Table 2.

Navigating Circumstances Where Parents Forbid Direct Conversations With Dying Adolescents

Circumstance	Sample Scenarios	Tensions to Consider	Conversations That May Help
Parents forbid disclosure of poor prognosis to an adolescent patient.	Carlos’ parents explicitly ask that Carlos not be told his poor prognosis.	Patient autonomy: Honest and compassionate sharing of information respects Carlos’ autonomy, enables his participation in decision making, minimizes his isolation, and underscores trust between him and his medical team.	Exploring parenting roles, whether parents have differing views, whether other family members have influential opinions, as well as culture and expectations, may provide insight regarding the rationale for not including Carlos.
		Parent autonomy: Carlos’ parents understand his coping and information needs best. He may not be developmentally and cognitively ready for explicit information about death and dying. His parents worry full disclosure will be highly distressing and of no benefit.	Exploring what Carlos’ parents believe he knows or is worried about may provide opportunities to explain how health care staff can help fill knowledge gaps and/or alleviate fears.
			Exploring how Carlos has heard and processed difficult news in the past, and how he responded immediately and over time, may suggest ways to pave the road for future communication.
Health care staff anticipate questions directly from the adolescent.	Carlos’ nurse wonders how she will answer if he asks for confirmation that his cancer is back.	Staff needs: Not acknowledging what is happening feels dishonest and disregards Carlos’ personal autonomy.	Explaining it is important that Carlos knows he can trust his team to answer questions honestly, and requesting permission to do so if he asks directly, may take responsibility of disclosure off parents’ shoulders and open doors to communication.
		Patient needs: Carlos may know or suspect that his condition is deteriorating. The lack of open communication may contribute to his feeling isolated or afraid.	Exploring with parents ways that Carlos’ clinicians can respond may help all parties navigate the situation.
		Parent needs: Responding without prior agreement from Carlos’ parents may undermine their trust at a time when partnership with medical staff is critical.	Inviting ongoing dialogue with the family to provide support as Carlos’s health changes and guidance if they wish to share additional prognostic information may enable real-time resolution if conflicts arise.
The adolescent directly asks health care professionals questions about prognosis.	Carlos asks his psychosocial clinician, “am I dying?” She knows his parents have not yet discussed this with him directly.	Alleviation of distress: Answering Carlos honestly enables him to explore a frightening concept with someone he trusts. Speaking out loud about worries he has kept to himself may facilitate conversations both he and his parents have not yet been able to initiate.	Acknowledging the importance of Carlos’ questions and suggesting his family be invited to join the conversation may enable discussion, trust, and emotional support for all involved. This allows family members and other medical staff to prepare together and create a unified voice.
		Worsening of distress: Answering without the concurrent support and presence of the family may be more distressing if it conflicts with what Carlos has heard from others or if he has no outlet to continue to express and explore his hopes and worries.	Framing responses around Carlos being “very sick” enables continued conversation without overt dishonesty. Exploring his reason for asking the question may elucidate his worries and unmet needs, thereby facilitating ongoing conversations about goals and preferences of care.
The adolescent makes a provocative statement about his prognosis to his parents.	Carlos tells his mother, “I just want to go home.” She does not feel ready to “give up.”	Parent roles: Parents may have very strong notions that they must keep up Carlos’ spirits, and that if they fail to do so, they have failed him.	Asking parents what they feel is most important to them as parents may create opportunities for reframing their goals of care.
		Parent distress: Parents may feel emotionally overwhelmed by even the notion of having to tell their son of his progressive disease.	Offering to talk with Carlos together and offering to take the lead in exploring what he meant by “just go home” and/or in telling him the truth that his disease cannot be cured may alleviate parent distress and guilt while facilitating conversations about keeping Carlos comfortable, telling him he will not be alone, that his family and health care team will continue to work very hard to care for him, and that the choices he makes will be supported and honored.
		Patient wishes: Respecting Carlos’ wishes to go home may limit ongoing medical interventions or introduce a goal of care that has not yet been discussed.