Professor Julia Downing is Chief Executive of the International Children’s Palliative Care Network and an Honorary Professor at Makerere University in Uganda, as well as universities in Serbia and the UK. She is an IAHPC Board Member and has been working internationally in palliative care for many years.
At this time of the year many of us are filled with anticipation for the year to come. We may wonder what will happen and hope that our dreams will be fulfilled and our fears won’t come true.
I was talking to a mother whose son recently died from cancer. At the beginning of 2018 he was still fit and healthy, and there were no indications of what was to come. She was thankful for the time they had had together, for the care that he was given, and for all the support they received from their local children’s hospice; but she was fearful about how she and her family were going to get through Christmas, and life, without him. Whilst this was a sad and tragic situation, she was ‘fortunate’ to live in the UK with access to children’s palliative care services — within the hospital where her son was receiving treatment, at home, and at their local children’s hospice. Unfortunately, for many families in similar situations around the world, this is not the case.
We know that globally there are at least 21.6 million children who need palliative care, with 8 million of them requiring specialist palliative care services. Estimates suggest that only 5% to 10% of these children and their families have access to palliative care. A systematic review published in 2011 found that 65.6% of countries had no known children’s palliative care activity, and only 5.7% had services that reached mainstream providers.
At the International Children’s Palliative Care Network (ICPCN) we have been tracking the ongoing development of children’s palliative care globally for almost 10 years.
Whilst it has been encouraging to see developments in several countries, these developments are slow and there remain far too many children in our world who are in pain and who suffer needlessly because the support and relief that palliative care can provide is not available where they live. This gap, identified by the Lancet Commission report as an ‘access abyss in palliative care and pain relief,’ emphasizes the differences in provision between low- and high-income countries and motivates us to do we all we can to reduce this gap. Such inequity is a human rights issue and ICPCN, along with IAHPC and the Worldwide Hospice Palliative Care Alliance (WHPCA), strives tirelessly to reduce these inequalities and improve access to palliative care for all children globally.
I have had the privilege of visiting numerous children’s palliative care programs around the world. I have found that whilst the philosophy of care may be similar, the way that it is implemented often differs along with cultural and religious observances.
While ensuring that we provide affordable and culturally appropriate children’s palliative care, we must guard against using ‘culture’ as an excuse to avoid addressing some of the more challenging issues, such as telling parents and the child the truth about their illness and prognosis, or explaining to a parent that their child is dying and what to expect beforehand. Yes, although it is important that we do this in a way that shows respect for a person’s culture, it is equally important to hold these difficult conversations, so that children and their families can manage their expectations and redefine their hopes and goals.
We have a saying in English — the elephant in the room — that refers to an unavoidable topic everyone is pretending to ignore. Hospis Malaysia ran a campaign in 2018 to address an elephant in the room: talking about illness, death and dying, cancer, or some rare genetic disorder. The phrase ‘elephant in the room’ may not translate across all cultures, but I’m sure that we can all think of times when everyone is avoiding the topic that most needs to be talked about, such as when we need to discuss a child’s condition, their prognosis, or what to expect. How do we address this?
Similarly, how do we address the ‘access abyss’ that prevents access to palliative care and adequate pain relief for millions of children? How do we get the message across that this is not acceptable, that something needs to be done to change this situation, that children’s palliative care is a human right? People need to know that addressing this unacceptable situation is not just dependent on resources, but also demands a change in attitudes and understanding. They need to know about good communication and the importance of access to appropriate medications and they need to recognize the undeniable benefits of palliative care provision for seriously ill children and their families.
What should we be doing to raise awareness of the benefits children’s palliative care provides? People often remark that it must be depressing to work in children’s palliative care and my response is always to say that ‘children’s palliative care is not so much about death, but about life — about ensuring that every child and their family have the best possible quality of life, right up until the time that they die.’ This is a good message to spread and we should be shouting it from the rooftops!
So as we head into 2019, whether we are providing palliative care for children or adults or both, and regardless of where in the world we work, let us think about how we communicate about palliative care, how we persuade the policy makers and health care providers that palliative care for children should be an integral part of care and not an optional extra, and how we talk to children and their families about how palliative care can help them.
There is no excuse for the lack of palliative care for children in so many parts of the world. We know that palliative care can make a difference, we know that we can improve the lives of children and their families, and we know that every child — regardless of where they live — has a right to access it. So let’s work together to continue to reduce the gap and make palliative care for children a reality around the world.