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Comparison of the death certificate study and the prospective study
249
Comparison of the death certificate study and the prospective study
Appendix F
This appendix belongs to the text of Chapter 15. In that chapter the results of the prospective study are discussed and compared to the results of the death certificate study (Chapter 13). In order to facilitate understanding of the report the authors decided to present all comparative tables in the present appendix. It was considered that there is a high degree of similarity between the results of the two part-studies. The tables derived from the prospective study will be presented first in all instances followed by the corresponding table from the death certificate study.
251 Table F.l
MDEL-actions
performed
death certificate
by the physician;
Prospective
of prospective
study
Replies given
mentioned
MDEL-action
MDEL-action
I+)= 2257
n’)= 2257
n’)= 5197
n’)= 5 197
%‘)
%
%‘)
%
64 .b
60.6
60.6
“A.
9.0
First contact after the death
2.1
2.
I
2.8
Other
cases where
study
MDEL-action
“A.
unexpected
with
of which as last
given
Stratum 0’)
Sudden and totally
study
certificate
Replies
mentioned
64.6
petformed
Death
of which as last
total
No MDEL-action
comparison
study
death
9.0 2.8
29.2
29.2
18.I
18.1
33.3
33.3
30.6
30.6
no MDEL-
action was performed (no ‘yes’ to questions 4 to 7)
MDEL-action
performed
35.4
35.4
39.4
39.4
Taking into account the probability
that the end of life was
hastened by: 4a.
withholding
4b.
withdrawing
4c.
intensifying and/or
a treatment a treatment alleviation
5.5
21.6
5.6
13.2
3.5
13.9
3.6
I.2
25.0
15.0
7.0
2.6
7.6
3.6
of pain
20.2
symptoms
In part with the purpose
19.6
I
of
hastening the end of life by: 5.
intensifying
alleviation
pain and/or
symptoms
With
the exphcit purpose
of
of
hastening the end of life by: 6a.
withholding
6b.
withdrawing
a treatment a treatment
7.
prescribing.
supplying or
administering
a drug
7.2
3.5
7.1
4.3
5.7
4.4
5.1
4.3
4.7
4.7
2.7
2.7
100.0
Total
1.
100.0
Total number of standard questionnaires
IOO.0
100.0
on which this column is based (plus stratum 0 for
the death certificate study). 2.
Because no standard questionnaires distribution
had been sent of stratum 0 (death certificate study), the
over the next three categories
MDEL-action
was performed
questionnaire).
is not known.
It is known,
however,
that no
in these cases (see section 12.2 and the text of the standard
In the death certificate
study those 3 categories
do not contain stratum
0
deaths. 3.
The percentages
in this column
add up to more than
questions 4 to 7 could be answered with “yes”.
100’S, because
more than one of
252 Table F.2
Extent of shortening of life, based on last mentioned MDEL-action (prospective study) Last-mentioned
Unknown no shortening
MDEL-action’)
4a
4b
4c
5
6a
6b
7
TOtA
n= 128
“= 77
“= 266
“= 55
n= 86
“= 101
n= 105
“= 818
%
%
%
%
%
%
%
%
2
26
8
5
I3
6
4
4
35
33
42
I9
9
13
7
3
18
I9
32
7
24
24
I7
I day to I week
26
27
I9
25
33
26
28
25
I to 4 weeks
I5
I4
5
IO
24
26
37
I7
I to 6
IO
2
2
7
24
7
7
7
3
2
100
100
~24 hours
months
> I12 year Total
Table 13.2
_ IO0
100
100
100
2
I
100
100
Extent of shortening of life, based on last mentioned MDEL-action (death certificate study) Last-mentioned
MDEL-action’)
4a
4b
4c
5
6a
6b
7
Total
“= 309
“= 204
n= 922
n= 244
n= 244
n= 234
n= 204
n= 2361
%
%
%
%
%
%
%
%
Unknown
I3
I7
I7
2
5
3
I
II
no shortening
46
48
48
I2
I6
I2
I
34
~24 hours
5
II
I6
35
7
20
24
I6
I day to I week
I7
I3
I4
41
35
46
41
25
I to 4 weeks
II
8
4
9
24
I4
I9
IO
I to 6 months
7
2
2
I
IO
3
II
4
> I12 year
I
0
0
_
3
I
3
I
100
100
100
100
100
100
100
100
Total
1)
Taking into account the probability that the end of life was hastened by: 4a withholding a treatment 4b withdrawing a treatment 4c
intensifying alleviation of pain and/or symptoms
In part with the pm-pose of hastening the end of life by: 5
intensifying alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a withholding a treatment 6b withdrawing a treatment 7
prescribing, supplying or administering a drug
253 Table F.3
Discussion with the patient about the decision to be taken, according to “lastmentioned” MDEL-action (prospective study) Last-mentioned
MDEL-action’) Total with MDEL-
4a
4b
4c
5
6a
6b
7
action
“= 128
“= 77
II= 266
“= 55
“= 86
“= 101
n= 105
n= 818
%
%
%
%
%
%
%
%
Discussed
26
34
29
44
34
47
78
40
Not discussed
