Palliative care: pain and symptom control being ignored in South Africa due to lack of training, legal barriers

This article originally appeared in HIV & AIDS treatment in practice, an email newsletter for healthcare workers and community-based organisations in resource-limited settings published by NAM between 2003 and 2014.
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Chris Hani Baragwanath Hospital under severe strain

A case in point is Chris Hani Baragwanath Hospital, a large tertiary teaching hospital serving a population of 1.2 million in and around Soweto. It is one of the biggest hospitals in the world with 2900 active beds and over 5700 staff who work there.

“It’s always 110% full,” said Loveday Penn-Kekana, a medical anthropologist working at the Centre for Health Policy at the University of the Witwatersrand in Johannesburg, The Centre for Health Policy was asked by the Provincial Department of Health to look at the impact of HIV on the public healthcare system in Gauteng. This included Baragwanath Hospital, where they found that 43.9% of the adult patients and 31.5% of the paediatric admissions were HIV positive — over 77% of these had CD4 cell counts of less than 200.

“There are very high levels of HIV and non-HIV related mortality at the medical wards in Baragwanath Hospital, with a 21% mortality; a very burnt out and demotivated staff and an average of 150 medical admissions per day,” said Penn-Kekana. “It’s quite depressing really — it used to be 80 per day — that used to be a record. And every day they are breaking the record of the number of admissions they have to make to the medical wards.”

As a result, the hospital is under severe strain, with shortages of staff, and a breakdown in management structures. Although Penn-Kekana noted there are pockets of excellent care at the hospital, there’s widespread recognition that the quality of care being provided within many of the services is poor.

Overwhelming demands lead to rationing of care

“It is a bit of a pot luck whether you get noticed,” said Penn-Kekana, who conducted a further study to see who gets good care and who doesn’t at the hospital and how care is rationed in the context of budget cuts and overwhelming demand.  The study involved over 800 hours of observation over a 2-month period in the medical wards and in casualty using a mixed team of doctors, public health specialists, and anthropologists, as well as 40 in-depth interviews with medical and managerial staff at the hospital.

She and her colleagues identified a variety of factors that influenced whether people got care. For instance, access to care often depended on whether a person had an illness that interests a senior clinician in the hospital or whether the person happened to get a sympathetic doctor when they arrived. Also, the time of day when a person arrives at the hospital was important. “The hospital is trying to limit the number of medical admissions to 150, so if you come at 16h00 on that day, there’d be 145 patients already admitted, and they know that the beds are full. You’ve got to be really, really, really sick to get admitted and even then you probably won’t!”

Unfortunately, the patient’s personal characteristics also affected whether or not they got care.

“There are issues around deserving patients, people who are defaulters, who haven’t taken their drugs, people who are drunk when admitted,” she said. Foreigners are often seen as not deserving access to care by medical staff especially if they don’t speak the language.

“We have 11 official languages and loads more languages in South Africa. In Soweto township, there are some quite common languages and if you don’t speak one of those languages and the nurses or doctors can’t talk to you or can’t understand you, that seems to really impact on the quality of care. Also, patients who got admitted who were confused and the doctors who tried to talk to them couldn’t get a history: They often just didn’t get good quality of care.”

In contrast, ‘compliant’ patients, who were polite and knew a bit about their history, had had HIV tests and came from nice families, often did get good quality of care.

“One of the things we also looked at — Baragwanath Hospital has very horrible blankets. But if family visits you and they bring you a blanket, it’s a sign that you are sort of cared for. The nurses (are sort of), “Ooh NO, that person’s got family, that person’s got some sort of social worth because somebody bothered to bring them a blanket. But if you just had the horrible grey, small bio-blanket - it’s sort of like you didn’t have social status and that seems to impact on your care.”

Also longer-term patients or ‘lodgers’ often receive poor quality care.

“What happens is that the wards are so full that patients often got sent out to other wards where the doctors that are overseeing their care don’t work, And Baragwanath is huge so a lot just get lost. They get moved about; they get lost; they don’t get their drugs; some of them don’t even get their food,” she said.

“Finding beds for patients and then emptying the beds for the next huge influx of patients for care has become a priority at the hospital. It’s becomes one of the major concerns of the nurse managers – distracting them from other matters. And if you look at the interns that provide most of the medical care, that’s how they are sort of evaluated, “how fast can you get the patient [out], how fast can you empty those beds?”

How people with HIV and AIDS are cared for in the wards

Access to care for people with HIV seemed to be in a state of transition. Previously, HIV was stigmatised and there was a feeling that people couldn’t be treated.

“I think that’s changed, partly because so many of our patients have HIV,” she said. “You cannot stigmatise half of your patients. With the coming of antiretrovirals and massive treatment programmes, that’s affected how people think about HIV.”

However, partly because HIV and AIDS services are delivered by well-funded but separate vertical programmes, people with HIV in the medical wards sometimes fall through the cracks.


“In the medical wards they feel ‘I don’t really deal with it because it’s somebody else’s problem,’ ” said Penn-Kekana. Some doctors complained that AIDS had made medicine ‘boring’ nowadays.

Access to palliative care at Baragwanath

In a context where the hospital has trouble delivering even basic care, quality palliative care services can be hard to come by — and this is despite the fact that the hospital is the clinical home to the acclaimed Wits Palliative Care.

