Easing the pain and fears of dying children

"Am I going to die?"

The first time a child asked paediatrician Michelle Meiring this question she was shocked.

"Sometimes doctors lie," not wanting to tell the child the truth, says Meiring.

In her opinion the correct response is: "What makes you think that?" And then to explore their fears, she says.

Meiring works with children who have incurable illnesses. Based at the Sarah Fox Convalescent Hospital in Athlone, Cape Town, she was last week awarded a Discovery Foundation fellowship to complete her PhD on paediatric palliative care.

Palliative care tries to ease the emotional, physical and spiritual suffering of people who are either terminally ill or have an incurable disease.

"Palliative care is not just helping people die. This is a common misconception," says Meiring. "Palliative care experts are excellent at pain management and ensuring the patient and their relatives do not suffer unnecessarily.”

Meiring found her passion by accident. She was working as a paediatrician in the nineties before anti-retrovirals were available and she was unable to save many children dying from Aids. She said watching babies die was so heart-breaking that some of her colleagues couldn't cope anymore and left medicine.

One night after spending many hours trying to save a baby with Aids, the infant died in the morning and she thought: "I have been up all night trying to save you and this is how you thank me".

When her fury subsided, she realised next that she did not know how to comfort  the mother and had put the dying baby through unnecessary pain constantly drawing blood samples from the infant, pricking it with needles and not offering any pain control.

Meiring has found that medicine teaches doctors how to make a diagnosis or how to treat a patient.  But it does not equip doctors on what to do when the treatment of the disease is not effective.

"After diagnosis and treatment, the textbook ends."

Palliative care is about helping the patient at a time when doctors used to say there is nothing more I can do she explains. Pain management is a very important aspect of palliative care, she says.

In 2002 Meiring started an NGO called Big shoes that offered palliative care, to hospitals in Durban, Cape Town and Johannesburg. In 2012, Bigshoes appointed a new CEO to run the NGO. But the NGO subsequently collapsed amid allegations of financial mismanagement.

"It was devastating".

Because palliative care is not a recognised speciality in medicine, nurses, social workers and doctors who do this work are funded by NGOs. Meiring hopes her PhD will be one step towards palliative care becoming a recognised speciality in South Africa, resulting in posts being funded by government.

It is a recognised speciality in the UK, parts of Europe, the US and Australia, she says.