69
61
58
50
64
49
22
54
6
5
13
6
2
4
I00
100
IO0
100
100
100
100
100
Unknown Total
Table 13.3
7
Discussion with the patient about the decision to be taken, according to “lastmentioned” MDEL-action (death certificate study) Last-mentioned
MDEL-action’) Total with MDEL-
4a
4b
4c
5
6a
6b
7
action
n= 309
n= 204
n= 922
“= 244
n= 244
n= 234
“= 204
n= 2361
%
96
%
%
96
%
%
%
Discussed
27
19
30
53
33
39
83
36
Not discussed
63
67
52
45
64
59
I7
54
9
I4
18
2
3
2
100
100
lo0
100
100
100
100
loo
Unknown Total 1)
Taking into account the probability that the end of life was hastened by: 4a
withholding
4b
withdrawing
4c
intensifying
a treatment a treatment alleviation of pain and/or symptoms
In part with the purpose of hastening the end of life by: 5
intensifying
alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a
withholding
6b
withdrawing
7
prescribing,
a treatment a treatment supplying or administering
a drug
IO
254 Table F.4
Decision-taking
after discussion
action’)(prospective
with the patient, according
to last-mentioned
MDEL-
study)
Last-mentioned MDEL-action’)
4alb
4c
5
6al6b
7
Total
n=54
“= 83
n=25
“= 70
n=78
n=310
%
%
%
%
%
%
request by patient
47
48
64
68
85
64
Explicit and repeated request
37
38
60
51
83
54
Decision taken upon explicit
Written advance directive Patient totally able to take a decision
3
4
IO
II
58
20
82
a9
96
88
97
90
Initiative for discussion came from’): -
patient
38
42
54
54
a3
55
-
physician (and not from patient)
58
56
22
43
I6
40
In addition to discussion with patient there was discussion with’) -
colleagues
67
53
70
65
88
69
-
nursing staff
51
63
72
50
49
55
-
relatives
70
75
96
80
81
79
-
noone
5
4
7
2
4
Table 13.4
Decision-taking action’)(death
after discussion certificate
with the patient, according
to last-mentioned
MDEL-
study)
Last-mentioned MDEL-action’)
4a/b
4c
5
6al6b
7
Total
n=l36
n= 291
n=l34
“= I85
n=l79
n= 925
%
%
%
%
%
%
request by patient
52
48
53
63
84
59
Explicit and repeated request
47
38
49
55
79
51
3
3
IO
6
42
II
83
a4
a4
75
96
a4
Decision taken upon explicit
Written advance directive patient totally able to take a decision
Initiative for discussion came from’): -
patient
41
39
58
46
74
49
-
physician (and not from patient)
54
56
32
49
21
54
In addition to discussion with patient there was discussion with’) -
colleagues
57
58
60
62
81
63
-
nursing staff
47
49
59
64
40
52
65
70
77
a2
a7
76
9
a
5
2
2
6
_ relatives -
noone
1)
Percentages
in this table always refer to the total number of patients per last-mentioned
action with whom this action had been discussed. 2)
see 1) table F.2.
3)
More than one answer could be given to this question.
255 Table F.6
Decision-taking MDEL-action’)
without
discussing
(prospective
study)
with
the patient,
Last-mentioned
according
to last-mentioned
MDEL-action’)
4alb
4c
5
6aIb
7
Total
n= 142
“= 157
n=27
n= 112
n- 27
n=465
%
Yo
%
%
%
%
No discussion possible
06
77
78
93
90
84
Patient unable to take a decision
80
70
78
91
88
80
2
9
35
13
33
I
8
5
34
26
44
15
I
3
91
92
61
73
53
83
Patient had at some time indicated a wish to hasten the end of life
I
An explicit request to hasten the end of life of patient by: _ relatives -
physician/nurse/others (but not relatives)
-
noone
Decision discussed with’): _ colleagues
43
29
38
61
64
43
-
nursing staff
61
54
56
77
57
62
-
relatives
53
49
75
77
64
59
-
noone
I6
28
I7
5
7
I7
Table 13.6
Decision-taking MDEL-action’)
without
discussing
(death certificate
with
the patient,
according
to last-mentioned
study) Last-mentioned
MDEL-acti&)
4alb
4c
5
6a/b
7
n= 321
n= 460
n=lOS
“= 282
n= 25
%
%
%
%
%
%
No discussion possible
91
77
88
94
100
06
Patient unable to take a decision
87
72
77
88
85
81
II
9
22
I6
25
I3
7
a
25
26
49
14
Total n=l20l
patient had at some time indicated a wish to hasten the end of life An explicit request to hasten the end of life of patient by: -
relatives
-
physician/nurse/others 0
I
I
2
3
I
84
a4
70
67
49
78
_ colleagues
42
31
43
53
70
42
_ nursing staff
55
36
58
66
79
51
-
relatives
68
52
70
81
87
66
-
noone
I6
29
I5
5
3
18
(but not relatives) -
noone
Decision discussed with]):
1)
The percentages artinn wit.h whnm
in this table always refer to the total number of patients per last-mentioned t.hP nrtinn
hnd not. henn dinrn~ned.
256 Table F.6
Reasons for not discussing with the patient, according to la&mentioned
MDEL-
action’) (prospective study) Last-mentionedMDEL-actior?)
