On September 26-27, the Third National Palliative Care Forum was held in Kyiv, bringing together international experts, Ukrainian specialists and activists seeking to make life easier for children with serious illnesses.
The aim of the Forum, initiated by the Ukrainian Association of Pediatric Palliative Care, is to facilitate the experience exchange and to identify specific actions for the development of pediatric palliative care, in particular, advocacy for the adoption of basic legal instruments enabling to provide services for palliative patients.
Palliative care is part of healthcare services guaranteed by the state.
This means that the state has assumed responsibility for providing every person in need of palliative care quality healthcare and social services.
“Palliative care is a topic that is only now making its way in our society. However, it is now necessary to pave the way from emotional compassion to concrete actions to make life for terminally-ill children easier. This would be a sign of maturity of our society. For our Foundation, this is a very important area, in which we help to form communities, to accumulate and share experience and knowledge”, said Oleksandr Sushko, Executive Director of the International Renaissance Foundation.
Palliative care is the realization a terminally-ill person’s right to a dignified life and death without physical or psycho-emotional suffering. At present, most young patients with serious illnesses often die either at home without quality palliative care and proper anesthesia, or in the intensive care units, being separated from their families.
Among other problems in Ukraine is a lack of palliative care needs assessment for children in communities, based on a uniform methodology; a lack of a comprehensive list of such services and organizational forms of pediatric palliative care. In addition, as noted by Tetyana Nickelsen, Board Chairperson of the Ukrainian Palliative Care Association, awareness of palliative care is still low in the society, and you need to fight to get funding for it.
On the first day of the Forum, Joan Marsson, International Ambassador of the International Palliative Care Network, reviewed the international practices for ending pediatric care, focusing on ethical considerations and standardization of approaches, while representatives of St. Jude Hospital (USA) shared their successful experience of fundraising to support the pediatric palliative care programs, as well as the modern principles of pediatric pain management.
In support of terminally-ill children, Forum participants joined the flash mob “Hat on the ears” (“KapelyuhaNaVuha”). The hat itself is a symbol of the protection and care that children with serious illnesses need. You can also join in – put on a hat, take a selfie, and post it on Instagram or Facebook with the hashtag #KapelyuhaNaVuha” or “HatsOn4CPC”.