Paediatric Advanced Care Team

Our team wants to help make every day as good as it can be for children with serious illnesses and their families. By getting to know more about a child, their family and what is important to them, we can often find ways to positively impact a child’s quality of life.

We work with a team of professionals who can be involved with a child at the hospital or at home, to improve quality of life. This team includes music therapists, a massage therapist, an art therapist, spiritual care providers, child psychosocial support providers and other community resources.

We can help families establish goals of care by identifying what is most important to them and their child, and how their child’s care can reflect this given the circumstances they are facing. Over time, a child’s condition might change and as a result goals may change too. Our team can help support decision making and planning for the future. 

Families may be faced with difficult decisions, including ones about the possible use of medical technology (for example, devices to help with feeding or breathing) or organ transplantation. We will work families to help them make the best possible decisions that are in line with their specific goals of care.  

Children with serious illnesses and their siblings often have fears and concerns about what will happen over time. Our team can help facilitate these hard, but important, conversations. We help parents prepare to have these conversations with their children, and can also be present or help to lead these conversations if desired. These conversations help decrease fears by clarifying misconceptions or creating a plan to address specific concerns. 

We are also available to meet with siblings separately to address their own unique worries.  

Serious medical conditions may be accompanied by distressing symptoms, such as breathing difficulties, pain, nausea and vomiting and other sources of discomfort. We work with other teams that are part of a child’s care to reduce these symptoms as much as possible.

IMPACT (Infant Maternal Perinatal Advanced Care Team) meets with families during pregnancy when their unborn baby is found to have a potentially life-threatening condition.

We help support these families with decision making around the pregnancy and preparing siblings.

We also provide ongoing support to families after the birth of a baby, whether they are living with or dying from their underlying condition.

Should end-of-life care be needed, we will be there to provide families with support in their preferred setting – home, hospice, or hospital – to ensure their child’s comfort, help create meaningful legacies and memories, and to support families who are grieving.

Grief is experienced as soon as a path deviates from its expected course, which often begins from the time a child is diagnosed with a serious illness. Pathways Grief Support Coordinators are available to help families process and talk through that grief.

Our team will help finding ways to tell your child/patient’s story. Memory making and legacy creation can include family photos, handprints, and hand moulds.

When a child dies, grief support coordinators are also available to help with funeral planning and other resources and support that families requires, both within the hospital and in the community. 

Ongoing grief support is available both individually and through group events and remembrance ceremonies.

• Talking to kids about serious illness: The 6 C's and the 3 W's in English (PDF)
• Talking to kids about serious illness: The 6 C's and the 3 W's in French (PDF)
• Talking to kids about serious illness: The 6 C's and the 3 W's in Simplified Chinese (PDF)
• Talking to kids about serious illness: The 6 C's and the 3 W's in Tamil (PDF)
• Talking to kids about serious illness: The 6 C's and the 3 W's in Arabic (PDF) 
• SickKids VS Despair podcast: How should we talk to our kids about dying?
• The Waiting Room Revolution podcast: Interview with Shaindy Alexander (Child Life Specialist)

We recognize that when a child has a serious illness their care needs can be overwhelming at times and planning to meet their care needs is a dynamic process. Sometimes families can benefit from additional supports in the home setting, other times an alternative location of care may be preferred.

Medical respite involves caregiving for complex patients by well trained staff familiar with medical technology, usually for short periods of time (hours to days). Medical respite care programs offer families a break from the daily routine of caregiving. Respite is an essential component of paediatric palliative care. Enhanced respite funding is available for families who qualify through the Ministry of Health and can be used to reimburse a trusted friend, family member or other caregiver to watch a medically fragile child at home.

Here is a list of recommended organizations in Ontario:

• Emily’s House (Toronto)
• Holland Bloorview Kids Rehabilitation Hospital (Toronto)
• Safe Haven Respite Care (Toronto)
• Darling Home for Kids  (Milton)
• Kids Country Club (London and Cambridge)
• Roger Neilson House (Ottawa)

If you do not see a respite resource that is close to you, please speak with your care team to learn about other options.

• CaringTogether.life is a free platform designed to educate, support, and empower parents caring for a seriously ill child and those who are experiencing pregnancy or infant loss
• Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.

There are financial supports available to children with specific health needs. You can speak with your care team about whether you may be eligible for any of the following:

• ACSD (Assistance for Children with Severe Disabilities)
• EI Benefits for Parents of Critically Ill Children
• Easter Seals Society
• Jennifer Ashleigh Foundation
• Special Services at Home (SSAH)
• Trillium Drug Program
• Make-A-Wish Canada