Caring for the Whole Child: Insights into Pediatric Palliative Practice

This October at Life and Death Matters, we’re shining a spotlight on pediatric palliative care. Care for children and youths with life-limiting conditions that blends clinical excellence with profound compassion. Whether you’re a PSW offering bedside comfort or a nurse coordinating care, your role in supporting these children is vital.

What is Pediatric Palliative Care?

The World Health Organization defines palliative care for children as “the active total care of the child’s body, mind, and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.”

In Canada, palliative care for children is a holistic approach – enhancing children’s quality of life and supporting families through illness, dying, and bereavement. It affirms life, honours the child as a whole person, and creates space for joy, play, and connection, even in the midst of uncertainty.

How is Pediatric Palliative Care Different from Adult Care?

Pediatric palliative care is not simply the same as adult care. Children and youth care has other considerations, such as their evolving identity, relationships, and capacity for joy.

Key differences include:

Developmental needs – children’s and youth’s understanding of illness, communication styles, and emotional development vary widely by age and stage.
Duration of care is perinatal to youth – palliative care often spans months or years, evolving as the child grows.
Family dynamics – parents and caregivers are central, not just decision-makers, but partners in care.
Tailored symptom management – pain and symptom relief must be adapted to developing bodies and changing needs.
Holistic planning – child and youth care includes opportunities for play, learning, and social connection, not just medical support.
Core purpose – relieve suffering, nurture life, however long or short, with dignity, joy, meaning.

The Role of PSWs and Healthcare Professionals

Personal Support Workers (PSWs), nurses, and frontline healthcare professionals are essential companions in a child’s and youth’s palliative journey. Their contributions go far beyond clinical care. They help children and youth’s to live fully, even in the face of serious illness. As a PSW, nurse or healthcare provider you:

Provide comfort and routine in unfamiliar or clinical settings, helping children and youths feel safe and supported.
Listen deeply to children and families, building trust and emotional connection.
Recognize signs of distress or change, and communicate observations to the wider care team.
Manage symptoms such as pain, anxiety, nausea, spasticity, and seizures with skill and sensitivity.
Create moments of normalcy through play, conversation, and presence, even during hospital stays or treatments.
Coordinate care across providers, improving communication and reducing overwhelm for families.
Support siblings and extended family, offering resources and referrals for emotional and psychological care.
Guide families through difficult decisions, ensuring choices align with their values and goals.
Help families care for children at home or closer to home, offering practical advice and 24/7 support.
Advocate for dignity, choice, and quality of life, especially when families feel uncertain or overwhelmed.

PSWs and healthcare professionals are uniquely positioned to build trust, offer emotional support, and help families navigate grief, uncertainty, and hope. They are companions on a deeply personal journey that is central to the success of palliative care for children and youths.

The Core Care Pathway: A Framework for Excellence

The Core Care Pathway for Children with Life-Limiting and Life-Threatening Conditions offers a structured, child-centred approach to care from diagnosis through bereavement. It is designed to guide professionals to deliver coordinated, family-centred care for children with complex needs. It outlines key stages of care, including:

Early identification of palliative needs, alongside active treatment
Collaborative planning, involving families and multidisciplinary teams
Ongoing support, tailored to the child’s and youth’s evolving condition
End-of-life care and bereavement support, with sensitivity and respect.

It ensures clear communication, coordinated care, individualized plans rooted in family values, cross-sector support, and parallel planning for uncertain futures. This pathway is essential for creating responsive, integrated services that honour each child’s and youth’s unique journey.

Advance Care Planning in Child Settings

Advance care planning (ACP) in pediatric care is a sensitive and ongoing conversation. It is a key part of children’s and youth’s palliative care. One that involves open and honest conversations about goals of care, values, and preferences. These conversations ideally start early in the illness journey.

According to the Canadian Paediatric Society, it involves:

Age-appropriate communication with the child
Respecting the child’s changing capacity to participate
Supportive shared decision-making with parents under stress and caregivers
Considering cultural, spiritual, and emotional contexts
Early and clear documenting of care goals and preferences around treatment, comfort, and end-of-life care.

ACP is not a one-time event. It’s a dynamic process that responds to the child’s condition, attunes to family needs, and is grounded in informed, compassionate decision-making.

PSWs and healthcare professionals play a vital role in supporting these conversations and helping families navigate uncertainty with empathy and clarity.

A Call to Reflect and Recommit

This October, let’s take time to reflect on what child palliative care means in practice. Whether you’re supporting a child or youth at home, in a hospice, or in a hospital, your role matters deeply. Your presence, empathy, and skill help families to feel less alone. You support every child and youth to receive care that honours their life, their voice, and their journey.

References

Canadian Hospice Palliative Care Association. Pediatric Hospice Palliative Care: Guiding Principles and Norms of Practice. Ottawa, Ontario; March 2006.

Canadian Paediatric Society. Goals of care conversations and advance care planning for paediatric patients living with serious illness. Ottawa, ON: Canadian Paediatric Society; 2024. Available from: https://cps.ca/en/documents/position/advance-care-planning