The policy is clear that the following is needed in respect of children specifically:
- Comprehensive services to allow every parent, including young and poverty-stricken mothers, to support themselves and their children;
- More facilities providing palliative care for children;
- An end to futile treatment that sees children suffer unnecessarily due to paternalism amongst some treatment providers, especially those who struggle to accept deaths in childhood; and
- Training a multi-disciplinary healthcare workforce in palliative care, tailored specifically to meet the unique needs of children.
There is a misconception that palliative care is synonymous with end-of-life care. In reality, palliative care is life-affirming. It improves the quality of life of patients living with a serious illness, and of their families. It prevents and relieves suffering by ensuring the treatment of pain and other concerns that arise following a cancer diagnosis, so helping people continue to live an active life with their illness.
This type of care helps to secure dignity in living, but also in dying should the illness progress.
This is particularly important in the case of children who need to deal with the possibility that they will not grow into adulthood, as well as the strain that their diagnosis brings to their parents and siblings.
“There are still substantial barriers to children accessing palliative care, and we believe these need to be addressed,” says Linda Greeff, chairperson of the Cancer Alliance.
The barriers include:
- Parents’ or doctors’ misperception of palliative care, believing this means “giving up”;
- Their age or developmental stage;
- Legal status;
- Dependence on parents/guardians;
- Cultural norms;
- Illness and disability;
- Orphanhood or abandonment;
- Lack of trained healthcare providers;
- Unavailability of essential palliative care medication for children; and
- Distance from health facilities.