วารสารสมาคมจิตแพทย์แห่งประเทศไทย
Journal of the Psychiatrist
Association of Thailand
ISSN: 0125-6985
บรรณาธิการ มาโนช หล่อตระกูล
Editor: Manote
Lotrakul, M.D.
Thai
Patients' Perspectives About Truth Telling
Anant
Thanapreasertgorn, M.D.*
Tana
Nilchaikovit, M.D.**
Abstract
Objective To survey
the attitudes of the patients towards disclosure of diagnosis and
prognosis of serious illness such as cancer, and the knowledge of
their illness.
Methods The patient
samples were recruited from 3 major wards; internal medicine, surgery,
and gynecology. From each ward, 15 cancer patients and 25 non-cancer
patients were selected by stratified randomization, making the total
of 120 patient samples (45 cancer, 75 non-cancer). Patients who
were too ill or could not be interviewed of any reasons were excluded.
They were interviewed by the structured questionnaire in order to
assess the knowledge of their illness and desire for information,
and their general attitudes about truth disclosure to cancer patients.
Results Eighty-eight
percent of the non-cancer patients knew about their diagnosis. Seventy-
one percent of the cancer patients knew that they had cancer, and
25.8% of all patients and 15.6% of patients with cancer knew about
their treatment plan and prognosis in detail. Eighty eight percent
of patients would like to know their prognosis.
Conclusions The patients
were not satisfied with their knowledge of their illness and treatment
plan, half of them felt that the doctor had not given enough information.
The patients seemed to have quite open attitudes towards truth disclosure
even some of them showed some degrees of ambivalence or disagree.
Factors found to have influence on knowledge of their illness and
towards truth disclosure were gender, age, education, and the diagnosis
of cancer.
J Psychiatr Assoc Thailand
1997 ; 42(4) : 212-9.
Key words: truth disclosure,
cancer
* Psychiatry
Service, Taksin Hospital, Klongsan Road, Bangkok 10600
** Department
of Psychiatry, Ramathibodi Hospital, Mahidol university, Bangkok10400
มุมมองของผู้ป่วยไทยในการแจ้งข้อมูลเกี่ยวกับโรคที่ป่วยตามความเป็นจริง
อนันต์
ธนาประเสริฐกรณ์ พ.บ.*
ธนา
นิลชัยโกวิทย์ พ.บ.**
บทคัดย่อ
การวิจัยนี้มีวัตถุประสงค์ เพื่อสำรวจเจตคติของผู้ป่วยไทยต่อการที่แพทย์แจ้งการวินิจฉัย
และการดำเนินโรคของโรคที่ร้ายแรง เช่น มะเร็ง และสำรวจความรู้เกี่ยวกับโรคที่ตนเองเป็นอยู่
วิธีการ สุ่มตัวอย่างผู้ป่วยในจากแผนกอายุรกรรม ศัลยกรรม และนรีเวชกรรม
ในแต่ละแผนกได้เลือกผู้ป่วยที่ป่วยเป็นมะเร็ง 15 คน และผู้ป่วยด้วยโรคอื่น
25 คน โดยได้ผู้ป่วยรวม 120 คน ผู้ป่วยที่ป่วยหนักหรือผู้ป่วยที่ไม่สามารถทำการสัมภาษณ์ได้ไม่รวมอยู่ในกลุ่มตัวอย่างนี้
การสัมภาษณ์ทำโดยใช้ structured questionnaire ในการประเมินความรู้เกี่ยวกับโรคของผู้ป่วยเอง
และความต้องการในการทราบข้อมูล และเจตคติทั่วไปเกี่ยวกับการบอกความจริงต่อผู้ป่วยโรคมะเร็ง
ผลการวิจัย ร้อยละ 88 ของผู้ป่วยที่ไม่ได้ป่วยเป็นมะเร็งทราบการวินิจฉัยของตนเอง,
ร้อยละ 71.1 ของผู้ป่วยโรคมะเร็งทราบว่าตนเองป่วยเป็นมะเร็ง, ร้อยละ
25.8 ของผู้ป่วยทั้งหมด และร้อยละ 15.6 ของผู้ป่วยโรคมะเร็งทราบเกี่ยวกับแผนการรักษาและการพยากรณ์โรค
และร้อยละ 88.2 ของผู้ป่วยทั้งหมดต้องการทราบการพยากรณ์โรคของตนเอง
สรุป ผู้ป่วยส่วนใหญ่ยังไม่ทราบข้อมูลเกี่ยวกับการเจ็บป่วยของตนเองเพียงพอ
โดยที่ครั้งหนึ่งมีความรู้สึกว่าแพทย์ยังให้ข้อมูลไม่เพียงพอ ผู้ป่วยค่อนข้างมีเจตคติที่เปิดกว้างต่อการแจ้งข้อมูลตามความเป็นจริง
แม้จะมีความรู้สึกสองจิตสองใจก็ตาม ปัจจัยที่มีผลต่อความรู้เกี่ยวกับโรคของผู้ป่วยเอง
และการแจ้งข้อมูลตามความเป็นจริงได้แก่ เพศ, อายุ, และผลการวินิจฉัยว่าเป็นมะเร็ง
วารสารสมาคมจิตแพทย์แห่งประเทศไทย
2540; 42(4) : 212-9.
