Most children transition from pediatric services to adult healthcare services when they turn 18 or 19. Their pediatrician, if they have one, will often transfer their care to a family physician. Family physicians will refer them to adult specialists if needed. Sometimes, a pediatrician or pediatric specialist will transfer care directly to adult specialists. Young adults who need emergency or hospital services will generally start going to a general hospital or adult facility. 

While these changes are generally true, there are provincial, regional, and even institutional (hospital or clinic) differences in the age limit for pediatric care. There are also some specialists who see both children and adults. It’s important to find out how your child’s care will change well before they reach the age of 18.

Some children with serious medical conditions now live much longer than previously expected because of changes to healthcare and advances in technology. It can be hard for them and their families to leave the care of pediatric specialists who understand their rare diseases and conditions. It may also be hard to find adult healthcare providers who have experience with the young adult’s condition. This transition to adult care can be very difficult for patients and caregivers alike. 

There is no one age when a young person can start making all their own decisions. Across Canada, there are different ages for different kinds of activities, such as driving, drinking and voting. There are also different ages when children are allowed to “give consent” for things like sexual activity and decisions about healthcare. 

In most provinces, there is no legal age of consent for healthcare. When a child is very young, parents and guardians usually work with healthcare providers to make decisions for them. In most healthcare centres, decisions are made by parents and healthcare providers in a way that respects or supports the child.  As children get older, they may be included in making decisions as they begin to develop the “capacity” to take part. 

Note: Mature minors have a right to decide on healthcare treatment that is in their best interest and do not need parental consent. A mature minor is a person below the age of consent who has demonstrated decision-making skills and whose physical, mental, and emotional development makes them capable of fully understanding the nature, potential harm, benefit, and consequences of agreeing to or declining medical treatment.

Capacity means a child has the ability to understand information about:

• Their health and condition
• The treatment that is being suggested
• What might happen if they give or refuse consent for treatment

If a child does not have the capacity to make their own decisions, a parent or guardian or another substitute decision-maker will do that for them. But it’s never too early to include the child in the decision-making process, even if they won’t be making the final decisions. In fact doing so is what helps them begin to develop capacity and can improve the likelihood that they will comply with their medical treatments.

“We were trying to make plans, about how were we going to make the transition to adult care if he’s turning 18. One of the managers called a meeting of all Kevin’s team members to talk about the transition plan. And that meeting did not include Kevin and it did not include me. We weren’t informed, until after the meeting happened, and that’s because one of our team members was extremely angry that we weren’t there and weren’t informed and told us. And so, after having raised a really cool kid, and doing all this work for him to have autonomy over his life-- as much as he could with what he had — after all that, his decision-making, his cognition was completely ignored. Ultimately his key doctors wrote a letter and said, “Why make this change? We need to do a compassionate extension.” And they approved it and that took a lot of pressure off.” – Kim, mother of Kevin

A substitute decision-maker makes medical decisions for a person who cannot make their own decisions either because they don’t have the capacity or because they are too ill. Every province has a list of people who are allowed to be substitute decision-makers. For most children, parents or other guardians act as substitute decision-makers.

If your child is at the age when they can make legal choices in your province or territory, they may wish to:

• Make a will 
• Sign a legal document to allow someone else to make decisions about their health and personal care
• Sign a legal document to allow someone else to manage their finances and property

The documents that give authority for health and personal care and for finances and property have different names across Canada. They may be called, power of attorney, health directives, or mandates. Each province and territory also has different rules about the age your child must be to sign these documents and rules about how to assess their capacity to choose a substitute decision-maker. 

If your child is legally an adult, these documents can be very useful. They give you (or another substitute decision-maker) the authority to do things like renew a health card, or manage your young adult’s income and banking. They also allow you to make decisions when your child is too ill or incapable to make them. 

Resources

• Advanced care planning across Canada - Canadian Virtual Hospice

Many children who are seriously ill receive supports from their schools, community, or social services. These supports may end or change when your child is between the ages of 18 and 21, depending on where you live. At this time, they may qualify for other supports as they transition to adult care.

Government and employment benefits and financial supports may also end or change as your child gets older. These benefits include: medical and dental benefits, tax credits and rebates, and income supports. Your child may also qualify for new benefits such as adult disability income or employment benefits for disabled adult children.

Start early. Age 16 isn’t too early! Here are some key strategies support your child as you make the transition to adult care:

• Learn about your child’s condition and what to expect as they get older. 
• Review your current funding, benefits and tax credits. Apply for new funding and benefits.
• Find a family doctor if you don’t already have one.
• Work with your child’s healthcare team to identify new adult care providers and services. 
• Keep a record of the names and contact information of new specialists, caseworkers, and rehabilitation professionals. Find out if you have to set up your first appointments or if their office will contact you.  
• Get copies of your child’s medical records, assessments, reports, and discharge notes. If you have access to their electronic health record, connect to this resource.  
• Find out if you need to set up a power of attorney or if you should help your child choose a substitute decision-maker.

Increasingly, pediatric hospitals are creating resource centres specifically aimed at helping patients and families make the transition to adult care. If no such centre exists, a social worker can often help you take the necessary steps that will enable you to remain your “adult” child’s substitute decision-maker and/or power of attorney. Ask them to help you fill out forms and find appropriate services.

Resources

• Advanced care planning across Canada - Canadian Virtual Hospice
• Medical decision-making in paediatrics: Infancy to adolescence - Candadian Paediatric Society

• • Table 1 - Summary of Canadian law regarding age of consent and advance directives

• Giving power of attorney - Government of Canada
• Decisions and capacity - Justice for Children and Youth
• Transition to adult care, family toolkit - BC Children's Hospital
• Advance care planning across Canada - Speak Up