In this article, Emmanuel Kamonyo Sibomana, Desia Colgan & Nicky GunnClark tell the story of Kivumbi’s (not his real name) avoidable suffering and subsequent death, challenging us to work to create a society that provides equal justice and protection for children, whatever their vulnerability and wherever they may be in the world.
No child deserves to suffer!
At age 12 Kivumbi was attending school in Uganda and caring for his blind and HIV-positive mother. He was born HIV positive, and in 2016 was diagnosed with tuberculosis (TB). A palliative care organisation took Kivumbi to Kampala to one of the best paediatric centres known for its HIV/AIDS and paediatric palliative care.
Initially Kivumbi’s mother was persuaded to allow him to stay at the centre as they found him to be malnourished and emaciated with an extremely low CD4 count of 20. However, his mother wanted him to continue to escort her to churches where she made money from singing else they would have no money. She did not want him to be hospitalised, so after only three days she took Kivumbi out of the centre, against advice, saying that they could both receive treatment from their neighbouring health facility. She also needed to look after her chickens and earn money selling music CD’s.
A week later Kivumbi fell seriously ill and his school headmaster took him to the local health clinic. Kivumbi’s condition deteriorated rapidly due to severe untreated diarrhoea. A few days later he was referred to a hospital in Kampala, where he subsequently died.
This story highlights the extreme circumstances children face when living with life-threatening conditions in sub-Saharan Africa. Often the primary caregivers of these children are economically vulnerable, ill or both. Where there is poverty and inequality the impact on a child’s ability to access care and treatment is severely curtailed. Thus the promise to respect, promote and protect children’s rights appears a futile promise, one available for only a few.
In these situations providing adequate and appropriate health care at a time where child rights are a priority can be challenging and can impact on the rights of a child to survival and development and, at the end of life, the right to a good death.
Socio-economic and knowledge barriers
Vulnerable carers face many barriers and are often uncertain or suspicious of treatment options. Individuals within minority groups can be discriminated against, resulting in disempowerment and exclusion. Economically vulnerable individuals may struggle to access healthcare facilities because of the high cost of services and transport and when accessing healthcare there may be a lack of palliative care skills and expertise. A challenge in cases such as Kivumbi’s, is how, if curative treatment was provided and it failed to bring his HIV & TB under control, the palliative care team can remain a constant presence throughout his illness. In countries such as Uganda, families may travel long distances to receive care and ensuring that the family is followed throughout the country is difficult.
A duty to protect
Caring for children such as Kivumbi calls for access to relevant information, specialised knowledge and skills, including understanding his developmental needs. It may be hard for caregivers to provide this support and they may be unaware of existing networks where they can access support. In situations such as Kivumbi it is important to protect and ensure his well-being and survival, particularly in the light of the severity of his condition.
Challenges exist to ascertain the best interests of the child, especially when the perceived best interests of the child vary between the family caregivers and healthcare professionals. Recently courts in the sub-Saharan region have presented arguments highlighting the best interests of the child over and above the interests of parents or caregivers. See ES v AC 2015(4) NR 921(SC) and Hay v B & Others 2003(3) SA 492.
Overlooked and less obvious vulnerabilities
Unfortunately, many child protection policies and programmes continue addressing the more public side of child vulnerability, focusing on specific groups of children or on commonly recognised issues (child marriage, sexual abuse, child labour, trafficking). These areas are undeniably important, yet there is a tendency to overlook less obvious vulnerabilities (Fluke & Wulczyn 2010). This specific and limited attention, particularly in sub-Saharan Africa, neglects the reality of paediatric palliative care, which can result in the hidden suffering of severely ill children.
In terms of Resolution WHA67.19 (World Health Assembly 67th Session) there is a call for improved monitoring and evaluation of needs and services in relation to paediatric palliative care and allocation of resources, including improved access to medication (WHA67.19).
The current lack of research and limited data collection for paediatric palliative care shows government institutions and commissions or child care programmes have failed to adequately implement the required monitoring or evaluation. This failure means states are unable to accurately determine the countries’ need for paediatric palliative care and the resources required to address this need.
The 2015 Quality of Death Index ranked Uganda second in Africa in improving access to pain relieving medication, particularly opioids (Caruso Brown et al 2014). However, despite this positive record, not all children needing access to palliative care in Uganda receive it thus, as in many other sub-Saharan Africa countries, resulting in children experiencing avoidable pain and suffering.
Pivotal to improving this situation is the way in which actors in the sector collaborate to develop a national palliative care policy and provide a viable network of support for children in similar circumstances.
Gaps in support
This draws attention to gaps in support provided by legislation, Child Rights institutions and the agencies obligated to represent the interests of all children. These institutions are mandated to promote and protect child rights to prevent the unnecessary suffering of every child.
Palliative care must be everyone’s responsibility, from State to business and non-governmental organisations, down to the community and individuals in communities. Human Rights Commissions focus on other important issues such as female genital mutilation, rape, etc and often don’t see the need to focus on a child’s right to palliative care or pain control. Why is it difficult for State and policy makers to understand that the suffering is the same and all children deserve just and equal protection?