What is Pediatric Palliative Care

“While the number of children requiring palliative care is small relative to adults, the impact of a child’s serious illness and death is extensive. It affects the family as well as the entire community. Moreover, the illnesses that affect children are quite distinct. Palliative care for children must comprehensively address the body, mind and spirit, and requires an inter-disciplinary approach; it is also inclusive of parents and siblings.”

[For more information, see PedPalASCNET, A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care].

In their Pediatric Hospice Palliative Care | Guiding Principles and Norms of Practice, the Canadian Hospice Palliative Care Association defines pediatric hospice palliative care as

“…an active, holistic approach to care which focuses on relieving the physical, social, psychological and spiritual suffering experienced by children and families  who face a progressive, life-threatening condition, and helping them fulfill their physical, psychological, social and spiritual goals. Its philosophy is to provide optimal comfort and quality of life, and sustain hope and family connection despite the likelihood of death. Pediatric hospice palliative care aims to provide comprehensive care for children and their families through the living, dying and grieving processes. It affirms life and regards dying as a process that is a profoundly personal experience for the child and family. Pediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death.”

The Role of the Pediatric Palliative Care Team

When a child or adolescent receives palliative care, the family is the unit of care. Delivering age-appropriate care is vital. When a child or adolescent has a life-threatening illness, the tendency may be to treat him or her as developmentally younger than their chronological age. This could cause the child to suffer emotionally and/or socially. Including the child in developmentally appropriate discussions about the illness, and including the family unit, creates an open dialogue and trust between the palliative care team, the family and the child. Open communication is important, especially as the disease advances.  Providing information allows the family, and the child, to make informed decisions. Health Care providers benefit from training in discussions of death.

One of the concepts identified by families as an outstanding practice in palliative and end-of-life care is getting to know each child personally – their likes and dislikes, and what makes them an individual. This way, interventions can be tailored to their needs. Individualized care acknowledges both the child and the family unit’s beliefs and cultural practices, and respecting diversity.

The pediatric palliative care team provides comfort and support to reduce or alleviate suffering. Physical and psychosocial symptom management is required.  The Canadian Psychological Association’s “Psychology Works” Fact Sheet: Pediatric Palliative Care speaks to “Interdisciplinary palliative care, including effective communication, psychological support, spiritual care, comprehensive pain and symptom control, and grief and bereavement support are appropriate from the time of diagnosis. Palliative care goals and life-prolonging goals can be pursued simultaneously. “

The pediatric palliative care team generally consists of many team members – physicians, nurses, personal support workers, clinical psychologists, social workers, dieticians, physical therapists, pharmacologists, spiritual leaders and respite caregivers. Interdisciplinary care across settings can be extremely beneficial to the child and the family unit.

Shared decision making (again, developmentally appropriate) allows the child and the family to actively participate in their treatment and decisions in regards to their care.

Worth a watch: Little Stars is tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses.  Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

Education and Resources

• Canadian Network for Palliative Care for Children

• Pediatric Hospice Palliative Care Guiding Principle and Norms of Practice

• Ian Anderson Continuing Education Program in End-of Life Care (Toronto, Ontario)

• Palliative Care Links and Resources (Canadian)

• Canadian Hospice Palliative Care Association

• Caring for Patients with Breakthrough Cancer Pain – Learning modules

• Division of Palliative Medicine, Dalhousie University

• Fraser Health – Hospice Palliative Care Symptom Guidelines

• Health Canada Web Site About Palliative Care

• Palliative.Info (Palliative Care Links and Resource Material)

• American Academy of Hospice and Palliative Medicine

• End of Life/Palliative Education Resource Center- Fast-Facts

• Ian Anderson Continuing Education Program in End-of-Life

• The Canadian Network of Palliative Care for Children

Children and Youth

• Centre for Pediatric Pain Research

• CT (The Association for Children with Life-Threatening or Terminal Conditions and their Families)

• End of Life Care for Children

• Griefworks BC – Separate areas for kids, teens and adults.

• The Dougy Center for Grieving Children & Families – How to approach children and teens who are grieving.

• The Initiative for Pediatric Palliative Care