In March an elderly woman with advanced cancer in the pelvis travelled from the Eastern Cape to the Western Cape in the hope that she may find better medical care. The discharge note she carried with her stated that she was on morphine, but she never received it.
When she arrived at a clinic with her daughter, she was told to return at the end of March. Again, she was not given any morphine, despite clearly being in agony.
Dr Margie Venter, an oncologist and palliative care doctor, heard of the woman via the network of the Association of Palliative Care Practitioners of South Africa (it is Venter who recounted the woman’s story). She agreed to see the woman and her daughter. The woman was frail, weak, and already bedridden. Venter gave her a morphine injection and a script for more morphine. When they arrived at a pharmacy, she was told the pharmacy does not issue morphine.
No support was offered to help the woman get morphine elsewhere. Eventually, Venter referred her to a hospice where she was admitted. She died five days later.
Inequalities in pain relief
Though it is hard to find accurate numbers, it seems clear that many people in South Africa unnecessarily suffer from chronic pain due to system failures, poor access to expensive medicines, and lack of sufficient medical education on pain management. To make matters worse even though morphine is cheap and easy to administer those who do need palliative care, such as the woman mentioned above, often do not receive it.
A landmark Lancet Commission on Palliative Care and Pain Relief published in 2018, found that about 25.5 million out of 56.2 million people who died in 2015 experienced serious health-related suffering, and another 35.5 million experienced serious health-related suffering due to life-threatening and life-limiting conditions. “A disproportionate number (more than 80%) of these 61 million individuals live in low-income and middle-income countries (LMICs) with severely limited access to any palliative care, even oral morphine for pain relief,” the report reads.
Some of the numbers in the report are staggering.
“Of the 298 million metric tonnes of morphine-equivalent opioids distributed in the world each year, only 0.1 metric tonnes are distributed to low-income countries and 50% of the global population (3.6 billion people who reside in the poorest countries) receive less than 1% of the morphine distributed worldwide.”
Morphine in South Africa
While there is more to pain management than opioids like morphine, the complexities regarding morphine, particularly as used by people with cancer, are informative.
Venter explains that pain in oncology can be due to the cancer itself or due to the treatment. Often the latter can be controlled with less strong medication, such as paracetamol and non-steroidal anti-inflammatories. With more advanced illness, the patients’ pain is definitely an issue, she says, adding that typically it is so severe that morphine is needed.
As also pointed out in the Lancet Commission, price is not an issue. Morphine is cheap, says Venter, with a typical month’s supply (500ml of morphine; 20mg per 5ml) costing the state about R105.
Venter describes access to opioids as dismal, especially in rural areas where clinics often do not have morphine in stock and where it may be harder to get a script.
One reason for poor access, she says, is a lack of training on when and how to prescribe opioids.
“Even medical colleagues are concerned about the side effects, especially about the risk of depressed breathing. But this is a side effect we hardly ever see if you prescribe it correctly by starting with a low dose and monitor the patient. The other side effects such as nausea and constipation are manageable,” she says.
The most common way to supply a person who is at home with morphine is an oral syrup. “It comes in powder form and the pharmacist needs to be able to mix it to the correct concentration,” Venter explains. “One takes it every four hours. The advantage is that towards end-of-life people sometimes struggle to swallow a tablet and a syrup is easier. If a person is unable to swallow at all, morphine can be given through a needle under the skin every four hours or through a small pump, which releases it over 24 hours. The slow-release tablet is given twice a day, but it is not available at clinics, only at tertiary hospitals.”
One factor limiting access to morphine in South Africa is the fact that most nurses can’t prescribe it.
“We have been campaigning for years that nurses should be able to prescribe morphine,” says Venter. “[I]n the areas where hospices are functioning the sisters are the ones who take care of the patients but [they] need to run around for a script. The sisters are the ones with the skill.”
The restrictions have to do both with how pain medicines are regulated and with rules on which types of medicines nurses may prescribe.
