Goals-of-care conversations and advance care planning for children — formative SAQs

SAQ 1 — Structured goals-of-care meeting for an adolescent with cancer (10 marks)

A 15-year-old with relapsed leukaemia is admitted for the third time in two months. The team recognises there is no documented goals-of-care plan. The family is anxious and asks "what do we do if the treatment stops working?" [1]

Questions

1. Outline how you would structure the goals-of-care meeting using the Serious Illness Conversation Guide. (6 marks) [2]
2. Describe how you would capture this adolescent's own voice, and state one evidence-based benefit of doing so. (4 marks) [3] [11]

Model answer

Structure using the Serious Illness Conversation Guide (6). First prepare: review the chart, confirm the prognosis with the treating team, and identify who should be in the room and arrange a quiet space and an interpreter if needed. Set up: warn the family that a goals-of-care conversation is coming and ask permission to talk honestly. Assess: elicit what they already know, how much they want to know, and what matters most to them, before sharing prognosis. Share: give the prognosis in plain language, honestly and with compassion, and respond to emotion rather than rushing on. Align: connect what the family cares about to what the team can realistically offer and name the goals-of-care frame (curative, complex chronic, or comfort). Plan: agree the frame, record the treatments wanted and not wanted and the resuscitation status, and write the portable order. [1] [2]

Capturing the adolescent's voice and evidence (4). The 15-year-old is developmentally able to take part, so invite her directly and use an age-appropriate tool such as Voicing My CHOiCES or the family-centred (FACE) advance care planning structure so her preferences are recorded in her own words, not mediated only through her parents. The evidence-based benefit is that family-centred ACP for teens with cancer raises and sustains adolescent-family congruence on end-of-life treatment preferences and improves family positive caregiving appraisals — she is prepared, and her family is supported. [3] [11]

SAQ 2 — Documentation, dissemination and a parent who "wants everything" (10 marks)

A technology-dependent 7-year-old with severe neurodisability has a goals-of-care conversation. The parents say they "want everything done". The plan is documented in the inpatient oncology record only. [8]

Questions

1. Interpret what "want everything" most often means in this context, and describe your response. (4 marks) [8]
2. Explain the documentation and dissemination requirements for a usable advance care plan. (6 marks) [1] [12]

Model answer

Interpretation and response (4). For parents of a child with complex chronic serious illness, "want everything" most often signals fear of abandonment rather than a considered preference for maximal intervention. Reassure the family that choosing a comfort frame does not mean being left alone, and separate symptom control and comfort from giving up. Then explore the child's values and quality of life, weigh the burden of each intervention against its realistic benefit for this child, and revisit the options — the goal is an individualised plan anchored in the child's best interests, not an all-or-nothing choice. [1] [8]

Documentation and dissemination (6). A usable advance care plan records the goals-of-care frame, the values behind it, the specific interventions agreed and declined, the resuscitation status, the preferred place of care and death, and the named surrogate decision-makers. It must then be disseminated: summarised for the family and primary care, placed where every setting the child may enter can find it, and converted into a portable medical order that retrieval and emergency services can access. The plan must carry a review date and be revisited at milestones or with any change in trajectory. A plan filed in a single specialty record and undiscoverable at a weekend presentation is functionally no plan. [1] [12]