Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illnesses, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. #PalliativeCare for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
That doesn’t sound too scary, does it? The truth is that it is not. Sadly palliative care has a poor and undeserved reputation because the concept arose out of hospice and terminal care.
Too often I have heard the words,” No. Not yet. We are not there yet.”
Where is there? I know you mean that your child is not dying and that you are not ready to give up. But even if your child is not dying, surely if you are living with a rare condition you will be experiencing a range of things. You may have physical symptoms that need addressing. You may have emotional pain or social concerns such as isolation and financial strain. Perhaps your child can’t go to school, or requires 24/7 care. You may even be angry with God and the world because of the distress you are experiencing.
So then, if we go back to the definition of palliative care, we can see that this kind of care will provide the support you need, long before anyone even thinks of dying! Palliative care is about helping patients to live with their condition.
One of the problems we have in South Africa is a lack of palliative care providers. Happily, this is slowly starting to change. I believe that it is when patients and families begin demanding this kind of holistic and supportive care, the supply will increase.
So next time you are with your primary health care provider ask them. Chances are they won’t fully understand what you mean either. They may even say you are not there yet. But then you can be part of the solution. You can help spread the word and educate your doctors about palliative care.
If you would like to know more about palliative care please go to www.patchsa.org
Dr Julia Ambler
Deputy Director
Umduduzi – Hospice Care for Children