By Laurel Gillespie and Katrielle Ethier
Paediatric palliative care is based on the needs of the child and their family, not on the patient’s prognosis. It significantly improves the child’s quality-of-life while reducing their symptom burden and considers the lasting effects on their parents and siblings, providing support where needed. For the health care system to be able to offer that care, we must be willing to have emotionally difficult conversations about what quality hospice palliative care for children entails.
Unfortunately, there is limited research and data on hospice palliative care in Canada, and even less is available on paediatric hospice palliative care. The latest data is already over a decade old. Over half of children in paediatric palliative care face an uncertain prognosis and sadly, most children are still dying in the hospital rather than at home or in a hospice facility. “Families who receive paediatric hospice palliative care truly appreciate the comprehensive, holistic model of care,” states Christina Vadeboncoeur, paediatric hospice palliative care physician and co-chair of the Canadian Network of Palliative Care for Children (CNPCC), “The child receives support including attention to symptom control, therapy to understand what they are going through and peer support. The family receives support from the time of diagnosis, throughout their child’s journey and into the bereavement period.” The holistic approach in hospice palliative care is the key element that ensures that children and their families feel fully supported throughout their journey with illness.
While the number of children who received specialized paediatric palliative care in Canada more than quadrupled between 2002 and 2012 there is more work to be done to ensure that this care is accessible to all who need it.
Robyn Thomas’ work focuses on the needs of those navigating paediatric end-of-life is interested in the Nav-CARE’s model because it focuses on quality-of-life and on helping people by walking with them through their journeys. “There is a huge gap that I witnessed personally just from having conversations with people in getting successful care that is person-centered, family-centered, and [about] quality end-of-life care,” says Thomas. As a result, she is focused her research on the caregiver’s experience and how the new model could support them. “Part of the reason that this field is so overlooked is because it is so difficult to talk about and address,” says Thomas, “But when you hear about challenges people are facing, it really shows just how important it is that we bring attention and focus to this vulnerable journey.”
When a patient dies, medical professionals feel as though they failed, especially when that patient is a child. While it is not easy to talk about mortality, and even harder when it comes to children, it is unavoidable that some patients will not survive their illness. Ignoring that fact does not change it—but talking about it can give patients the opportunity to enjoy a better quality-of-life, for as long as they can. That is exactly why it is so important for us to summon our courage, have these conversations, and learn more about paediatric hospice palliative care—because it is the least that these children and their families deserve.
Laurel Gillespie is the Chief Executive Officer of the Canadian Hospice Palliative Care Association and is a Certified Health Executive.
Katrielle Ethier is the Communications Officer for the Canadian Hospice Palliative Care Association.