Making health-care decisions for children
Consent and capacity are two concepts that relate to an individual’s ability to make decisions. When children are young, parents or caregivers make most of the decisions for them. In general, as children get older, they are able to make more decisions for themselves.
The key to medical decision-making for children is sharing information. The health-care team will answer questions and explain the risks and benefits of the procedure or test to parents, guardians, and children so that they have the necessary information to make decisions.
What is consent?
Consent means giving permission for something to happen or agreeing that someone will do something for you on your behalf. Giving consent is like agreeing to something ahead of time. In health care, individuals are asked for consent before tests, procedures, surgery, treatment or participation in research, after they have been informed of the benefits and risks. For children, many medical decisions are made by adults (typically parents, caregivers or legal guardians) until they are mature enough to make their own.
While giving consent involves agreeing to something ahead of time, you can choose to talk more about what you agreed to at any time during treatment.
Who gives consent?
Who can give consent for medical decisions for children varies from country to country. In some provinces in Canada, children who are fully capable of understanding the options given to them have the right to make decisions about their own treatment. Different provinces have laws about the age at which children can make these decisions. In general, consent for treatment, procedures or research for babies and young children is requested from parents, caregivers or legal guardians.
How is consent given?
Sometimes giving consent is as simple as saying yes or showing you agree. For example, you consent to a routine blood test by showing the phlebotomist (the person who collects blood) your arm. For your child, you may consent to having them examined by holding them on your lap while a health-care provider looks in their ears. This is called simple or implied consent.
When a test or therapy has more potential side effects, you will be asked to give formal verbal consent, such as before a blood transfusion or immunization.
You will be asked to give written consent by signing a form that is then kept in the health record before:
- some procedures and tests such as biopsies
- surgery, radiation therapy or chemotherapy
- any procedure that requires a general anesthetic
- taking part in a research study
Before consent is given, parents, caregivers or legal guardians will need to fully understand what they are agreeing to. Your child’s health-care provider will explain:
- the reasons for the test, therapy or research study
- what exactly will happen and when
- the potential benefits of the test or therapy or of taking part in the research study
- the potential risks
- other treatment options
- what would happen if one chose not to have the test or therapy or take part in the research study
Sometimes parents or caregivers may also be given a sheet with all this information that has been discussed. It is important and helpful that parents, caregivers and children ask questions about the test, treatment, procedure, surgery or anesthetic to ensure that they understand the information provided.
What else should you know about consent?
- Giving consent is completely voluntary and decision-makers can change their mind at any step in the process.
- Even if a parent or caregiver gives formal consent, it is helpful to engage children in the process by asking them for assent. Assent means that a child understands and agrees with a parent or caregiver’s decision to give consent. Children or teens may give assent just by saying yes or by signing a form. Assent may look different depending on the maturity of the child and the nature of the treatment. For example, a child may not be happy about or understand why they are receiving an injection, but they can decide which arm will be used.
- Consent to treatment decisions for children should always be based on choices that are in their best interests.
What happens in the event of an emergency?
In the case of an emergency, when treatment needs to go ahead and the person who should give consent is unavailable, every reasonable additional effort must be made to contact the parent or guardian. If treatment cannot wait, the health-care team can decide whether to go ahead without consent. This decision is recorded in the patient’s health record.
What is capacity?
Capacity relates to an individual’s ability to make decisions. While babies cannot make decisions for themselves, as children get older and become more mature, they have the capacity to make small-scale decisions. Capacity is not a “blanket concept,” meaning just because a child or teen is capable of making one decision, it does not mean they are always capable of making every decision.
The capacity to make some decisions is often related to age. For example, one must be 18 years old in order to vote in an election. However, capacity is also determined by how much an individual understands. For example, a teen must be 16 years old in Ontario to get a learner’s permit to drive, but they cannot obtain a full licence until they have passed two driving tests.
In health care, capacity has a special definition with two parts:
- Understanding: a health-care provider needs to know that an individual understands the information about the decision you are going to make.
- Appreciation: a health-care provider needs to know that an individual appreciates what the decision and the consequences of the decision mean.
In Ontario, unlike driving and voting, there is no minimum age to consent to medical treatment. Every person, regardless of their age, is assumed to be capable to make decisions about their health unless a health-care provider determines they are not capable.
What is shared decision-making?
A family-centred shared decision-making model incorporates medical information shared by the health-care team, values and beliefs shared by the patient and decision-makers and an acknowledgement of the capacity of the child or teen to participate in a specific decision. This collaborative approach respects the responsibility and authority of the parent or legal guardian, the emerging capacity of a child and the role of the health-care team in sharing information and expertise with which the family can make health-care decisions.
This model relies on open and ongoing communication. In situations where there is conflict between two decision-makers, or between decision-makers and the health-care team, assistance and involvement of spiritual leaders and bioethicists may be helpful. Conflict resolution in health-care decision-making may vary between different jurisdictions.