre is operational. A regular supply of food is the orphans’ most urgent need, so children are fed before they leave the centre. Plans are in hand to provide food parcels for the orphans’ extended families as a means of keeping the children in their communities rather than seeing them admitted to orphanages. In the future, Flora Modiba looks forward to the mentorship scheme and discussions have already taken place about the hospice’s involvement.

GK Moodly – chairperson, Verulam Regional Hospice Association: interviewed by Michael Wight, 12 Aug 2004. Length of interview (with CN Pillay): 34 minutes.

GK Moodly, a retired school principal, tells how Verulam Hospice has developed day care and home care services that reach out to the poorest areas of Verulam. The hospice relocated to a new building in 2004 and he is pleased that this will be the venue for HIV/AIDS training provided by South Coast hospice. Networks have been established with other organisations, including: Victoria Hospital; the Senior Citizens Day Care Centre, the Child and Family Care Centre; and the Lighthouse Crisis Centre - with beneficial effects. GK Moodly recalls the challenge of recruiting volunteers, since initially, the philosophy of hospice was largely unknown and no salary was payable. Gradually, however, the number of personnel increased and the hospice has expanded. Although fundraising is a constant issue, there have been pleasant surprises. One such surprise was the anonymous donation of a new 4x4 vehicle from members of the business community.

Mandla Mtatembi – palliative care nurse, manager of Inanda day centre, Highway Hospice, Durban: Interviewed by Michael Wright 9 Aug 2004. Length of interview: 52 minutes.

Mandla Mtatembi received his nurse training in the South African gold mines and thereafter, worked in government hospitals and clinics. He attended a lecture on death and dying as part of a course in psychiatric nursing; an experience that eventually led him to Highway Hospice. In 2000, he began working as a hospice home care nurse in Umlazi before becoming involved with the Inanda project in 2003. He describes Inanda as a community of more than 18,000 people that includes informal settlements of self-erected accommodation. In such settings, widespread poverty combined with the absence of clean water and effective sanitation systems are a constant source of health problems. The hospice provides home based care and day care. The day centre opens two days each week and 101 patients attended weekly in 2004. Food is provided and, if necessary, a family will bring a patient in a wheelbarrow to secure a meal. Support groups help patients living with AIDS to combat the stigma and the social inclusion is greatly appreciated. Although ARVs are beginning to be dispensed from Mahatma Ghandi Hospital, the roll-out programme is slower than what had been anticipated. Mandla Mtatambi speaks of the rights of passage around death and dying and of the importance of respecting the diverse spiritual perspectives of the patients.

Thembi Nyuswa – palliative care nurse, Highway Hospice: interviewed by Michael Wright, 8 Aug 2004. Length of interview: 22 minutes.

Thembi Nyuswa tells how she was the first black nurse to work for Highway hospice at a time when the hospice concept was still very new. Charged with introducing an African home care service, she obtained a drivers’ licence and began her visits in a donated Toyota Stallion. It was a fulfilling experience and Thembi Nyuswa tells how she valued the time spent with patients and the ways in which the service was received. She recalls the sense of shock that her presence occasionally caused during the transition to post-apartheid South Africa; a striking contrast to the supportive, family atmosphere of the hospice environment. A central feature of the hospice’s support for staff has been the regular group meetings/ de-briefings based on a strong concept of teamwork. The successes of hospice include: better pain relief for patients; comprehensive family support; a growth in volunteers; dialogue with traditional healers; and a wide-spread acceptance of the hospice concept.

Jennifer Padayachee - nursing sister, manager of Phoenix day centre, Highway Hospice, Durban: Interviewed by Michael Wright 9 Aug 2004. Length of interview: 37 minutes.

Jennifer Padayachee joined Highway Hospice after her father died of cancer in 1999. She previously worked as a midwife but has since followed the palliative care course at Highway Hospice. She speaks of the challenges faced by the community of Phoenix - of the poverty, the crime and the drug abuse - and how the hospice supports terminally ill people. This involves confronting the myths around morphine and raising hospice awareness within the community. Her responsibilities include the home care service and Phoenix day care centre. In 2004, the day centre operated in a shopping mall in premises donated free of charge. Although a temporary arrangement, this has had many benefits: accessibility; space for meetings/ therapies; low costs; and a customer base for sale items. Eventually, a permanent location is expected at the nearby Mahatma Ghandi Hospital. Jennifer Padayachee speaks highly of the local interest, the fundraising activities, and the increasing involvement of the community - all contribute to her feeling of fulfilment. She is aware, however, of the risks associated with her role and appreciates the support of the home care team at Highway Hospice.