คำสำคัญ: การแจ้งข้อมูลตามความเป็นจริง,
มะเร็ง
* กลุ่มงานจิตเวช
โรงพยาบาลตากสิน ถนนคลองสาน กรุงเทพ 10600
**
ภาควิชาจิตเวชศาสตร์ คณะแพทยศาสตร์โรงพยาบาลรามาธิบดี ถนนพระรามหก
กรุงเทพ 10400
Telling
patients that they have cancer is a particular difficult clinical
skill1. Attitudes towards health care in general, and
towards cancer in particular, have been changing rapidly in recent
years with patients now tending to take a more active role in the
management of their illness2. Nevertheless, patients
differ in their ability to integrate threatening information and
that the concordance between disclosure of information and the patents
ability to deal with this information would be the ideal3.
The purpose of this study is to explore the attitudes and behavior
of patients towards disclosure of diagnosis and prognosis of their
illness, especially a serious illness such as cancer. We hope that
the data gained will provide a better understanding of patients'
needs and attitudes towards the truth disclosure.
MATERIALS AND METHODS
The patient samples were selected
from 3 major inpatients wards; internal medicine, surgery and gynecology.
From each ward, 15 cancer patients, and 25 non-cancer patients were
selected by stratified randomization, making the total of 120 patient
samples (45 cancer, 75 non-cancer). Patients who were too ill or
could not be interviewed because of any reasons (such as deafness
or organic mental syndrome) were excluded. All the eligible patients
approached agreed to participate in the study. The patients were
then interviewed by a structure questionnaire in order to assess
the knowledge of their illness and desire for information about
it, and their general attitudes about truth disclosure to cancer
patients.
The patent sample consisted
of 87 women (72.5 and 33 men (27.5%) with a mean age of 42 years
(range of 14-80 years). Sixty-six patients (55%) had elementary
education (4-6 years), 34 (28.3%) had secondary school education
(12 years), and 15 (12.5%) had higher education. In terms of social
status and income, about half of the patients were middle or lower
middle class, about 40% were lower class, and about 10% were upper
middle class. The functional status of the patient was rated according
to the Karnofsky Performance status Scale4. Four patients
(3.3%) had Karnofsky scale scores at around 60 (required occasional
assistance from other but able to care for most needs), 33 (27.5%)
had scores around 70 (care for self but unable to carry on normal
activities or work), 27 (22.5%) had scores around 80 (normal activities
with effort), and 24 (20%) had only minor signs of symptoms (score
90) .
RESULTS
As shown in table 1, 88% of
the non-cancer patients knew their diagnosis, while 71.1% of the
cancer patients knew that they had cancer of malignancy and most
of these patients (81.2%) felt that telling them the diagnosis truthfully
had been correct. However, only 25.8 % of all the patients, and
15.6% of patients with cancer knew about their treatment plans and
the pros and cons of the treatment in detail. Almost half (45.8%)
thought that their doctors had not give them enough information,
and only 24.2 % thought they had a good understanding about their
illness and 79% of the patients felt that they needed more information.
Most of the patients (38.2%)
answered that they would like to know the diagnosis if they had
cancer, and 81.5% would also like to know the prognosis either good
or bad. However, less (67.2%) would like their relatives to be informed
if the relatives had cancer. Many patients (35.8%) also agreed that
doctors should not tell the unpleasant truth to patients since
it might destroy patients' hope, while about the same number of
patients (36.7%) disagreed with the policy.
