Research into family perspectives on advance care planning has revealed some clues as to how to improve communication with parents (Xafis, Wilkinson and Sullivan 2015; Clayton et al. 2007).

Families value:

• playing it straight
  • be honest
  • answer questions clearly and without hedging. Families generally want clear prognostic information, even if it is painful to hear.
• making it clear
  • reduce uncertainty
  • communicate prognosis and risk directly and clearly
  • use plain language. Avoid euphemisms – it can be important to use the words ‘death’ or ‘dying’, even though they are hard to say.
• showing you care
  • use verbal and non-verbal expressions of empathy and compassion
  • listen to family viewpoints
• giving time
  • have uninterrupted, unhurried discussions
  • schedule follow-up appointments
• pacing information
  • ensure understanding
  • reiterate information
  • respond to cues from the family that they are ready to hear more
• staying the course
  • be present with the family in times of distress
  • ensure there is continuity of care
  • persevere so the family understand the clinical situation
  • reassure the family they won’t be abandoned.