ELECTRONIC SUPPLEMENTAL MATERIAL
Characteristics of the 33-item instrument
The response rate was excellent [mean, 99.3%±3.1%] for all items except item 11,
which had 18.6% of missing answers. There was no ceiling or floor effect [as defined in the
methods section]; however, items 8, 12, and 25 had high proportions of maximal scores [5 i.e.
comforting; 84%, 80.3%, and 84%, respectively]. Conversely, the proportion of lowest scores
[1, traumatic] was highest for item 1 [23.2%] and was greater than 10% for items 3, 21, and
27. The following item pairs had Spearman’s correlation coefficients [r] greater than 0.6: 5
and 6 [r=0.788], 4 and 8 [r=0.629], 7 and 8 [r=0.655], 4 and 12 [r=0.623], items 9 and 12
[r=0.673], items 4 and 14 [r=0.654], items 7 and 14 [r=0.602], items 8 and 12 [r=0.633], items
9 and 14 [r=0.684], items 12 and 14 [r=0.7], and items 15 and 18 [r=0.624]. Factorial analysis
identified three groups of items according to their contribution: strong [items 2, 4, 5, 7, 8, 9,
12, 14, 15, and 18], moderate [items 1, 3, 6, 10, 13, 17, 20, 21, 22, 23, 24, 27, 28, 30, and 33],
and weak [items 16, 19, 25, 26, 29, 31, and 32]. These data were discussed by the
multidisciplinary panel of 10 investigators, who decided to eliminate 18 items, leaving the
following 15 items: 2, 4, 7, 9, 10, 12, 13, 14, 15, 17, 18, 26, 29, 30, and 32.
The scores correlated strongly with each individual item score [rs=0.39–0.79].
Table S1: 50 initial items
The patient
1. Did your loved one have a chronic illness?
2. Did your loved one have an acute illness?
3. Did your loved one receive mechanical ventilation in the ICU?
4. Did your loved one receive dialysis in the ICU?
5. Was your loved one able to eat independently?
Preparation for the end of life
6. Do you believe your loved one was aware that she/he was dying? If so, who told her/him?
7. Was your loved one able to communicate with you during the ICU stay?
8. Did the intensive treatment received in the ICU have meaning for your loved one?
9. Do you believe your loved one was afraid of dying during the ICU stay? Did you notice any
signs of worry or anxiety?
10. Did your loved one smile or laugh during the ICU stay?
11. Were you able to say goodbye to your loved one?
12. Did you express important feelings to your loved one during the ICU stay?
13. Had your loved one made funeral arrangements?
14. Had your loved one written advance directives?
15. Did the ICU team give your loved one the opportunity to discuss her/his wishes?
16. Did your loved one refuse any of the suggested treatments?
Pain and symptom management
17. Was your loved one’s pain well controlled throughout the ICU stay?
18. Was your loved one able to breathe comfortably?
19. Did your loved one spend time alone during the ICU stay?
20. Do you believe your loved one felt alone during the ICU stay?
21. Did palliative-care specialists help to care for your loved one?
The person as a whole
22. Do you believe that your loved one’s dignity was maintained?
23. Do you believe the ICU team was attentive to your loved one?
24. Did a representative of your loved one’s religious community visit during the ICU stay?
25. Did your loved one request and obtain a spiritual service or ceremony before dying?
Dying in the ICU
26. Were you present when your loved one died?
27. Do you believe your loved one was conscious at the time of death (for instance was able to
hear)?
28. Did your loved one die peacefully?
Interactions and communication
 Patient centred
29. Did you have physical contact with your loved one? Did you touch each other?
30. Are you satisfied with the quality of the communication between the physicians and your
loved one?
31. Are you satisfied with the quality of the communication between the nurses and your loved
one?
32. Was the ICU team kind to your loved one?
 Family centred
33. During the days before the death, were you clearly informed that your loved one was dying?
If yes, by whom?
34. If you answered yes to item 33, how was this information conveyed?
35. Were you given the opportunity to discuss your loved one’s wishes, as well as your own
preferences, with the ICU team?
36. Were you in conflict with the ICU team?
37. Were you able to stay at your loved one’s bedside as much as you wanted?
Satisfaction
38. Are you satisfied with the overall end-of-life care given to your loved one?
39. Are you satisfied with the quality of the medical care received by your loved one?
40. Are you satisfied with the support you received from the physician while your loved one was
dying?
41. Are you satisfied with the support you received from the nurses while your loved one was
dying?
42. Are you satisfied with the quality of communication between you and the physicians?
43. Are you satisfied with the quality of communication between you and the nurses?
44. Did the ICU team organise a specific meeting to discuss the end-of-life needs of your loved
one?
45. Are you satisfied with the role you played during the discussions about the end-of-life care
for your loved one?
46. Do you believe the ICU team went too far in the treatment given to your loved one? Do you
believe the ICU team used unnecessary treatments?
47. Are you satisfied with the quality of information concerning the required administrative
procedures after your loved one’s death?
Family support
48. Were you in contact with your loved one’s general practitioner during the ICU stay?
49. Did the ICU team contact you after your loved one’s death to discuss your experience and
answer your questions [post-ICU visit]?
