The sunflower effect
The need for palliative care among children is not easily quantified. In the Free State, the Sunflower Children’s Hospice cares for 1 000 children every year who all have different needs. Most are living with HIV and AIDS. The hospice recently conducted an audit of how many children need palliative care in the province.
“There were 1.2 million children in the Free State. Children in need of antiretrovirals were 106 000 and we really believe that if you provide palliative support alongside antiretroviral treatment, that can provide the best quality of life for a child. There were over 2 000 children with cancer. Children with severe disabilities were nearly 4 000 children. Children on TB treatment were 3 500 and children with malnutrition were 384 000. We know that severe malnutrition is very life-threatening and can be life-limiting”, says hospice director, Joan Marston.
Those are the children that can be accounted for by statistics. There are others that need palliative care, but they are unknown.
“We were actually unable to get accurate statistics. These are children with congenital anomalies, children with chronic organ failure like heart failure, renal failure, liver failure. So, added to this great number of children requiring palliative care where we have statistics is another great number of children whom we don’t know”, Marston says.
All of these children need palliative care because illness has made them vulnerable. Marston explains what palliative care is.
“It includes pain and symptom control. Access to pain management is just so incredibly important. There is a new project that is now being spread worldwide, which is looking at torture and saying that if we allow people to remain in pain, we’re actually torturing them. Pain management is of crucial importance to palliative care and, also, the relief of those distressing symptoms that come along with life-limiting conditions and, then, all the wonderful supportive care that we give - the psycho-social, the spiritual and the developmental care”, she says.
In the past, it was guaranteed that people living with HIV and AIDS will die not too long after their diagnosis. Many people ill with AIDS-defining conditions were sent to hospices to die there. But with the availability of antiretroviral medicines, palliative care is no longer about preparing patients with AIDS for their death or keeping them in an institution for indefinite periods.
“It’s focused on the relief of suffering and the improvement in quality of life and it can be provided from the time of diagnosis, alongside potentially curative treatments.
A lot of people think palliative care is end of life care; it’s care of the dying. It’s not. It’s care of the living. It’s care of the living until they die and of the family into the bereavement period. An in-patient unit for palliative care is a short-term unit. It is not a children’s home. It is to bring children in for pain and symptom management, for end of life care and for short periods when these children cannot be cared for in the community. So, the aim with admission is always to get the child back into the community, not to keep the child for long periods of time”.
The Sunflower Children’s Hospice started as a small project in 1991 under the name St Nicholas Children’s Hospice and operated only in the Motheo district. In 2008/2009, through partnerships with the Department of Health and funding from Pepfar (the US President’s Emergency Plan for HIV/AIDS), the hospice expanded its services to work in all five districts of the Free State. It also provides support and training to four other hospices in the province.
“Sunflower provided a service just in Motheo district, with some outreach into the Xhariep district. There are five districts in the Free State. So, the outreach was limited. It cares for approximately 1 000 children and families every year, providing palliative care. And it provides a whole comprehensive range of services that reach into the hospitals, into the primary health care clinics, into children’s homes and schools”, Marston explains.
The hospice’s main challenge is to get the people of the Free State to understand the concept of palliative care and to ensure that those children suffering from pain get help.