Written Patient Information in the 21st Century

  • Dr Janet Burns, Royal Hospital for Sick Children, Edinburgh, United Kingdom
  • Ms Sheila Wurr, Royal Hospital for Sick Children, Edinburgh, United Kingdom
  • Dr Muhammed Walayat, Royal Hospital for Sick Children, Edinburgh, United Kingdom
  • Since 1999, some families in Scotland have been routinely sent an information letter prior to admission for an elective cardiac catheter procedure in their child. The information is explicit in describing potential complications including local vascular injury, brain damage and death.
    The pilot was sent to 20 parents whose children had recently had a catheter procedure. They commented on the accuracy and helpfulness of the information, what should be included or excluded, and whether they thought it an appropriate letter to receive. 18 parents responded. None objected to the letter or felt it would have adversely affected consent. None felt that it gave additional information but all indicated it was helpful to have a written communication.
    In 10 years it has been sent to 427 families, enclosing 2 copies so that one may be signed and returned to confirm that the parent wishes to proceed with the procedure. It is made clear that the child's name will be added to the waiting list for the procedure once the form has been returned. 42 have needed further chasing before returning it and none have declined catheterisation. Some minor changes have been made.
    One colleague now uses the standard letter but others find it too explicit and plan a simpler letter.
    Conclusion: Many clinicians still use verbal communication only to give risk/benefit information relating to procedures. It is however possible to devise a simple computer generated letter to complement this and ensure that potential complications are acknowledged by families prior to admission.