50. During your loved one’s stay, did you receive counselling, for instance from a psychologist?
Table S2: 33 items kept after the first series of tests and discussions
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
30.
31.
32.
33.
Was your loved one able to communicate with you during the ICU stay?
Was your loved one’s pain well controlled throughout the ICU stay?
Was your loved one able to breathe comfortably?
Do you feel that your loved one dignity was maintained?
Are you satisfied with the quality of the communication between the physicians and your
loved one?
Are you satisfied with the quality of the communication between the nurses and your loved
one?
Do you feel the ICU team was attentive to your loved one?
Was the ICU team kind to your loved one?
Are you satisfied with the quality of the medical care received by your loved one?
During the days before death, were you clearly informed that your loved one was dying? If
yes, by whom?
If you answered yes to item 33, how was this information conveyed?
Are you satisfied with the quality of communication between you and the physicians?
Are you satisfied with the quality of communication between you and the nurses?
Were you in conflict with the ICU team?
Were you given the opportunity to discuss your loved one’s wishes, as well as your own
preferences, with the ICU team?
Had your loved one written advanced directives?
Did your loved one refuse any of the suggested treatments?
Do you believe the ICU team went too far in the treatment given to your loved one? Do you
believe the ICU team used unnecessary treatments?
Were you in contact with your loved one’s general practitioner during the ICU stay?
Did palliative-care specialists help to care for your loved one?
Do you believe your loved one was aware that she/he was dying?
Do you believe your loved one was afraid of dying during the ICU stay? Did you notice any
signs of worry or anxiety?
Do you believe your loved one felt alone during the ICU stay?
Were you able to stay at your loved one’s bedside as much as you wanted?
Did you have physical contact with your loved one? Did you touch each other?
Did you express important feelings to your loved one during the ICU stay?
Were you able to say goodbye to your loved one?
Do you believe your loved one was conscious at the time of death (for instance was able to
hear)?
Were you present when your loved one died?
Are you satisfied with the support you received while your loved one was dying?
Did a representative of your loved one’s religious community visit during the ICU stay?
During your loved one’s stay, did you receive counselling, for instance from a psychologist?
Are you satisfied with the quality of information concerning the required administrative
procedures after your loved one’s death?
Table S3: Spearman’s correlation coefficients between the global CAESAR score and the score
on each individual item
Items in the
33-item
questionnaire
2
4
7
9
10
12
13
14
15
17
18
26
29
30
32
Items in the 15-item CAESAR
questionnaire
Spearman’s
coefficient
1
0.65
2
0.75
3
0.69
4
0.74
5
0.53
6
0.79
7
0.59
8
0.76
9
0.72
10
0.54
11
0.75
12
0.44
13
0.39
14
0.65
15
0.39
correlation
p value
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
Table S4 Associations linking the CAESAR score tertile to clinical endpoints of relatives 3, 6, and 12 months after the patient’s death in the ICU,
assessed by logistic regression.
OR [95% CI]
p value
Low vs. medium
CAESAR score
Low
vs.
high
CAESAR score
3 months
N=370/430
(86%)
HADS>18
Global scale
1.13
[1.011.27]
p=0.035
1.29
[1.131.46]
p=0.001
Anxiety
subscale score
≥8
1.11
[0.981.26]
p=0.095
1.18
[1.031.35]
p=0.018
Depression
subscale score
≥8
1.19
[1.051.33]
p=0.005
1.36
[1.201.54]
p<0.001
PTSD-related
symptoms
IES-R>32
1.16
[1.031.32]
p=0.016
1.34
[1.171.53]
p<0.001
6 months
N=268/430
(62%)
Complicated
Grief
CGI >25
PTSD-Related
symptoms
IES-R >32
12 months
N=209/430
(49%)
Complicated
Grief
CGI >25
PTSD-Related
symptoms
IES-R >32
1.27 [1.10-1.47]
p=0.002
1.13 [0.98-1.32]
p=0.102
1.04 [0.87-1.24]
p=0.640
1.04 (0.87-1.23)
p=0.689
1.40 [1.20-1.63]
p<0.001
1.24 [1.06-1.44]
p=0.008
1.27 [1.06-1.52]
p=0.011
1.26 (1.06-1.50)
p=0.010
LEGENDS TO SUPPLEMENTAL FIGURES
Figure S1
CAESAR questionnaire [15 items]: distribution of individual item scores [panel A] and global
scores [panel B]
Figure S2
Panel A: Eigenvalue diagram of the principal component analysis of the final 15-item CAESAR
questionnaire. The screen plot shows a break before factor 2, supporting a single-component
solution, as 42% of the variance is explained by the first principal component.
Panel B: Eigenvalue diagram of the principal component analysis of the final 15-item CAESAR
questionnaire in the reliability cohort. The screen plot shows a break before factor 2, supporting
a single-component solution, as 39% of the variance is explained by the first principal
component.
Eigenvalues (or proper values) are a special set of scalars associated with a linear system of
equations. It is one classic option for reporting aggregated numeric values.
Figure S1
Figure S2
A
B