4alb
4c
5
6alb
7
Total
n= 142
n= 157
n=27
n= 112
n= 27
n=465
%
%
%
%
%
%
Too young
I
Emotionallytoo labile(b)
3
5
4
I
7
3
I3
25
24
I5
25
I9
7
I4
9
6
2
9
Clearly the best for the patient (c) Would have done more harm rhan good (d) Only b and/or c and/or d and no other answeringcategory (abilityto take a
I3
I8
I4
7
Temporarily unconscious
3
2
9
2
3
Permanentlyunconscious
20
IO
21
30
20
Reduced consciousness
33
41
38
43
39
Demented
38
29
24
28
31
I
4
7
9
decisionnot known)
Mentally handicapped
I
Mental disorder
5
Other reason
IO
I 5 II
Unknown
Table 13.6
I3
II 6
2
5
Reasons for not discussing with the patient, according to last-mentioned MDELaction’) (death certificate study) Last-mentionedMDEL-action’)
4a/b
4c
5
6a/b
7
Total
n= 321
n= 468
n=l05
n= 282
n= 25
II=1201
%
%
%
%
%
%
Too young
2
I
I
4
9
2
Emotionallytoo labile (b)
I
2
5
I
3
2
II
28
27
14
26
20
6
6
II
6
0
6
8
II
Clearly the best for the patient (c) Would have done more harm than good (d) Only b and/or c and/or d and no other answeringcategoty (abilityto take a decisionnot known)
7
I7
I8
6
Temporarily unconscious
4
3
I
5
Permanentlyunconscious
27
I2
4
II
24
23
I9
Reduced consciousness
39
46
57
42
57
44
Demented
32
22
23
32
II
27
Mentally handicapped
I
2
I
I
Mental disorder
5
2
2
I 3
2
Other reason
2
3
2
3
5
3
unknown
4
6
4
2
8
4
1)
Morethan one answercould be given to this question
2)
See 1) table F’2
257 Table F.7
Age and sex, according to last-mentioned MDEL-action (prospective study) MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action’)
Mortality
4alb
4c
5
6alb
7
n= 205
n= 266
“= 55
“= 187
n= 105
“= 818
n=128786
Yo
%
%‘)
%‘)
%
%
%
%
%
35
65
9
II
3
8
5
o-49
34
67
4
8
2
6
8
6
8
SO-64
34
66
8
I2
I?
I2
25
13
I3
96 last-mentioned action
36
AIF
65-79
36
65
33
42
55
32
48
39
37
80+59
59
41
55
39
26
50
20
42
42
Total
36
65
100
100
100
IO0
100
100
100
SeX Males
32
68
45
47
48
51
57
49
52
Females
40
60
56
53
52
49
43
51
48
Total
35
65
100
100
100
100
100
100
100
Table 13.7
Age and sex, according to last-mentioned MDEL-action (death certificate study) MDEL-
No
All
action
MDEL-
MDEL-
,n The
action
actions
Netherlands
Last-mentionedMDEL-action’)
Mortality
together
19901)
n=l28786
4aib
4c
5
6alb
7
n=513
n=922
n= 244
“= 478
“= 204
n= 236 I
%‘)
%‘)
%
%
%
%
%
%
39
61
9
I5
4
9
3
39
o-49
32
60
5
6
6
9
I4
7
8
SO-64
40
60
9
I6
21
9
24
I4
I3
Yo
% last-mentioned action
Age
65-79
38
62
31
40
41
32
38
36
37
ao+
42
58
56
38
32
50
25
43
42
Total
39
61
100
100
100
100
100
100
100
Males
36
64
46
48
48
45
61
40
52
Females
43
57
54
52
52
55
39
52
48
Total
39
61
100
100
100
100
100
100
100
SC%
1)
See 1) table F2
258 Table F.8
Cause of death, according to last-mentioned MDEL-action (prospective study) MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action ‘)
Mortality
4alb
4c
5
6alb
7
n= 205
n= 266
n= 55
n= 187
n= 105
n= 818
n=l28786
%’
%
%
%‘)
%‘)
%
%
%
%
35
65
9
II
3
8
5
36
57
43
23
51
71
30
63
42
27
I7
83
23
I6
I4
I9
5
I7
30
II
I2
% last-mentioned action
Cause of death C.XKer Cardiovascular diseases
Diseasesof the nervous system(incl. stroke)
41
59
I8
Pulmonarydiseases
4I
59
I3
8
I6
I2
I4
8
5
II
I4
II
External causes
9
91
0.6
0.2
-
I.3
0.8
0.6
4.1
Mental disorders
52
48
2.6
1.7
-
3.7
-
2.0
0.9
categories)
37
63
21
I2
3
I9
5
I4
I8
Total
36
65
100
100
100
100
100
100
100
0
Other (all other
Table 13.8
Cause of death, according to last-mentioned MDEGaction (death certificate study) Mortality
MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action’)
4aib
4c
5
6alb
7
n= 513
n= 922
n= 244
n= 478
n= 204
n= 2361
n=l28786
%‘)
%‘)
%
%
%
%
%
%
%
39
61
9
I5
4
9
3
39
59
41
28
53
61
31
68
44
27
21
79
I7
I6
9
21
9
I6
30
% last-mentioned action
Cause of death CWKer Cardiovascular diseases
Diseasesof the nervous system(incl. stroke)
43
57
21
9
IO
I5
2
I3
I2
Pulmonarydiseases
37
63
9
5
a
8
6
7
a
External causes
I2
88
I .5
I .I
I.8
I.2
0.3
1.2
4.1
Mental disorders
52
48
2.1
0.7
0.6
1.7
-
1.2
0.9
Other (all other categories)
43
58
21
I6
9
23
I5
I8
I8
Total
39
61
100
100
100
100
100
100
100
259 Table F.9
Type of physician, according to last-mentioned
MDEL-action’)
(prospective
study)
MDEL-
No
action
MDEL-
Total
action Last-mentioned Number
