Truth-telling to Cancer Patients from Relatives Point of View: A Multi-centre Study in Iran.

Transcription

1 Truth-telling to Cancer Patients from Relatives Point of View: A Multi-centre Study in Iran. 1 J. Shahidi, 2 A. Taghizadeh-Kermani, 1 S.H. Yahyazadeh, 1 R. Khodabakhshi, 3 S.H. Mortazavi. 1 Department of Radiation Oncology, Fayazbakhsh hospital, Tehran, Iran. 2 Department of Radiation Oncology, Qaem hospital, Mashad, Iran. 3 Department of Radiation Oncology, Madaen hospital, Tehran, Iran. ABSTRACT Background: Disclosure of cancer diagnosis and prognosis has been a matter for debate in oncology. Despite changes in truth-telling attitude among physicians worldwide, there is clear disparity from one country to another. Methods: From January 2007 to March 2007, 155 people who accompanied cancer patients to three radiation oncology departments in Iran completed a questionnaire which contained several questions about truth-telling to cancer patients. The questionnaire also contained demographic information of patients and those accompanying them. The correlations between different groups of participants and their opinion about cancer disclosure were assessed using chi-square test. The reliability of the related questions was evaluated by Cronbach s alpha coefficient. Results: The majority of accompanying people (APs) preferred non-disclosure of information to cancer patients. While there was no correlation with sex and/or education, there was a significant correlation with age (p=0.003). Paradoxically, most participants (70.3%) wanted a full disclosure by physicians if they were diagnosed with a serious incurable disease. Conclusion: There is a dramatic disparity between what patients want to know and what their families let them know about their disease. It should be considered as a major issue for both health professionals and patients relatives in order to improve the disclosure attitude in developing countries. Key words: Truth-telling, cancer, oncology, cancer disclosure. Corresponding author: Javad Shahidi jshahidi@yahoo.com INTRODUCTION A few decades ago, physicians did not inform most patients with cancer of their diagnoses. Nowadays, despite the growing trend towards full disclosure of diagnosis and prognosis to cancer patients worldwide, it has remained as a matter for debate in oncology. 1 While in countries like the USA there is a common attitude among oncologists for truth-telling to patients, 2 many physicians in other parts of the world still prefer to withhold information from cancer patients. 3-5 However, recent studies show that even in countries where there is no legal obligation on oncologists to fully disclose the diagnosis, truth-telling is increasing gradually. 6,7 Honest communication between patients and their physicians becomes more difficult in terminally-ill cancer patients especially when it comes to the doctor s opinion on patient s survival expectation. 8 In many cultures, there is a very common belief that giving information to patients about their diagnosis and prognosis will worsen the patient s psychological condition. 6,9 In contrast, it is obvious that not informing cancer patients is a great handicap for effective treatment planning as the patients expectations from treatment options are not realistic. In addition, globalisation of information through the media and internet makes withholding the information from patients very difficult. 1,6 As a rationale for not informing patients, doctors report reasons such as the families wishes for non disclosure. 7 In their daily practice, oncologists in many countries frequently 213

