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Living until you die
Pat Lucas
2005-11-21

Agonising death from terminal illness is an unnecessary tragedy these days. While death is inevitable, the pain can be relieved with easily accessible medication -- but not for those who are dying beyond the reach of doctors or professional nurses.

The Department of Health is relying on roughly 1 200 home/community-based care (HCBC) projects, established across South Africa since 2001 in conjunction with the Department of Social Development, to deliver support services to communities, families and individuals affected by Aids. But most of these projects rely on community-based organisations, many of them manned by unskilled volunteers or low-paid workers who may provide a meal or a bed bath for a patient or simply hand out condoms in the community. None of them provide pain and symptom control, which can only be delivered only by a medical professional.

Worldwide, 80% to 90% of Aids patients have unrelieved pain at the end of life, said Joan Marston, advocacy officer and trainer with Hospice Palliative Care Association of South Africa (HPCA). The health department lists pain and symptom relief as a prescribed minimum benefit. Yet the department, anaemic from years of professional brain drain, appears to lack the capacity to deliver this benefit in regions where even primary healthcare clinics are few and far between.

The HPCA has facilities in more than 80 locations, ranging from a treatment and training complex in Houghton, Johannesburg, to Viljoenskroon Hospice in the Free State, with one professional nurse and one staff nurse. It is helping the health department to train non-professional caregivers in limited aspects of palliative care: the branch of medicine that specialises in relieving the suffering of patients who are terminal.

Marston said a professional nurse is a minimum requirement for administering medication for pain and symptom relief -- key to palliative care. When no professional nurse is available, it doesnt mean [the patients] are not getting good supportive care -- that is, meeting the emotional, psychosocial and spiritual needs that are also part of palliative care. But there is definitely a big gap in the complete palliative care package the HPCA prefers to offer, Marston added.

At present, a medical doctor is required to prescribe morphine. Oral morphine is not available at primary health clinics, even those that might have a professional nurse with the knowledge to administer it according to palliative care principles, says Marston. Theres a tremendous amount of advocacy to have oral morphine available at all the clinics and to allow nurses to prescribe it.

Dr Natalya Dinat, the project manager of Wits Palliative Care, in the department of family medicine at the University of the Witwatersrand, said there is still a law on the books, from the apartheid days when white doctors were pulled out of the homelands, that allows nurses to prescribe pain medication and this could be used to better effect. What it needs is the director general at provincial and national levels to allow a doctor to appoint nurses to prescribe. Dinat belongs to the National Advisory Group for Palliative Care, which is taking legal advice on the possibility of reactivating this law.

For the past three years, Wits Palliative Care has run its own home-based pilot project, called the Ndoro Model, out of Chris Hani Baragwanath hospital in Soweto. (Ndoro is Shona for to heal.) The pilot, funded with a R5,7-million donation from the Irish government, trained a team of five nurses, two drivers, a social worker and a pastor to bring palliative care into the homes of terminally ill patients.

It freed up much-needed bed space at Bara, while providing professional care at about one-fifth of the cost of a hospital stay. As a result, Bara has adopted the project for the next two to four years. Dinat pointed out that Baras cost savings arose from care provided by professionals, not volunteers. The one big failing of many home-based care projects is that they rely so much on volunteers . In Uganda, they say: Care and support without medication is careless support.

Palliative care brings relief to people dying of Aids and other terminal illnesses. Johannes Lesaawane counts himself one of the lucky ones: when he was diagnosed with lung cancer at Bara early this year, he was sent home. There he started receiving visits at least once a week from Wits Palliative Cares nurses -- sisters of mercy and mirth. As nursing supervisor Gertrude Monkoe said: Our work is depressing so we have to laugh to survive.

When Sophia Tsepetsi and Sophia Mokhosi first visited Lesaawane, he couldnt apply for a disability grant because he had an expired homeland identity book. He couldnt get a new identity book because he couldnt pay for the photos. So Tsepetsi brought R50 for the photos. Monkoe contributed groceries. This month Lesaawane applied for a disability grant. For now, if just for a little while, Lesaawane has his life back.

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