Destined to live and die in pain

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Sister Delores Cona and Staff Nurse Frieda Louw of the Nightingale Hospice in De Aar, Northern Cape, pay a home visit to an HIV patient in his late 30s. According to Cona, many patients in the community have difficulty accessing morphine and care-givers often have to fight with the health authorities to get pain treatment for their patients.

Wilma Stassen

Health-e News Service

Many ill South Africans live and die suffering from unnecessary and excruci- ating pain. It is estimated that almost all HIV patients (96 percent) and more than two in three (70 percent) of cancer patients experience severe pain during the course of their disease because they do not have access to cheap and effective pain medication.

Morphine is a safe, effective and cheap treatment for pain, yet many people don’t have access to it and, in fact, many South Africans die in agonising pain because it is not made available.

“Pain, pain, pain. The last two weeks of that man’s life was just pain from beginning to end,” recalls Sister Delores Cona, a nurse at the Nightingale Hospice in De Aar in the Northern Cape.

She had to stand by helplessly while a 49-year-old cancer patient died in unbearable pain because the local health services refused to give him more morphine.

“Doctors are scared to prescribe morphine and we have to put up a big fight to get it for our patients,” says Cona, a stout woman with a kind face who speaks Afrikaans with a charming Cape accent.

“And often when we get morphine, the dose isn’t enough to cover the pain for long.

“When a patient’s disease has progressed to a certain point of no return, some medical professionals are of the opinion that they have done all they can and then stop treatment, often because they don’t want to spend any more money or resources on a patient who they feel will die in a couple of days anyway,” says Cona.

“But we (at hospice) don’t work that way. The patient still needs everything in our view.

“It is not in our hands to say he will die now or die later.”

Proper pain management is an issue not only in the rural communities of SA, but all over the country, according to Dr Liz Gwyther, CEO of the Hospice Palliative Care Association of SA.

“Doctors have been taught that pain is a sign of something else and, in their quest to find and treat the cause, they often neglect to treat the pain,” says Gwyther, who also teaches palliative care at the University of Cape Town.

“They often don’t even assess the pain adequately.”

But there is hope for patients. A new law that will enable trained and registered nurses to prescribe scheduled medicine, including morphine, is expected to come into effect before the end of the year.

This will mean that patients can be prescribed morphine at clinics that operate without doctors – as most clinics in the country do.

Although this new legislation will put patients one step closer to accessing pain treatment, there are still more barriers to overcome.

In 2009, at least 200 000 South Africans died while suffering from moderate to severe pain, 111 307 of them without receiving any treatment for it.

This is according to the Global Access to Pain Relief Initiative, which calculated these figures using SA’s cancer and HIV/Aids death statistics. These numbers do not include traumatic injury, childbirth or other painful causes of death, and the numbers are possibly much higher. Even more alarming is that the number of cancer cases is estimated to double over the next 20 to 40 years and the greatest increase is expected in low and middle-income countries like ours.

By 2030, it is predicted that there will be 26 million new cancer cases and 17 million cancer deaths happening every year.

“People with cancer and HIV equate the illness with pain, and many do not realise that treatment for pain should be available to them,” says Gwyther.

In SA, morphine is on the essential drug lists for clinics, hospitals and specialists, which means that its use is widely recommended by the Department of Health and should be available in all health-care facilities in the country. However, stockouts occur regularly in hospitals and many clinics do not even stock it.

“When we ask why the clinic is not stocking morphine, the pharmacist will say the doctor is not prescribing it. And when we ask the doctor why he is not prescribing it, he will say it is because it isn’t kept in the clinic,” says Gwyther, revealing some of the rationalisations they have heard while investigating morphine shortages at clinics.

The stigma and fear of morphine among doctors and other health-care workers is so common that an informal quip was created to describe it: “opiophobia”.

Morphine is an opioid, a psychoactive chemical which has been used for centuries to treat acute pain.

Opioids have been found to be invaluable in palliative care to alleviate the severe, chronic, disabling pain of terminal conditions such as cancer and degenerative conditions such as rheumatoid arthritis.

Medical morphine is often associated with heroin, which is also a form of morphine and is highly addictive. However, various studies have shown that patients do not become addicted to morphine sulphate, which is used in SA for the treatment of pain.

According to Gwyther, morphine sulphate does not provide a feeling of euphoria.

“It gives you a kind of ‘out-of-it’ feeling that makes you feel stupid and sleepy – in fact, many people don’t like that aspect of it.”

But despite the scientific evidence, many doctors still do not prescribe morphine out of fear that patients may become addicted, Dr Milton Raff, president of Pain SA, said during a talk at the SA Medical Association’s conference last year.

He believes this is the result of inadequate education about pain management and opioid therapy.

Gwyther also says many SA doctors are insufficiently trained in pain management and assessment.

