Download Children’s and young people’s rights in health care settings (PDF 113Kb)
21 October 2010
Thank you for the opportunity to provide comment on the draft charter of children's and young people's rights in health care settings. I commend the expert reference group of Children's Hospitals Australasia for producing a clear and concise explanation of the rights of young people in healthcare settings. I hope the following comments are of assistance.
What's best for you?
In this section you refer to the requirement that everyone involved in the care of a child should put the child's wellbeing first. I suggest you replace this with the term used in the Code of Health and Disability Services Consumers Rights (the Code) which is "best interests". Best interests and wellbeing may differ in the healthcare setting, as acting in a child's best interests may make them more unwell in the short term.
Your right to information
I suggest the right to information is set out before the rights to be heard or to give consent. I note this section requires children to be given full information about their condition. I suggest this is rephrased as "giving such information as is reasonable" because it may not be possible or practicable to give full information to a child.
It is stated that the child should be provided with choices for treatment where available and realistic. I suggest it is made clear that where the child is not competent to give consent a parent is able to consent on their behalf. Accordingly if an incompetent child expresses a choice, for example, resists being given an injection, the parent's consent may override the child's refusal.
Have your say and be heard
I suggest it would be helpful to give an example of a situation where it would "break the rights of others" if a child shares what they are thinking and feeling.
This section states "you have the right to have your views heard, considered and taken seriously especially when decisions are being made that affect you". In my view, this is good practice, but I note this is not a specific right in the Code. Right 6(1) of the Code provides that every consumer has the right to information that a reasonable consumer in that consumer's circumstances would expect to receive. Consumer includes the person entitled to give consent on behalf of another.
It is desirable that a child has the right to have his or her views heard, considered and taken seriously, but this is not legally a right, and the extent to which parents take the views of the child into account may vary.
Your right to the best health care
Resource constraints may mean that the best health care is not available and, as is provided in Clause 3 of the Code, a provider has to take reasonable actions in the circumstances. The circumstances include the consumer's clinical circumstances and the provider's resource constraints. I suggest following "available" you consider adding the words "in all the circumstances".
Your right to be you
Right 1 of the Code provides that every consumer has the right to be treated with respect and every consumer has the right to have his or her privacy respected. However with regard to the statement "that you have the right to special protection that makes sure you can always practice your ways of life" I note that a number of Court decisions have decided that in circumstances where children and/or their parents hold religious views prohibiting the use of blood products, courts have ordered that the blood products be administered in order to save a child's life. Accordingly there may be circumstances where children may not be able to practice their way of life.
Your right to be with and guided by your family
This section contains the statement "you have the right to be with friends, unless this breaks the rights of others or will harm you". It is likely that the parental authority extends to restricting the time that a child may spend with their friends, even if they are not being harmed by spending time with their friends. It is unlikely that there is a right for a child to spend time with their friends.
Participate in decisions
I am unclear what is meant by "the right to take part in decisions includes health services involving groups of young people and planning services and policies that impact on young people". Although it is desirable that the development of policies with regard to young children takes into consideration the views of young people, it is unlikely that there is a right to this level of participation and resource constraints may limit the extent to which this is possible.
Your right to be protected from harm
This section states that the child's informed consent should always be obtained before taking part in teaching or research. Right 9 of the Code requires if the consumer is to participate in research, consent must be in writing. However, a parent or guardian may consent on behalf of an incompetent child. Although it is desirable that a child's views are considered, to the extent the child is able to express an opinion, there is no requirement that an incompetent child give informed consent to research.
This section contains a statement that a child has a right to keep their social life private. It is unclear what is meant by this statement, but in some circumstances parents may have a strong interest in knowing the details of their child's social life, for example, if the child is using drugs or alcohol.
Similarly, necessary medical treatment may involve a loss of bodily privacy for a child. The statement "your parents do not have an automatic right to information about your healthcare" is correct as parents do not have an automatic right to information about their children.
However, in order for parents to give informed consent to treatment of children they will require information about the child's healthcare. I note that Rule 11 of the Health Information Privacy Code 1994 provides that information may be disclosed if disclosure was one of the purposes for which the information was collected in the first place. In most cases if the information was collected directly from the child or a representative they would have been informed of the purpose at that stage.
So when health professionals are collecting information to treat a child whose parents or guardians will be asked to give consent, one of the purposes of obtaining the information is to disclose sufficient information to the parents or guardians for them to grant consent. However, the information that is disclosed should not be more than is necessary to enable the parents or guardians to grant consent.
If disclosure is not anticipated, so it is not one of the purposes for which the information was obtained, then right 6(1) of the Code gives the consumer a right to certain information. A consumer is defined as including a person entitled to give consent on behalf of the consumer which includes guardians of a child under the age of 16.
In addition section 22F of the Health Act 1956 requires information to be disclosed to representatives on request unless there is a lawful excuse not to disclose.
Fundamentally a child's right to privacy will vary according to the level of competence of the child and the circumstances.
Your right to education, play, creative activities and recreation
This section contains the statement "you have the right to rest, play and be involved in things you enjoy like sports, music, arts, drama and cultural activities". There is then a proviso that this may not apply if those things may harm the child. However, there are also practical considerations, in that the child's family may not be able to afford such activities or in some other way it may not be practical or desirable for their child to participate. I suggest that this is not expressed as a right.
Trained coordinated health care
Right 4(5) of the Code provides that every consumer has the right to cooperation among providers to ensure quality and continuity of services. However, this is subject to the proviso mentioned above- that the provider is not in breach of the Code if they take reasonable actions in the circumstances.