Andy Gray, senior lecturer in pharmacology at the University of KwaZulu-Natal, explains that pain medications, like any other drugs, are assessed by the South African Health Products Regulatory Authority (SAHPRA) for safety, efficacy, and quality. There are, of course, challenges with pain efficacy studies, as pain is a subjective endpoint that cannot be directly measured.
Scheduling of pain medication is done on the same basis as all medicines – looking specifically at the safety elements. Pain medications are listed in all of the Schedules, from 0 to 6. The lowest schedules are the safest – small quantities of paracetamol, for instance, are S0. The prescription-only schedules are S3 to S6, with the strictest controls on S5 and S6. Morphine is S6, for instance. All injections are at least S3 but many are higher schedule, such as tramadol (S5).
When it comes to what nurses may or may not prescribe Gray says we have a major problem. “Although the Medicines Act allows for listing of substances in S1-S6 for nurses, the process has to start with the South African Nursing Council establishing specialist registers (in terms of s56 of the Nursing Act) and then engaging with SAHPRA to list specific substances.”
“Primary healthcare nurses currently operate in terms of an exception (s56 (6) permit), for which a legacy set of regulations from 1984 limit their access to a maximum of S4. They, therefore, cannot prescribe pain medication in S5 and S6 at present. One exception is midwives who have access to S5 and S6 substances but only for obstetric cases,” he says.
Of course not everyone has the kind of pain that requires high-schedule medicines such as morphine. Backache, headaches, joint pain, the varieties of pain are many – some are short-lived, others just won’t go away.
Professor Romy Parker, director of the Pain Team, in the department anaesthesia and perioperative medicine at the University of Cape Town and Groote Schuur Hospital, says one in five people in South Africa are living with chronic pain.
However, not all of these people will seek help. It is only those with high impact chronic pain, the type that affects one’s life, that typically go in search of medical help.
The most prevalent chronic pain she says relates to the musculoskeletal system which includes bones, muscles, tendons, ligaments, and soft tissues. Lower back pain is by far the most common, followed by shoulder and neck pain.
Dr Milton Raff, an anaesthesiologist and expert in pain management, says chronic pain is “very, very poorly managed” in the public sector in South Africa. For example, he explains, if a patient presents at a health facility with back pain, they will receive basic pain killers, and, if they are lucky, an anti-inflammatory and an X-ray. If the pain is very bad, they will eventually see an orthopaedic surgeon and only the lucky few will be referred to the few pain centres at academic hospitals.
When asked about availability of pain medicines in the public sector, Raff says, “it depends on which province and at which hospital you are [and if] the medications which are on the Essential Medication List [were] put out on tender and were they made available. Morphine, paracetamol, and codeine are on the Essential Medication List. Many of the more ‘modern state-of-the-art drugs’ are not available despite local treatment guidelines.”
In coming to terms with this complex situation, Raff is concerned about the level of education on pain management that healthcare workers are receiving.
“You need to be trained to recognise the cause of the pain in order to treat and manage it. There is basically no continuing teaching of pain care and management. Fourth-year medical students are now receiving some pain instruction but only for a short while. Trainee specialists undergo very little education in pain management,” he says.
“We need to educate and educate some more because if you don’t realise what a patient is suffering from, you can’t treat them. For example, anti-inflammatories or paracetamol will not help for shingles or other neuralgias at all. It needs specific medications such as anti-epileptics,” he says.
While chronic pain related to the musculoskeletal system is common in South Africa, we also have a significant burden of neuropathic pain.
“We have an epidemic of type 2 diabetes with a growing burden of peripheral neuropathy, which is a result of damage to the nerves located outside of the brain and spinal cord. It is a challenge to treat,” says Parker. “People living with HIV also suffer from chronic pain, but this burden of pain has been reduced as treatment for HIV is started much earlier. People living with HIV can also suffer from peripheral neuropathy.”
“Here is the problem, the medicines which are available internationally for managing chronic pain are actually pretty disappointing,” says Parker.
She explains that the first-line of treatment for neuropathic pain is tricyclic antidepressants and says these medicines are still the most effective. If you don’t get a response, you move on to selective serotonin noradrenaline reuptake inhibitors (SNRIs). The next option, she says, is a gabapentinoid which is a class of medications called anticonvulsants. These drugs work on the central nervous system, targeting the overactivity of the nerves in the spinal cord.