“Every ward you go to there’s a poster that says, ‘Please call us, we provide services.’ But it’s not used as much as it should be,” said Penn-Kekana. Again, it was sort of a pot luck whether patients got referrals depending partly on whether the doctor seeing the patient had a relationship with the palliative care team — and many only received palliative care after they were ‘found’ by the Wits palliative care team during ward rounds.

HIV/AIDS patients usually don’t receive palliative care, according to Penn-Kekana, because HIV/AIDS care is not integrated

“There are concerns, i.e., are they dying or aren’t they dying? You know, maybe they’ve got ARV’s, which are supplied by somebody else - and so that’s the confusion,” she said.

“There’s also a widespread belief among healthcare workers that patients are abusing the system or themselves. You know, “They shouldn’t really be coming to this hospital, they shouldn’t be having unprotected sex, they shouldn’t really still be getting HIV.”

However, the doctors and nurses who were more engaged with their patients, who had had palliative care training and who managed certain conditions, such as cancer, were much more likely to contact the palliative care team.

But in general the staff are burnt out, overworked and poorly managed, and many nurses don’t feel empowered to do anything.

“There’s a breakdown in relationship between doctors and nurses - in the medical wards at Baragwanath Hospital doctors and nurses no longer do ward rounds together. The doctors write notes on the patient’s records and if the patients are lucky the nurses go and read it. And patients just don’t matter most of the time. People don’t talk to the patients. You go on these ward rounds with consultants, and they see 50 patients but probably only say a few words to each of them. Patient care is simply not how medical staff and nursing staff are evaluated,” she concluded.

Shifting care to the primary health level without empowering nurses

Difficulty accessing quality care at a large tertiary facility is one of the reasons for shifting more care delivery to the primary healthcare level. But South Africa is attempting to do this without giving nurses some key tools to provide care — such as the ability to provide many essential medicines, including opioids for symptom and pain relief.

According to a recent report, many countries in sub-Saharan Africa need to make changes to their national formulary, or have problems keeping the local facilities adequately stocked (see, http://www.aidsmap.com/en/news/B9CA648A-1727-4168-B50E-872612DAC4A3.asp). But according to a survey presented at the APCA meeting, Dr Janet Stanford, CEO of Hospice Knysna, with some exceptions (such as children’s formulations and pack sizes suitable for patients undergoing chronic care), pharmacies within her subdistrict are kept fairly well stocked with palliative care medications and other essential medicines. However, there is one significant health system problem that is a barrier to access.

“Few drugs can be prescribed by clinical nurses practitioners (CNPs), effectively limiting access, and the list which a CNP could prescribe was limited to non-opioid analgesics,” said Dr Stanford. “Obviously a huge issue is the fact that most people in rural areas only get to see nurses, and don’t often get to see the doctor, so the drugs which a clinical nurse practitioner can provide make a big difference in access to care.”

But this poses particular challenges in palliative care, according to Zodwa Sithole, who started off as a palliative care nurse but has now become the advocacy coordinator working for the Hospice and Palliative Care Association (HPCA) of South Africa.

“In South Africa at the moment nurses are not allowed to carry, administer and prescribe morphine. That is the biggest challenge we are having as an organisation. 99% of our patients are home-based care patients. So our nurses, they go out there and it’s so frustrating because they can’t prescribe morphine,” she said.

“And doctors won’t always prescribe on our recommendation without seeing the patient for themselves. And those patients are at home; they are poor; they don’t have money to hire a taxi to the hospital and again this must be covered either by the patient or by the hospice - it is such a problem. Doctors who are not palliative-trained often fall prey to the common misconceptions about morphine, and often prescribe it incorrectly or not at all,” she said.

Sithole and colleagues from Wits Palliative Care have been meeting regularly with the national Department of Health and members of South Africa’s Parliament to create a deeper awareness of palliative care and to try to influence policy to allow trained nurses to prescribe.

Eventually, the government may not be able to resist, according to Dr Natalya Dinat, who is Director of Wits Palliative Care. “In South Africa, we have a constitution that allows for health, dignity and access to health. And we are now working with a legal team to look at using the law as an advocacy tool to force changes in regulations and changes in legislation that will allow for nurse prescribing. We actually got a legal opinion which shows that there are options for the government to facilitate this very, very quickly and very simply.”

Increasing referrals to palliative care in the rest of the country

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.

References

Penn-Kekana L. Lack of palliative care in a tertiary teaching hospital in South Africa. 2nd APCA Palliative Care Conference, Nairobi, Kenya, Ab0295 2007.

Stanford J. A survey of the availability of palliative care drugs in Knysna health sub-district. 2nd APCA Palliative Care Conference, Nairobi, Kenya, Ab062, 2007.

Sithole Z. Strategies to meet the demand for palliative care in South Africa due to the HIV epidemic. 2nd APCA Palliative Care Conference, Nairobi, Kenya, Ab0147, 2007.

Ens C. Referral to hospices in the Western Cape province of South Africa: themes from a qualitative study of health care professionals. . 2nd APCA Palliative Care Conference, Nairobi, Kenya, ab0101, 2007.