Dr CN Pillay - president, Chatsworth Hospice: interviewed by Michael Wight, 12 Aug 2004. Length of interview (with GK Moody): 34 minutes.

CN Pillay is a retired surgeon who served the Chatsworth community as head of the department of surgery at the local hospital from 1969. Prompted by the lack of provision for people with cancer who were deemed incurable, CN Pillay conducted an audit and established the need for a hospice. Chatsworth Hospice opened in 1991 amid huge support. Today, Chatsworth Hospice provides a wide range of services to patients of all races whose condition is considered to be incurable. The majority of patients are of Indian origin and most have a cancer diagnosis. As only 5 per cent of patients present with AIDS, the work of the hospice in this area is mostly preventive and concerned with behaviour change. Spiritual care features prominently and begins at an early stage. Among the successes of the hospice, CN Pillay speaks of the broad community involvement and mentions in particular, the schools week: an initiative that raises children’s aware of the hospice and brings them onto the premises.

Dr Richard Scheffer – medical director, Rowcroft – Torbay and South Devon Hospice, UK: interviewed by Michael Wight, 24 March 2005. Length of interview: 42 minutes.

Richard Scheffer was born in Empangeni, Zululand. After a course in social work, he took up a teaching post at the University of Natal but subsequently changed direction to pursue a career in medicine. It was at medical school ( University of Cape Town) that he met Christine Dare and responded to her desire to bring Cicely Saunders to South Africa by taking her request to the Student Visiting Lecturers’ Organisation, on which he served. During her visit, Cicely Saunders famously engaged in a public debate on euthanasia with Dr Christian Barnard; an event which attracted widespread interest. Richard Scheffer recalls how he determined to specialise in palliative medicine after he heard Cicely Saunders give an inspiring lecture. After qualifying as a doctor, he took up a post in the Durban area and became involved in Highway Hospice before leaving South Africa in 1983.

Greta Schoeman – founder, Highway Hospice, Durban: interviewed by Michael Wright, 9 Aug 2004. Length of interview: 50 minutes.

Greta Schoeman was twelve years old when she became aware of her father and grandmother’s cancer diagnosis. She nursed her father intermittently during the next twenty years and recalls how poorly pain was controlled in those days. She trained as a paediatric nurse and after her marriage to an orthopaedic surgeon, she returned with him to his home in South Africa. It was in Durban that she came across Victor Zorza’s book about the death of his daughter in an English hospice, whereupon she returned to England, met the Zorzas and subsequently undertook a hospice care training course at Sir Michael Sobell House ( Oxford). Back home in South Africa, she determined to begin a hospice service and opened the guest wing of her home as an inpatient unit, eventually caring for 22 patients there during the next 18 months. Eventually, a suitable property became available and the hospice moved to its current site and expanded as neighbouring properties became available. Greta Schoeman goes on to speak of the challenges which confronted the developing service, of ways in which the multidisciplinary team was built and strengthened, and of how the hospice ideal proved a unifying and motivating force for those involved. Finally, she tells of her own cancer diagnosis and her experience of being cared for in the hospice she had founded.

Jackie Schoeman – director, Cotlands, Johannesburg: interviewed by Michael Wright, 11 Aug 2004. Length of interview: 32 minutes.

Jackie Schoeman has a background in social work and after working in residential settings, became director of the Cotlands organisation. She speaks of the different needs of children, of the paramount importance of home and family, but also of the roles played by Cotlands sanctuary (residential care) and hospice. Until ARVs became available, the emotional demands upon hospice staff were particularly high, and care for staff remains a top priority. Everyone is heartened, however, by the improvements brought about by ARVs and the way children receiving ARV therapy return to school and lead active lives. Such medication is expensive, but the costs have been incorporated into the organisation’s business plan to ensure continuity and maintain the children’s quality of life. Jackie Schoeman speaks of the need to raise funds and how the organisation is in constant touch with donors to generate a sense of belonging. A current challenge is to find foster placements for children who are HIV positive. Potential carers are apprehensive at the thought of imminent loss. Yet in fact, ARVs have improved the life of expectancy of such children. Among an expanding range of programmes, end of life care is seen as an important aspect of Cotland’s provision and in 2003, the organisation opened another hospice in the Western Cape.

Rosemary Schütler – social worker, Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (Highway group): 1 hour 33 minutes.