of
MDEL-action’)
4a/b
4c
5
6alb
7
%
%
%
%
%
%
%
2.6
7.9
4.7
35.4
64.6
IOO.0
questionnaires processed
%
% last-mentioned actlo”
9.0
Il.2
Type of physician General
practitioner
618
Specialist Nursing home physician
Table 13.9
7. I
9.9
2.8
5.8
6.8
32.4
67.6
100.0
8.5
8.8
2.7
9.3
4.3
33.6
66.4
100.0
15.1
19.9
2.2
9.7
0.4
47.3
52.7
100.0
II76 463
Type of physician, according to last-mentioned
MDEL-action’)
(death certificate
study)
MDEL-
No
TOFJl
action
MDELaction
Last-mentioned Number
of
MDEL-action’)
4a/b
4c
5
6a/b
7
%
%
%
%
%
%
%
%
9.2
IS.0
3.8
8.6
2.7
39.4
60.6
100.0
100.0
questionnaires processed % last-mentioned action Type of physician
General practitioner
2356
6.9
13.4
4.2
5.7
3.7
33.9
66. I
Specialist
I766
8.7
15.1
3.8
IO.0
2.8
40.4
59.6
100.0
986
17.3
20.8
3.5
13.9
0.4
55.9
44.1
100.0
89
1.7
-
0.5
0.6
3.8
96.2
loo.0
Nursing home physician other (= other function and unknown)
1.0
1)
In contrast to Tables 13.7 CF.71 and 13.8 (F.8), Table 13.9 (F.9) only has row percentages
2)
Taking into account the probability that the end of life was hastened by: 4a
withholding
4b
withdrawing
4c
intensifying
a treatment a treatment alleviation of pain and/or symptoms
In part with the purpose of hastening the end of life by: 5
intensifying
alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a
withholding
6b
withdrawing
7
prescribing,
a treatment a treatment supplying or administering
a drug
260 Table F.10
Administration of a drug with the explicit purpose of hastening the end of life (prospective study) number
n=l05
weighted
% of
number
total
n=5862
n= I25574
Administration
(at least also) by physician
65
3940
3.1
Administration
(also) by nurse (not by physician)
29
III2
0.9
Administration
by others,
not (also) by physician or nurse
3
193
0.2
Administration
by patient,
not (also) by physician, nurse or other
7
560
0.4
I
57
53
3307
Unknown
Number
of possible cases of euthanasia
(see text)
0.05
2.6
Table 13.10 Administration of a drug with the explicit purpose of hastening the end of life (death certificate study) number
n=204
Administration
(at least also) by physician
Administration
(also) by nurse (not by physician)
Administration
by others,
not (also) by physician or nurse
Administration
by patient,
not (also) by physician, nurse or other
Unknown
Number
of possible cases of euthanasia
(see text)
weighted
% of
number
total
n=I 125
n=41587
I51
775
1.9
23
193
0.5
9
58
0. I
I7
82
0.2
4
I7
0.04
I38
701
1.7
261 Table F.ll
DNR decisions (prospective study) Ge”Wd
Specialist Nursing
practitioner n= 618
n= II76
%
Explicitly
agreed not to resuscitate’)
home
Total
physician
%
15
61
n= 463
“= 2257
%
%
I8
34
-
with colleagues
4
53
I2
26
-
with nursing staff
4
58
I4
28
-
with patient
7
8
3
7
_
wth
I2
31
IO
20
relatives of patient
Only implicitly No DNR
agreed
decision
Unknown Total
1)
2
0
52
IO
El
37
31
54
2
I
0
I
100
100
IO0
100
The agreement may have been made with one or more of the persons mentioned below
Table 13.12 DNR decisions (death certificate study) General
Specialist
Nursing
practitmner
Explicitly
agreed not to resuscitate’)
home
Total
physician
“= 2356
n= 1766
n= 986
n= 5197
%
%
%
%
I6
60
28
35
-
with colleagues
6
48
20
25
-
with
nursing staff
6
53
23
27
-
with
patient
_
with relatives of patient
Only implicitly No DNR Unknown Total
8
agreed
de&on
II
9
6
8
32
I8
20
I
0
36
7
80
38
33
56
3
2
3
2
100
100
100
100
1) The agreement may have been made with one or more of the persons mentioned below.
262 Table F.12
Requests to terminate life that were not carried out (prospective
study)
n= 2157 96
Explicit request that was not carried
3.3
out ‘):
-
yes, request by patient
-
yes, request
by relatives
I .o
-
yes, request
by others
0. I
No request that was not carried
2.5
93.9
out
Unknown
2.8
100.0
Total
Table 13.13 Requests to terminate life that were not carried out (death certificate study)
“= 5197 %
Explicit request that was not carried
out ‘):
2.2
-
yes. request
by patient
-
yes, request by relatives
I.1
-
yes, request by others
0. I
No request that war not carried
I .4
out
92.5 5.3
Unknown
loo.0
Total
1)
Request could have been made by one or mcm persons.
