While data suggests that the involvement of adolescents and young adults in their own end-of-life planning assists both parents and healthcare providers to make informed decisions and could also improve the patient’s quality of life, there are still difficulties to overcome in following this route. Not least of which is the concern of parents that doing so will send a message to their child that death is imminent and care is likely to be withdrawn.
The authors’ recommend healthcare providers:
- Embrace a systematic approach. This approach should be implemented consistently and would include identifying specific time points at which the patient’s goals and preferences are discussed. Ideally this should begin when treatment is initiated and tailored to the needs of the adolescent and his or her family.
- Assess Advance Care Planning readiness. When appropriate an approach should be made to the family and the patient by a member of the healthcare team who has gained their confidence and trust. This conversation should be handled with sensitivity and the conversation should be meaningful and not just the completion of a document.
- Engage the family. Parents may need to be encouraged to talk to their child about end of life issues as lack of meaningful communication can lead to emotional distance at a time when closeness is most needed. The healthcare provider may need to be the one who facilitates these conversations. The authors warn that this is a process, the goal of which is to pave a road to allow topics to be revisited at a later stage if necessary.
- Use a team approach. While doctors often shoulder the responsibility of breaking bad news to a family, they should make use of the expertise of other professionals within their team, such as nurses and psychologists.
Read the full commentary in Pediatric Blood & Cancer, Volume 60, Issue 5 available from the Wiley Online Library at
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