Skip Navigation

This Article
Right arrow Abstract Freely available
Right arrow FREE Full Text (PDF) Freely available
Right arrow Alert me when this article is cited
Right arrow Alert me if a correction is posted
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in ISI Web of Science
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My Personal Archive
Right arrow Download to citation manager
Right arrow Search for citing articles in:
ISI Web of Science (3)
Right arrow Request Permissions
Google Scholar
Right arrow Articles by Seo, Y.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Seo, Y.
Social Bookmarking
Add to CiteULike   Add to Connotea   Add to Del.icio.us  
What's this?

Japanese Journal of Clinical Oncology Pages 80-83

A Preliminary Study on the Emotional Distress of Patients with Terminal-Stage Cancer: a Questionnaire Survey of 1380 Bereaved Families over a 12-Year Period
Introduction
Patients And Methods
Results
   Awareness of cancer
   How did the patients recognize their disease ?
   Did the patients wish to be informed?
   Emotional distress of terminal-stage patients
   Emotional distress after being informed
Discussion
Acknowledgement
References

A Preliminary Study on the Emotional Distress of Patients with Terminal-Stage Cancer: a Questionnaire Survey of 1380 Bereaved Families over a 12-Year Period

A Preliminary Study on the Emotional Distress of Patients with Terminal-Stage Cancer: a Questionnaire Survey of 1380 Bereaved Families over a 12-Year Period Yousuke Seo

Department of Gastroenterological Surgery, National Kyushu Cancer Center, Fukuoka, Japan

To clarify the emotional distress of terminal cancer patients, questionnaires were sent to 2826 families of patients who died at the National Kyushu Cancer Center; 1380 replies were obtained. Among the 1380 patients, 37.7% had been aware of the disease name and 19.8% had been unaware. Of the 1380 patients, 43.5% had prepared for and calmly accepted death, but 12.4% had greatly feared and 11.7% rejected death. Patients aware of the disease name had tended to prepare better for death but also had a stronger fear compared with those who were unaware. Patients informed of the exact nature of their disease by their physicians tended to value their remaining life more than those informed by others. Those who had desired notification of the disease name also tended to value their remaining life more than those who had not. They also spent their remaining life more usefully, and were less discouraged after being informed than those who had not expressed a wish to be informed. Thus: 1. The emotional state of the cancer patient should be clearly established before deciding to inform the patient of the true diagnosis. 2. The patient should be notified of the disease by the doctor, even if he/she is already aware of the diagnosis through others. 3. The ability to share bad news with the patient is of crucial importance for physicians when caring for terminal- stage cancer patients.

Key Words: cancer patient - emotional distress - terminal stage

INTRODUCTION

Since 1981, when cancer first became the most common cause of death in Japan, the number of cancer deaths has increased annually, reaching more than 230 000 in 1992 (1). It is estimated that the number of such deaths will surpass 260 000 in 1996.

Not only health professionals engaged in cancer treatment but also the general population are strongly interested in issues such as whether or not to inform cancer patients of the disease and prognosis, the choice of cancer treatments, the need for informed consent and the quality of life of cancer patients.

Although in the United States the issue of whether or not to disclose the diagnosis to the patient is already a settled issue (2), it remains controversial in Japan. Many doctors still tend to hesitate, for either moral or ethical reasons, to ask cancer patients who have not been informed of their diagnosis, or who may still have no idea that they suffer from cancer, to ask about their attitude toward being informed of the true diagnosis and giving informed consent.

Consequently, it is often difficult to determine the emotional status of cancer patients. Accordingly, a questionnaire survey was conducted for bereaved family members who had cared for such terminal-stage cancer patients. The purpose of this survey was to clarify the emotional distress of these terminal cancer patients and thus help to clarify the issue of terminal care. However, it should be noted that there are some limitations to such a survey. Firstly, this survey was conducted by doctors, which may have caused some bias in the responses from family members. Secondly, the results may not have exactly reflected the patients' attitudes, because the survey was conducted through family members and not through the patients themselves.

