Transcript TRUTH TELLING TO TERMINALLY ILL PATIENTS IN BULGARIAN HOSPICES

TRUTH TELLING TO TERMINALLY ILL
PATIENTS IN BULGARIAN HOSPICES
SILVIYA ALEKSANDROVA-YANKULOVSKA
Medical University of Pleven, Pleven, Bulgaria
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OLD DEBATE
ARGUMENTS FOR
 Respect for autonomy
 Settle family and other
problems
 Effective palliative treatment
 Strengthens relationships
 Facilitated communication in
the family
 Better team work
 Better physical condition
(anxiety, distress, DNR)
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ARGUMENTS AGAINST
 Depriving from hope
 Stress > suicide?
 Lack of time for adequate
information process
 Lack of training
 Uncertain prognosis
 Difficult and causing stress in
health professionals
ETHICAL DOCUMENTS
 The Charter on Medical Professionalism (US Accreditation
Council for Graduate Medical Education) > openness and honesty
in physicians' communication with patients
 World Medical Association Declaration on the rights of
the patient > “Exceptionally, information may be withheld
from the patient when there is good reason to believe that
this information would create a serious hazard to his/her life
or health”.
LEGAL FRAMEWORK
 Bulgarian Health Act > no possibility to withhold
information
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TRADITIONS
 Asian and Muslim cultures > family rather than the patient
 Western cultures > priority of autonomy
However
Paternalism still exists!
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OBJECT
 To study the issue of truth telling to terminally ill patients in
Bulgarian hospices.
METHODS
 Self-administered questionnaire
 Personnel and patients’ relatives
 17 in-patient, 12 home care hospices and 5 palliative care units
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Characteristics of participants
STAFF MEMBERS
Number
190
Percentage
100.0
102
27
61
53.68
14.21
32.11
16
141
33
8.42
74.21
17.37
216
100.0
108
64
44
50.00
29.63
20.37
50
115
6
23.15
53.24
2.78
Type of hospice
In-patient hospices
R
E
S
U
L
T
S
Home care hospices
Palliative care units
Professional position
Physician
Nurse
Other
PATIENTS’ RELATIVES
Type of hospice
In-patient hospices
Home care hospices
Palliative care units
Relationship
Spouse
Child
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Parent
PATIENTS’ AUTONOMY
Most patients are autonomous
Small part are autonomous
No autonomous patients
Not specified
2.6
2.5
100%
6.1
2.6
6.7
5.8
3.6
6.1
90%
25.7
80%
70%
60%
66.4
55.3
71.7
50%
40%
62.1
30%
20%
24.4
35.3
23.1
10%
0%
In-patient hospices
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Home care settings
Palliative care
Total
PATIENTS’ AWARENESS OF THE DIAGNOSIS
Do the patients know their
diagnosis?
In-patient
hospice
Home care
settings
Palliative care
units
n
%
n
%
n
%
No
7
5,9
1
2,6
-
-
The majority Yes
60
50,8
26
66,7
52
78,8
Small part Yes
49
41,5
11
28,1
13
19,7
Not specified
2
1,7
1
2,6
1
1,5
Total
118
39
66
(based on data from hospices’ managers and personnel)
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PATIENTS’ AWARENESS OF THE DIAGNOSIS
Yes
No
100%
90%
80%
70%
60%
50%
64,8
40%
76,6
81,8
30%
20%
35,2
23,4
18,2
71,8
28,2
10%
0%
In-patient hospices
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Home care settings
Palliative care units
Total
(based on data from relatives)
TIME AND SOURCE OF INFORMATION
When and
who informed
the patient
about the
diagnosis?
In-patient hospices
Managers and
personnel
Home care settings
Managers and
personnel
Relatives
Palliative care units
Managers and
personnel
Relatives
Relatives
N
%
N
%
N
%
N
%
N
%
N
%
7
5,9
38
35,2
1
2,6
15
23,4
-
-
8
18,2
Physician
before
hospice
admission
60
50,4
47
43,5
26
66,7
40
62,6
35
53,1
24
54,5
Physician
after hospice
admission
16
13,4
7
6,5
2
5,1
-
-
17
25,8
5
11,4
Relatives
22
18,5
16
14,8
4
10,2
7
10,9
2
3,0
6
13,6
Combined
2
1,7
-
-
2
5,1
-
-
8
12,1
-
-
Not specified
12
10,1
-
-
4
10,3
2
3,1
4
6,0
1
2,3
TOTAL
119
100,0
108
100,0
39
100,0
64
100,0
66
100,0
44
100,0
Don’t know
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INVOLVEMENT IN DECISION-MAKING
In-patient
hospice
Home care
settings
n
%
n
%
n
%
Yes
42
35,4
20
51,3
24
36,4
Yes, when it is possible
63
52,9
16
41,0
39
59,1
Only relatives
13
10,9
3
7,7
1
1,5
Not specified
1
0,8
-
-
2
3,0
119
100,0
39
100,0
66
100,0
Do you involve patients and their
relatives in decision-making?
Total number of respondents
Palliative care
units
(based on data from hospices’ managers and staff)
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CONCLUSION
Following the recent tendencies in bioethics in favor of respect
for autonomy, Bulgarian physicians inform patients and try to
develop partnership in most of the therapeutic relations. The
issue of truth telling in case of terminally ill patients, however, is
still one of the most complex and sensitive situations presenting
moral dilemma in clinical practice. The last amendments in
health law closed the door for the possibility not to tell the truth.
Does this strict rule make things easier in practice?
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THANK YOU
FOR YOUR ATTENTION!
Contact information:
Assoc. Prof. Dr. Silviya Aleksandrova-Yankulovska, MD, PhD, MAS
Medical University of Pleven
Dean, Faculty of Public Health
1, Kliment Ohridski str.
5800 Pleven, Bulgaria
[email protected]
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