Disclosure of the Cancer Diagnosis as It Relates to the Quality of Pain Management Among Patients with Cancer Pain in Taiwan

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1 Vol. 18 No. 5 November 1999 Journal of Pain and Symptom Management 331 Original Article Disclosure of the Cancer Diagnosis as It Relates to the Quality of Pain Management Among Patients with Cancer Pain in Taiwan Chia-Chin Lin, PhD, RN School of Nursing, Taipei Medical College, Taipei, Taiwan, People s Republic of China Abstract This study was designed to explore: (1) who is responsible for disclosing to Taiwanese cancer patients the diagnosis of cancer, (2) the extent of disclosure, and (3) the relationship between the disclosure of the cancer diagnosis and the quality of cancer pain management as perceived by the patients experiencing cancer pain. One hundred twelve cancer patients with pain were recruited from three teaching hospitals in Taiwan. The major findings in this study were as follows: the majority of the patients with pain (79%) had been informed that the diagnosis was cancer, and for the majority (89%) the disclosure of cancer had been made by their physicians; older patients and those with lower levels of education were less likely to be told that they had been diagnosed with cancer; and patients to whom it was disclosed that the diagnosis was cancer tended to experience lower levels of pain intensity, lower levels of pain interference, and higher levels of satisfaction with pain management provided by clinicians. These findings provide significant implications for disclosure practice for Taiwanese oncology clinicians. J Pain Symptom Manage 1999;18: U.S. Cancer Pain Relief Committee, Key Words Diagnostic disclosure, truth disclosure, cancer pain, pain management, pain level, quality improvement, patient satisfaction. Introduction Whether or not to disclose to patients the truth about a diagnosis of cancer may no longer be an issue in some western countries such as the United States; however, many clinicians in Taiwan still hesitate to inform patients of a diagnosis of cancer. A recent study conducted in Taiwan reveals that only 37.2% of cancer patients were aware of their diagnoses. 1 Address reprint requests to: Chia-Chin Lin, PhD, RN, School of Nursing, Taipei Medical College, 250 WuHsing Street, Taipei, Taiwan, People s Republic of China. Accepted for publication: February 4, However, it should be noted that the majority of patients ( 60% in that study) were newly diagnosed (within 14 days). When cancer patients begin experiencing pain, the pain may serve as a clue for patients to suspect a diagnosis of cancer. The extent to which the cancer diagnosis is disclosed to patients with pain has not been investigated. Also, the question of whether disclosure of the diagnosis will have an impact on the quality of cancer pain management remains unknown. The purpose of this study was to explore the issues of disclosure of the cancer diagnosis to patients with cancer pain and to examine the impact of such disclosure on the quality of management of cancer pain in Taiwan. U.S. Cancer Pain Relief Committee, /99/$ see front matter Published by Elsevier, New York, New York PII S (99)

2 332 Lin Vol. 18 No. 5 November 1999 Clinicians generally have given two main reasons for choosing not to disclose a cancer diagnosis to patients. 2 First, clinicians indicate that they do not know how to manage patients emotional responses and are therefore reluctant to disclose a cancer diagnosis that they feel will cause a great deal of emotional upset for patients. Second, clinicians presume that patients do not want to know if the diagnosis is cancer. In addition to these reasons, it is generally believed that physicians in Taiwan are greatly influenced by patients families and abide by their wishes if these relatives wish to conceal the cancer diagnosis. On the other hand, those advocating disclosure emphasize the need to respect patient autonomy and believe that a lack of information may possibly increase patients uncertainty, anxiety, distress, and dissatisfaction. 3 Concealing a diagnosis or prognosis from patients may make them feel abandoned and may make clinicians feel estranged from their patients. 4 Lastly, truthful cancer diagnoses and prognoses may have a significant effect on patients (especially terminally ill patients ) decision making about care options and their cooperation with their clinicians. 