Comparison of the death certificate study and the prospective study
Appendix F
This appendix belongs to the text of Chapter 15. In that chapter the results of the prospective study are discussed and compared to the results of the death certificate study (Chapter 13). In order to facilitate understanding of the report the authors decided to present all comparative tables in the present appendix. It was considered that there is a high degree of similarity between the results of the two part-studies. The tables derived from the prospective study will be presented first in all instances followed by the corresponding table from the death certificate study.
251 Table F.l
MDEL-actions
performed
death certificate
by the physician;
Prospective
of prospective
study
Replies given
mentioned
MDEL-action
MDEL-action
I+)= 2257
n’)= 2257
n’)= 5197
n’)= 5 197
%‘)
%
%‘)
%
64 .b
60.6
60.6
“A.
9.0
First contact after the death
2.1
2.
I
2.8
Other
cases where
study
MDEL-action
“A.
unexpected
with
of which as last
given
Stratum 0’)
Sudden and totally
study
certificate
Replies
mentioned
64.6
petformed
Death
of which as last
total
No MDEL-action
comparison
study
death
9.0 2.8
29.2
29.2
18.I
18.1
33.3
33.3
30.6
30.6
no MDEL-
action was performed (no ‘yes’ to questions 4 to 7)
MDEL-action
performed
35.4
35.4
39.4
39.4
Taking into account the probability
that the end of life was
hastened by: 4a.
withholding
4b.
withdrawing
4c.
intensifying and/or
a treatment a treatment alleviation
5.5
21.6
5.6
13.2
3.5
13.9
3.6
I.2
25.0
15.0
7.0
2.6
7.6
3.6
of pain
20.2
symptoms
In part with the purpose
19.6
I
of
hastening the end of life by: 5.
intensifying
alleviation
pain and/or
symptoms
With
the exphcit purpose
of
of
hastening the end of life by: 6a.
withholding
6b.
withdrawing
a treatment a treatment
7.
prescribing.
supplying or
administering
a drug
7.2
3.5
7.1
4.3
5.7
4.4
5.1
4.3
4.7
4.7
2.7
2.7
100.0
Total
1.
100.0
Total number of standard questionnaires
IOO.0
100.0
on which this column is based (plus stratum 0 for
the death certificate study). 2.
Because no standard questionnaires distribution
had been sent of stratum 0 (death certificate study), the
over the next three categories
MDEL-action
was performed
questionnaire).
is not known.
It is known,
however,
that no
in these cases (see section 12.2 and the text of the standard
In the death certificate
study those 3 categories
do not contain stratum
0
deaths. 3.
The percentages
in this column
add up to more than
questions 4 to 7 could be answered with “yes”.
100’S, because
more than one of
252 Table F.2
Extent of shortening of life, based on last mentioned MDEL-action (prospective study) Last-mentioned
Unknown no shortening
MDEL-action’)
4a
4b
4c
5
6a
6b
7
TOtA
n= 128
“= 77
“= 266
“= 55
n= 86
“= 101
n= 105
“= 818
%
%
%
%
%
%
%
%
2
26
8
5
I3
6
4
4
35
33
42
I9
9
13
7
3
18
I9
32
7
24
24
I7
I day to I week
26
27
I9
25
33
26
28
25
I to 4 weeks
I5
I4
5
IO
24
26
37
I7
I to 6
IO
2
2
7
24
7
7
7
3
2
100
100
~24 hours
months
> I12 year Total
Table 13.2
_ IO0
100
100
100
2
I
100
100
Extent of shortening of life, based on last mentioned MDEL-action (death certificate study) Last-mentioned
MDEL-action’)
4a
4b
4c
5
6a
6b
7
Total
“= 309
“= 204
n= 922
n= 244
n= 244
n= 234
n= 204
n= 2361
%
%
%
%
%
%
%
%
Unknown
I3
I7
I7
2
5
3
I
II
no shortening
46
48
48
I2
I6
I2
I
34
~24 hours
5
II
I6
35
7
20
24
I6
I day to I week
I7
I3
I4
41
35
46
41
25
I to 4 weeks
II
8
4
9
24
I4
I9
IO
I to 6 months
7
2
2
I
IO
3
II
4
> I12 year
I
0
0
_
3
I
3
I
100
100
100
100
100
100
100
100
Total
1)
Taking into account the probability that the end of life was hastened by: 4a withholding a treatment 4b withdrawing a treatment 4c
intensifying alleviation of pain and/or symptoms
In part with the pm-pose of hastening the end of life by: 5
intensifying alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a withholding a treatment 6b withdrawing a treatment 7
prescribing, supplying or administering a drug
253 Table F.3
Discussion with the patient about the decision to be taken, according to “lastmentioned” MDEL-action (prospective study) Last-mentioned
MDEL-action’) Total with MDEL-
4a
4b
4c
5
6a
6b
7
action
“= 128
“= 77
II= 266
“= 55
“= 86
“= 101
n= 105
n= 818
%
%
%
%
%
%
%
%
Discussed
26
34
29
44
34
47
78
40
Not discussed
69
61
58
50
64
49
22
54
6
5
13
6
2
4
I00
100
IO0
100
100
