What is palliative care for infants, children, and youth?
Palliative care for infants, children, and youth is also called pediatric palliative care. It's a type of care for children who have a serious illness or chronic complex health problem that may lead to death before young adulthood.
When a child has a serious illness, it's often hard to know how things will turn out. Families have many decisions to make and lots of questions about the future. Palliative care teams can give an added layer of support to children and families. This care focuses on helping you give your child the best quality of life possible and on supporting your whole family. Palliative care for children can be given along with care to manage or cure the disease. Each child is special, and you and the health care team work together to make a care plan that's just right for your child. The care plan also focuses on your family's values and goals for living in the context of your child’s serious illness.
What does this type of care do?
In Alberta, there are pediatric palliative care teams at the children's hospitals in Edmonton and Calgary. These specialist palliative care teams work with your other health care providers in the hospital and community. They can also meet the child, family, and health care providers by Telehealth videoconference across Alberta.
Some palliative care services are for children living with serious conditions, and their families. Palliative care also supports children who are having distressing symptoms during treatment as well as children who are dying. This might be in hospital, at home, or in a children’s hospice like Rotary Flames House.
Another important part of pediatric palliative care is specialized grief support for family members when a child dies suddenly or after a long illness. This is also called bereavement support.
Does this type of care support the whole family?
When a child needs special care because of a serious illness, it is very hard on parents, brothers and sisters, grandparents, and other caregivers. Palliative care for children and youth supports your whole family and makes sure everyone gets the right care. This helps you make decisions and plan care throughout your child's illness. Having a plan can help with anxiety, stress, and fears for the future.
When is a good time to get palliative care for my child?
Your child can get a referral for palliative care at any time during the illness (e.g., when your child is diagnosed or when you find out the disease might be serious). Because it's hard to know what will happen with a childhood illness — if it will get worse, stay the same, or get better — it's a good idea to get a referral as early as possible. A referral to palliative care may help you to:
- better coordinate your child's care
- have more time to plan your child’s care
- get the best possible support for you and your family
How do I get a referral?
If you think palliative care could help your child and family, talk to your child's doctor. The doctor can make a referral. An appointment will be made to meet you, your child, and your family.
How can I learn more about palliative care services for children and youth in Alberta?
There are 2 pediatric palliative care teams in Alberta. The Children's Hospice and Palliative Care Service (CHaPS) is in Calgary at Rotary Flames House, right beside Alberta Children's Hospital. The ChaPS team sees children in hospital, hospice, clinics, and sometimes in their homes. Rotary Flames House is a children's hospice with a home-like setting. It gives short breaks for children and families (respite), day programming for children with serious illnesses and complicated medical needs, and care for children at end-of-life.
- CHaPS palliative care: 403-955-5460
- CHaPS grief support: 403-955-5463
The Aid for Symptoms & Serious Illness Support Team (ASSIST) is based at the Stollery Children's Hospital in Edmonton. It's a team of 2 doctors, a nurse, and a grief counsellor. The team provides care to children in intensive care, a pediatric ward, a clinic, or if your child is too ill to travel because of advanced illness, in your home.