5 Awareness of the cancer diagnosis may help patients make appropriate care decisions concerning symptom management and consequently optimize their quality of life, especially when cancer becomes incurable. Therefore, disclosure of the cancer diagnosis may have an impact on the quality of cancer pain management. Furthermore, disclosure of the cancer diagnosis may decrease patients anxiety and distress, which in turn may alleviate the level of pain. Numerous studies have demonstrated that quality of communication makes a significant difference to patient health outcomes. Stewart 6 conducted an extensive review of these studies and concluded that most demonstrated a positive effect between quality communication and improved patient health outcomes such as emotional health, symptom resolution, function, physiological measures (i.e., blood pressure and blood sugar level), and pain control. Another study, by Egbert et al., found that in a sample of patients undergoing intraabdominal surgery, communication about postoperative pain reduced those levels of pain. 7 However, whether communication of a cancer diagnosis has a positive effect on the patient s perceived quality of cancer pain management has not been explored. There has been considerable change in cancer disclosure practices over the past three decades in many countries, including Taiwan. In the United Sates, a landmark study conducted in 1961 by Oken showed that about 90% of surgeons would not routinely discuss a diagnosis of cancer with their patients. 8 However, recent studies have shown that almost all cancer patients wanted to know their diagnosis, and most wanted to know the prognosis, treatment options, and side effects of treatment. 9 Patient autonomy has been studied widely, and the understanding of the importance of this autonomy has increased greatly. At the same time there has been a gradual increase in the practice of disclosing the cancer diagnosis. Almost 20 years after Oken s landmark study, more than 90% of physicians in the United States would prefer to disclose the cancer diagnosis to their patients. 10 A recent study showed that in Taiwan, 79% of physicians said that they would prefer to disclose to their patients a cancer diagnosis 11 (despite the fact that only 37.2% of Taiwanese cancer patients knew their diagnosis 1 ). Although it appears that clinicians attitudes toward disclosure of a cancer diagnosis and patients information needs for disclosure have changed during the past few decades, none of the studies investigated the prevalence of disclosure of cancer among patients experiencing pain. Instead, most of the studies included a wide variety of patients or focused only on newly diagnosed cancer patients. In contrast, this study focuses on Taiwanese patients with cancer pain and poses the following research questions: 1. To what extent is it disclosed that the patient s diagnosis is cancer? 2. Who discloses the diagnosis of cancer? 3. Does disclosure of the cancer diagnosis relate to the quality of cancer pain management as perceived by patients? Methods Subjects and Settings This study was conducted in the inpatient oncology units of three teaching hospitals in the Taipei area of Taiwan from August 1996 to July One of the teaching hospitals was a

3 Vol. 18 No. 5 November 1999 Diagnosis Disclosure and Pain Management 333 medical center and the other two were regional hospitals, but all provided a full range of inpatient and outpatient services. The sample consisted of patients who were (1) over 18 years of age, (2) diagnosed with cancer, and (3) experiencing pain in the last 24 hours that their clinicians indicated was due to cancer or cancer treatment. Of a total of 150 patients who met the selection criteria, 112 accepted and provided complete information at a 75% response rate. Thirty-eight percent (n 42) of the sample were male and 62% (n 70) were female, and ages ranged from 19 to 79 years with a mean (SD) of (11.51) years. Of these subjects, 40% (n 45) were retired and 74% (n 82) were married. Sixty percent of the subjects had less than a high school education, 29% had a high school education or the equivalent, and 11% had some college education. Other patient characteristics including sites of cancer are summarized in Table 1. Instruments The questionnaire consisted of the American Pain Society Quality Assurance Questionnaire, the short form of the Brief Pain Inventory, a disease information sheet, and a demographic sheet. The American Pain Society Quality Assurance Questionnaire. The quality of pain management was assessed by using the American Pain Soci- Table 1 Patient Characteristics N % Marital status Married Divorced 4 4 Widowed Single 8 6 Religion Buddhism Taoism Christianity Other 4 3 No religion Sites of cancer Breast Lung Oral Nasal pharyngeal 9 8 Rectal 9 8 Cervical 8 7 Gastric 8 7 Lymphoma 7 6 Others ety Quality Assurance Questionnaire, which was adopted from Ward and Gordon s study. 