Needless pain in African children: an affront to human dignity
- Correspondence to Professor Elizabeth Molyneux, Paediatric Department, College of Medicine, Queen Elizabeth Central Hospital, Blantyre 3, Malawi;
- Accepted 10 September 2012
- Published Online First 16 October 2012
In Africa the HIV epidemic laid bare the huge need for palliative care and pain control. Families and health workers were faced with looking after the sick in homes and hospitals that were ill prepared and ill equipped to manage chronic symptoms, especially pain. Most clinicians and nurses had little experience or training in palliative care or the use of analgesia. Oral morphine was seldom available, intramuscular pethidine pro re nata (prn) was used, mainly post operatively, and many children suffered silently and stoically. Health workers were demoralised by the inability to relieve suffering.
Local individuals, to their credit, were determined to change this unsatisfactory situation. They provided care and symptom control for these people and most importantly lobbied at every level—internationally, regionally and nationally—for better, stronger analgesics, especially to make oral morphine available.1 To provide adequate analgesia appropriate drugs have to be available, affordable, accessible and properly and rationally used. There needs to be a reliable and easy way to measure the severity of pain so that requirements and efficacy can be adequately assessed.
Opioid availability is covered by the protocols for the Single Convention on Narcotic Drugs of 1961 and 1972.2 These protocols focus on preventing misuse, but at the expense of medical access. In 2005 the United Nations Economic and Social Council (resolution 2005/25) and the World Health Assembly (resolution WHA 58.22) called on countries and international bodies such as WHO and the International Narcotics Control Board, to remove barriers to the medical use of such analgesics.3 These barriers not only raise legal and policy issues, but also present educational obstacles affecting policy-makers, clinicians, patients and the community at all levels. African countries are among the lowest users of morphine for pain relief throughout the world.4 Additionally, in 29 African countries morphine and other opioids are not available legally.5 WHO developed guidelines on the policy aspects of improving access and the availability of these drugs for medical and scientific purposes while simultaneously preventing abuse, diversion and trafficking.6 WHO also included oral and parenteral morphine on the Essential Medicines List for Children for basic health services.7
The Ugandan government, in close cooperation with Hospice Uganda, led the way in changing policy to allow the importation and widespread distribution of low cost oral morphine.1 In 2009 only seven of Kenya's 200 public hospitals had oral morphine.8 Palliative care projects try to make strong analgesics available, but only 17% (9 of 53) of the countries on the continent have palliative care programmes specifically for children.9 Uganda and South Africa have wide internal palliative care coverage, but many other states, such as Tanzania, Kenya, Zimbabwe, Nigeria, Egypt and Rwanda, are still building capacity in palliative care. In most countries the availability of drugs and expertise for pain control is patchy.10
Affordability and accessibility
Government legislation can minimise the overheads of opioid provision. Kenya had a 16% tax on morphine imports making it expensive for the user,8 but this tax was removed in 2011.11 Most palliative care projects provide free or low cost analgesia, but to get to those clinics or to a particular hospital to receive free morphine can be expensive. A child may receive adequate analgesia at a referral hospital, but the same medication may be unavailable nearer home. The cost and difficulty of travel may prove too much of a burden for the family, and parents have said that cost has denied their child adequate pain control.8
National policies are needed to make oral morphine available at every public hospital, preferably free of charge, and also at smaller facilities closer to where people live.
Rational prescribing and use of strong analgesia
There is a lot of misunderstanding about the use of opioids in medical care. Some nurses and clinicians are reluctant to give morphine to children for fear of the side effects or that they will become addicted.12 Opioids are only prescribed when a child is in severe pain, and then often in inadequate doses. WHO has a saying that analgesia should be given “by the clock, by mouth and by the ladder”.13 The ladder is the WHO guide to incremental increases in analgesia according to need.
Training courses on pain control have been written and run by national palliative care associations in several countries, but many district hospitals and rural centres have not been reached. In Africa traditional healers represent the first line of care for 70% of the population and training traditional healers can bring pain relief to children in the community. Community volunteers or informal carers can also be trained to identify children in need of pain control and refer them to an institution.14 Hospice Uganda together with the University of Uganda in Kampala run distance-learning diploma and masters’ courses in palliative care.1 The African Palliative Care Association was established in 2002 and now has a strong membership of many national associations and affiliated non-governmental organisation projects.15 Malawi was one of the first countries to have a service dedicated to children, but paediatric palliative care lags behind that of adults.16
The need to prevent and treat chronic pain opened the door to better awareness and the need for assessment and management of all types of pain.
Children are often expected to be brave and tears are seen as a failure.17 ,18 Children have been brought into the resuscitation room in Blantyre, Malawi who had acute peritonitis and an abdomen full of pus, but who scarcely flinched when examined. There is an expectation that broken bones and soft tissue injuries will hurt and that the pain should be borne with fortitude. Pain may even be seen as good or as part of the process of healing.19 ,20 Parents may be too intimidated by health carers to ask for help, fearing that their concern will be seen as complaining.21 WHO estimates that 80%—about 5.7 billion—of people worldwide do not have proper pain control and that pain is routinely under-rated.22
Formal assessments of children's need for analgesia are uncommon in African hospitals. When asked, a nurse is quoted as saying “if we pass by and notice it, we treat it”.21 There are many pain scores but which one is the best for rural Africa? An assessment needs to be simple, quick and easy to do and the Faces Pain Scale-Revised (FPS-R) that can be used over a wide age range (4–18 years) is an example of a suitable instrument.23 Carers need to be trained in using it.
Madadi et al24 report on their systematic search for peer reviewed observational studies of the use of analgesia in children less than 12 years of age in Africa over the 20 years from 1990 to 2010. Only 34 studies involving 7772 children were found, 83% in the last decade. The studies come from 12 countries with two-thirds from Nigeria or South Africa. Post-operative pain was identified, but more often the cause was not given. Three-quarters of the drugs used were paracetamol and ibuprofen and only 0.25% (20 children) received morphine. Overall 8.6% received an opioid. Some potentially dangerous drugs were used with serious adverse events (445 in 7772 children, 0.6%) including 17 deaths in children in the reported studies. It is difficult to know how much this reflects publication bias or real trouble on the ground. Nor can we assume that publications reflect the real situation. It has been said that there is a dearth of evidence but a wealth of experience.25
There is still a long way to go. Forty-one per cent of Africans are under 15 years of age, and these young people are vulnerable to infections including HIV and a rising incidence of cancers. Eighty per cent of children with cancer live in poorly resourced settings.26 Urbanisation and more vehicles on the roads have led to a dramatic rise in road traffic accidents and trauma, with all their attendant pain, and it has been predicted that these events will outstrip infectious diseases such as malaria, pneumonia and tuberculosis, as causes of death on the continent by 2030.27
Successes are to be applauded and the last decade has brought improvements. But as Madadi et al show us,24 there is no place for complacency. Advocacy, commitment and care for children in pain are needed as much as they have ever been. The difference now is that we are aware of this shameful deficiency in healthcare provision, and have the capacity to do something about it.
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.