Your child also has the right to be involved. In other words, caregivers must look after the best interests of the child and find out what (s)he wants. Children are also entitled to make their own decisions, particularly as they get older. At the age of 18, essentially all choices are up to them.
Both you and your child are to be given complete information and have the opportunity to state your opinions about treatment methods, etc. To make sure that you are fully aware and involved, you may need an interpreter, written material to read at home or other types of assistance.
A number of different Swedish laws stipulate the obligation of the healthcare system to provide children and their parents or legal guardians a say in their care. The most important provisions are in the Patient Act and the Health and Medical Services Act. Sweden is a party to the United Nations Convention on the Rights of the Child. The Convention makes it clear that all children are entitled to the best possible health care, as well as privacy, dignity, respect and the opportunity to make their voices heard.
Right to information
You and your child cannot participate in care-related decisions unless you receive all the information you need. Caregivers must fully inform you of the following:
- Your child's state of health
- The examination, care and treatment options that are available
- What aids are available
- What they hope to achieve with your child's care and treatment
- What risks your child has for developing various complications or adverse effects
- The methods are available to prevent injury or illness
There is no specific age at which children first have the right to be involved in decisions about their care. The most decisive factor is maturity, which may or not be solely determined by the child's age. For instance, a child with a chronic illness or disability may have acquired greater maturity to make health care decisions than others of the same age without such experiences.
The older a child gets, the more often it is that both s(he) and the parents or legal guardians must consent to the care that is provided. The caregivers in charge, usually in consultation with you, determine how and when your child should start participating in the decision-making process.
Information for children without your involvement
Under certain circumstances, your child and the caregivers may communicate directly without your involvement, although you may be aware that it is happening. For example, your child has the right to speak privately to a caregiver without your finding out what they talked about. If the conversation raises serious questions about the child's health or safety, the caregiver is obliged to submit a report to the municipal social services.
If your child is capable of taking the initiative to obtain health advice and counselling, (s)he can specify that you not be in the room or that you not be told what conclusions were reached. A child who goes to a youth clinic is entitled to decide whether anyone else can find out that s(he) has been there or read the medical records.
A child has the right to obtain individual support, advice and information about situations that concern the family. For instance, a member of the family may die, have a disability or suffer from a chronic physical or mental illness.
Care must meet the particular needs of children
A child must be cared for at a paediatric ward whenever possible. The healthcare system must also consider the particular needs of children by
- Ensuring that at least one family member accompanies a child who is hospitalised
- Suspending an examination or treatment at the request of the child in order to try again later on
- Allowing a child to help decide how medication is to be administered or how an examination is to be performed if there are several equally effective options
When children may not participate
There are circumstances under which a child may not participate in a decision, although (s)he may have the right to influence parts of it. Decisions that require medical expertise fall into this category. Neither you nor your child may refuse care that is provided under the Communicable Diseases Act, Care of Young Persons Act or Compulsory Mental Care Act.
Your rights as a guardian
You are entitled to refuse certain kinds of treatment on behalf of your child. You may also change your mind after having given your consent.
It is up to the caregiver in charge to resolve any disagreements among the child and parents or legal guardians. The Social Services may have to appoint a medical guardian to clear things up.
You can decline to participate if you regard a situation as too stressful or difficult. For example, a caregiver may ask you to hold your child down during an uncomfortable examination or treatment session. You might prefer to console and support the child before and afterwards instead.
You have the right to spend the night near your child at a hospital. The ward is required to show you around the ward, and provide information about the guidelines and procedures that are in effect there.
You are entitled to a copy of your child's medical records, but the child's consent is increasingly required as (s)he becomes more mature.
What guardians cannot decide
Under certain circumstances, caregivers are not obliged to take your wishes into consideration. For instance, you might want
- Your child to receive therapy that is not supported by scientific evidence or clinical experience
- To refuse life-saving measures on behalf of your child
- To prevent other caregivers from seeing information in your child's medical records
What to do if you are dissatisfied
If your child has been improperly cared for or has not been treated with courtesy and respect, the first thing you should do is contact the caregivers at the clinic or ward involved. You can also get in touch with the Patient Advisory Board, which will help you speak with the caregivers in charge and obtain information about how to report medical malpractice and other incidents.