100
100
100
Unknown Total
Table 13.3
7
Discussion with the patient about the decision to be taken, according to “lastmentioned” MDEL-action (death certificate study) Last-mentioned
MDEL-action’) Total with MDEL-
4a
4b
4c
5
6a
6b
7
action
n= 309
n= 204
n= 922
“= 244
n= 244
n= 234
“= 204
n= 2361
%
96
%
%
96
%
%
%
Discussed
27
19
30
53
33
39
83
36
Not discussed
63
67
52
45
64
59
I7
54
9
I4
18
2
3
2
100
100
lo0
100
100
100
100
loo
Unknown Total 1)
Taking into account the probability that the end of life was hastened by: 4a
withholding
4b
withdrawing
4c
intensifying
a treatment a treatment alleviation of pain and/or symptoms
In part with the purpose of hastening the end of life by: 5
intensifying
alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a
withholding
6b
withdrawing
7
prescribing,
a treatment a treatment supplying or administering
a drug
IO
254 Table F.4
Decision-taking
after discussion
action’)(prospective
with the patient, according
to last-mentioned
MDEL-
study)
Last-mentioned MDEL-action’)
4alb
4c
5
6al6b
7
Total
n=54
“= 83
n=25
“= 70
n=78
n=310
%
%
%
%
%
%
request by patient
47
48
64
68
85
64
Explicit and repeated request
37
38
60
51
83
54
Decision taken upon explicit
Written advance directive Patient totally able to take a decision
3
4
IO
II
58
20
82
a9
96
88
97
90
Initiative for discussion came from’): -
patient
38
42
54
54
a3
55
-
physician (and not from patient)
58
56
22
43
I6
40
In addition to discussion with patient there was discussion with’) -
colleagues
67
53
70
65
88
69
-
nursing staff
51
63
72
50
49
55
-
relatives
70
75
96
80
81
79
-
noone
5
4
7
2
4
Table 13.4
Decision-taking action’)(death
after discussion certificate
with the patient, according
to last-mentioned
MDEL-
study)
Last-mentioned MDEL-action’)
4a/b
4c
5
6al6b
7
Total
n=l36
n= 291
n=l34
“= I85
n=l79
n= 925
%
%
%
%
%
%
request by patient
52
48
53
63
84
59
Explicit and repeated request
47
38
49
55
79
51
3
3
IO
6
42
II
83
a4
a4
75
96
a4
Decision taken upon explicit
Written advance directive patient totally able to take a decision
Initiative for discussion came from’): -
patient
41
39
58
46
74
49
-
physician (and not from patient)
54
56
32
49
21
54
In addition to discussion with patient there was discussion with’) -
colleagues
57
58
60
62
81
63
-
nursing staff
47
49
59
64
40
52
65
70
77
a2
a7
76
9
a
5
2
2
6
_ relatives -
noone
1)
Percentages
in this table always refer to the total number of patients per last-mentioned
action with whom this action had been discussed. 2)
see 1) table F.2.
3)
More than one answer could be given to this question.
255 Table F.6
Decision-taking MDEL-action’)
without
discussing
(prospective
study)
with
the patient,
Last-mentioned
according
to last-mentioned
MDEL-action’)
4alb
4c
5
6aIb
7
Total
n= 142
“= 157
n=27
n= 112
n- 27
n=465
%
Yo
%
%
%
%
No discussion possible
06
77
78
93
90
84
Patient unable to take a decision
80
70
78
91
88
80
2
9
35
13
33
I
8
5
34
26
44
15
I
3
91
92
61
73
53
83
Patient had at some time indicated a wish to hasten the end of life
I
An explicit request to hasten the end of life of patient by: _ relatives -
physician/nurse/others (but not relatives)
-
noone
Decision discussed with’): _ colleagues
43
29
38
61
64
43
-
nursing staff
61
54
56
77
57
62
-
relatives
53
49
75
77
64
59
-
noone
I6
28
I7
5
7
I7
Table 13.6
Decision-taking MDEL-action’)
without
discussing
(death certificate
with
the patient,
according
to last-mentioned
study) Last-mentioned
MDEL-acti&)
4alb
4c
5
6a/b
7
n= 321
n= 460
n=lOS
“= 282
n= 25
%
%
%
%
%
%
No discussion possible
91
77
88
94
100
06
Patient unable to take a decision
87
72
77
88
85
81
II
9
22
I6
25
I3
7
a
25
26
49
14
Total n=l20l
patient had at some time indicated a wish to hasten the end of life An explicit request to hasten the end of life of patient by: -
relatives
-
physician/nurse/others 0
I
I
2
3
I
84
a4
70
67
49
78
_ colleagues
42
31
43
53
70
42
_ nursing staff
55
36
58
66
79
51
-
relatives
68
52
70
81
87
66
-
noone
I6
29
I5
5
3
18
(but not relatives) -
noone
Decision discussed with]):
1)
The percentages artinn wit.h whnm
in this table always refer to the total number of patients per last-mentioned t.hP nrtinn
hnd not. henn dinrn~ned.
256 Table F.6
Reasons for not discussing with the patient, according to la&mentioned
MDEL-
action’) (prospective study) Last-mentionedMDEL-actior?)