2 J. Shahidi encounter not to tell patient requests from patients relatives. 6 There are several reports from various countries indicating that physicians have a tendency to disclose the truth to patients relatives and not to the patients themselves. The families therefore often make decisions on the patients behalf Montazeri et al carried out a descriptive study about cancer patient education in Iran in This study also included questions about disclosure of diagnosis and suggested that cancer patient education in Iran is very poor. 13 The primary aim of this study is to evaluate how cancer patients relatives think about truth-telling to patients and to assess what factors may influence their opinions. METHODS Study Sample From January 2007 to March 2007 a questionnaire was given to people accompanying cancer patients to outpatient clinics of radiation oncology departments at three hospitals in Iran. These hospitals include Fayazbakhsh hospital, which is located at western part of Tehran and belongs to Social Security Organization of Iran, Madaen hospital, at the central part of Tehran that is a private hospital, and Qaem hospital in Mashad the largest city in the eastern part of Iran. Those who were less than 15 years of age and those who did not consent to participate were excluded. Questionnaires were completed by participants themselves or were read aloud by an interviewer based on APs preference. Questionnaire The questionnaire used to obtain data from APs had 6 consecutive sections. The first two parts of the questionnaire contained patient and APs demographic information. Demographic characteristics of the patients were extracted from their hospital documents. Section three started with four questions asking participants what they thought about disclosure of diagnosis, prognosis, incurability, and the terminal nature of the disease to cancer patients. For each question, APs had three choices: completely agree, completely disagree, and to some extent or in some cases agree. The third section ended with two other questions: (1) who is the most suitable person to give information to patients? (2) Do you think that full disclosure of truth will have negative impact on cancer patient s life? Questions of part four were designed to evaluate how much participants know about their patients disease, how much participants estimate their patients knowledge of diagnosis, and what were their main sources of knowledge. Part five of the questionnaire contained one single question: Would you want to be fully informed by your physician if you had a serious incurable disease? In section six, enough space was provided for participants to explain their opinions if they want to do so. Before commencing the study a panel of health professionals and language experts assessed the questionnaire and checked its content and the way questions were worded. Internal consistency of the first four questions of section 3 was assessed using Cronbach s alpha coefficient. Chi-square test was used to assess the statistical significance of differences between different groups. RESULTS The questionnaire was given to 155 APs (81 at Fayazbakhsh hospital, 45 at Qaem hospital, and 29 at Madaen hospital) with a median age of 35 years. The majority of participants were men (101 APs, 65.2%), firstdegree relatives (94 APs, 61.8%), and living with the patients at the same place (102 APs, 66.7%). Almost all accompanying people (150 APs, 98.7%) were patients relatives (spouses, first and second-degree relatives). A large proportion of APs (64 APs, 41.8%) were in low-educated group (did not completed high school). Participants from Qaem hospital were found to have a significantly lower level of education (p<0.001) and Madaen hospital had higher number of university graduates (p<0.001). Table 1 shows the detailed characteristics of participating APs. Nineteen participants (12.3%) asked the interviewer to read the questions aloud and the remainder (136 APs, 87.7%) completed the questionnaire on their own. The median time to complete the questionnaire was 15 minutes. Patients demographic information is presented in Table 2. There were 89 female (57.4%) and 66 (42.6%) male patients. The median age for patients was 55 years (range: 9-83). A large proportion of patients had a terminal (with survival estimate of less than 12 months) and/or metastatic disease (72 patients, 46.5%) and patients from Qaem hospital had significantly a higher tendency to be in this group (p=0.006). In all four questions of section 3 which asked about disclosure of diagnosis, prognosis, incurability, and terminal nature of the disease the answer of completely disagree was more frequently chosen than to some extent or in some cases agree and the latter was more frequently chosen than completely agree. However, when it came to disclosure of incurability and terminal nature of the disease the gap between the numbers of APs believing in full disagreement and those believing in full agreement dramatically increased. Table 3 shows numbers and percentages of participants answering each of the available 214

3 Truth-telling to Cancer Patients from Relatives Point of View: A Multi-centre Study in Iran. Table1: Characteristics of participants. Age (n=155) Mean SD Median Range Sex (n=155) Number Percent Male Female Highest level of education (n=153) University graduate High school graduate primary school or uneducated Relation to patients (n=152) Spouses First-degree relatives* Second-degree relatives** Friends Living with patients (n=153) Yes No * Children, parents, siblings. ** Other relatives, relatives of spouses. Table2: Characteristics of patients. (n=155) Age Mean SD Median Range Sex (n=155) Number Percent Male Female Primary cancer Gastrointestinal cancers Breast cancer Gynaecologic cancers Central Nervous System malignancies Other malignancies Stage of disease Terminal* or metastatic Non-terminal * With survival estimate of less than 12 months. 215

4 J. Shahidi Table 3: Opinions of participants about disclosure of diagnosis, prognosis, incurability, and terminal nature of the disease to cancer patients. (n=155) Fully agree Relatively agree Fully disagree Number Percent Number Percent Number Percent Disclosure of diagnosis Disclosure of prognosis Disclosure of incurability Disclosure of terminal nature options for these four questions. The most common pattern of responses evidenced a complete disagreement with any disclosure (41 APs, 26.5%). Only 5 participants (3.2%) fully agreed with all four questions. The numbers of respondents who answered that they completely agree was significantly higher for those participants who were younger than 20 years of age or older than 60 years of age (p=0.003). Participants sex, education, living with patient, and referred hospital were not significantly correlated with the number of fully agree or fully disagree answers. The internal consistency of the disclosure questions was good (Cronbach s alpha = 0.78). Eighty-four APs (54.2%) declared that the physician is the most suitable person to give any kind of information to patients while 46 people (29.7%) said that information should be given to patients by their relatives. Twenty five participants (16.1%) believed that nothing should be told to cancer patients at all. The majority of participants believed that disclosure of diagnosis to cancer patients would worsen their disease (133 APs, 85.8%). Many APs declared that their knowledge of their patient s disease was greater than the patient s knowledge (103 APs, 66.5%) while only 11 (7.1%) said that their patient knew more, and 41 (26.5%) guessed that their knowledge was almost equal to that of patients. Eighty-two participants (52.9%) said that their patients do not know that they had cancer and 73 (47.1%) said that their patients knew of their diagnosis. Patients between the ages of 20 and 60 were more aware of their diagnosis (p=0.038). Although patients with advanced disease tended to have lower rates of diagnosis knowledge, it was not statistically significant (p=0.055). Physicians were the main source of knowledge in both APs and patients (90.3% and 47.7% respectively). Among patients who knew they had cancer, 28 patients (38.4%) found out their diagnosis from relatives, other patients, or nurses not physicians. In section five, 109 APs (70.3%) wanted a full disclosure if they were diagnosed with a serious incurable disease. Answers to this question was independent to age, sex, and level of education, but significantly correlated with the number of completely agree answers at section three (p=0.014). A quarter of participants did not complete section six, while the remainder had their options explained. Hopelessness and psychological impairment were the two most frequent reasons mentioned for non-disclosure of diagnosis and prognosis to cancer patients. DISCUSSION The diagnosis of cancer is frightening for many people and there is no doubt that it can affect not only the patient but also his/her family members. Perhaps, this is the most common justification for physicians to withhold information from patients in many cultures. Like the majority of other studies from non-western countries, our study showed that a large proportion of Iranian caregivers are against disclosure of information to their cancer patients. 6,10,11,14 Paradoxically, more than 70 percent of our participants expect a full disclosure if they are diagnosed with cancer. This disparity between what the general population would like to be told if they develop cancer and what physicians and relatives actually tell them is a very considerable flaw which has been reported in other studies. 12 Withholding information from patients has been identified as causally related to another major problem. While on the one hand the patients have been told that their disease is simple and not serious, they are required to undergo intensive long-term treatments, such as daily radiotherapy or cyclic chemotherapy which certainly raise doubts for patient about their diagnosis as it has been told to them. As our study shows, it may lead to understanding the diagnosis from 216

