Conference, Hospice Bloemfontein

Attending and presenting at 2 recent conferences – Rome and Minsk

November 22, 2018

I recently had the great privilege of being invited to speak at two international conferences, one in Rome and the other in Minsk. It was wonderful to meet up with old friends, make new friends and be excited together at the development of palliative care for children across the world, although there is still so much to be done.

The Conference in Rome was the Maruzza Congress: 4th Global Gathering on Paediatric Palliative Care 24-27 October. This congress takes place every two years and this year brought together paediatric palliative care leaders, practitioners, educators, and researchers from 40 countries from around the world. The theme was “Out of the Box” and began with a discussion on “Time” looking at the concept from both a scientific and philosophical viewpoint. It ended with a very exciting look at new technology developed by a Japanese airline that could have an important impact on taking health care into very remote regions.

Joan Marston, clinical coordinator, attending and presenting

At the opening session, I was invited to present a new WHO Guide – Integrating Palliative Care and Symptom Relief into Paediatrics. A WHO Guide for Health Care Planners, Implementers and Managers for which I am a contributing author. This Guide is available on the WHO website and can be freely downloaded along with its companion guides Integrating Palliative Care and Symptom Relief into the response to humanitarian emergencies and crises, to which I also contributed; and integration into Primary Health Care. The Guides are not medical guidelines but rather focus on integration into health systems to support the UN Sustainable Development Goal for health- Universal Health Coverage which includes palliative care. It is important for these Guides to be promoted widely and for every government and palliative care organisation to make use of them. Together with Dr Michelle Meiring from Cape Town, we presented a working session on PPC in acute infections referencing Ebola.

My final plenary presentation at the end of the conference was on Working with Policy Makers- partners in change. From many years of working with wonderful colleagues in advocacy at provincial, national and global level I looked at where we had been able to influence policy especially at global level and told of key successes especially the influential World Health Assembly Resolution on palliative care which has been accepted by all countries ( I was involved in writing this to ensure the inclusion of children and was present at this WHA in Geneva in 2015).

Spiritual care session in minsk. From left: Joan Marston, psychologist from Minsk, two hospice chaplains and a paediatrician from Latvia, a thanatologist from Tel Aviv

The Conference in Minsk was on The Child’s Right to Paediatric Palliative Care and was supported by UNICEF, the Human Rights Commission, the Belarusian government and the EU. As paediatric palliative care leaders have recently established a regional network – the Association for Children’s Palliative for Eastern Europe and Central Asia (ACPEECA) my presentation was on lessons learned from developing the International Children’s Palliative Care Network and how we developed the ICPCN from a discussion amongst a few dedicated children’s leaders in Seoul 2005 to a global organization recognized as the international body for paediatric palliative care by WHO and the UN and with membership in 125 countries. I was honoured to be invited to be a consultant and adviser to ACPEECA and look forward to furthering relationships in the region.

My second presentation was during a session on working as an interdisciplinary team where my presentation was on the Role of the Nurse in a paediatric palliative care team. We had excellent discussions and it was good to see that spiritual care was well- represented in this conference.

The world of children’s palliative care is full of the most passionate and compassionate practitioners, educators, researchers and advocates who work tirelessly for the right of children to palliative care. We believe it is a humanitarian imperative.