4alb
4c
5
6alb
7
Total
n= 142
n= 157
n=27
n= 112
n= 27
n=465
%
%
%
%
%
%
Too young
I
Emotionallytoo labile(b)
3
5
4
I
7
3
I3
25
24
I5
25
I9
7
I4
9
6
2
9
Clearly the best for the patient (c) Would have done more harm rhan good (d) Only b and/or c and/or d and no other answeringcategory (abilityto take a
I3
I8
I4
7
Temporarily unconscious
3
2
9
2
3
Permanentlyunconscious
20
IO
21
30
20
Reduced consciousness
33
41
38
43
39
Demented
38
29
24
28
31
I
4
7
9
decisionnot known)
Mentally handicapped
I
Mental disorder
5
Other reason
IO
I 5 II
Unknown
Table 13.6
I3
II 6
2
5
Reasons for not discussing with the patient, according to last-mentioned MDELaction’) (death certificate study) Last-mentionedMDEL-action’)
4a/b
4c
5
6a/b
7
Total
n= 321
n= 468
n=l05
n= 282
n= 25
II=1201
%
%
%
%
%
%
Too young
2
I
I
4
9
2
Emotionallytoo labile (b)
I
2
5
I
3
2
II
28
27
14
26
20
6
6
II
6
0
6
8
II
Clearly the best for the patient (c) Would have done more harm than good (d) Only b and/or c and/or d and no other answeringcategoty (abilityto take a decisionnot known)
7
I7
I8
6
Temporarily unconscious
4
3
I
5
Permanentlyunconscious
27
I2
4
II
24
23
I9
Reduced consciousness
39
46
57
42
57
44
Demented
32
22
23
32
II
27
Mentally handicapped
I
2
I
I
Mental disorder
5
2
2
I 3
2
Other reason
2
3
2
3
5
3
unknown
4
6
4
2
8
4
1)
Morethan one answercould be given to this question
2)
See 1) table F’2
257 Table F.7
Age and sex, according to last-mentioned MDEL-action (prospective study) MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action’)
Mortality
4alb
4c
5
6alb
7
n= 205
n= 266
“= 55
“= 187
n= 105
“= 818
n=128786
Yo
%
%‘)
%‘)
%
%
%
%
%
35
65
9
II
3
8
5
o-49
34
67
4
8
2
6
8
6
8
SO-64
34
66
8
I2
I?
I2
25
13
I3
96 last-mentioned action
36
AIF
65-79
36
65
33
42
55
32
48
39
37
80+59
59
41
55
39
26
50
20
42
42
Total
36
65
100
100
100
IO0
100
100
100
SeX Males
32
68
45
47
48
51
57
49
52
Females
40
60
56
53
52
49
43
51
48
Total
35
65
100
100
100
100
100
100
100
Table 13.7
Age and sex, according to last-mentioned MDEL-action (death certificate study) MDEL-
No
All
action
MDEL-
MDEL-
,n The
action
actions
Netherlands
Last-mentionedMDEL-action’)
Mortality
together
19901)
n=l28786
4aib
4c
5
6alb
7
n=513
n=922
n= 244
“= 478
“= 204
n= 236 I
%‘)
%‘)
%
%
%
%
%
%
39
61
9
I5
4
9
3
39
o-49
32
60
5
6
6
9
I4
7
8
SO-64
40
60
9
I6
21
9
24
I4
I3
Yo
% last-mentioned action
Age
65-79
38
62
31
40
41
32
38
36
37
ao+
42
58
56
38
32
50
25
43
42
Total
39
61
100
100
100
100
100
100
100
Males
36
64
46
48
48
45
61
40
52
Females
43
57
54
52
52
55
39
52
48
Total
39
61
100
100
100
100
100
100
100
SC%
1)
See 1) table F2
258 Table F.8
Cause of death, according to last-mentioned MDEL-action (prospective study) MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action ‘)
Mortality
4alb
4c
5
6alb
7
n= 205
n= 266
n= 55
n= 187
n= 105
n= 818
n=l28786
%’
%
%
%‘)
%‘)
%
%
%
%
35
65
9
II
3
8
5
36
57
43
23
51
71
30
63
42
27
I7
83
23
I6
I4
I9
5
I7
30
II
I2
% last-mentioned action
Cause of death C.XKer Cardiovascular diseases
Diseasesof the nervous system(incl. stroke)
41
59
I8
Pulmonarydiseases
4I
59
I3
8
I6
I2
I4
8
5
II
I4
II
External causes
9
91
0.6
0.2
-
I.3
0.8
0.6
4.1
Mental disorders
52
48
2.6
1.7
-
3.7
-
2.0
0.9
categories)
37
63
21
I2
3
I9
5
I4
I8
Total
36
65
100
100
100
100
100
100
100
0
Other (all other
Table 13.8
Cause of death, according to last-mentioned MDEGaction (death certificate study) Mortality
MDEL-
No
All
action
MDEL-
MDEL-
in The
action
actions
Netherlands
together
1990’)
Last-mentionedMDEL-action’)
4aib
4c
5
6alb
7
n= 513
n= 922
n= 244
n= 478
n= 204
n= 2361
n=l28786
%‘)
%‘)
%
%
%
%
%
%
%
39
61
9
I5
4
9
3
39
59
41
28
53
61
31
68
44
27
21
79
I7
I6
9
21
9
I6
30
% last-mentioned action
Cause of death CWKer Cardiovascular diseases
Diseasesof the nervous system(incl. stroke)
43
57
21
9
IO
I5
2
I3
I2
Pulmonarydiseases
37
63
9
5
a
8
6
7
a
External causes
I2
88
I .5
I .I
I.8
I.2
0.3
1.2
4.1
Mental disorders
52
48
2.1
0.7
0.6
1.7
-
1.2
0.9
Other (all other categories)
43
58
21
I6
9
23
I5
I8
I8
Total
39
61
100
100
100
100
100
100
100
259 Table F.9
Type of physician, according to last-mentioned
MDEL-action’)
(prospective
study)
MDEL-
No
action
MDEL-
Total