PATIENTS AND METHODS

We distributed a questionnaire to bereaved families who had lost a member to cancer in our hospital during the 12-year period between 1981 and 1992. The survey was done once a year for patients who had died in the previous year. The bereaved families had cared for the terminal-stage patients until death. The age of the respondents was not included in the questionnaire, but the male to female ratio was approximately 1:2 (55% of the females were wives and 21% were daughters of the deceased; 51% of the males were husbands and 23% were sons). The questionnaire asked about: 1, the awareness of the true diagnosis; 2, the emotional distress at the terminal stage; 3, the response to the treatment at the terminal stage; 4, the emotional distress of the family members. In 1985, the questionnaire was expanded to include: 1, the source of disclosure of the diagnosis; and 2, the wish to be informed. In 1988, questions regarding emotional distress (after being informed) were also added to the questionnaire. The sites most frequently affected by cancer were the digestive system including the esophagus, stomach, colon, liver and pancreas, followed by the lung, breast and uterus. Childhood cancer cases were excluded from the survey.


Figure 1. Emotional distress of terminal-stage patients; n = 1380

The patients ranged in age from their 20s to their 80s, and most were in their 60s.

We mailed the questionnaire to 2826 families, and 1380 families responded (48.8%). However, not all items were answered by the repondents, and some double selections were also made on some questionnaire items (which thus resulted in a sum of total percentage exceeding 100%). The emotional distress of family members was excluded from the analysis. All data were analyzed by [chi]2 test with a significance level of P < 0.05.

RESULTS

Awareness of cancer

Of the 1380 cancers patients whose families responded during the 12-year period, 73.9% had been either aware of or suspected their diagnosis. The patients who died during the last five years of the survey also had a higher recognition rate than those who died during the first five years. However, the difference was not statistically significant. The patients who were <= 64 years of age had a higher recognition rate than those >= 65 years of age.

How did the patients recognize their disease ?

Among the 845 patients whose familes responded to the questionnaire regarding awareness of the diagnosis, 25.7% were told the true diagnosis by their doctors, whereas 13.7% of them happened to recognize that they suffered from cancer either based on their medical documents or by knowing that anticancer drugs had been administered. Only 7.7% were told the true diagnosis by a family member. The proportion of the patients who were told the true diagnosis by their doctors during the last five years was significantly higher than that during the first five years (57.8% vs 46.2%).


Figure 2. Difference in emotional distress according to awareness of the disease. Hatched bar, aware, n = 344; dotted bar, suspected, n = 354; solid bar, unaware, n = 147; *P < 0.001; [dagger]P < 0.05

Did the patients wish to be informed?

Of the 845 patients, 21.3% wished to be informed, 19.2% did not wish to be informed, and 56.3% were not sure whether they wished to be informed or not. More patients <= 64 years wished to be informed than patients >= 65 years.

The proportion of female patients who wished to be informed (25.6%) was slightly greater than that of male patients (19.9%), but the difference was not significant.

Emotional distress of terminal-stage patients

Among the 1380 patients, 43.5% had prepared for death or thought about death calmly, whereas 12.4% had greatly feared death and 11.7% had rejected death. The proportion of patients who had considered, or tried to commit, suicide was 4.4% (Fig. 1). According to their recognition of the disease, 54.4% of the full recognition group (344 patients) had prepared for death and thought about death calmly, whereas 38.4% and 44.2% of the suspected group (354 patients) and unaware group (147 patients), respectively, had also prepared calmly for death. The proportion of patients who had greatly feared death was highest in the recognition group (Fig. 2).

Emotional distress after being informed

Of the 285 patients who were informed, 24.6% responded by spending the rest of their life usefully, 28.4% were only temporarily discouraged but soon recovered, and 5.2% went into depression, which lasted for the remainder of their life.

We compared the subgroup of 142 patients who had been informed of their true diagnosis by their doctors and the subgroup of 143 patients who had not been informed by their doctors in the recognition group.

