The Decision-making Process
After your child is diagnosed with a life-threatening or life-limiting illness, you will have to make some difficult decisions. It is inevitable. Sometimes there is a clear path to follow. But often, the decision is complex -- and agreement is not easily found.
Your job is to obtain the best information available, think carefully about the life goals possible for your child and tell us what you believe is best for your child. (The child's viewpoint should also be included as much as he or she can understand and give opinions.)
Your health care team will help facilitate your decision-making process by offering recommendations and letting you know options, risks and benefits. But you, the parent, always remain the person guiding the direction of the team.