TABLE I.

Approaching EoL conversations with adolescents, young adults and family^*#

Time	Goal	Sample Conversation
Time of Diagnosis	Establish an open relationship based on honesty	“Can you tell me what you understand about your disease at this point?”; “What do you understand about your treatment options and plan?” “How much information do you want us to share with you?” “Do you do better with written materials that you can read on your own?” “Are there things you would like to speak privately to me about (or, conversely)” “How do you feel about giving your parent(s) the opportunity to speak privately with me.”
Initiation of Treatment	Early conversation about the possibility of cure not being achievable or likely Introduction to ACP Ensure the AYA and family understand that these are precautionary measures Inclusion of the AYA in discussions and providing the AYA with a sense of control Encourage conversations to occur between parent and AYA	“Are there parts of the treatment plan that concern you?” “While we are hopeful that your treatment will be effective against your disease, we have learned from other families like your own that not suggesting that you give some thought to some difficult issues early on is irresponsible of us. For example, it would be ideal if you would communicate with each other about who would be the person to make medical decisions for you if you became very ill and were not able to do so on your own. Or, if you have strong religious or cultural beliefs about things such as life support in the case that a sudden event happens, that is always helpful to talk about and share with the staff. Again, we are not anticipating these issues will present themselves at this time - it is just that such conversations are easier to have when you are well than if a sudden problem arises. Please know that you can change anything you decide now at a later point. Does this make sense to you? Do you have any questions?”
Recurrence/Progression	Determine if there is anything that the AYA is worried about or afraid of Explore if the family has had initial ACP discussions Ask if the patient ever thought about how aggressively they would want to be treated if cure were not possible Assess family communication; family concerns	“We have some new findings about your disease. How much do you want to know?” or “Are there things you would rather we talk to your parents about first?” (Once findings shared) “Do you remember when we had talked about difficult topics that families might want to think about if treatments were not as effective as we had hoped? While we have other options for continuing treatment, I just want to make sure we are considering what you want. Have you had any of those conversations? [If so], can you share with me what your thoughts are? [If not] For example, if you would like us to focus more on you having the best quality of life, such as being away from hospital as much as possible, decisions we make from this point forward will be geared to help this happen. Can you tell me what is most important or concerning to you at this moment?”
Continued disease progression	Inquire about what worries or concerns them most and about any immediate goals that they wish to fulfill Describe advance care planning and directives Introduce planning guide Provide materials (legal resources regarding a health care agent if needed) and an age appropriate planning document Offer to go through a document together Convey the goal for the AYA to do things he/she enjoys most each day	“We are at a place now where we no longer know if cure is possible” or “You are at risk for (e.g. continued disease progression, spinal cord compression). We want to make sure that we know how you would like us to treat you if this happens. Would you like us to talk with you about what we know and some decisions we might be able to make together at this point?” (If AYA says little, add) “For example, some people get to a place where they feel they ‘had enough’ and do not want more aggressive treatments that make them feel bad - especially when the medicines are not able to cure their cancer. Others want ‘everything you got’ not caring if they are in an ICU or feeling really badly. There is really no right or wrong here.” (Listen to see which camp the AYA falls in) We thought you might like to know that there is a guide that was created by and for persons your age who had concerns about what would happen if they got sicker. It allows you to make decisions about things that may be important or meaningful to you – for example, how you want to be treated if you were in pain, if there are certain friends you would like around, if you would want doctors in the future to learn about your cancer from your cells, or how much time you want to spend in the hospital. If you would like, we can have [name] show you the guide after we are finished here.”
End-of-life care	Revisit ACP - ask to be informed of decisions if already made. Assess whether the patient/family is comfortable with the decisions. If decisions not made, narrow down areas of greatest discomfort Inquire whether the AYA has a preference for where s/he would like to be as EoL nears	“Many parents share your worries that after all these years of focusing on what you can do to extend life, talking about death can send a message that you are giving up. We will work as hard as we always have to provide the very best care possible.” “What we do know from parents who have lost a child, is that many of those who did not talk to their child about what was happening before their child’s death, suffer due to regretting that decision.”
Addressing resistance to discussing end-of-life between AYA and family	Reduce chance of AYA dying in emotional isolation Encourage open and honest communication	AYA. “Are there things about your care that you would rather not talk about? (if so) “With whom would you like me to talk about those things?” Family. “Do you think there is a chance that your child is thinking about his/her own death but may not want to talk to you about this for fear of upsetting you or disappointing you?” “Our goal is for [name] to leave this world as peacefully as possible – which means, having the opportunity to share his/her thoughts with you.”

^*Conversations should always begin with asking what the AYA and family’s questions and concerns are. This way, responses can be formulated to address EoL issues but in the context of what the patient and family wants, needs, and is ready to discuss.

^# The suggested conversations are not designed to be a script but rather to be tailored to the individual AYA and family. They are based on the authors’ collective clinical experience in pediatric oncology.