Today saw the opening of the VI International Conference on children’s palliative care here in Minsk, Belarus. The conference, attended by over 200 participants from 14 countries, was opened officially by Dr Lyudmila Lioghkaya from the Ministry of Health, and presentations made during the opening ceremony by the Deputy Country Director of UNICEF, and the CEO of the International Children’s Palliative Care Network (ICPCN). Anna Garchakova, from the Belarusian Children’s Hospice welcomed everyone to the conference and to Belarus and thanked the Belarusian choir from one of the local schools that entertained delegates prior to the opening ceremony.
Dr Lyudmila Lioghaya (Ministry of Health Belarus) shared with delegates about the progress of children’s palliative care within the country. The Belarusian Children’s Hospice, an NGO which provides services for children and young people and their families, was founded in 1994 and provides services for approximately 240 children and their families. More recently the Ministry of Health is developing a state structure for palliative care which is evolving and aims to provide efficient and accessible palliative care services to children with life-limiting conditions throughout the country. Much has been done over the past few years to ensure that regulatory documents have been put in place along with clinical protocols and other guidelines to support the provision of children’s palliative care.
There is only now
Joan Marston shared about the history and development of children’s palliative care throughout the world, giving examples of services and developments from different parts of the world. She noted that the core elements for the development of children’s palliative care include leadership and champions, recognition that children are at different stages of development, education and mentoring, and importantly, hearing the voice of the child and their families. She talked about the general need for children’s palliative care and the role of the ICPCN, as well as each of us, to advocate for children’s palliative care service provision. She noted that we have in the world: expertise, model programmes, resources, education, materials; and medicines. We have opportunities for influence, passionate people, and funders, so we need to make sure that we are making a different in the lives of children and their families through the provision of quality palliative care services. She challenged delegates with the question: “For many of our children there is only now – if we don’t do something now to make a difference in their lives, who is going to do it and when is it going to happen?”
Key in the development of children’s palliative care is the work done within the United Kingdom, and Katrina McNamara from Together for Short Lives shared about the provision and cost of services in the UK. Most recent studies have estimated that there are at least 49,000 children and young people under the age of 19 years in the UK living with a life-limiting or life-threatening condition that may require palliative care services, and shared the model of care provision in the Uk, noting that whatever model of care we provide it is essential that we keep the child and their family at the centre of care, and include issues concerned with day-to-day living such as school, housing, transport etc.
Unicef and ICPCN research results
Identifying the need for children’s palliative care, and the numbers of children requiring palliative care was a theme noted throughout the presentations by the different speakers. Prof. Julia Downing shared the results of a study conducted by UNICEF and the ICPCN to identify the need in 3 countries, Kenya, Zimbabwe and South Africa. The number of children in each of these countries requiring palliative care is high, for example 120 per 10,000 children in Kenya and 180 per 10,000 children in Zimbabwe. Yet to date, provision of services does not meet need, with only between 1% and 4.5% of children in these countries receiving the care that they need. Barriers to the provision of care were noted, many of which can found in other countries including gaps in policy, inadequate knowledge of CPC, low uptake or oral morphine and limited resources.
Maryann Muckaden from India, continued the theme of developing children’s palliative care and shared the results of a DFID funded project in India and Malawi. Some of the barriers to development were similar as in the previous session, yet there have been great strides in the development of children’s palliative care in India, and she was able to share many of the great achievements seen, whilst recognizing the ongoing challenges, and the need to meet the needs of more children.
Myths and misconceptions
Some of the barriers identified in sub-Saharan Africa and India are linked to myths and misconceptions. Stefan Friedrichsdorf from Children’s Hospitals and Clinics of Minnesota challenged those myths in his session on Living as long and as well as possible. He challenged a variety of assumptions including those that:
- the death of a child is a rare event,
- that palliative care for children is only for those with cancer and only at the end of life;
- that specialist trained CPC practitioners are not needed;
- and that increasing doses of morphine causes respiratory distress, amongst others.
When asked what motivates him in children’s palliative care he commented that there is no other work that he would rather be doing, and that there is always something that can be done to help the children and their families.
John Harris from, the UK, brought the morning’s session to a close by bringing us back to where we started with Joan Marston, and the need for leadership. In his discussion of strategic planning and advocacy he challenged us that it is important to look ahead, to plan and to work together, but at the same time that partnerships are only as strong as their weakest link, so we need to make sure that we are not that weak link. Partnerships and collaboration are critical for us as we move children’s palliative care forward in our countries and throughout the world.
Thus, the first morning of the conference challenged us all to ensure that we are providing quality children’s palliative care, to be leaders and to advocate for the rights of the child, and to work together so that we can meet the needs of the many children needing our care.