Mary Ash - Executive Director, PASADA, Dar es Salaam, Tanzania: interviewed by Jenny Hunt, 9 November 2004.
Length of interview: 41mins.

Mary Ash describes the early development of Pastoral Activities and Services for People with AIDS Dar es Salaam Archdiocese (PASADA) from 1992. Initiated by a small group of HIV positive people the organization grew rapidly. By 1994 there were 150 clients registered and a small dispensary was established with funds from the Catholic Church to provide medications. She lists the current service: medical assistance and routine treatment of opportunistic infections for 12000 registered HIV positive clients, including 600 children; laboratory services; a pharmacy; counselling; home-based palliative care; support to orphans and vulnerable children; a programme for Prevention of Mother to Child Transmission (PMTCT); tuberculosis diagnosis and treatment; training. Further details are given for the home based care programme and morphine and drug policies. Turning to future plans for her organization Mary Ash discusses the challenge of providing a quality service to high numbers of patients. She sees the solution as decentralization, utilizing the 16 parishes within the archdiocese of Dar es Salaam that have dispensaries. She is keen to ensure that PASADA retains its holistic approach and to integrate the ARV programme as a complement to the other services. Staffing and volunteer details are discussed together with the training programmes required to implement this growing service. Concluding with a summary of PASADA’s successes Mary acknowledges an ongoing need for major funding to support quality care, and the need to network with other service organizations to share the load.

Dr Karilyn Collins – m edical director, Muheza Hospice Care, Teule Hospital, Muheza: interviewed by Jenny Hunt, 7 November 2004.
Length of interview: 25mins.

Karilyn Collins was brought up in the UK in a family that had no medical background. She showed signs of wanting to be a doctor early in life, and although she had a strong interest in music, she remained focused on this achievement. While training at St. Thomas’s Hospital in London, she met her husband Richard Collins and they married as students. After graduating they went into general practice and developed a successful family health practice over 25 years. Although they derived great satisfaction from this they determined to give the end of their lives to tropical medicine in the developing world. In 1995 they went to Liverpool and studied for the Diploma in Tropical Medicine and Hygiene from Liverpool Tropical Medicine School. They then went to Tanzania because the hospital at Muheza had a link with Hereford. Enjoying the challenge of medicine in such a different context, the couple gave their notice in at their practice and returned to do a locum in Tanzania. Upon returning to the UK once more, Karilyn Collins realised that palliative care would be a useful addition to her medical skills if they were ever to return to Tanzania. She worked at a hospice in Hereford to gain palliative care experience and developed a passion for hospice work. During another short visit to Tanzania in 1999 she realised that her future lay in palliative care and applied to Cardiff University to do the Diploma in Palliative Medicine. Having completed that diploma she arrived in Muheza in September 2001 along with her husband who had been employed as the medical superintendent of Teule Hospital. Having established Muheza Hospice Care since then she now administers a comprehensive palliative care programme that attends to pain control, social, spiritual and emotional needs and offers continuity of care in the community. Palliative care enables her to use her wide experience in alternative therapies, including hypnosis and acupuncture, as well as the broad depth of experience gained from family medicine.

Dr Kristopher Hartwig – physician, Selian Hospital , Arusha: interviewed by Jenny Hunt, 4 November 2004.

Kristopher Hartwig tells the story of his early life in Tanzania with his teacher parents. The family left to live in the USA when he was about 8 years old and he didn’t return until many years later. After marrying a Tanzanian born daughter of Lutheran missionaries, the couple determined to work in the country and did so at a faith based hospital for several years. Upon reflection he laments his ignorance of pain control at that time. They returned to the USA where he practiced family medicine and later joined a hospice. His friend Mark Jacobson from Selian Lutheran Hospital asked him to visit Tanzania for two months and help to establish a hospice service at the hospital in Arusha. It seemed unlikely at that time, given the responsibilities of raising and educating their five children, that he would return full time. Yet in 2002 the couple did return for an indefinite period. He ascribes some of that decision to the inspirational staff members that were then working in the hospice programme. Kristopher Hartwig shares his sense of privilege at working with a hospice team but realises that hospice in this setting can never hope to meet all the needs of the many dying patients in the area. Despite this frustration he believes he will remain in this field and speaks of it passionately. Reflecting on how faith influences his work, he is surprised at the ease with which hospice workers integrate faith into their work in this setting. Drawing on his own beliefs keeps him motivated in seemingly impossible situations. He talks of his need for faith in a God who can achieve things that he feels he is unable to do. He shares his dream for palliative care to be widely and fully integrated into health and faith based services around Tanzania and hopes to be part of that achievement.

