This article is an expanded version of the guest editorial originally published in Rehab & Community Care Magazine.
By Laurel Gillespie & Katrielle Ethier
Every child deserves a full, happy life filled with love. How can we ensure that when a child is facing a life-limiting illness? Quality hospice palliative care gives children and their families the peace of mind that whatever time they have will be as happy, peaceful, and comfortable as possible. 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.
Hospice palliative care is a holistic approach to care that aims to relieve suffering and improve quality-of-life for those living with a life-limiting illness. This includes physical, psychological, social, and spiritual care for the person faced with end-of-life, as well as support for their caregivers and family. This care can be provided in any setting, even at home, and often includes an interdisciplinary team of professionals including doctors, nurses, social workers, physical therapists, personal support workers (PSWs), and other specialists as appropriate, as well as volunteers. Pediatric 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.
According to the latest data from 2018, most Canadians would prefer to die at home if given the choice (CIHI, 2018). Those who received palliative care at home were 2.5 times more likely to die there than those who received regular home care, however, only 15% of Canadian have early access to palliative care in the community (CIHI, 2018). Additionally, when palliative care is integrated early in the patient’s care, patients report higher satisfaction with care (McAteer & Wellbery, 2013), better symptom management, and improved quality-of-life (NINR, 2020).
Unfortunately, there is limited research and data on hospice palliative care in Canada, and even less is available on pediatric hospice palliative care. The latest data is already over a decade old. Over half of children in pediatric 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 pediatric hospice palliative care truly appreciate the comprehensive, holistic model of care,” states Christina Vadeboncoeur, pediatric 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.
Estimates published in 2014 suggest that 9.8 of every 10,000 children might benefit from pediatric palliative care (Chavoshi et al., 2014). While the number of children who received specialized pediatric palliative care in Canada more than quadrupled between 2002 and 2012 (Widger et al., 2016), there is more work to be done to ensure that this care is accessible to all who need it. Many dedicated professionals across the country are working hard to achieve this goal. One such example is Robyn Thomas’ work that focuses on the needs of those navigating pediatric end-of-life care within the Nav-CARE program. Co-founded by Dr. Barbara Pesut and Dr. Wendy Duggleby, Nav-CARE is a volunteer navigation program that seeks to improve the quality-of-life of persons living with declining health and is currently being implemented across Canada.
Thomas was interested in 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. Although she had many conversations with families about their experiences with navigating pediatric end-of-life care, Thomas admits there isn’t much research in this field — especially in how to support caregivers. As a result, Thomas focused her research on the caregiver’s experience and how a new model could support them. The results of her research showed that their needs range from practical to personal and everything in between. For example, many shared their need for support with daily life, like with shopping for groceries, or taking their family out for activities. Thomas is now focusing on how volunteers can address those needs through the integration of the Nav-CARE program and is considering expanding to serve rural communities.
Thomas hopes that her research and involvement in the pediatric hospice palliative care field can make a difference for accessibility, education, and training. Above all, she wants to normalize these conversations and create a space where these issues can be discussed without hesitation or doubt. “Part of the reason that this field is so overlooked is because it’s so difficult to talk about and to actually address,” shared Thomas, “But when you hear about the challenges people are facing, it really shows just how important it is that we bring attention and focus to such a vulnerable journey that people are on.”
When a patient dies, medical professionals feel as though they failed, especially when that patient is a child. While it isn’t 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 pediatric hospice palliative care – because it’s the least that these children and their families deserve.
CHPCA and CNPCC are collaborating to advocate for better access to hospice palliative care for children across Canada. You can find out more at www.CHPCA.ca/CNPCC.