Informed Consent and Confidentiality

The next post in our Ethics series looks at Informed Consent and Confidentiality, written by our SAISI Ethics expert Dana Katz. Thank you Dana!

INFORMED CONSENT and CONFIDENTIALITY (HPCSA Booklets 4 and 5)

This blog will specifically be addressing informed consent and confidentiality. We will then relate these practically to paediatric practice and screenings in schools. “Clients” in this blog refers to the children with whom we work and their parents/ legal guardians.

Please note: OTASA is currently working on revising policy and guidelines related to paediatric practice and screening in schools. This document will be available shortly.

“It has long been part of South African law that a patient must provide informed consent for all medical treatment (diagnostic or therapeutic) on him/her (Stoffberg v Elliot, 1912). Basically, informed consent means that sufficient information is provided to the patient to make an informed decision and that the patient actually understands the information and the implications of acting on that information. Informed consent relates to a person’s right to human dignity and autonomy.” https://www.samedical.org/images/attachments/guideline-on-informed-consent-jul012.pdf

Informed consent involves the disclosure of all information (procedures, methods, costs, pros and cons) to clients, their comprehension of this information and their voluntary willingness to participate in an intervention based on this information. It should always be presented in a simple, concise and appropriate manner, in the client’s own language and must be free of confusing jargon. Clients should make their decision to accept or decline intervention without coercion or distress.

Successful relationships between therapists and clients depend largely upon mutual trust. To establish this trust, therapists must respect their clients’ autonomy. Effective communication is the key to enabling clients to make informed decisions. Therapists must take appropriate steps to find out what clients want to know and what they ought to know about their child’s diagnosis/ difficulties or developmental delays and the treatment thereof. This open, informed communication leads to clarity of objectives and understanding, and facilitates a sound relationship between therapists and clients. Therapists need to remember that the client is ultimately responsible for the final decision regarding the care / support that the child will receive.

According to the HPCSA, clients and guardians have the right to the following information:

“The developmental status of the child;
The range of diagnostic procedures and treatment options generally available to the patient;
The benefits, risks, costs and consequences generally associated with each option; and
The patient’s right to refuse health services and explain the implications, risks and obligations of such refusal.” – HPCSA Booklet 4

When a client is ready to enter willingly into a therapeutic relationship, the importance of open, informed communication is only surpassed by the importance of confidentiality within that communication.

Confidentiality is generally thought of as an ethical issue. It is, but it is also a legal obligation. The National Health Act makes it an offence to share information about clients without their consent. Therapists need to remember that they have access to information about clients and their children that is private and often very sensitive. It is their duty to hold this in the strictest confidence. It is a client’s right to expect that information about them or their child will be held in confidence by their therapist.

“The National Health Act (Act No. 61 of 2003) provides that this information must not be given to others, unless the patient consents or the health care practitioner can justify the disclosure. Practitioners are responsible for ensuring that clerks, receptionists and other staff respect confidentiality in their performance of their duties.”– HPCSA booklet 5

Rule 13 of the HPCSA’s Ethical Rules states that a practitioner may divulge information regarding a patient only if this is done:

with the express consent of the patient;
with the written consent of a parent or guardian of a minor under the age of 12 years.
Other instances include: in terms of a statutory provision, at the instruction of a court or when in the public interest.

Confidentiality is key to developing a trusting relationship between clients and therapists. Without assured confidentiality, clients may be reluctant to give therapists the information they need in order to provide holistic, effective support. This could be detrimental to the therapeutic process.

Therapists must make sure that anybody to whom personal information about a client or child is disclosed, understands that it is given to them in confidence. They need to understand that they are bound by the legal duty of confidentiality – whether or not they have contractual or professional obligations to protect this confidentiality. This is especially important in the school setting where teachers and staff may not be aware of the therapist’s ethical duty and obligation to respect confidentiality.

