Mother of Mercy Hospice

Alison Hill, the acting director, describes how the hospice became established:

Twelve years ago a Polish nun, Sr. Leonia Kournas came here as a registered nurse… She recognized that there was a need for palliation in terms of home based care within the communities…At that time HIV was just becoming noticeable in terms of symptomatic patients. So she started the home based care programme. About 6 years ago it had grown to a point where she needed more staff, more people working and really just a centre point to work from…where patients could come in if they were acutely ill and receive care.²⁴

Sr. Kournas²⁵ has written a brief history of Mother of Mercy Hospice from which these extracts are taken:

Six years ago the first of the hospice buildings was erected and Mother of Mercy Hospice began admitting patients for around the clock medical care and palliative support.

Through a network of community care-givers, we receive updates on patient conditions and daily, send a group of care-givers and medical staff to our out-stations to assess the situations and provide medical care to those who are unable to come into the hospice. The hospice additionally provides extensive counselling services, physiotherapy and a wide variety of laboratory testing.

The UN-WFP food aid consists of monthly rations of maize meal, cooking oil, high protein porridge and occasionally dried beans. This food is given to more than 300 of the patients in our home-based care program, to the hospice for preparing daily meals as well as to our school. Local farmers and other donors bring in surplus vegetable crops and an Irish donor has organized a ration of meat given weekly for the hospice in-patients.

A combination of poverty and drought has created widespread starvation and malnutrition in our communities. Although HIV positive, a significant number of the illnesses we treat and deaths we suffer are a direct result of, or exacerbated by issues of nutritional deficiencies. Food has become one of the most important treatments we offer at the hospice. The hospice prepares three main meals a day, consisting of the local staple, nshima made from maize meal, vegetables and a source of protein, either beans, meat or fish. We also provide high protein porridge in the morning and smaller snacks between meals. The school prepares at least one meal per day for the students.

Three years ago the hospice built a small day center for the children of our clients to offer some education, activities, and food during the daytime. As time went by, the number grew and the day center was not big enough to accommodate the need. In March of 2002 I started construction on a larger open community school was started and September 9, 2002 the doors of this school were opened to approximately 80 children. Since that time, the numbers continue to increase. Although governmental schools are now considered free to attend, affording the required supplies, uniforms and shoes exclude many children from attending. We offer morning classes including mathematics, science, English, reading and history as well as afternoon classes involving music, art, sports and drama. The open community school implements a reduced curriculum from approximate grade 1-7.

Poverty, disease and starvation are a daily reality here, as they are in many countries across the globe. The world can no longer turn a blind eye to the issues surrounding HIV / AIDS as its devastation is felt across all boundaries; geographically, economically, and socially. Addressing our present situation involves focusing on supportive treatments for opportunistic infections, anti-retroviral treatment for extending life, emotional and spiritual support for the patients and their families, and social support for food security and basic welfare. Addressing issues of the future involve providing a safe place for our children to grow up and ensuring the education they need to create change.

Alison Hill came to work in Zambia from the USA in 2001 and was attached to this hospice as a medical intern. Sr. Kournas asked her to stand in as Director while she went on sabbatical. Alison considers this organisation to be more of an HIV care centre rather than a hospice:

We do have the hospice itself which functions a whole lot like a hospital, dealing with an opportunistic infection, monitoring it and aggressively treating a bacterial infection or TB, getting them up and running and getting them back home. We stretch the definition to incorporate more aggressive therapy.²⁴

Jon Hospice

Jon Hospice was opened in 1999, fully funded by a Dutch national Pola van der Donck whose musician brother died of HIV. His dying wish was to provide funds to help HIV positive people in developing countries. Pola had no prior vision about how to begin, but came to Zambia to offer care and support. She met Father Kelly, the founder of Kara Counselling (name derived from ‘friend’ in Irish) who suggested building a hospice. This was perceived as a gap in the other Kara programmes and the idea of a hospice was born. (The same donor provided funds for the building of Mother of Mercy Hospice, Chilanga, and for Martin Hospice in Choma).

Sr. Leonie Kornas, Zambia’s first hospice pioneer and a Polish nun, transferred the in-patient Polish hospice model to Zambia. Cromwell Shalunga, a clinical officer working at the hospice says:

What we are coming to understand now is that institutionalized type of care actually is not the ideal one, though we are left with no options, because the structures are already in existence. The mobile type of hospice would have done more work compared to what we have done because we are taking care of a limited number of patients’.¹⁶

Our Lady’s Hospice

The story of Our Lady’s is told by Sr. Crucis, the managing director:

The thinking came from my experience teaching at the University Teaching Hospital (UTH) where there is officially something like 1500 beds but unofficially more like 2000 patients, many of those patients on the floor. One came to the conclusion that with the advent of AIDS, it has created a huge crisis in the health service here which was totally unprepared…UTH was then being used as a terminally ill centre without being designed as such and nobody was prepared for that.¹⁸

Sr. Crucis describes how initially people came to a health centre, received treatment and went away. Now there is chronic sickness, families are being decimated, the extended family system has collapsed and neither family nor the medical profession is prepared for dealing with long term illness. She continues:

So with that in mind we tried to look at a new model of care for chronically ill people. We [that is, another nurse, a senior nursing office at UTH, religious congregations and Sr Crucis] formed a small committee and actually got ten thousand dollars from the USA, from the Franciscans, and we decided to do a pilot study. So we visited Uganda, Kenya, Zimbabwe, Chikankata here to see how they were managing the problem. We thought Uganda was a good choice because they had come out before others about the AIDS issue. We pooled all the information together to see what suited us best. We found that in the rural places in Uganda, especially in the mission hospitals, they had a good outreach programme, but when we got to Kenyatta Hospital, it was another UTH; total confusion. In fact in Kenya we were told that AIDS had been kept quiet for so long because they were worried about their tourism.

So we came to the conclusion that there was no way we could build a structure that could cater for all the patients. Whatever model of care you had, it had to be community based. We decided on an in-patient unit because we found that the patients in the community could not be cared for by their relatives if there was some kind of crisis with opportunistic infections. This was made worse by poverty and the resulting malnutrition, anaemia, so you have to sort those things out to some degree. So we decided we also needed a clinic because patients would need to come for review, new patients identified. At the time we started ARVs were not available or affordable, so all we could do was treat the opportunistic infections and symptomatic care, including the spiritual aspect, grief, death and dying.¹⁸

Cicetekelo Hospice ( Ndola Hospice)

Sr. Keane was the Acting Head of the Medical Dept at Ndola Central Hospital in 1992 when she became increasingly concerned at the levels of HIV infection in her department. By 1998 she estimated 70% of the patients were HIV positive and there were 2000 deaths alone that year at the hospital. She heard many stories of family caregivers feeling unable to cope with the burden of illness. There had been suggestions by some nurses that a hospice was necessary but it took a meeting of religious leaders in 1999 to create the Ecumenical Hospice Association to oversee the development of this interdenominational hospice. The hospice is registered with the newly formed national palliative care association.