12 This questionnaire was translated into Chinese using a translation and back-translation method to ensure that the wording was accurate. The questionnaire is based on the American Pain Society Standards 13 and includes an assessment of patient satisfaction with pain management by physicians and nurses. Patient satisfaction levels were rated on a scale of 1 through 6, with 1 indicating not satisfied and 6 indicating very satisfied. Brief Pain Inventory, Short Form (BPI). The BPI is a self-reporting instrument used to assess the multidimensional nature of pain, including intensity of pain and the interference of pain with life activities in the preceding 24 hours. It has been used worldwide to measure pain and has been adopted by the World Health Organization to evaluate the effectiveness of its Cancer Pain Relief Program. For this study, the Chinese version of the BPI was used. The first part of the BPI consists of four single-item measures of pain intensity: worst pain, least pain, average pain, and pain now. Each item is rated on a scale of 0 (no pain) to 10 (the worst pain I can imagine). The second part consists of seven items that assess the extent to which pain interferes with general activity, mood, walking, working, relations with others, sleeping, and enjoyment of life. Each item is rated on a scale of 0 through 10 (0 indicates no interference and 10 indicates complete interference). An interference score, the average of the seven items, was computed. The BPI has been shown to be a reliable and valid measure of pain. 14 The Chinese version has been demonstrated to have good internal consistency, test-retest reliability, and construct validity in a Chinese population. 15 Demographics. A one-page demographic sheet was used to assess basic patient information such as age, gender, education, and income. Disease and Medication. A one-page form was developed to obtain information on each patient s disease, treatment, and medication. Patient awareness of the diagnosis of cancer and the category of the person responsible for disclosing the diagnosis were assessed at the end of the data collection. Patients were asked the

4 334 Lin Vol. 18 No. 5 November 1999 following questions: What brings you to be hospitalized? Do you know what disease you have? Who informed you of this disease? Procedure Approval was received from the hospitals before the study was conducted. Because the Ethics Committee does not exist in those hospitals where the data were collected, only approval from the administration department of the hospital can be obtained. After discussion with clinicians responsible for the patient care, a research assistant individually approached patients who met study criteria. The research assistant described the study and obtained oral consent. Protection of patient confidentiality (assuring patients that their care providers would not know any individual s answers) was especially emphasized. Patients were asked to complete the questionnaire on their own. However, those patients who were unable to complete the questionnaire on their own had items read to them by the research assistant, who then recorded the answers on the questionnaire. At the end of the interview, an assessment was made of the patient s awareness of a cancer diagnosis and who informed the patient of this diagnosis. Information regarding patient diagnosis, treatment, and medications was obtained from patient charts. Results Disclosure of the Cancer Diagnosis When patients were asked if they were aware of their diagnoses, 79% (n 89) of patients answered that they knew they had cancer or malignant tumors. Of the remaining patients, 21% (n 23) answered they had benign tumors, were waiting for test results, or did not have any idea. Among those patients who were aware of their cancer diagnoses, the majority of patients (89%, n 99) were informed by their physicians, 6% (n 7) were informed by their family members, and 5% (n 6) were informed by nurses or friends. To examine the relationship between demographic variables and patients awareness of cancer diagnoses, 2 or t-tests were used. Patients who had been informed that they had a cancer diagnosis were likely to be younger than patients who were not; the means (SD) were (10.64) and (11.15), respectively [t(111) 4.19, P 0.001]. Also, patients who had their cancer diagnoses disclosed to them had higher levels of education than patients who did not; the means (SD) were 8.26 (4.43) and 4.43 (3.50), respectively [t(111) 4.29, P 0.001]. Gender, religious affiliations, number of family members, marital status, and family income were not