Fig. 3 shows the difference in emotional distress according to the source of disclosure of the diagnosis. A significantly higher percentage of those who had been informed by their doctors spent their remaining life usefully, and were only temporarily discouraged after being informed, compared with the other group (41.5% vs 7.7%, 40.1% vs 10.8% respectively). However, a higher percentage of patients who had been informed by their doctors remained depressed throughout the remainder of their life (7.7% vs 2.8%). Emotional distress at the terminal stage (according to the wish to be informed) was evaluated. The subgroup of patients who had wished to be informed (113 patients) showed a higher rate of positive response by spending the remainder of their life usefully and rejecting death than those who had not expressed a wish to be informed (372 patients, 61.1% vs 38.2%, 11.5% vs 9.1% respectively).


Figure 3. Difference in emotional distress according to the source of disclosure of the diagnosis. Wavy bar, informed by doctor, n = 142; hatched bar, informed by person(s) other than the doctor, n = 143; *P < 0.001

In contrast, there was a higher proportion of patients who showed a great fear of death among those who had not expressed a wish to be informed than among those who had expressed such a wish (12.4% vs 9.7%) but the difference was not significant (Fig. 4).


Figure 4. Emotional distress of patients at the terminal stage according to their wish to be informed. Dotted bar, patients who wished to be informed, n = 113; solid bar, patients who did not wish to be informed, n = 372; *P < 0.001.

Finally, emotional distress after being informed (according to the wish to be informed) was evaluated. The patients who had wished to be informed demonstrated a higher proportion of individuals who had `spent their remaining life usefully' and `were only temporarily discouraged' than the counterpart group (32.7% vs 5.9%, 23.9% vs 7.8% respectively). Fig. 5 shows the emotional distress of patients after being informed according to their wish to be informed. They also showed a lower propartion of individuals who had `remained depressed until death' (0.9% vs 3.2%).


Figure 5. Emotional distress of patients after being informed according to their wish to be informed. Diagonal bars, patients who wished to be informed, n = 113; solid bar, patients who did not wish to be informed, n = 372; *P < 0.001.

DISCUSSION

According to the report by Novak et al. in 1979 (2), over 95% of all cancer patients in the United States were told their diagnosis. Holland stated that the current issue in America was not whether to tell, but how to tell (3). However, disclosure of the true diagnosis to cancer patients is not a routine matter in many other countries, including Japan (4). Our present survey showed that approximately 74% of patients were either aware of or suspected their disease, and that 26% of them were told the diagnosis by their doctors. These rates were based on patients hospitalized at a cancer hospital. Thus, awareness would not be so high for patients hospitalized at a general hospital. A 1992 report on a socioeconomic survey of vital statistics demonstrated that 60.7% of 1918 patients at a general hospital in Japan were either aware of, or suspected, their disease (5). Centeno-Cortes et al. reported that 68% of their patients in Spain had not been informed, while 60% of them highly suspected the true diagnosis (4). He emphasized the importance of cultural background with regard to differences in the incidence of awareness. Our survey showed that the proportion of patients who prepared for death and thought about death calmly was higher in the aware group than in the unaware group. At the same time, the aware group revealed a stronger fear of death than the unaware group.

Furthermore, those who were told the true diagnosis by someone other than their doctor tended to show greater emotional distress after being informed, compared with those who were told the diagnosis by their doctor. Okazaki et al. studied the effects of informing terminal-stage patients of their true diagnosis on the mental status of the patients (6). The percentage of patients who exibited psychoneurotic symptoms was lower in the aware group than in the unaware group. Nevertheless, 22% of the aware patients demonstrated psychoneurotic symptoms. These findings thus indicate the difficulties involved with the care of aware patients. Although supportive care has been essential for terminal cancer patients, those who need care the most seem to be the aware group. Recently the trend in Japan has been toward disclosure of the true diagnosis. The Ministry of Health and Welfare and the Japan Medical Association now advocate telling the true diagnosis to cancer patients by stressing several merits of giving the true information (7). However, in our survey, those who were told the true diagnosis in spite of an unwillingness to be informed spent the remainder of their life rather unproductively, compared with those who wished to be told.

Therefore, the question of whether or not to inform patients of their true diagnosis still remains an important issue in Japan today.

Cancer patients basically have the right to be informed. Consequently, no obstacle exists to telling the true diagnosis when patients express a desire to be informed clearly, although the question of how best to tell them remains.

