The symposium was held as a satellite meeting to the national palliative care conference to take place from today, 31 October to Saturday 2 November. At the symposium, the more than 120 delegates from around Canada who filled the meeting room on the third floor of the Westin Hotel were treated to a day filled with stimulating presentations on a diversity of topics within children’s palliative care.
Getting the day off to an excellent start, Mary Ellen Macdonald, a medical anthropologist from McGill University, provided a fascinating description of her recently completed research on present day thinking about child death. She spoke of four common socio-cultural scripts about child death, describing the results of her research for each one. These scripts being:
- We live in a death denying society
- Children don’t die anymore
- Children shouldn’t die
- Good (bereaved parenting)
Macdonald believes that death holds a certain fascination for present day society and the struggle is in trying to gain some control over death through ‘medicalisation’ and individualisation.
Perinatal Palliative Care
This was followed by an absorbing presentation from Lynn Grandmaison-Dumond of Children’s Hospital of Eastern Ontario (CHEO) and Sharon Spicer from Alberta Children’s Hospital on Perinatal Palliative care. The guiding principles for which include care that is centred on the child and the family with due regard given to therapeutic relationships, continuity of care, communication, accessibility and ethical considerations. Delegates were reminded that time was a very precious resource to the families facing the loss of a newborn infant and that good outcomes would see families provided with choices, facing their situation with decreased anxiety, having the ability to experience bonding with their child and even celebrate the birth, ultimately leading to a peaceful acceptance and a dignified death. Sharon reported on research done in a 5 year review of referrals for perinatal palliative care at the San Diego Hospice. It was noted in this research that in many cases palliation is not offered to parents as an alternative option to termination.
Best practice in paediatric pain management was presented to the delegates in the form of a case study, with input from a medical, pharmaceutical and social perspective and breakout sessions followed with one on the in-home respite programme in Quebec and the challenges of starting up a new children’s palliative care programme.
An international perspective
After the lunch break, ICPCN’s Chief Executive, Joan Marston, spoke on international developments in children’s palliative care and encouraged the Canadians present to expand their vision and reach out to countries outside of their borders to look for opportunities for a rich exchange of knowledge and cultural practices. Joan made particular mention of the desperate need for training and French materials in Francophone Africa. Mention was also made of the results of a collaborative research project between ICPCN and Unicef looking at the prevalence of children with palliative care needs in three African countries and a methodology for assessing the need in other countries. The results of this research will be officially launched in London next week.
Marie-Claude Gregoire of IWK provided delegates with interesting insight into the development of a policy on End-of-Life provision for newborns within a hospital in Nova Scotia for mothers and children. She described the need for a single good standard of care for these vulnerable infants and the process followed in achieving the final policy document, leading also to positive changes within the hospital and ultimately, better outcomes for the families.
After a short break, concurrent sessions were held on teamwork and spiritual care and the transition from ICU to hospice. The day concluded with intriguing insights from a panel of parents of children who are living with or who have died from a life limiting illness. These parents shared their thoughts about being referred to the palliative care services at Roger’s House in Ottawa and their experiences since then. They encouraged health professionals to ‘listen to the parents’ as they are the experts on their children. They all agreed that their experiences gave them a completely different perspective on the importance of other life events and had also introduced them to a world of wonderful people.
This discussion provided the perfect ending to a day of stimulating presentations and exciting networking opportunities. As the sun began to set, limousines whisked away a group of lucky delegates who had accepted the invitation of a guided tour of Roger’s House, Ottawa’s very own children’s hospice.