related to disclosure of the cancer diagnosis. Quality of Pain Management The quality of pain management was determined by patient self-reports of pain severity, the extent to which pain interfered with daily life, and satisfaction with pain management provided by nurses and physicians. Indicators of quality of pain management are presented in Table 2. Patient satisfaction with pain management provided by nurses and physicians was evaluated. With a range of 1 (not satisfied at all) to 6 (very satisfied), the means (SD) sat- Table 2 Indicators of Quality of Pain Management for All Patients (N 112), and for Patients Who Were Aware of Cancer Diagnosis (n 89) and Unaware of Cancer Diagnosis (n 23) All Patients (N 112) Aware of diagnosis (n 89) Unaware of diagnosis (n 23) t Worst pain 5.72 (3.22) 5.53 (2.30) 7.57 (2.77) 1.98* Least pain 1.32 (1.70) 1.37 (1.78) 1.10 (1.34) 0.67 Average pain 3.24 (2.40) 3.18 (2.47) 3.50 (2.09) 0.63 Now 1.62 (2.28) 2.74 (2.38) 1.09 (1.90) 1.43 Interference 3.13 (3.09) 2.78 (2.93) 4.57 (3.41) 2.44* Satisfaction with nurses 5.42 (0.64) 5.48 (0.59) 5.14 (0.79) 2.23* Satisfaction with physicians 5.41 (0.67) 5.49 (0.59) 5.10 (0.89) 2.50* 1. Range for pain severity and pain interference is 0 (no pain/no interference) to 10 (worst pain can be imagined/ complete interference). 2. Range for satisfaction is 1 (not satisfied) to 6 (very satisfied). *p 0.05

5 Vol. 18 No. 5 November 1999 Diagnosis Disclosure and Pain Management 335 isfaction with nurses and physicians were 5.42 (0.64) and 5.41 (0.67), respectively. Pearson correlation was used to examine relationships between demographic variables (age and education) and indicators of quality of pain management. Only educational levels were negatively correlated with interference scores (r 0.27, P 0.05). t-tests revealed that gender was not related to any indicators of the quality of pain management. Relationship Between Disclosure and Quality of Pain Management t-tests were employed to explore the relationship between the awareness of cancer diagnosis and the quality of cancer pain management. The results are displayed in Table 2. Patients who were aware of a cancer diagnosis experienced lower levels of worst pain, had lower levels of pain interference with daily life, and were more satisfied with cancer pain management provided by nurses and physicians. Predictors of Disclosure of the Cancer Diagnosis Finally, logistic regression was used to examine the extent to which demographics and pain duration predict disclosure of the cancer diagnosis (Table 3). In the regression model, disclosure of the cancer diagnosis served as the dependent variable and age, gender, level of education, marital status, and pain duration served as independent variables. The analysis revealed that 83.3% of patients were correctly categorized as having received disclosure versus lacking disclosure. The significant predictors in this regression model included level of education and pain duration (P 0.05). Discussion Seventy-nine percent of this sample of cancer patients with pain were told their diagnoses. The majority of these patients (89%) were informed of their diagnosis by their physicians; older or less-educated patients were less likely to have their diagnoses disclosed to them. Patients who were told their diagnoses tended to experience lower levels of pain intensity, lower levels of pain interference, and higher levels of satisfaction with pain management provided by clinicians. Level of education and pain duration significantly predicted disclosure of the cancer diagnosis. The rate of disclosure of the cancer diagnosis varies across studies and countries. In other countries, such as Spain, Greece, Italy, Japan, the United Kingdom, and Australia, the disclosure rate for a cancer diagnosis varies from 15% to 74% In the current study, 79% of the cancer patients with pain were informed of their diagnoses. Apparently, this rate is lower than that in the United States, but it is higher than the rate in other countries, such as those just mentioned, and higher than the rate revealed in a recent study conducted in Taiwan by Ger et al. 1 Only 37.2% of patients in the study by Ger et al. were aware of their diagnosis of cancer. However, it should be noted that the majority of the patients in that study were newly diagnosed with cancer within 14 days. The sample characteristics in that study may be quite different from the sample characteristics in this current study, in which all patients were experiencing cancer pain. When patients start suffering from pain, they may begin to suspect the malignant nature of their disease and may want to initiate communication about their di- Table 3 Logistic Regression Analysis of Factors Predictive of Disclosure of the Cancer Diagnosis Variables B SE 95% CI P Model P Age ( ) 0.07 P Level of education ( ) 0.04 Gender Male ( ) 0.43 Female ( ) 0.43 Marital status Married ( ) 0.82 Single ( ) 0.92 Divorced ( ) 0.93 Widowed ( ) 0.84 Pain duration ( ) 0.04

