IAHPC TRAVELING SCHOLAR'S REPORT
3rd International Cardiff Conference in Paediatric Palliative Care
Thanks to the financial support received from the International Association of Hospice and Palliative Care (IAHPC 21-23 June, 2006, Cardiff University, Wales) I was able to attend the 3 rd International Conference on Paediatric Palliative Care in Cardiff, Wales. This conference was both the first international conference (outside of South Africa ) as well as the first conference in Paediatric Palliative Care that I have attended.
The theme of the conference was “progress in palliation: intervention or interference?” Dr Richard Hain, the conference organiser, set the theme for the conference with the following words: “What does palliative care mean to those who look after children? Probably different things to different people. To some, palliation is the embodiment of compassion. It rescues dying children from the talons of technology and the turmoil of modern medicine and allows them to die peacefully without interference at home or in a hospice. To others, palliation is the very antithesis of good health care. It means capitulating to the probability of death, denying a child the hope of cure and the chance for life.”
And indeed, the theme did mean different things to different people. And there were many different people at the conference. We heard and read of experiences from the families of the patient’s themselves, from nurses and doctors working both within hospital and hospice based programmes and from organisations such as Helping Hands, the Childhood Bereavement Trust and the Association for children with life-threatening or terminal conditions (ACT). Countries represented included the United Kingdom , Germany , Canada , Australia , India , Kuwait and South Africa.
The opening plenary was presented by a mother who had lost her child to adreno-leuko-dystrophy. She described the pain and turmoil of having had a child who had been a normal little boy for the first few years of his life and who after diagnosis, proceeded to deteriorate and to follow a progressive downhill course. She described, as only a parent could, the anguish of not being able to do anything, the turmoil of trying to find answers and seek cures and then finally the acceptance that came with the realization that the end was in sight. She also described how some medical professionals had been understanding and helpful and how other professionals had not understood and had added insult to injury. This very personal account set the tone for the rest of the conference and gave us a glimpse of what it must be like from the “other side”- something that is not commonly given a voice at many scientific conferences.
Not only did the conference provide very personal insights into the life and experience of children with life limiting conditions, but there were also some excellent scientific presentations on the pharmaco-dynamics of morphine, transdermal buprenorphine, nutritional failure in paediatric palliative care and non-invasive ventilation.
I presented a case study on the ethical issues around the use of anti-retrovirals in end-stage Paediatric AIDS and also addressed a plenary. The title of my plenary presentation was: “When two worlds collide: ethical dilemmas encountered in paediatric palliative care when first world medicine is practiced in third world settings”. I must confess, I did feel a bit like a “fish out of water” being the only representative from an African country, but the conference made me realise that although we may have different diseases and different resources, our dilemmas are similar and we can learn a tremendous amount from sharing with each other and with our patients and their families.
Many thanks again to IAHPC for its support in helping me attend this meeting.
Dr M.A.Meiring
The Bigshoes Foundation - The Memorial Institute for Child Health and Development
Johannesburg, South Africa.
|