Therapists are often asked to provide information about clients or children. In such cases, therapists should always:

“Obtain the consent of the clients to disclose information wherever possible,
Anonymize data where unidentifiable data will serve the purpose,
Keep disclosures to the minimum necessary,
Be prepared to justify their decisions to disclose or withhold information in accordance with these guidelines.” – HPCSA Booklet 5

Practical Application:

This brings us on to Occupational Therapists practicing in the school environment. Therapists working in schools need to remember that their client is the child and parent whom they serve and not the school. They need to remember that consent and confidentiality are key ethical practices that must be maintained as above. Information about children may not be discussed/ shared in a school setting without prior written consent of the child’s parent/ guardian.

When working in a school or healthcare setting, therapists should make sure that clients are aware that personal information about them/ their child may be shared within the health care/ education team and they must be told the reasons for this. It is particularly important to check that clients understand what information will be shared.

This is especially important in the school setting where teachers require certain information about a child in order to provide the best support and teaching strategies for that child to succeed in the classroom. Where team meetings will be taking place to discuss a child’s needs, parents/ guardians should be informed, the meeting’s purpose explained and their consent should be obtained.

If a therapist is working under contract for a school or another organisation (i.e. their obligation is to the school as well as the client) and is asked to write a report about or assess a child or to disclose information about a child from existing records, they must:

“Confirm that the client has been told at the earliest opportunity about the purpose of the assessment or disclosure; the extent of the information to be disclosed; and the fact that relevant information cannot be concealed or withheld.
Obtain, or have seen, written consent to the disclosure from the client or a person properly authorised to act on the patient’s behalf.
Disclose only information relevant to the request for disclosure.
Include only factual information that they can substantiate, and ensure that it is presented in an unbiased manner.”

“Clients may wish to see reports written about them/ their child before they are disclosed. In all circumstances, therapists should check whether clients want to see their reports – unless patients have clearly and specifically stated that they do not wish to do so.”– HPCSA Booklet 5

“Disclosures without patients’ consent can only be justified in exceptional circumstances, for example: when this is necessary to protect others from risk or serious harm, i.e. where neglect or physical, sexual or emotional abuse is suspected. In these cases, where they believe that the disclosure is in the patient’s best interests, information should be disclosed promptly to an appropriate responsible person or statutory agency.” – HPCSA Booklet 5

OT Screenings and Running of Groups in Schools (current practice – please note that this information is due to be revised and will be updated accordingly.)

A therapist can only provide OT group intervention to children in a school setting once they have assessed them first and identified the need for therapeutic support. Children participating in group therapy need to be grouped according to their specific therapeutic needs and treated accordingly. This treatment can then be billed as group therapy and claimed from medical aid.

As an individual, an OT can offer group-work focusing on the promotion or support of skill development. It is noted that this is not deemed Occupational Therapy per se, but rather skill development groups using therapeutic principles as the children are not diagnosed and have no specific treatment goals. This cannot be billed as group therapy and cannot be claimed from medical aid. The therapist can also not provide a bill for a “home programme to reinforce skills practiced in therapy” as these children are not receiving group therapy.

Should a therapist offer screening assessments to identify at risk children or to identify areas of need within a scholastic population, informed consent needs to be obtained from all parents in writing first. Parents can choose for their child not to participate in screenings and should not feel coerced into participation. Accurate, factual information should be provided.

Standardized tests should not be used as part of a screening assessment.

According to the HPCSA Guidelines on informed consent, the following information needs to be provided in order to ensure that parents can make an informed decision regarding screening:

The purpose of the screening test and what will be done
The possibility of false positive or negative results, i.e. a screening is not a full assessment and it may or may not identify specific areas of difficulty
Any uncertainties or risks attached to the screening process
Any significant medical, social or financial implications
Follow-up plans, including the availability of consultation and further support if required
Consent needs to be obtained in writing and needs to be signed

Should any children be identified as being at risk during a screening process or during groups, this information will need to be reported back to the parents/ caregivers first – not to the teachers. When providing feedback, the names of 3 other therapists in the area need to be given so that parents can choose their service provider. Otherwise, this may be seen as touting for business.

Lastly, should any of the teachers at a school be concerned about any of the children, they are responsible for reporting this concern to the parents first and then recommending therapeutic observation, assessment, screening or intervention. They may not report concern to you or discuss a child with you without prior parental consent.

You wouldn’t want anyone talking about you or your child behind your back now, would you?

For detailed information please consult:

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