Intellectual Disability and Consent and Decision-Making - Clinical Opal
Minh has an intellectual disability and complex needs. Her mother supports her in managing as her substitute decision-maker, alongside a support team. Minh has presented at the Emergency Department with severe pneumonia.
Minh’s expressive communication is limited and she does not use verbal communication. She has had traumatic healthcare experiences due to a lack of understanding from health professionals regarding her healthcare needs.
Your team needs to insert a cannula, however, Minh’s mother tells you that you should wait until Minh’s trusted support worker arrives before beginning the process. This is based on her experience in similar healthcare situations with Minh.
Minh is resistant and your team proceeds to call security to hold Minh down while they insert the cannula.
Question
How could you and your team have better managed the situation?
Answer
When a person has complex communication needs, it is important to work with their support team who can assist you in understanding the person. Best practice is understanding each person’s communication needs and methods, and speaking with the person directly, regardless of whether the communication is verbal or non-verbal.
You needed to establish consent with Minh before and during the procedure. If consent cannot be established with Minh, then a substitute decision maker, in this case, Minh’s mother, would provide consent on his behalf. In this case, she had asked that your team wait for Minh’s trusted support worker to arrive. This would have saved Minh from another traumatic experience.
In NSW, if a person is unable to understand the general nature and effect of a particular health treatment or is unable to indicate whether they consent, substitute consent can be provided by the person responsible.
A person responsible is the first on the following list who exists for the person:
- An appointed guardian, with the appropriate medical and dental decision-making authority.
- The person’s spouse or de facto spouse where there is a close and continuing relationship.
- An unpaid carer or the carer at the time the person entered residential care (recipients of a government carer benefit are not considered to be paid).
- A relative or friend who has a close personal relationship with the person.
Further learning
For more information, strategies and to learn about best practice in inclusive care for people with intellectual disability enrol in the online learning module Just Include Me - Inclusive Health Practice brought to you by the Council for Intellectual Disability.
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