Palliative care for infants, children, and youth is called pediatric palliative care. It's an approach to care for children who have a life threatening or life-limiting illness, distressing symptoms, or a chronic, complex health problem that may lead to death before young adulthood.
When a child has a serious illness, there is a level of uncertainty that can be expected. Families have many decisions to make and usually have lots of questions about what to expect. Palliative care teams can give an added layer of support to children and families throughout their medical journey. This care focuses on helping you give your child the best quality of life possible and supporting your whole family.
Palliative care for children can be provided alongside your child's regular care team. Each child is special and unique. You and the healthcare team will work together to make a care plan that's just right for your child. The care plan will focus on your family's values and goals for living in the context of your child's serious illness.
An 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.
Where pediatric palliative care is given
In Alberta, there are pediatric palliative care teams at the children's hospitals in Edmonton and Calgary. These specialist palliative care teams work with healthcare providers in the hospital and community to provide patient focused care. The team can also meet with you, your child, and your healthcare providers by telehealth videoconference across Alberta.
Palliative care can be provided in hospital, at home, or in a children's hospice like Rotary Flames House.
Support for the whole family
When a child needs special care because of a serious illness, it can be challenging on the family as a whole. Palliative care for children and youth provides support for your whole family and makes sure everyone gets the right care. Having your questions answered and knowing you have someone to turn to, can help you make challenging decisions and plan care throughout your child's journey.
Getting palliative care for my child
Your child can be referred for palliative care at any time during the illness. This includes as early as when your child is diagnosed or when you find out the disease might be more serious.
Early referral to your local Palliative Care team can help with:
- better coordination of your child's care
- more time to plan your child's care
- getting the best possible support for you and your family
If you think palliative care could help your child and family, talk to your child's doctor to make a referral. An appointment will be made to meet you, your child, and your family.
Palliative care services for children and youth in Alberta
There are 2 specialized pediatric palliative care teams in Alberta.
The
Children's Hospice and Palliative Care Service (CHaPS) is in Calgary at Rotary Flames House, near the 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 can give 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 multidisciplinary team with physicians, nurses, and psychologists. 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.
ASSIST: 780-407-7825
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