Children Are Dying in Pain Because Our Palliative Care Is So Poor

• A World Health Organization audit confirms South Africa's failure to provide adequate child palliative care, with the report yet to be published.
• Over 800,000 children annually in South Africa suffer from life-limiting illnesses, yet the country has only five children's hospices.
• Children often die in severe pain due to an entrenched fear among medical staff regarding morphine administration and critical shortages of essential pain medications in rural areas.
• The Department of Health employs only one specialist in paediatric palliative care for ten hours a week, highlighting a severe lack of dedicated expertise.
• Beyond medication, non-pharmacological pain relief and multidisciplinary support teams are largely absent, leaving children's pain a significant blind spot in the healthcare system.

The tragic reality is that children in South Africa are frequently denied adequate pain relief, even in their final moments, due to a combination of systemic failures and deeply ingrained misconceptions.

A recent audit by the World Health Organization (WHO) has confirmed significant deficiencies in South Africa's provision of palliative care, particularly for children. This yet-to-be-published imPACT Review of cancer services within the public health system indicates a widespread failure to adequately manage pain and suffering. The consequences of this systemic neglect are stark, as illustrated by tragic accounts from the front lines of healthcare.

In one harrowing instance, a social worker, Taryn Bell, recounted the death of a baby with cancer in Ingwavuma, a remote area of KwaZulu-Natal. Despite efforts to secure morphine, the medication was unavailable, and the infant died in excruciating pain. Bell, who co-runs two of the country's five children's hospices—Butterfly Palliative Home in Ingwavuma and another in Empangeni—has witnessed firsthand the devastating impact of inadequate pain management.

Another case involved a one-month-old baby suffering from congenital heart disease. A paediatrician had prescribed low-dose oral morphine, with the mother's consent, but the local hospital lacked the supply. Bell managed to obtain the medication from Empangeni, located 300 kilometers away. However, the hospital ward sister refused to administer the drug, a decision supported by the medical manager, leading to the baby's agonizing death. This incident, Bell noted, stemmed from a deep-seated discomfort among staff regarding morphine administration to infants, highlighting a critical gap in medical understanding and practice.

A pervasive belief within the South African health system suggests that young children cannot tolerate morphine, contributing to its underutilization. Dr. Julia Ambler, the deputy director and co-founder of Umduduzi Children's Hospice in Durban and the Department of Health's sole specialist in paediatric palliative care (working only ten hours a week), acknowledges a gradual shift in attitudes among medical students she teaches. However, she frequently receives calls from doctors inquiring about a 'maximum dose' for morphine, a concept she clarifies does not exist. Ambler emphasizes that when titrated slowly and carefully according to the patient's pain level, morphine is a very safe drug, dispelling the common fear among medical professionals that it will cause respiratory arrest.

Beyond misconceptions, practical access to essential medications remains a significant hurdle. While liquid morphine is available in South Africa, its distribution often fails to reach rural peripheries where it is desperately needed. Furthermore, drugs crucial for nerve pain, such as Pregabalin and Gabapentin, are listed on the essential medicines schedule but are not provided by the KwaZulu-Natal health department due to cost constraints. This forces caregivers like Bell to purchase these medications privately, without any state reimbursement, leaving children with limited options for managing severe pain caused by conditions like tumors.

Children represent the most overlooked demographic when it comes to palliative care services in South Africa. Research conducted by UNICEF and the International Children's Palliative Care Network reveals that over 800,000 children in the country live with life-limiting illnesses each year. Despite this immense need, the nation has only five children's hospices, two of which are managed by Taryn Bell and her doctor husband.

The scope of neglect extends beyond pharmacological interventions. Dr. Ambler points out that many non-drug pain relief strategies, such as massage, hot and cold therapy, and distraction techniques, could significantly improve a dying child's quality of life. However, these holistic approaches are largely unavailable outside a handful of urban hospitals. In higher-income countries, multidisciplinary teams comprising physiotherapists, occupational therapists, and social workers collaborate to support these children. In contrast, South African healthcare often relies solely on doctors, whose primary focus is typically prescribing medication, leaving a critical void in comprehensive care. The tragic reality is that children in South Africa are frequently denied adequate pain relief, even in their final moments, due to a combination of systemic failures and deeply ingrained misconceptions.

Source: Reporting based on recent investigations.