Maverick Citizen Op-ed

Suffer one million little children: when will South Africa start implementing its paediatric palliative care policy?

By Michelle Meiring 20 November 2020

Paedspal room walls covered with children’s drawings. ( Photo: Joyrene Kramer)

According to Nelson Mandela, “There can be no keener revelation of a society’s soul than the way in which it treats its children.”

Dr Michelle Meiring. ( Photo: Joyrene Kramer)

Today is World Children’s Day: on this day, 31 years ago the UN Assembly adopted the Convention on the Rights of the Child (UNCRC). The UNCRC is a legally-binding international agreement that sets out the rights of every child regardless of their race, religion or abilities. In celebration of World Children’s day this year, UNICEF is calling on people, organisations and buildings to “go blue” to show their support for children’s rights.

Earlier this week, Mark Heywood in his Tuesday editorial explained how 2020 has been “the year of children’s broken dreams”. 

He starts off by asking us the readers, to think back to our childhood and to recall how the world felt to us. He reminds us how childhood minds amplify emotions and how life can be stressful and traumatic to children especially as they lack the language to explain and understand what they may be experiencing. In relation to the current pandemic, although children have been largely spared from Covid-19 disease, “it has taken a terrible and unquantified toll on their mental health”. We are really in a state of disaster in South Africa with only three Provinces having Child Psychiatry Services.

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Continuing in this vein, I would like to invite you to remember a time in your childhood when you were ill or maybe even had to be hospitalised.

If you were fortunate to be spared this or can’t remember, maybe those of you who are parents, can recall the stress of having a sick child. This is probably one of the most severe stressors any child or parent could experience.

Now imagine being chronically ill and needing ongoing hospital visits and admissions, month after month. Imagine experiencing pain, either from your illness itself or its treatments and not being able to do anything about this. Our adult minds can at least rationalise things and understand that this may be for our good, but to a young child this must make no sense.

Then imagine the unimaginable – that your own life or that of your child’s is coming to a premature end. Unspeakable.

Imagine losing a brother or sister when you are still a child. Hard to comprehend.

As a Palliative Care Paediatrician, I’ve certainly witnessed a lot of suffering and thought a lot about what it means to suffer.

The Oxford dictionary defines suffering as “the state of undergoing pain, distress, or hardship”. Another way of looking at suffering is anything that threatens human dignity. Dignity is the right of a person to be valued and respected for their own sake, and to be treated ethically.

It sadly took humankind a long time to recognise that children are worthy of the same dignity and respect that adults are.  Nelson Mandela’s quote suggests that the way in which we treat children is a mirror of how civilised society is or isn’t.

When Jesus told his disciples to “suffer the little children to come unto him”, he wasn’t actually talking about them suffering but was telling the disciples off for trying to push them away as less important than the adults that were also vying for his attention. In this context the word “suffer” actually means tolerate or to allow.

So why is it that we seem somehow to be less attuned to the suffering of children?

Is it possibly because we regard them as being less important or is it because they often don’t have a voice or the agency to speak out or complain about what they are experiencing?

Historically most developments in medicine have preceded developments in paediatrics by two to four decades. Yes there are the ethical challenges in conducting trials in children but I can’t tell you how many advocacy meetings I’ve sat through where children are an afterthought or an addendum or added to a group of vulnerable persons that include prisoners, older persons and the homeless.

Still today so many drugs are not developed with children in mind and we are still crushing and dissolving adult pills in the hope that they will be absorbed by the child.

The suffering of an estimated 21 million children in the world living with life threatening and life-limiting illnesses could be mitigated through the provision of paediatric palliative care.  In our own country, researchers estimate that there are up to one million children who could benefit and suffer less.

Palliative care is a holistic approach to the management of conditions associated with serious health related suffering that assists in the relief of this suffering and supports the family through a multidisciplinary approach across a continuum of care from the home to hospital. This approach includes access to pain relieving medications and vital psycho-social skills that a parent of a child I once cared for said “helped keep me sane through an unimaginable journey”.

Palliative care does not end when the child dies but continues to provide support through the bereavement phase – something which is seldom part of the public healthcare service package.

Sadly and wrongly paediatric palliative medicine is not yet recognised as a specialty in SA and there are no government funded posts for it.

Yet children have a right to access palliative care.

In the 2018 Declaration of Astana (the successor of the 1987 Alma-Ata declaration), the right of every human being to the enjoyment of the highest attainable state of health is reaffirmed. A new focus in the 2018 declaration is on Universal Health Coverage (UHC) to be achieved through the strengthening of primary health care (PHC) that explicitly includes palliative care.

The UNCRC embodies children’s entitlement to special care and assistance given their vulnerabilities and dependence on adults for care and protection.  The UNCRC specifically refers to palliative care as a component of children’s right to health. Furthermore, access to pain relief is protected under Article 7 of the International Covenant on Civil and Political Rights which prohibits torture, inhuman or degrading treatment. 

The UN Special Rapporteur on Health And Torture 2015 report recognised that “children experience pain and suffering differently to adults owing to their physical and emotional development and their specific needs” and that “the threshold at which treatment or punishment may be classified as torture or ill-treatment is therefore lower in the case of children.”

Fortunately, we’ve come a long way in our advocacy efforts and legislation to ensure that children’s rights are protected.

Section 28 of our SA constitution even requires that certain children’s rights (including basic health care services and social services) should be met immediately and not progressively, and depending on available resources, as in the case of adults. Sadly, though, what is on paper doesn’t always translate into practice and we still seem to have many battles to fight in South Africa as child health advocates. It’s not “women and children first” by any means.

South Africa has a National Palliative Care Policy that was approved by our National Health Council in April 2017 but unfortunately the implementation of this policy is yet to even begin properly due to a lack of funding. Just as with the mental health issues mentioned by Mark Heywood on Tuesday, a handful of NGOs across the country are trying to fill the gap but access remains inequitable and patchy and we too are struggling to stay afloat post Covid-19.

So, I’m definitely going blue today to ask that the rights of children and especially those that are suffering are not only recognised but also realised.

Will you join me?

Aluta Continua! DM/MC

Dr Michelle Meiring is a Palliative Care Paediatrician who is the CEO of Paedspal an NGO providing a specialist Paediatric Palliative Care service in Cape Town. She also convenes the Paediatric Palliative Care Postgraduate Diploma at the University of Cape Town and chairs PatchSA – a network of Palliative Care practitioners and NGO across the country.

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