TABLE 3.

Key elements of conversations with parents about what to expect at their child’s end of life

Considerations	Goal	Sample conversations
What the family knows/expects	Understanding the family perspective, identifying any knowledge gaps, and learning where to start the conversation.	It would help me to hear more about what you are expecting may happen to your child because of his or her illness. How do you see his or her future?
What concerns/worries the family the most (may be different than what the provider thinks)	Identify key stressors, areas where intervention is especially important, and areas where preparation can be helpful.	What are you most concerned about for your child? (or, what worries you most as you think about your child’s future?) Can you tell me what else are you worried about?
What the family is hoping for	Identify priorities for life and care.	Is there anything you are especially hoping for as we care for your child? What else are you hoping for?
Readiness to learn about medical aspects	Assess readiness; for parents who are not ready, let them know you can talk about these things whenever they are.	I will always be here to help you make the best decisions about the care of your child. Would it be helpful to hear more about what to expect as your child’s illness continues to progress? (or as the end of life approaches, or over time?) (For parents who are not ready) Sometimes parents who aren’t ready now end up wanting to talk about this later on. I want you to know that we can come back to this in the future if you would find it helpful.
What to expect medically	Provide clear explanations and guidance about potential changes such as symptoms, changes in breathing pattern, secretions, level of consciousness, decreased urine output, changes in perfusion, and any possible information about timing of changes and death. Consider additional information about autopsy and care of the body after death.	We never really know what to expect for any one child. But I can share with you some of what I and others have learned in taking care of other children in this phase of life. Some parents find this helps them make decisions and answer questions for their child
Readiness to address child’s emotional needs	Assess readiness to talk about emotional topics; convey that this topic is important.	Would it be helpful to think about what your child may need emotionally as the illness continues? What are you most worried about for your child’s emotional needs?
What to expect emotionally	Provide guidance and support around emotional concerns, including discussing death and dying with child and siblings, issues around mutual pretense, and potential for heightened emotional isolation when topics are not addressed. Offer help in discussing these topics rather than expecting the parent to do so.	I can share with you some of what we have learned about taking care of children in this phase of life. I know that this must be stressful to think about, but together I’m hoping we can think about what would be most helpful for your child and how to make this less difficult for you.
Assessing emotional responses to this information	Build in additional supports, if needed.	I can see your sadness/anger/worry. I am sorry that this is so hard. Would you feel comfortable sharing a little with me about what you are thinking and feeling?
Summarize, strategize	Help parents identify key points and next steps.	What are the most important next steps for your child’s care? What should the medical team be considering about your family’s wishes right now?