Rosemary Schütler joined Highway Hospice as a social worker in 1999. She was aware of the hospice ideal and had seen the service develop during the previous decade when Greta Schoeman and her volunteers used to speak to her elderly clients – some of whom were eventually admitted to the inpatient unit. She tells of the value of the interdisciplinary team meetings and of the introductory course that assists new staff to come to terms with their work with the dying and bereaved. The number of deaths is often high: a recent audit showed that in one month, 80 patients had been referred to hospice and 25 of these had died during the same month. She highlights the impact of bereavement, and recalls a ten year old boy who had already experienced the death of eight family members. Amongst the suffering, however, are many high points and Rosemary Schütler outlines the ways in which hospice has made a difference to the lives of individuals.

Dr Thobi Segabi – palliative care physician, Soweto Hospice: interviewed by Michael Wright, 10 Aug 2004. Length of interview ( Soweto group): 34 minutes.

When Thobi Segabi was working as a GP she found an increasing number of people with AIDS were consulting her for treatment. As a result, she decided to become involved with Soweto Hospice so she could influence a larger group of infected people. She subscribes to the concept of the multidisciplinary team and appreciates how issues can be approached from a variety of perspectives. She speaks of the difficulties communicating with those who believe they are bewitched, but is encouraged by the ways in which many patients are ultimately able to accept their diagnosis and deal with unfinished business. Thobi Segabi finds this activity to be a fulfilling part of her work, and is encouraged by the improvements brought about by antiretroviral drugs.

Angie Sehoke – palliative care nurse, Hospice North West: interviewed by Michael Wright, 12 Aug 2004. Length of interview (with Joan de Jong): 24 minutes.

Angie Sehoke previously worked as a theatre nurse and knew little about Hospice North West when she applied there for a post. Yet in the five years since her appointment she has found the work to be particularly rewarding. Many patients live in poverty; a situation exacerbated by their lack of documentation which preludes them from government assistance. Although all disease categories are catered for, around 90 per cent of patients are HIV positive. In the context of personal relationships - where women are usually powerless - an outreach programme of education attempts to change behaviours and ‘keep the negatives, negative’. Angie Sehoke thinks the hospice can be a resource to other organisations and looks forward to further opportunities for training and education.

Zodwe Sithole - palliative care nurse, Highway Hospice, Durban: interviewed by Michael Wright, 12 Aug 2004. Length of interview: 18 minutes.

Zodwe Sithole recalls how Highway Hospice supported her sister after she was diagnosed with breast cancer and how the care encompassed the whole family. Despite her nursing background, it was the first time she had come into contact with palliative care and from that moment, she decided to seek work in a hospice in order to ‘make a difference’. She lived in Johannesburg at the time and when a project coordinator was required for Soweto Hospice, she was subsequently offered the post. Little was known about palliative care then, so she visited local institutions advocating for hospice and explaining the benefits of the service to physicians and nurses. When her husband’s work caused a re-location to Durban, she joined the staff of Highway Hospice and continues her advocacy work in the community and among department of health officials. Her hope for the future is that the work of volunteers will be recognised by the payment of a stipend.

Stella Thackray – palliative care nurse, Highway Hospice, Durban: interviewed by Michael Wright, 9 Aug 2004. Length of interview: 13 minutes.

Stella Thackray recalls how she came to Durban from Perthshire, Scotland, in 1980. Two years later, she came into contact with the newly-formed Highway Hospice after a request for sutures to care for a patient who had fallen out of bed. She was subsequently invited to a hospice meeting where she was asked by Greta Schoeman to see a patient - and has been involved with hospice ever since. Stella Thackray tells how, in the early days, the hospice was located in Greta Schoeman’s home and nurses worked voluntarily, caring for patients who lived close to their own homes. She speaks of the changes that have occurred in the intervening years: the development of the inpatient unit; the growth in personnel; the development from nursing care to include other disciplines. Among the successes of the hospice, she prioritises the way in which the organisation has reached out to all sections of the community and responded to the needs of the patients and their families.

Elna van der Merwe – nursing services manager, Centurion Hospice, Pretoria: interviewed by Michael Wright, 13 Aug 2004. Length of interview (Centurion group): 32 minutes.