However, if you look at the “numbers needed to treat”, she says it is not encouraging. The medicines used to treat neuropathic pain typically only bring relief to around one in eight to one in 16 people.
Parker points out that barriers to accessing these medicine are not so much about cost anymore – tricyclic antidepressants are cheap, access to serotonin reuptake inhibitors (SNRIs) is improving, and while gabapentinoids used to be expensive the introduction of generics is bringing prices down.
But, as with morphine, there are other issues. Parker points out that some of these drugs need to be initiated by a specialist. Patients need to go to large urban academic hospitals and only then can they go back to their local clinics. Often the clinic doesn’t stock the specific medicine.
“These gatekeeping issues are less about cost and more about safety with initiating patients on quite complex medicines treatments,” she says. “But then there are system problems with the availability. Depending in what province you are, there may be huge logistical differences.”
Gate-keeping for the public good?
One reason for limited access to pain medicines is the potential for addiction and overdose. While many people who need opioids in poor countries can’t get them, they have arguably been made too easily available in some countries- as with the “opioid epidemic” in the United States. According to the United States Department of Health and Human Services, opioid overdoses accounted for over 42 000 deaths in that country in 2016.
Raff says South Africa does not have the opioid problems of the United States or Canada because of several checkpoints that are in place to prevent incorrect prescribing, but there is certainly abuse of codeine in South Africa. He explains that one of the side effects of this type of analgesic use is that it too causes dependence. Combination analgesic abuse is also the most common cause of chronic headaches in South Africa, he says, more frequently so than migraine headaches.
“The opioids that we worry about, like in the rest of the world, are only available in the public sector for end-of-life care,” Parker says. “ In our clinic, we have had one patient on it and we had to write a very long motivation for it. Tramadol has a lower risk for overuse. The risk is that people receive it over and over without full engagement with rehabilitation.” Parker says these patients then have it at home and it may be given to other people in the home – an event called diversion.
Knowing when to take pain seriously
While appropriate access to pain medicines is clearly important, good pain management is about much more than just giving people pills.
“If you treat someone with chronic pain, also chronic cancer pain, it is about the human being,” says Parker. “The first tool is about education and empowerment – to make sure the person really understands what is going on. The key thing about chronic pain is to understand when is my pain telling me something dangerous is going on and when is it just an alarm bell going off when nothing happened.”
“The pain system in your body is a sophisticated alarm system and it even goes off when someone dodgy is looking into the window. It is designed to get me to do something to prevent damage, but that means the alarm can go off when it is not that dangerous. Just like the house alarm which goes off when the wind is blowing – it gives you a fright but there is no danger,” she explains.
She says they educate their patients to recognise the “dangerous pain” and the “normal pain”. It is possible to have pain when there is “no danger”. So, take a moment to evaluate the pain and decide on a course of action, she says. “The more you tune into listening to the brain’s alarm, the louder it gets. I heard the message but with confidence know it is safe. That allows my brain to release a lot of pain-killing chemicals. [An] endogenous opioid is 100 times stronger than oral morphine.”
Included in their treatment are cognitive behavioural therapy, psychiatry, physiotherapy, and occupational therapy. The drugs are not there to fix the problem but to help turn the volume down, she says. In the public sector, these centres are at Groot Schuur, Tygerberg, Grey’s Hospital, Albert Luthuli, Johannesburg General, and Universitas Hospital. There are also teams in the private sector.
How is pain assessed?
At the Pain Centre at Groote Schuur, a pain inventory is taken by asking specific questions about pain severity and how it affects the sufferer as well as indicating on a body chart where the pain is. A full physical examination is done and the nervous system is assessed. However, there is an important aspect to consider – is this pain a symptom of something else or is this pain a disease on its own?
In the ICD-11, pain is recognised as a disease on its own – a primary pain disorder. The ICD-11 is the eleventh revision of the International Classification of Diseases and will replace the ICD-10 as the global standard for coding health information and causes of death.
This article was first published on Spotlight.