Child's play
Responding to requests for the disclosure of children’s medical records is far from straightforward. Dr Brendon Gray looks at the implications for trust and confidence
“A sound discretion is not so much indicated by never making a mistake as by never repeating it.”1
Looking after sick children and their families is a rewarding part of medical practice. It is also an area of medicine that poses some unique challenges. A doctor’s primary duty of care is of course to the child as patient, but there are also legal and ethical duties owed to the child’s care givers. At times, the duties owed to these different parties in the therapeutic relationship may conflict – perhaps nowhere is this more apparent than with the issue of patient confidentiality and information privacy.
Providing good medical care to children requires a relationship of trust and confidence between the provider, the child and their family. In situations where one parent is not providing day-to-day care for a child because the parents are estranged, this relationship may be threatened when the estranged parent requests access to his/her child’s medical records. Doctors requesting guidance with this issue is one of the more frequent subjects of calls received on the MPS medicolegal helpline.
The law
Rule 6 of the Health Information Privacy Code (HIPC) grants all individuals, including children, a right of access to information held about them by a health agency. Section 22F of the Health Act 1956 and rule 11(4) (b) of the HIPC also entitle an individual’s representative to request access to the individual’s health information.
For the purpose of privacy legislation, an individual’s representative includes that individual’s parent or guardian, where the individual is under the age of 16 years. While parents of children under the age of 16 years are therefore entitled to request access to their children’s medical records, it is very important to note that they have no automatic right to receive that information. This is because rule 11(4)(b) of the HIPC also allows the refusal of a request for disclosure, where the child either does not want the disclosure to occur or where the disclosure would not be in the child’s interests.2
Once a GP practice has taken a call, they have accepted responsibility, and all calls seeking clinical advice should be documented. However, Dr Matthew Thompson, a GP and Senior Clinical Scientist at the University of oxford, is aware of the difficulties in remote, non-professional triage.
“What we are seeing in the UK goes against the medical tradition of taking a detailed history in a face-to-face consultation. It is difficult for experienced GPs to diagnose remotely; I would argue it is almost impossible for an untrained call-centre worker to make that same diagnosis accurately.”
Preliminary issues
When a child’s parent who is not the day-to-day carer of the child requests access to the child’s health information, there are a number of preliminary steps to take before considering whether the information should be released. It is important to note that unless the request is urgent (and individuals are obliged to explain why a request is urgent), there is time to consider the request (20 working days from the time of the request).
First, as with any health information access request, it is important to establish the identity of the person making the request. It is quite possible that the estranged parent requesting access will not be known to you.
In such situations, you are entitled to ask the individual for identification. Assuming that the identity of the person making the request is clear, the next step is to then consider whether the individual has the authority to make the request. As explained, a parent is entitled to request access, but it may be necessary to establish that the individual really is the child’s parent. Often this can be achieved if the individual produces the child’s birth certificate and they are listed as one of the parents.
Consent of the child
The HIPC (like the Code of Health and Disability Service Consumers’ Rights) does not recognise an “age of consent” and children are presumed competent to refuse disclosure of information to their parents. The general approach is that a child is entitled to give consent to the release of information to the extent appropriate to the child’s level of competence, an approach very similar to that employed in relation to consent for treatment.
When asked to provide information to parents about older children, members would be wise to consider whether the child is competent to give consent to the release of the requested information. Often it may well be appropriate to ask the child for their views.
Disclosure in the interests of the child
Where disclosure of information would not be in the child’s interests, the HIPC gives doctors discretion to refuse a request by the parents or guardians. While it may create difficulties to go against the wishes of the adult in this situation, the discretion to refuse access on these grounds can also help protect the therapeutic relationship of trust and confidence built up with a child and their immediate carer. However, exercising this discretion may be no easy matter.
When considering whether disclosure of the information would be contrary to the child’s interests, it is important to consider a variety of factors. For example, the type of information contained in the notes (particularly whether the information is sensitive or if there is information contained about individuals other than the child), knowledge of the child’s day-to-day living arrangements and the purpose for which the disclosure is required.
The Privacy Commissioner has in the past upheld decisions by health agencies to withhold information from parents. Recently, the Commissioner ruled that a DHB was entitled to deny a father access to some information about his 14-year-old son, on the basis that full disclosure of the information might harm the boy’s recovery from a life-threatening psychological condition.3
In another case, a 14-year-old girl was estranged from her parents. The parents requested access to a hospital specialist’s report, which contained sensitive information about the girl.
The Commissioner ruled that disclosing the information might discourage the daughter from discussing sensitive issues with health providers and would thus be contrary to her interests. The hospital was therefore entitled to withhold the information.4 When matters are not amicable between a child’s parents, it may be no easy matter to determine whether disclosure of the child’s information to the parent who is not providing day-to-day care is in the child’s interests. On the one hand, providing the information may undermine the therapeutic relationship of trust and confidence that you have built with the day-to-day carer if she (it is often the mother in this situation) does not want the information released.
On the other hand, the information may be required by the other parent who intermittently looks after the child and needs to know their medical history. One situation where disclosure may not be in the child’s interest is where there are custody/access proceedings forthcoming and the child’s health may be used as “leverage” in such proceedings by one or both parents. The discretion whether to disclose the health information must be determined on the basis of what is in the child’s best interests and all requests should be dealt with on a case-by-case basis, using your knowledge of the family circumstances.
Guardians and information access
The issue of guardians requesting access to a child’s medical records can be complex, but generally a child’s guardian is entitled to request disclosure of medical information, regardless of whether the child resides in his or her day-to-day care. Issues of the child’s consent and the child’s interests being protected are also relevant to guardians requesting access to health information.
The duties, powers, rights and responsibilities of guardians are now set out in the Care of Children Act 2004. Often both parents of a child will be joint guardians, although there may be some exceptions. People other than the parents (for example, grandparents, foster parents, partners of parents) can apply to the court to be appointed guardians. In all such cases, a sealed court order should be available for inspection to determine if a person requesting access to a child’s notes is indeed a guardian. Guardianship rights may also be removed by the courts.
In situations where children are adopted, the birth parents’ legal rights are extinguished and legally it is as though the child was born to the adoptive parents. In New Zealand, it is not uncommon for there to be informal arrangements for the care of children by persons other than the parents – for example, whangai arrangements within Maori families. It is important to note that unless court orders have been made, the birth mother and father usually remain the child’s guardians. As a healthcare professional looking after children, it can be tricky to determine if an adult has a right to request access to a child’s records, and whether that disclosure is in the child’s interests if the child is not competent to consent to the release.
Privacy law is certainly flexible enough to ensure that the therapeutic relationship between child, care giver and health professional is maintained, but negotiating your way through the various legal and ethical issues can be complex. For this reason, members are encouraged to contact MPS if they have any doubts about how to exercise their discretion and respond to such requests.
References
1. Attributed to Christian Nevell Bovee, American author and lawyer (1820-1904).
2. Additional reasons for refusing access to medical information are set out in Part 4 of the Privacy Act 1993.
3. New Zealand Privacy Commissioner, DHB Denies Father Access to Health Information About His Son (2008).
4. New Zealand Privacy Commissioner, Hospital Refuses Parents Access to Estranged Daughter’s Medical Report (1998).