Fx’€¦ (Sounds of things being moved around)

KHOPOTSO: Our visit to Mofolo Hospice coincided with the centre’€™s move to new premises. Staff was busy packing away tons of files and moving furniture. For the last nine years, the Mofolo Hospice, operating from an L-shaped corrugated iron structure on the grounds of Mofolo Clinic, has been cramped for space. It experienced death-like cold conditions in winter and uncomfortable heat in the summer. Despite the conditions, the centre has been a refuge for many people staring death in the face. Sister Sibongile Mafata, co-ordinator of the hospice was here when the centre first set up in Mofolo. The move is, for her, something akin to the end of an era.

SISTER SIBONGILE MAFATA: Mmm. It definitely feels like that. When we started in 1998, we didn’€™t have patients that were admitted. It was just the two home care sisters who were going out. So, this building looked quite big because we were not utilising it. But gradually, with (the) increase of patients, with (the) increase of staff this building has become so, so, small it’€™s unbelievable’€¦ It’€™s very hot in summer. It’€™s very cold in winter. And then, we don’€™t have adequate privacy for our patients. It’€™s a partition which divides males from females. And the separation of beds ‘€“ privacy is just pulling a curtain around one person ‘€“ and it’€™s not really adequate privacy. You find that you have a very terminal person next to someone who is still a little bit conscious and it becomes traumatic to that person.

KHOPOTSO: The hospice is now moving to a new and bigger brick structure with improved ventilation in Diepkloof, to the east of Mofolo, and will boast side wards for terminally ill patients and a paediatric unit. Sister Mafata also remembers a time when all the patients they tended to were those with cancer.

SISTER SIBONGILE MAFATA: Yes, there has been a change in trend(s) because when I started in 1998 all the patients that we had in our programme were cancer patients. Presently, with these +500 patients, I’€™d say 90% is HIV/AIDS patients and then, just about 10% or maybe 9% is cancer patients. But we also take certain terminal chronic conditions into our programme’€¦ The chronic would be an end-stage renal failure. It would be someone with diabetes who is already terminal with bed sores, needing pain control’€¦ though we don’€™t take chronic conditions like stroke, like diabetics if they are okay’€¦ unless they are terminal and need palliative care.

KHOPOTSO: Terminal illness is often understood to mean that a person is almost dying. And so is palliative care understood to mean a process of preparing a patient for inevitable death. But that’€™s not always the truth, asserts Sister Mafata.    

SISTER SIBONGILE MAFATA: (Smiling) Yes, that’€™s the concept that some people still have’€¦ You’€™ll find that some people would say, ‘€˜we don’€™t want to take our family member to hospice because when the person goes to hospice, it’€™s the end of the person’€™. It’€™s not true’€¦ Some people who come here come in because they were not getting proper care at home. They were not getting medication at the correct time. They were not eating proper food. So, you find that their conditions deteriorate. But we’€™ve had miracle stories. We had terminal patients coming out of this in-patient unit, going back home.

KHOPOTSO: This is particularly true for people with AIDS – the majority of their patients – she says.

SISTER SIBONGILE MAFATA: The introduction of antiretrovirals has really played a major, major role’€¦ We do have patients who walk out of here being much improved.

Fx’€¦ Children playing on the street.

KHOPOTSO: About three kilometres from the hospice, 25-year old Mthokozisi Ximba stays with his grand-mother. Oblivious to their neighbours’€™ worry, young kids in the street play Chicago, a game that involves tins stacked on top of one another, ball-throwing and plenty of ducking.

When I see Mthokozisi, what strikes me most about him are his hands. They are both wrapped in clean, snow white bandages. He has had gangrene ‘€“ a condition where death of tissue occurs in a part of the body. He had to have his fingers removed as a result. Mthokozisi also has AIDS and spent two weeks at Mofolo Hospice in December last year.      

MTHOKOZISI XIMBA: Bengihlulek’€™ ukuhamba. Bangincedile. Sengikwazi nokuhamba. Nomziba uyabuya. Bengiphelile. Umzimba wami bowumncane. Umziba wami sowuyabuya ubaright.  

TRANSLATION: They helped me. I couldn’€™t even walk. I had lost weight. Now I am picking up again.

KHOPOTSO: Mthokozisi has now started antiretrovirals and is also taking TB treatment. Community care worker, Phindile Nhlapo credits Mthokozisi’€™s survival to his own will to survive.

PHINDILE NHLAPO: Azange az’€™alahle impilo yakhe. I, as an individual, I like ukuthi uma usebenza ngomuntu akuphe ihope. Then, nawe uyakuboosta amamorals. It’€™s nice, very, very, very.

TRANSLATION: He never gave up on his life. I like a patient who gives you hope. It boosts your morals. It’€™s very nice.

KHOPOTSO: Mthokozisi is now on the mend from a life of crime, drugs, prison and now illness. A community care worker from hospice visits him every week to check on his progress. Although some make it, others do not. Staff at Mofolo Hospice knows that full well. Retired midwifery sister Johanna Seabela, is aware of the high rate of mortality among hospice patients, but would like to serve the remaining years of her life serving the hospice.

SISTER JOHANNA SEABELA: Hospice is hectic because it involves your emotions. And yet, midwifery section is emotions and physical, but at the end of it you are always happy because you get good results ‘€“ you give life ‘€“ which is the opposite at hospice. It affects you spiritually, mentally, emotionally.    

KHOPOTSO: But 62 year old Sister Seabela remains committed to the mission of hospice.  

SISTER JOHANNA SEABELA: Yes, actually, to give them that last days’€™ comfort – to relieve them from the suffering, most of the time the pain. What we do (is that) we try to give them comfort’€¦ If that time comes they must get a decent pass-over.

KHOPOTSO: Sister Sibongile Mafata, co-ordinator of the Mofolo Hospice sums it up by emphasising that traditionally, hospice services are aimed at caring for those whom doctors in conventional hospitals have given up hope of curing. This is called palliative care.

SISTER SIBONGILE MAFATA: It’€™s when you find goes to hospital and the doctors say ‘€˜there is nothing more that we can do for you’€™. The person has got an incurable condition. So, now that person is going to be referred to hospice. With hospice, we don’€™t say ‘€˜we’€™re going to cure’€™ because there is no cure. But we are just going to provide quality care’€¦ With palliative care, it’€™s unlike a hospital. We look at the physical problems. We look at the social problems ‘€“ at times the person becomes too ill because of the social problems. We look at the psychological problems. We look at the spiritual problems. So, we look at the person in totality.