6 336 Lin Vol. 18 No. 5 November 1999 agnosis with their clinicians. As a result, the disclosure rate may be higher among patients with pain than among patients without pain. Twenty-one percent of patients were not aware of their diagnosis. In Taiwan, it should be noted, it is common for clinicians to base the decision of whether to disclose the diagnosis on the wishes of the patients relatives. A Taiwanese study showed that about 60% of family members of cancer patients would prefer not to disclose the diagnosis of cancer to patients. 23 Family members who want the cancer diagnosis concealed from their relatives most often cite their fear that the cancer diagnosis will upset patients, and also that they will be unable to manage patients strong emotional responses. Therefore, in order to improve the disclosure practice in Taiwan, it may be crucial to communicate the importance of disclosure of cancer diagnoses with family members of cancer patients. In this study, patients who were not aware of their diagnoses and were suffering from a substantial amount of pain tended to be older and to have lower levels of education. This finding is consistent with many other studies. 1,10,24 Cancer patients who are older, who have lower levels of education, or whose socioeconomic status is lower, are at a higher risk of experiencing inadequate communication about their diagnoses with their clinicians and family members. Therefore, patients demographic characteristics, especially age and education, have important effects on the decisions of clinicians and family members about disclosure of cancer diagnoses. Patients who were informed of their cancer diagnoses were experiencing lower levels of worst pain, lower levels of pain interference with daily life, and higher levels of satisfaction with pain management provided by physicians and nurses. The mechanisms underlying these relationships need further empirical investigation. However, the positive relationship between disclosure and patient satisfaction with pain management may be due to a decrease in patient levels of anxiety and distress, and, consequently, a decrease in the perception of pain. 3 Furthermore, when patients are aware of their cancer diagnosis, they and their family members may tend to make better decisions about care and thereby improve their quality of life. In terminally ill patients, concealing information regarding diagnosis and prognosis may serve the interests of oncologists and pharmaceutical companies more than the patient in terms of the patients time, money and quality of life. 22 When patients are told the truth about terminal cancers, they can make choices about care that are consistent with their wishes. Clinicians are also obligated to initiate communication with patients, answering questions, disclosing the truth about diagnosis and prognosis, and informing patients about all treatment options, including palliative care. 5 Therefore, withholding information regarding diagnosis and prognosis will not only affect the quality of care (i.e., pain management) but will also harm the patient-clinician relationship. Providing true information to patients about cancer diagnosis and prognosis, while at the same time providing good-quality pain management and care, and preserving patients hope, is an obligation for clinicians. It requires all their skills of competence, compassion, and honesty. Acknowledgments The author would like to express her greatest gratitude to Denise Dipert for her assistance in editing this manuscript, and to Sandra Ward, Ph.D., RN, for her comments on the manuscript. References 1. Ger LP, Ho ST, Chiang HH, Chen WW. Cancer patients knowledge of their diagnoses. J Formos Med Assoc 1996;95: Buckman R. Talking to patients about cancer: no excuse now for not doing it. BMJ 1996;313: Audit Commission. What seems to be the matter? Communication between hospitals and patients. London: HMSO (NHS report No. 12), Annas GJ. Informed consent, cancer, and truth in prognosis. N Engl J Med 1994;330: Smith TJ. Telling the truth about terminal cancer. JAMA 1998;279: Stewart MA. Effective physician-patient communication and health outcomes: a review. Can Med Assoc J 1995;152: Egbert LD, Battit GE, Welch CE, Bartlett MK. Reduction of postoperative pain by encouragement

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