“When I was at university, I was taught that morphine is dangerous, but actually it is not a dangerous drug.

“Morphine is simple, easy to use, effective and inexpensive.”

The only time that morphine is dangerous is when it is given intravenously after an operation to someone who has never used it before. In these instances, a single large dose can lead to serious respiratory problems.

“And that is the only thing any doctor or nurse remembers about morphine: it is dangerous, it causes respiratory depression and people can stop breathing.”

Another barrier to accessing morphine is the form in which it is available to patients.

In SA, there are two types of oral morphine: a slow-acting tablet and powder, which has to be prepared by a pharmacist and converted into a liquid that can be taken through the mouth.

“There is no commercial preparation available, so different strength solutions have to be compounded by pharmacists on a per-patient basis,” explains Andy Gray, senior lecturer in pharmaceutical sciences at the University of Kwa-Zulu Natal.

“Morphine oral liquid preparations will therefore not be available where there is no pharmacy service, which means many clinics and some community health clinics.

“The long-acting tablets are available, but are expensive and therefore access is limited to specialist clinics and services.”

Current legislation also hampers patients’ access to morphine. At the moment, morphine can only be prescribed by a doctor or dentist, with the result that morphine is not available at any health facility that does not have a doctor – which means most clinics.

This creates problems for patients like those being nursed by Cona in De Aar.

The Northern Cape is vast and most of her patients live in rural areas and have to travel long distances to see a doctor for a prescription, often while they are sick and in a lot of pain.

Gray says: “The same legal restrictions prevent palliative care nurses from prescribing morphine to patients at home.

“Also, all schedule six prescriptions are valid for only one issue, limited to a maximum of 30 days’ supply, which creates another barrier for patients with ongoing needs for pain relief.”

There is, however, some light at the end of the tunnel. Revisions to the Nursing Act have resulted in new legislation that will allow specially trained and licensed nurses to prescribe opioids and other scheduled drugs.

Having nurses prescribe medicine fits into the government’s plan to shift tasks from doctors to nurses in order to fill the gap in our health resources.

“The government’s initiative to have nurses initiate the antiretroviral treatment has been a very good thing to piggy-back on,” says Gwyther.

Cona adds: “This will solve the problem (of access to pain medication) 100 percent.”

But she warns that many nurses, just like the doctors, are insufficiently trained in pain management and fear the use of morphine. “If their skills are sharpened, the problem will be solved. Solved 100 percent.”

Once the new legislation comes into effect, nurses will have to undergo training and be licensed to prescribe opioids and other medicines. Gwyther says: “This will be an additional qualification for nurses. It puts the safety net in place and, as nurses are more empowered, there will be more effective pain control.”

There is a problem, however. The Pharmacy Council’s current regulations specify that pharmacists can dispense only on a doctor or dentist’s prescription and not on one by a nurse. A request has been sent to the Minister of Health, Dr Aaron Motsoaledi, to direct the council to revise its regulations to allow pharmacists to dispense from nurses’ prescriptions.

“In South Africa we need to loosen these regulations so that nurses can prescribe,” says Gwyther. “The whole task-shifting concept is blocked because of an arcane law.”

The majority of patients with advanced cancer and HIV suffer pain. In the case of cancer, the pain is mostly caused by inflammation or pain in the bones.

With HIV/Aids, a patient can suffer various versions of pain, with some of the more common being peripheral neuropathy, meningitis, thrush in the mouth, oesophageal thrush and cramps from diarrhoea. Most medical practitioners treat patients only with antiretrovirals, which take several months to relieve symptoms such as pain.

“How long does a person have to live with pain until the antiretrovirals kick in and reduce all those problems?” asks Gwyther.

There is also an overlap between these two diseases as the development of certain cancers is encouraged by the absence of a fully functional immune system – as is the case in patients living with HIV.

Kaposi’s sarcoma, Hodgkin and non-Hodgkin lymphoma, cancer of the cervix and anal, lung and liver cancer are particularly common in the HIV-positive population.

In SA, as well as other countries on the continent, there is a tendency for cancer patients to seek medical attention for their condition only at a late stage, at which time the cancers are well advanced and are often incurable.

The reasons why patients act so late with cancer include a lack of health-care facilities or the costs of having to travel vast distances to get to a clinic, and a culture of attending traditional health practitioners (THP), who might not be trained to recognise the disease for what it is.

“A person with a breast lump is encouraged (by THP) to wait, because they believe evil spirits are released when the cancer bursts through the skin. Now for us that is stage four cancer,” says Gwyther. If a cancer is localised to a lump in the breast, that indicates stage one or two cancer, which is often curable.

“A cancer that bursts through the skin of the breast indicates stage four or five cancer, which is advanced and mostly incurable.”