Factors found to have influence
on Thai patients attitudes and behavior concerning the disclosure
of diagnosis and treatment of their illness were gender, age, education,
and the diagnosis of cancer. Female patients had better knowledge
about their diagnosis (P=0.007) and treatment plan (P=0.017) than
male patients, and there were also most female patients who felt
that they had good understanding of their present illness (P=0.012)
More female than male patients thought they would like to know the
diagnosis and prognosis should they have cancer (92% VS 75%, and
86.2% VS 66.7% , P=0.05 respectively). Concerning age, patients
who are older than 60 years old knew less about their diagnosis
and treatment plans (P=0.047). Only 40% of these patients in the
cancer group knew that they had cancer, while 80% of their younger
counterparts know the diagnosis (P=0.044) They also appeared to
have less desire to know about their diagnosis and prognosis should
they have cancer. Only 71.4% of the patients older than 60 years
old would like to know the diagnosis (P=0.002) and 82.8% wanted
to know the prognosis (P=0.005). In term of education, patients
with higher education wanted to be told if they had cancer more
than patients who had less education (P=0.047)
It was especially interesting
to find many differences between the cancer and the non-cancer group
in this study. Cancer patients were less informed about their treatment
plans, more than half (51.1%) of the cancer patients knew only a
little or almost nothing about the treatment plans, while only 25.3%
of the non-cancer group had such little knowledge (P=0.02) Only
42.3% of the cancer patients felt that they had enough understanding
about their illness while 65.3% in the non-cancer group felt so
(P=0.036). This 90% of the cancer patients felt that they needed
more information about their illness whereas only 70% of the non-cancer
patients felt so. A very interesting finding was that cancer patients
had much more open attitude towards truth disclosure about cancer.
More cancer patients than the non-cancer patents wanted to be told
the diagnosis (93.3% VS 84%) and the prognosis (88.9% VS 76%, P=0.05%).
Most of the cancer patients in the study (80%) also wanted their
relatives to be told if the relatives had cancer, comparing to only
58.7% in the non-cancer group (P=0.047). Cancer patients are also
the only group in this study who tended to disagree rather much
to the idea that doctors should not tell the unpleasant truth
to patients because it would discourage the patients. More than
half (51.7%) disagreed and only 26.7% agreed with the statement
while 46.7% of the non-cancer group agreed with the idea, and 30.7%
disagreed (P=0.005).
Table1
: Questionnaire item and responses of patients
1. Do you know
what your diagnosis is ?
Non CA A. knows
about Dx in detail 51(68%)
B. knows Dx
but no detail 15(20%)
C. Can describe
only symptom 9(12%)
CA A.CA/malignancy
32(71.1%)
B. tumor 5(11.1%)
C. very little
/not understanding 6(13.3%)
D. other 2(4.5%)
2. How much
do you know about your treatment plan?
A. know in
detail 31(25.8%)
B. general
knowledge without detail 47(39.2%)
C. a little
25(20.8%)
D. very little
or not at all 17(42.2%)
3. How much
did your doctor tell you about your illness?
A9(7.5%) B56(46.7%)
C36(30%) D19(15.8%)
A. very good
B. just enough
C. not enough
D. not at all
4. How good
do you understand about your illness?
A29(24.2%)
B39(32.5%) C42(35%) D10(8.3%)
A. very good
B. just enough
C. just a little
D. very little
5. Do you
feel that you need more information about your illness?
A94(79%) B25(21%)
A. yes
B. no
6. if you
had cancer, would you like to be told?
A 105(88.2%)
B 7(5.9%) C 7(5.9%)
A. yes
B. no
C. Unsure
7. if you
had terminal cancer would you like to know the prognosis
A 97(81.5%)
B 14(11.2%) C 8(0.7%)
A. yes
B. No
C. unsure
8. If your
relative had cancer, would you like him (her) to be told?
A 80(67.0%)
B 32(26.9%) C 7(5.9%)
A. yes
B. no
C. unsure
9. Do your
agree that doctors should not tell the unpleasant truth to patients
be cause it will
discourage
the patients?
A 43(35.8%)
B 44(36.7%) C 33(37.5%)
A. agree
B. disagree
C. no option
10.If you
could choose, would you still like to be told that you had cancer?(only
patients who knew
that they had
cancer)
A 26(81.2%)
B 2(6.3%) C 4(12.5%)
A. yes
B. no
C. no answer
The
Karnofsky Performance status scale also an interesting factor found
to have influence on the patients attitudes towards the information
they received. Patients who have high Karnofsky scale scores, 74.5%
thought that the doctors gave enough detailed information of their
illness and treatment plan while only 47.2% of the patients who
have lower Karnofsky scaly scores (50-60) thought so (P=0.0002).