The most important problem is how to manage patients whose attitude is obscure, since it could also be said that they have the right not to be informed as well as the right to be informed.

However, those who refuse to be informed must realize the responsibility caused by such refusal. Thus the important question appears to be: What is the ultimate objective of telling the truth to patients who may not wish to be informed?

Is it advantageous for them, or does the information give them peace of mind (8)? Can a physician judge whether disclosure is advisable for individual patients? Can discretion be left to the physician? All these questions have to be answered.

In the meantime, we have to learn how best to inform cancer patients of the true diagnosis. Clarifying differences in emotional distress according to how patients are told is beyond the scope of our present survey. Full information should be given to the patients by the physician to maintain a trusting mutual relationship, and in order not to discourage the patient. The sharing of bad news is both an art and a science (9).

Problems such as the care given to patients after they have been informed, securing the services of terminal care specialists and medical staff, and development of more comfortable wards for terminal cancer patients are all important challenges that still need to be addressed.

ACKNOWLEDGEMENT

The author is grateful to Mr. Brian Quinn for his critical review of the manuscript.

References

1. Kosei Tokei Kyokai. Trends of domestic hygienics. 1994;41: 396 ( in Japanese ).

2. Novak D, Plumer R, Smith RL et al. Change in physicians' attitudes toward telling cancer patient. JAMA 1979;241:897-900.

3. Holland JC. Now we tell-but how well?. J Clin Oncol. 1989;7:557-9. MEDLINE Abstract

4. Canteno-Cortes C, Nunez-Orarie JM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluationg patients' responses. Palliative Medicine 1994;8:39-44.

5. Statistics and Information department, Minister's Secretariat, Ministry of Health and Welfare. Report on the socioeconomic survey of vital statistics: The medical treatment for the terminally ill patients FY 1994 ( in Japanese )

6. Okazaki N, Yoshimori M, Ohta H. Mental influence of telling true diagnosis to terminal cancer patients. Gan no Rinsho 1989;35:331-4 (in Japanese). MEDLINE Abstract

7. Ministry of Health and Welfare, and Japan Medical Association: Reports on evaluation of terminal care. How to care for terminal patients. Japan, Chuo Hoki 1991;5-8 (in Japanese).

8. Lantos JD, Singer PA, Walker RM et al. The illusion of futility in clinical practice. Am J Med 1989;87:81-4. MEDLINE Abstract

9. Creagan ET. How to break bad news-and not devastate the patient. Mayo Clin Proc 1994;69:1015-7. MEDLINE Abstract

Received June 24, 1996; accepted October 15, 1996
For reprints and all correspondence: Yousuke Seo, Department of Gastroenterological Surgery, National Kyushu Cancer Center, Notame 3-1-1, Minami-ku, Fukuoka 815, Japan

This page is run by Oxford University Press, Great Clarendon Street, Oxford OX2 6DP, as part of the OUP Journals
Comments and feedback: www-admin{at}oup.co.uk
Last modification: 19 May 1998
Copyright© Japanese Journal of Clinical Oncology, 1997.
Add to CiteULike CiteULike   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us    What's this?


This article has been cited by other articles:


Home page
 Palliat MedHome page
M. Seo, K. Tamura, H. Shijo, E. Morioka, C. Ikegame, and K. Hirasako
Telling the diagnosis to cancer patients in Japan: attitude and perception of patients, physicians and nurses
Palliative Medicine, March 1, 2000; 14(2): 105 - 110.
[Abstract] [PDF]

This Article
Right arrow Abstract Freely available
Right arrow FREE Full Text (PDF) Freely available
Right arrow Alert me when this article is cited
Right arrow Alert me if a correction is posted
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in ISI Web of Science
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My Personal Archive
Right arrow Download to citation manager
Right arrow Search for citing articles in:
ISI Web of Science (3)
Right arrow Request Permissions
Google Scholar
Right arrow Articles by Seo, Y.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Seo, Y.
Social Bookmarking
Add to CiteULike   Add to Connotea   Add to Del.icio.us  
What's this?