After living in Mozambique and Lesotho, Elna van der Merwe returned to South Africa and seeing a board that promoted the work of Centurion Hospice, telephoned to see if she could be of assistance. Her fortuitous call answered a need at the time and after working for the hospice as a nurse, she eventually took up the post of nursing services manager. She speaks of the challenges faced by the hospice: developing an inclusive service, staff training; bereavement care after the death of a patient. These challenges are exacerbated by the drain on resources caused by the number of trained staff who leave South Africa and of the pressures this places on human resources. She is anxious to develop a hospice culture where patients do not merely receive from the hospice, but are able to contribute as participating members of a wider community. She reflects upon the process of mentoring and how it impacts upon the life of the hospice; and concludes by suggesting that in essence, the success of Centurion hospice is due to the ‘servant attitude’ that has been developed there.

Alta van der Wetering – nursing sister, Centurion Hospice, Pretoria: interviewed by Michael Wright, 13 Aug 2004. Length of interview (Centurion group): 32 minutes.

Alta van der Wetering tells how she came to work at the hospice at a time when there was a shortage of nursing skills. Among the many challenges confronting the hospice, she considers funding to be a particular issue due to the constraints that a shortage of funds places on the range and quality of hospice services. She points to the importance of prayer in the day to day life of the organisation, and how time and again, those prayers are answered at a time of need.

Professor JP van Niekerk – chair of HPCA, manager of PEPFAR project: interviewed by Michael Wright, 13 Aug 2004. Length of interview: 34 minutes.

JP van Niekerk was deputy dean of the medical faculty at the University of Cape Town when Chris Dare, a medical student and friend of Cicely Saunders, sought help to bring her to South Africa (1979). As the hospice movement gathered momentum, he joined the board of St Luke’s but later relinquished the position when he became chair of the national organisation – named then the Hospice Association of South Africa (HASA). He speaks of the conceptual and practical challenges that have faced the movement over the years, and how the service has broadened to include patients with HIV/AIDS. As he looks to the future he itemises the successes so far: the inclusive nature of the service; raised public awareness; widespread education and training programmes; the production of standards and a comprehensive strategy for development. The next step is to use the PEPFAR funding to build capacity and roll out the programme of expansion in collaboration with South Africa’s provincial governments in order to ensure that all areas of the country receive the benefits of palliative care.

Lesley van Zyl – general manager. Highway Hospice, Durban: interviewed by Michael Wright, 8 Aug 2004. Length of interview (Highway group): 1 hour 33 minutes.

From her background in nursing, Lesley van Zyl undertook further studies that led to diplomas in financial management and personnel. She is currently the general manager of Highway Hospice and tells of the major changes in service provision: the movement away from inpatient provision to community care and the establishment of day centres in Phoenix, Umlazi and Inanda. This movement was accompanied by a painful process of retrenchment which saw the inpatient facility reduced from 16 beds to 8, together with a corresponding reduction in staff. Successful fund-raising over the previous two years, however, means the hospice is buoyant and optimistic about the future. Among a group of around 400 volunteers, recent initiatives have included the training of 24 community home based caregivers who support the social workers and cover an area within walking distance of their homes. Plans for the future include the introduction of special family care workers who will support those families without documentation - such as birth certificates and identity forms – and as a result are denied access to government support.

André Wagner – HPCA board member; organisation development officer: interviewed by Michael Wright, 22 Sep 2004. Length of interview: 30 minutes.

André Wagner became associated with the hospice movement in South Africa after he founded the Helderberg AIDS centre and looked for support for patients coming towards the end of their lives. At that time, he was working in local government and had a background in organisational development related especially to human resources. Before long, Liz Gwyther suggested he became more involved in the palliative care movement and he subsequently became a board member of HPCA, with a full time commitment from June 2004. André Wagner’s priority has been to develop standards in management and governance to stand alongside clinical standards developed in 1998.

Marisa Wolheim – executive director, Shanti Nilaya, Hospice in the West: interviewed by Michael Wright, 13 Aug 2004. Length of interview: 20 minutes.

Marisa Wolheim was part of a group that was inspired by the work of Dr Elizabeth Kübler-Ross. It was a high point, therefore, when Kübler-Ross visited the hospice during 1994. The building was donated by the spiritualist church and initially, this led to some misconceptions about the relationship between the organisation and the church. Funding has also been a problem. Yet despite expansion and increased demands, the service remains free of charge. A strength of the hospice has been the in-house training and Marisa Wolheim speaks of the benefits of the self awareness course undertaken by new employees and volunteers. Other courses include counselling and caring for the carers and these have been provided for the department of health and a wide range of other groups. The hospice has a strong spiritual tradition and this is evident in the training of staff and the engagement with patients.