In Focus: Member Profile
Joan Marston is based in South Africa and comes from a background in Nursing and Social Science. She is the Global Ambassador of the International Children’s Palliative Care Network (ICPCN) having served as its Chief Executive. She was one of the founding members of the original ICPCN Steering Committee in 2005. More recently, she has also been part of the group that developed the new Guidelines for Persisting Pain in Children, as well as Guidelines for Disclosure in Children for the World Health Organization.
With twenty-nineyears of experience in palliative care for children, she has provided this specialized care in the roles as Executive Director of Bloemfontein Hospice and as founder of the Sunflower Children’s Hospice in 1998 in Bloemfontein, South Africa, alongside her work in a regional network for life-limited children, the St. Nicholas Bana Pele Network in 2009. As the national paediatric development manager for the Hospice Palliative Care Association of South Africa from 2007 to 2010, Joan and her team developed a strategy for a national network of services, promoting the considerable growth of the number of paediatric palliative care services for children in South Africa. During that time she was the Project Manager for a programme to develop children’s palliative care Beacon centres in Tanzania, Uganda and South Africa.
A committed advocate for children’s right to palliative care and pain relief, Joan has also worked towardsresponsive palliative care for children and adultsduring acute and protracted humanitarian crises. When asked about some of the ethical dilemmas humanitarian healthcare workers might face when confronting terminally ill or injured children, she said, these include prioritising of scare resources such as personnel, time and medicines when saving lives is critical, especially when palliative care is seen as non-essential. Withholding or withdrawing treatment that could prolong life, spending time with a dying child when personnel are needed to deal with acute emergencies, and developing/using comforting child-relevant communication are additional ethical issues. Practically, lack of training in and understanding of palliative care and pain relief in children by humanitarian first responders—as few have paediatric formations—and a lack of palliative care workers in humanitarian situations is a main contributing factor to the development of ethical dilemmas. Humanitarian healthcare workers may also find themselves overwhelmed by the number of adults needing care, or by the reality that adults may leave an ill or injured child due to their own inability to face the issue of children dying. Undoubtedly tragic choices along the lines of those listed will need to be made in harrowing circumstances, but collaboratively making those decisions is part of the work Joan Marston and the larger networks she is involved in continue to work on in order to mitigate and minimize their difficulty.
Joan Marston is an active member of the Anglican Church and a Lay Minister in the Cathedral in Bloemfontein. She is also an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England. She can be reached at firstname.lastname@example.org