Goals of patient care: Wishes during life
This is an opportunity to explore child and family’s values and preferences around maximising quality of life.
The discussion is an opportunity to elucidate:
• previously undetected physical and psychological symptoms
• coping strategies
• protective factors and support structures including spiritual values
• insights to the family’s approach to the illness
Child’s wishes during life:
Explore what kind of a person the child is; what makes the child feel good, what helps with various symptoms (include medical ie medications and non-medical ie massage, distraction), what the child does for fun, where they enjoy being, any special family members/friends/other people that make them happy. Explore things that make them worried or concerned; what they do when they feel worried or concerned. Any special wishes or hopes for the future.
If appropriate, do they like to be involved in decision making? would they prefer to hear information directly from their doctor or would they like parents to meet with the doctor first?
Family’s wishes during life:
What are their hopes for the future? What is most important to them? What is their greatest fear for the future? What helps them in the face of that fear? Is there anything or any outcome they feels they would like to avoid? Who are the decision makers in the family? Do they have support people including spiritual/cultural advocates? Are there sites where they feel best supported (ie regional hospital, RCH, VSK, home).
Other’s wishes during life:
Who are the other important players in the child’s life? Do they have any special needs, hopes or wishes? How are they supported?