What is the first thought that comes to your mind when you read the word “palliative care?” These words paint a particular picture: an older adult in a hospital environment, in a long-term care facility, or in their home at the end of their life. What some people fail to realize is that infants, children, and youth may also require end-of-life care. This is known as pediatric palliative care. Preconceptions may blur the understanding of what pediatric palliative care may actually entail.
The World Health Organization (WHO) defines pediatric palliative care as the active and total approach to a child’s care (i.e., body, mind, and spirit), including support for their family, from the point of diagnosis, throughout a child's life, to death and beyond. Although significant advances continue to be made in terms of research and delivery of pediatric medical care, many children and their families continue to face a life-limiting illness or terminal diagnosis. Other children remain medically fragile and dependent upon around-the-clock medical care and technology throughout their lifetime. Comprehensive pediatric palliative care may include, but is not limited to:
Respite: The provision of short-term relief/support for primary caregivers enabling them to rest and attend to other obligations
Transition from Hospital to Home Care: Assistance, education, and support when a child leaves the hospital with new medication/equipment/treatment plan(s)
Pain and Symptom Management: A child may be admitted to the hospice to evaluate symptoms, manage pain, and implement new treatment modalities
End of Life Care: Compassionate and dedicated support for families when it becomes apparent that death is imminent
Grief and Bereavement Counselling: Provision of ongoing grief and bereavement support for families after their child’s death.
Pediatric palliative care may often be seen as more family oriented whereas palliative care for adults is viewed as primarily patient centered. Children receiving palliative care may have access to specialized services, which can include a recreation therapist, a child-life specialist, and/or a pediatric palliative care social worker. A death doula can also play a key role as part of the interdisciplinary team working with palliative and pediatric palliative clients (and families) by providing additional comfort, respite, and support.
Although there are pediatric palliative care programs as well as pediatric hospices located throughout Canada, receiving care in their own home environment (if medically possible), may often be the most comforting option for children and youth receiving end-of-life care. In the home setting, death doulas can serve not only the child but also their families by simply being an overall caring and supportive presence in their lives.
It is important to remember that birth and death are the bookends of life. Just as we welcome birth, we must also be able to confront death. The role of a death doula is to inform, support, and companion those at the end of their lives whether that life was long or far too short.
Anyone interested in becoming a death doula can register for HHA's Death Doula certificate program here. The next training available weekend is June 2-4, 2023.
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Lori Forrest is a Child and Youth Worker, a Personal Support Worker, and an HHA death doula candidate working towards completing the certificate program.
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