Local news platforms reported last week on the death from cancer of two young Durban boys, both aged 12. Numerous recent news reports have covered similar tragic losses and Member of Parliament, Dean MacPherson, even raised the issue in parliament demanding that more money be invested in cancer research; a reasonable and welcome response to the death of any child.
Valid points were made in a recent Carte Blanche TV programme debating the issue of physician assisted suicide for those nearing the end of life due to illness and thousands of people expressed their strong opinions on the topic through social media. It certainly behoves us to think about these issues as we are all mortal and will one day have to face our own demise.
Pause for a moment
However, can we pause for a moment in our indignation at the lack of cancer research for children and demanding our legal right to choose our own time and manner of death to consider what is happening around the country to hundreds of thousands of people at this very moment?
Recent research conducted by UNICEF and the International Children’s Palliative Care Network (ICPCN) reveal that in South Africa 304,441 children are living with a life-limiting illness that cannot be cured and require specialised palliative care services. Most of them will die far sooner than they or their families would want and the vast majority are coping with their illness with a pitiful amount of non-specific support. In fact, less than 6% (151.92 in every 10,000 children) are receiving the support they need. Why are we not focusing the spotlight on them and fighting for their right to receive palliative care?
Palliative care lessens a person’s suffering and improves their quality of life. Medical professionals on the palliative care team are expert at relieving pain and other distressing symptoms of an illness and its treatment protocols and patients and family members are offered counselling and given emotional, psychological, social, spiritual and bereavement support.
Should this not be the right of anyone who is faced with an untimely death as a result of illness, particularly a child? However, almost all palliative care services in South Africa are provided by the non-profit sector and it is a struggle for both private and public patients to access this care. A little has to go a very long way.
Withdrawing funding from hospice sector
In the current financial climate most of the large corporates are choosing to withdraw funding from the hospice sector and those with a concern for children’s issues prefer to lend their support to education and early childhood development.
Shouldn’t someone be standing up in parliament demanding that every patient alive today who needs to be supported as they deal with the distress, pain and other collateral complications associated with an incurable illness, have access to palliative care? Shouldn’t we be every bit as indignant about their lack of support as we are about the need for cancer research for children?
We won’t find the panacea to cure or prevent all cancers in the very near future. And while I believe that with good palliative care patient assisted suicide is not needed in most cases, for those hoping to legalise physician assisted suicide, the law will not be changed overnight.
Now is the time
Now is the time for us to stand in solidarity and show that we care for those who are still alive right now but struggle to make it through each pain-filled day. Now is the time for all South Africans to demand their right to access good palliative care.
For this care to become standard and accessible to all, there needs to be a financial commitment from both the government and the private sector. They need to get behind hospices and palliative care services to increase capacity, training and resources. Only then will South Africans of all ages have access to the palliative care they need in the hour they need it most.
Dr Julia Ambler is a medical doctor who specialises in children’s palliative care in the beautiful South African province of KwaZulu Natal. She is the co-founder of Umduduzi, Hospice Care for Children, a charity that provides hospital and home based palliative care for children within the greater Durban region.
You can make contact with her at firstname.lastname@example.org