action Last-mentioned Number
of
MDEL-action’)
4a/b
4c
5
6alb
7
%
%
%
%
%
%
%
2.6
7.9
4.7
35.4
64.6
IOO.0
questionnaires processed
%
% last-mentioned actlo”
9.0
Il.2
Type of physician General
practitioner
618
Specialist Nursing home physician
Table 13.9
7. I
9.9
2.8
5.8
6.8
32.4
67.6
100.0
8.5
8.8
2.7
9.3
4.3
33.6
66.4
100.0
15.1
19.9
2.2
9.7
0.4
47.3
52.7
100.0
II76 463
Type of physician, according to last-mentioned
MDEL-action’)
(death certificate
study)
MDEL-
No
TOFJl
action
MDELaction
Last-mentioned Number
of
MDEL-action’)
4a/b
4c
5
6a/b
7
%
%
%
%
%
%
%
%
9.2
IS.0
3.8
8.6
2.7
39.4
60.6
100.0
100.0
questionnaires processed % last-mentioned action Type of physician
General practitioner
2356
6.9
13.4
4.2
5.7
3.7
33.9
66. I
Specialist
I766
8.7
15.1
3.8
IO.0
2.8
40.4
59.6
100.0
986
17.3
20.8
3.5
13.9
0.4
55.9
44.1
100.0
89
1.7
-
0.5
0.6
3.8
96.2
loo.0
Nursing home physician other (= other function and unknown)
1.0
1)
In contrast to Tables 13.7 CF.71 and 13.8 (F.8), Table 13.9 (F.9) only has row percentages
2)
Taking into account the probability that the end of life was hastened by: 4a
withholding
4b
withdrawing
4c
intensifying
a treatment a treatment alleviation of pain and/or symptoms
In part with the purpose of hastening the end of life by: 5
intensifying
alleviation of pain and/or symptoms
With the explicit purpose of hastening the end of life by: 6a
withholding
6b
withdrawing
7
prescribing,
a treatment a treatment supplying or administering
a drug
260 Table F.10
Administration of a drug with the explicit purpose of hastening the end of life (prospective study) number
n=l05
weighted
% of
number
total
n=5862
n= I25574
Administration
(at least also) by physician
65
3940
3.1
Administration
(also) by nurse (not by physician)
29
III2
0.9
Administration
by others,
not (also) by physician or nurse
3
193
0.2
Administration
by patient,
not (also) by physician, nurse or other
7
560
0.4
I
57
53
3307
Unknown
Number
of possible cases of euthanasia
(see text)
0.05
2.6
Table 13.10 Administration of a drug with the explicit purpose of hastening the end of life (death certificate study) number
n=204
Administration
(at least also) by physician
Administration
(also) by nurse (not by physician)
Administration
by others,
not (also) by physician or nurse
Administration
by patient,
not (also) by physician, nurse or other
Unknown
Number
of possible cases of euthanasia
(see text)
weighted
% of
number
total
n=I 125
n=41587
I51
775
1.9
23
193
0.5
9
58
0. I
I7
82
0.2
4
I7
0.04
I38
701
1.7
261 Table F.ll
DNR decisions (prospective study) Ge”Wd
Specialist Nursing
practitioner n= 618
n= II76
%
Explicitly
agreed not to resuscitate’)
home
Total
physician
%
15
61
n= 463
“= 2257
%
%
I8
34
-
with colleagues
4
53
I2
26
-
with nursing staff
4
58
I4
28
-
with patient
7
8
3
7
_
wth
I2
31
IO
20
relatives of patient
Only implicitly No DNR
agreed
decision
Unknown Total
1)
2
0
52
IO
El
37
31
54
2
I
0
I
100
100
IO0
100
The agreement may have been made with one or more of the persons mentioned below
Table 13.12 DNR decisions (death certificate study) General
Specialist
Nursing
practitmner
Explicitly
agreed not to resuscitate’)
home
Total
physician
“= 2356
n= 1766
n= 986
n= 5197
%
%
%
%
I6
60
28
35
-
with colleagues
6
48
20
25
-
with
nursing staff
6
53
23
27
-
with
patient
_
with relatives of patient
Only implicitly No DNR Unknown Total
8
agreed
de&on
II
9
6
8
32
I8
20
I
0
36
7
80
38
33
56
3
2
3
2
100
100
100
100
1) The agreement may have been made with one or more of the persons mentioned below.
262 Table F.12
Requests to terminate life that were not carried out (prospective
study)
n= 2157 96
Explicit request that was not carried
3.3
out ‘):
-
yes, request by patient
-
yes, request
by relatives
I .o
-
yes, request
by others
0. I
No request that was not carried
2.5
93.9
out
Unknown
2.8
100.0
Total
Table 13.13 Requests to terminate life that were not carried out (death certificate study)
“= 5197 %
Explicit request that was not carried
out ‘):
2.2
-
yes. request
by patient
-
yes, request by relatives
I.1
-
yes, request by others
0. I
No request that war not carried
I .4
out
92.5 5.3
Unknown
loo.0
Total
1)
Request could have been made by one or mcm persons.