Dr Mark Jacobson – medical director, Selian Hospital , Arusha: interviewed by David Clark, 4 June 2004.
Length of interview: 57 minutes.

Mark Jacobson has been working in Tanzania as a physician for almost 20 years. His base is a 100-bed Lutheran Church Hospital that serves 55-60,000 patients annually. He first began to get interested in palliative care in the late 1990s.

‘…we had a patient who actually asked us to come and care for him at home. He was dying from a lymphoma and he didn’t want to be in hospital and he asked if, as his caregivers, we could provide him with some care at home and some pain relief for his disease and he wanted to go through this process of dying, and this really triggered for us kind of a Eureka moment’.

He describes the African traditions associated with dying at home, but highlights the lack of skills and support available to families and communities in this situation. He refers also to the growing incidence of chronic disease among the local population, and also to the new epidemic of HIV/AIDS.

‘Our awareness of needing to care for end of life at home, or starting our hospice programme, really coincided with the timing of this epidemic, when it really began to peak here in Tanzania, which was in the late ’90s and the early part of 2000-2001’.

His group began to share ideas with the local community, and also to engage in discussions with others in Tanzania interested in the development of palliative care.

The programme at Selian consists of a team based at the hospital which gives the leadership as well as the medical back-up for the care provided at home. This team meets and trains volunteers in the local communities. Those volunteers then become the weekly visitors to the patients who are in the hospice/palliative care programme. Currently, at any given time, some 300 patients are in the programme. A small team of medical nursing staff support about 120 volunteers out in the surrounding communities, and work together with them to provide the ongoing care in the home. Oral morphine has been available for about the last one and a half years. All of the work is done in the homes of the patients. Some patients in hospital are introduced to and acquainted with the programme in hospital, but there is no inpatient component to the programme.

Turning to the wider development of palliative care in Tanzania, Mark Jacobson points out that it seems to have started more or less simultaneously in three or four parts of the country. He refers to plans to develop palliative care services in the 20 Lutheran hospitals in the country as well as in the hospitals of other denominations.

‘It would be a tremendous scaling up and we’re really excited by it … I think that the faith-based organisations, because of their existing infrastructure are in an ideal place to do that, if we’re able to identify models that are cost-effective and relatively inexpensive to graft onto existing services’.

He concludes the interview by describing the creation of a Tanzanian national association for palliative care, coming together in discussions at Arusha in June 2004. He also outlines his involvement in the newly formed African Association of Palliative Care ( APCA).

Angela Kaiza - s ocial worker, Muheza Hospice Care, Teule Hospital, Muheza: interviewed by Jenny Hunt, 8 November 2004.
Length of interview: 18mins.

Angela Kaiza joined Muheza Hospice Care in October 2004 having obtained a degree in sociology. Although she had not previously heard of palliative care, her interest in helping disadvantaged people was stimulated by dreams as a 17 year old. She describes the programme at Muheza Hospice Care and provides detail on the main social and emotional problems experienced by the patients. She shares her ideas on how to reduce stigma amongst HIV positive people and identifies groups in the community who need to be targeted to ensure that HIV affected people are accepted in their villages. Turning to the specifics of the monthly ‘Kids Club’ Angela Kaiza provides details about the day’s programme that encourages HIV infected children and their families to socialize together, share food, and learn about the illness. She identifies the gaps that she sees in the current provision of care and hopes to work towards developing a bereavement service. She also shares her commitment to increase the numbers of social workers actively involved in hospice programmes throughout Tanzania.