Only 50% of the patients who have lower score felt that they had
enough understanding about their illness while 78.4% of the patients
who have higher scores felt so. Patients who have higher score also
tended to disagree to the idea that doctor should not tell the unpleasant
truth to patients because it would discourage of patients, i.e.,
50.5% disagreed and 33.3% agreed with the statement, while only
36.3% of patients who have lower score disagreed with the idea and
30.5% agreed (P=0.014).
DISCUSSION
The patients' data show that
the patient knowledge of their illness and treatment plan are not
satisfactory, and there is a large group of patients (45.8%) who
felt that their doctors had not given them enough information. This
calls for a serious attention and an effort from the physician side
to improve physician-patient communication
Most Thai patient would like
to know their diagnosis should they suffer from cancer (88.2%) but
became more reluctant in disclosing such diagnosis to their similarly
afflicted relatives (67.2%). However, although Thai patients seems
to have quite an good attitude towards truth disclosure in general,
they still showed some degree of ambivalence towards truth disclosure,
since as much as 35.8% did agree with the policy of withholding
the unpleasant truth from the patient, and about the same number
(36.7%) disagreed with the policy.
The data above show the complexity
of communication between doctors and patients, which involve not
only the transmission of information but also the patient's reaction
to an adverse event and his pattern of adaptive behavior when coping
with a threat. In categorizing pattern of coping behavior, Meller
et al divides patients into those who demand more information about
their diagnosis (monitors) and those who cognitively distract from
threatening information (blunter)2,5. Paradoxically,
patients who complain about lack of information may be the best
informed
Factors found to have influences
on Thai patients' knowledge of their illness and attitude towards
truth disclosure were gender, age, education, and the diagnosis
of cancer. In summary, female patients, person who younger than
60 years old, and patients with better education tended to have
better knowledge and more open attitude. The data on cancer patients
are very interesting since it shows that physicians tended to give
them less information about their illness most and also the group
of patients who had the most open attitude towards truth disclosure
in almost all aspects.
The functional status of patients
represented by Karnofsky scale also influences on patients attitude
towards medical care. Patients who have high functional status (high
Karnofsky score) thought that they received enough information of
their illness and treatment plan and felt that they understood about
their illness, while patients who have lower functional status,
on contrary, thought that the doctors did not give enough information,
thus they had less understanding about their illness. However, although
patients with lower functional status seems to desire more information
towards their illness and treatment plan they still showed some
degree of ambivalence towards truth disclosure since 30.5% did agree
with the policy of withholding the unpleasant truth from patient,
compared to the patients with high functional status, 33.3% thought
so, and about half of patients with high functional status disagreed
(50.5%) while lesser number of patients with lower functional status
disagreed (36.3%).
The major problems that face
the doctors in breaking bad news, the anxieties and fears that the
doctors have, make it difficult for them to start the conversation,
and those factors that drive them into taking responsibility for
the disease itself, making it even more difficult, are the notions
have been stated6. It is useful to know that
helping patients become well informed does not create depression
but actually assists many patients in sustaining hopeful attitudes.
Benefits associated with becoming knowledgeable and actively participating
in ones care substantially outweigh the theoretical disadvantage
of receiving potentially frightening information. However, that
not all patients wish to assume roles in the medical process. In
clinical practice, patients' preferences may be readily discerned
by physicians who are guided by the patients verbal and behavioral
cues7.
REFERENCES
- Jones S. Telling the right
patient. Br Med J 1981; 283: 291-2.
- Sell BD, Bourke SJ, Munro
NC, Corris PA. Gibson GJ. Communicating the diagnosis of lung
cancer. Respiratory Medicine 1993; 87: 61-63.
- Cleora SR, Charles EC.,
Douglas SR, Walter FB, Michael G. Influence of physician communication
on newly diagnosed CA breast patients psychologic adjustment
and decision-making. Cancer 1994; 74(Suppl): 336-41.
- Mor V, Laliberte L, Morris
I, Wiemann M. The Karnofsky Perfomance Status Scale. An examination
of its reliability and validity in a research setting. Cancer
1984; 53: 2202-7.
- Armstrong D. What do patients
want? Br Med J 1991; 303: 261-2.
- Buckman R. Breaking bad
news : Why is it still so difficult ? 1984;288:1597-1599
- Barrie RC, Robert VZ, Katherine
SS, Vicki M. Information and participation preferences among cancer
patients. Ann Int Med 1980; 92: 832-6.
|