4.5.3 Communication with patients, carers and families

The lead or nominated clinician should take responsibility for these tasks:

  • discussing treatment options with patients and carers, including the treatment intent and expected outcomes, and providing a written version of the plan and any referrals
  • providing patients and carers with information about the possible side effects of treatment, managing symptoms between active treatments, how to access care, self-management strategies and emergency contacts
  • informing patients/carers about who to contact in the case of corticosteroid overdose (corticosteroids are commonly used at high doses over prolonged periods of time, increasing the likelihood of significant side effects)
  • providing information about seizures to the family and carers (this information should cover what to expect and what to do in the event of a seizure, such as maintaining the person’s airway and removing dangerous objects from the area; this may help relieve the anxiety of family and carers)
  • providing appropriate information to the person’s carer about managing altered cognitive function and behaviour (when there are significant cognitive impairments, carers are likely to assume a central role in communication and decision making)
  • providing information about safe mobility to carers and patients
  • encouraging patients to use question prompt lists and audio recordings, and to have a support person present to aid informed decision making
  • initiating a discussion about advance care planning and involving carers or family if the patient wishes.