Table 3.

Elements of ACP in the reported cases

Elements of ACP	With parents	With children
Themes discussed (n = 145), n (%)
Diagnosis	132 (91)	25 (17)
Life expectancy	131 (90)	17 (12)
Goals of care and treatment	126 (87)	22 (15)
Fears and worries	126 (87)	25 (17)
Code status/treatment limitations	125 (86)	7 (5)
Future physical functioning	122 (84)	15 (10)
Symptoms in end of life period	122 (84)	10 (7)
Coping with feelings of loss	117 (81)	15 (10)
Social network	116 (80)	10 (7)
Capacities of the family	108 (75)	10 (7)
Practical issues daily care	107 (74)	12 (8)
Hopes	102 (70)	21 (15)
Location of death	95 (66)	7 (5)
Child's joy in living	92 (63)	28 (19)
Future social functioning	93 (64)	10 (7)

	Cases
Self‐reported documentation of preferences and goals of care in the medical record (n = 145), n (%)
Yes	80 (55)
No	11 (8)
Partial	54 (37)
Discussions about legal representative (n = 145), n (%)
Yes, with child	6 (4)
Yes, with father	61 (42)
Yes, with mother	71 (49)
Yes, with someone else	2 (1)
No	70 (48)
Reported documentation of legal representative in the medical record (n = 145), n (%)
Yes	60 (41)
No	85 (59)
If yes, who was documented as the legal representative in the medical record (n = 60), n (%)
Both parents	46 (77)
Father	2 (3)
Mother	11 (18)
Someone else	1 (2)
Perceived agreement of care with preferences as discussed in conversations (n = 143), n (%)
Not at all/not really	7 (5)
Somewhat	5 (3)
Very much/Totally	131 (92)

	With preferences parents	With preferences child
Perceived agreement of care (n = 145), n (%)
Not at all/not really	2(1)	1 (1)
Somewhat	11 (8)	1 (1)
Very much/Totally	125 (86)	36 (25)
Unclear	7 (5)	107 (74)