While South Africa is not necessarily representative of lesser-resourced countries — for instance, it spends a larger amount than most on the health sector, and 85% of the population uses the public health sector regularly. However, over-burdened health systems where the tertiary hospitals are filled beyond capacity with people with HIV are common throughout most of the sub-Saharan African region.
In South Africa, the need for palliative care among people with HIV is dramatic — and indeed, the numbers of people with HIV accessing palliative care services in South Africa since 2000 has increased 9-fold.
Box: Increased numbers of HIV/AIDS patients has led to increased numbers of patients accessing palliative care from the Hospice and Palliative Care Association of South Africa:
Year: |
HIV Patients: |
All Patients: |
2000-01 |
5893 |
14780 |
2001-02 |
10762 |
19218 |
2002-03 |
13499 |
24567 |
2003-04 |
15004 |
27441 |
2004-05 |
21247 |
34200 |
2005-06 |
38381 |
54141 |
2006-07 |
52807 |
70133 |
But this is a drop in the bucket considering the need.
5.5 million people in South Africa are infected with HIV and 350,000 of them die each year. One of the reasons more of these people aren’t accessing palliative care services is the misperception that it only pertains to ‘end-of-life care’ or pain management alone.
But organisations that provide palliative care, with its emphasis on comprehensive and holistic care and support over the entire trajectory of disease, should be a natural partner for HIV programmes that are struggling to find ways of retaining people until they are in need of ART. While palliative care organisation do not have an exclusive claim to comprehensive and holistic care, they should have considerable expertise in that field which could assist any clinical team to improve the quality of life of someone with HIV.
Another factor that is limiting uptake of palliative care among people with HIV is ART, according to Sister Sithole: “People say, “why palliative care when patients are on ARVs now?” But those patients still need palliative care because they do experience pain in their lives. They also need holistic care and support.”
In addition, many people with HIV only present once they have late stage disease and severe pain that needs to be managed. ART comes too late for many, who die anyway. These people do need end of life care and their families may benefit from bereavement support. Over 1.4 million children have been left without parents, which Sister Sithole says has led HPCA to develop a specific portfolio on paediatric and palliative care.
But there continue to be relatively low rates of referral. Nationwide, as at Baragwanath, doctor’s attitudes towards palliative care are often a large part of the problem.
According to one poster presented at the meeting that looked at referrals in the Western Cape, doctors often resist making a referral until they believe the patient is dying — or until the patient’s Medical Aid runs out (Ens).
“In my humble opinion, palliative care is right at the bottom of the rank [for doctors] at the moment for treating of patients” said one doctor who was interviewed. Even if doctors were likely to agree to the referral, they are often too busy attending to other patients, and clinic nurses or social workers reporting having trouble getting them to fill out the necessary forms for the referrals.
But the doctors themselves are often clueless when it comes to pain management.
“Sometimes you’ll see that the patient is getting too much morphine,” said Sister Sithole. “I was working in one of the hospices in Johannesburg. The private hospital would phone us and say, ‘please sister, come and assess the patient. There is a patient who needs to go to hospice.’ So, one day I went to this private hospital and when I arrived there I thought this patient was dying. I was very uncomfortable for the patient to come to hospice because I thought this patient was going to die on the way. So, I looked at the dosage of morphine the patient was getting. It was too much. Fortunately when I was there, that doctor came. So I introduced myself and [politely asked if he would] decrease the amount of morphine so I could come again after two days to assess whether the patient needed to be admitted to hospice. So when I went there after two days the patient was sitting and talking. So the doctors, they do need training about palliative care and also on how to prescribe morphine.”
Penn-Kekana agreed that alongside offering specialist palliative care services, key elements of the palliative care approach need to be integrated into the training of all doctors and all nurses. But she stressed that palliative care had to compete against a number of other priorities.
“We have to be realistic. What we’re really struggling with now is an overstretched system on which huge demands are being placed. So I think also, if you really want to do palliative care in the public health system, you need to link to general attempts to improve the public health system as a whole,” she said.