Paulina Natema - public health nurse, Selian Lutheran Hospital, Arusha: interviewed by Jenny Hunt, 5 November 2004.
Length of interview: 48mins.

Paulina Natema is responsible for providing spiritual and emotional support and training as part of the holistic palliative care service provided by Selian Lutheran Hospital. She tells of becoming involved in this work at a time when her mother-in-law was dying from cancer. She discovered the benefits of writing a will and dying without pain, and was keen to introduce these concepts to her community. Paulina saw how home based palliative care could reduce hospital costs for cancer and AIDS patients living in poverty, and recognized the value of families utilizing their own capacities for care and support. She highlights the benefits of families, including children, being informed and prepared for a death. She compares how differently the bereaved are handled nowadays and sees her role as a hospice worker as finding ways for families to remember the deceased. Paulina Natema discusses specific difficulties experienced by families: not having a will; rights of widows and children; not having enough time to prepare and counsel children. She highlights the impact that local Masaai culture has on implementing palliative care principles and notes some changing trends. Turning to her motivation to do this work Paulina expresses her great love for her community and the poor and disadvantaged within it. That she was born nearby and has lived in this community all her life makes her feel totally accepted and respected by the people she helps. She gives a moving account of her personal family losses and acknowledges how difficult it can be to continue with hospice work when she herself is grieving.

Dr Hussein Mtiro - Acting Head of Palliative Care Team, Ocean Road Cancer Institute, Dar es Salaam and Mary Haule - Palliative Care Nurse, Ocean Road Cancer Institute, Dar es Salaam: interviewed by Jenny Hunt, 10 November 2004. Length of interview: 52mins

Hussein Mtiro summarises the development of the palliative care team at this hospital. From the inception of a pain control team in July 1994 by Twalib Ngoma, now the Director of the hospital, its main emphasis was on pain control. Now that 3 members of staff are trained in palliative care the more holistic approach warrants the label of palliative care team.

Hussein Mtiro and Mary Haule give details of the current programme that attends to both inpatients and outpatients. In September 2004 staff shortages forced the palliative care team to spread itself among different wards and its palliative care focus and development have been compromised. Hussein Mtiro expresses concern at the level of support provided by the home based care organizations on whom they depend to provide continuity of care after the patient is discharged. He comments that these volunteers have no training in pain control and also comments on the continuing resistance of doctors to using morphine.

Mary Haule tells how regulations concerning the importation of morphine in Tanzania were relaxed after successful advocacy from Hospice Africa, Uganda. Moving to issues of education and training she gives details of the team’s efforts to inform hospital doctors about morphine, breaking bad news and how to disclose a diagnosis in a culturally sensitive manner.

Expanding on cultural issues, Hussein Mtiro discusses the role of traditional healers and links them and geographical distance with late cancer referrals. He paints a picture of severely limited diagnostic facilities countrywide, no follow up service for patients outside of Dar es Salaam and expensive diagnostic systems that are beyond the reach of most ordinary Tanzanians. He suggests a solution lies in expanding the number of government cancer hospitals around the country and developing a palliative care policy. Going on to list the most common cancers in different regions of Tanzania, he advises that cervical screening was only introduced at the hospital in 2002. None of the four oncologists at the Institute has palliative care training. Treatments available at the hospital are described.

Mary Haule shares her concern that cancer has been overshadowed by AIDS and despite the presence of the WHO palliative care team there is a lack of political will to prioritise it as a health need. Hussein Mtiro shares his dissatisfaction with the lack of coordination of palliative care. He also identifies gaps in the Ocean Road Cancer Institute service, primarily the lack of good home based care for patients diagnosed with a life threatening cancer.

In conclusion they count their successes as introducing morphine, training staff in palliative care skills, and cooperating well with their hospital colleagues. They acknowledge personal frustration at not being able to do more for late referrals and recognize the emotional burden they bear in this work.