Selian Lutheran Hospital

Mark Jacobson describes how the approach of the Selian Lutheran Hospital hospice team integrates faith into home based care. The addition of practical skills to the support already provided by the local church community provides holistic care to patients “where people are coming together to pray with the patients who are unwell…we simply grafted onto that some skills, some training that enhances what they’re able to do in the homes.”²⁶ The community immediately seemed to recognise this was something that they needed.

There was this sense of Eureka moment of people coming together and talking with leadership in the community, talking with the religious community, and when we would begin to talk about what could be accomplished through hospice, or what the concept was in palliative care, it was striking because literally within a few minutes of starting our presentation…it was as though there were this great need that people had not been able to articulate before, and when somebody put before them the idea of marrying together a medical model with a spiritual model of caring for people who were at home dying, people got very excited, and that gave rise to our whole [volunteer based] approach²⁷.

Mark Jacobson describes the beginnings of palliative care at this hospital:

…about five years ago we had our first opportunity where 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…²⁸

The epidemic of HIV/AIDS was a major impetus for scaling up home-based care as patients were unable to afford to be in hospital. Selian Lutheran Hospital was already involved in traditional community health and deeply involved in working with community health workers and other caregivers in the village. The church was known, accepted and appreciated in the villages through its work in HIV prevention, education and development work, so it was an easy transition to extend its involvement into home based care for the dying. This coincided with the AIDS epidemic peaking in Tanzania at the turn of the millennium. The wish of Africans to die at home and be buried on their home property meant that when there was no medical cure the patient readily agreed to return home to die and relinquished the responsibilities of care from the hospital to the family. Mark Jacobson:

[There was]…an assumption that because there were centuries of tradition of dying at home, that there was also a tradition of knowing how to care for people at home, and sadly, as most assumptions that turned out to be an incorrect assumption…Often people were going home to die in a place where no-one knew how to care for them, where there was no-one to relieve their symptoms, there were great difficulties [for] families being able to talk to somebody who was dying about their dying.²⁹

Kristopher Hartwig became involved with the Selian Lutheran Hospital hospice team through his colleague Mark Jacobson. He hopes that the national hospice association established in 2004 will embrace the often unrecognized AIDS organizations who manage to provide good patient care without oral morphine. Concerned at the artificial divide between palliative care and AIDS service organisations, he partly blames donor funding that is often exclusively AIDS driven.³⁰

And I’m afraid that, as we organise Tanzania palliative care, we’ll miss so many people who are doing it because they think they’re just doing good work with AIDS – which they are – but we want to be linked, we want to be sharing the work and the expertise… And I think [the divide is] artificial and it’s partly driven by the disease which is AIDS and the condition, and partly driven by the nature of the donor community where funds that come for AIDS are just for AIDS. And if you develop cancer while you have AIDS, you can take care of that cancer. But in this part of Tanzania …every region has it’s own very interesting epidemiological differences, so we don’t see much cancer as part of HIV/AIDS here, now.³¹

He identifies economic hardship as one of the greatest challenges faced by patients and emphasizes the need to be aware of the many cultural contexts in which palliative care is practiced in Tanzania. He describes an exciting and effective ‘Selian model’ that has evolved specifically in response to their unique situation and goes on to expand on comments he made in a paper published in 2001.³²

Muheza Hospice Care

Alison Hills was the medical superintendent at Teule Hospital in the early 1990s. She started a small palliative care team of one nurse who had been trained at a hospice in Hereford, UK and one nursing auxiliary. Karilyn Collins describes the conditions:

And this little team was going through the wards with a bucketful of equipment, looking at patients who were referred to them who were on the point of dying, and they were very much looking at the very terminally ill patients. There was also a Department of HIV that were running from a converted container: it was dreadful, the temperature went up to goodness knows what. There were just two rooms in this container: one where people sat and waited and one where people had their counselling. There were two counsellors and the District AIDS Co-ordinator and they were very much linked with Tanga’s working group who were using herbal medicine for the treatment of HIV/AIDS and they’d been doing that since 1992.³³

Karilyn Collins arrived at Teule hospital in September 2001 without a job description, but saw the need for palliative care in this setting to help cancer and AIDS patients. A meeting of interested parties formed Muheza Hospice Care as an independent non-governmental organisation.

…we had our first meeting and we discussed what we should be called. I wanted to be called St Thomas’s Hospice because I thought there were lots of doubts about what we were doing and also I trained at St Thomas’s – that was voted out ... everything was done very democratically and they said ‘We want to be Muheza Hospice Care.’ So that was where the name came from.³⁴

An already existing community AIDS home based care system provided the structure for home based palliative care. Funds were initially provided by well wishers in England to convert the hospital TB ward into a designated 5 bed palliative care ward in February 2002.

By late 2004 this hospice service had a comprehensive package of care. Patients on the wards in the hospital are assessed to provide a care plan on discharge, home support offers counselling and monitoring, and re-admissions are recommended as necessary. As further programmes are implemented, the rapid growth of this service creates increasing administrative demands for the staff. There is concern that HIV, the ARV therapy and the strict monitoring programmes that accompany the illness, will undermine good palliative care for cancer patients.

PASADA

This organisation started as a self help group in 1992 by a small group of people living with HIV. Motivated by the desire to do something for themselves and others living in similar situations they applied to the Catholic Church who gave them a small building in Dar es Salaam. The number of members steadily increased until in 1994 a small dispensary was opened to offer basic medical assistance and drugs for the treatment of opportunistic infections. At the end of 1994 there were 150 HIV positive clients registered. By late 2004 over 12,000 registered clients reflect the trend of the pandemic in this city and the success of this service. PASADA is now managed by a professional team of administrators and medical practitioners.

Ocean Road Cancer Institute

A hospital pain team comprising four doctors, a nurse and two social workers was brought together by Twalib Ngoma in July 1994. He attended a course on palliative care in the UK and returned to Tanzania committed to establishing a pain team. He initiated morphine use and organised palliative care training for his staff in 2000. As Director of ORCI he no longer has the time to develop palliative care but actively supports the palliative care team in its work.