5 Truth-telling to Cancer Patients from Relatives Point of View: A Multi-centre Study in Iran. somewhere else or remaining in a very stressful doubt. On the other hand, in circumstances in which patients believe that their disease is not serious, they may not pay enough attention to the treatment especially when they think that the treatment offered does not fit the diagnosis at all. The study shows that about half of the patients (46.5%) who came to outpatient clinics of these three oncology departments were suffering from a terminal or metastatic cancer and most of them were not aware of their diagnosis. It is not only an alarming sign for the Iranian national health system in relation to the early detection programs, education of the general population and the shifting to more effective treatments to control cancer in its early stage but also, a confirmation of the fact that oncologists in Iran should be more prepared to communicate with advanced cancer patients. Although many health professionals declare patients cultural differences, patients possible psychological impairments, and families request of do not tell to justify their non-disclosure attitude, it seems that the Iranian health system itself is not ready for such an attitude either. There is no formal education for medical students at any level to learn breaking bad news. In addition, there is no medical guideline or legal regulation for physicians about how, when, how much, and to whom they should disclose cancer diagnosis and prognosis. In many oncology centres, it is hard to find a silent private room to speak to patients or relatives. Finally, the majority of our oncologists are very busy treating and caring for many patients each day and have little time for effective communication with their patients. In conclusion, a multi-dimensional issue like truth-telling should be addressed from different aspects in Iranian culture. It includes various activities from appropriate educational programs to designing guidelines. Future studies are required in this field to assess psychological, social, and cultural aspects of truth-telling. AUTHORS CONTRIBUTION JSH designed the study, interviewed participants at Fayazbakhsh hospital and Madaen hospital, analyzed the data, and wrote the paper. ATK interviewed participants at Qaem hospital. All authors contributed to designing the questionnaire and read the final paper. ACKNOWLEDGEMENT Authors are grateful to patients, their relatives and staffs of Fayazbakhsh hospital, Madaen hospital, and Qaem hospital without whom we could not have carried out the study. REFERENCES 1- Surbone A. Telling the truth to patients with cancer: what is the truth? Lancet Oncol. 2006; 7: Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians attitudes toward telling the cancer patient. JAMA 1979; 241: Sullivan RJ, Menapace LW, White RM. Truth-telling and patient diagnoses. J Med Ethics 2001; 27: Sasaki H, Nagai Y, Okamoto T. Present state of cancer disclosure in a special hospital for cancer. Jpn J Cancer Clin 1999;45: Jiang Y, Li JY, Liu C, Huang MJ, Zhou L, Li M, Zhao X, Wei YQ. Different attitudes of oncology clinicians toward truth telling of different stages of cancer. Support Care Cancer Nov;14(11): Oksuzoglu B, Abali H, Bakar M, Yildirim N, Zengin N. Disclosure of cancer diagnosis to patients and their relatives in Turkey: views of accompanying persons and influential factors in reaching those views. Tumori Jan-Feb;92(1): Miyata H, Takahashi M, Saito T, Tachimori H, Kai I. Disclosure preferences regarding cancer diagnosis and prognosis: to tell or not to tell? J Med Ethics Aug;31(8): Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med Jun 19;134(12): Montazeri A, Hole DJ, Milroy R, McEwen J, Gillis CR. Does knowledge of cancer diagnosis affect quality of life? A methodological challenge. BMC Cancer May 19;4: Mystakidou K, Tsilika E, Parpa E, Katsouda E, Vlahos L. Patterns and barriers in information disclosure between health care professionals and relatives with cancer patients in Greek society. Eur J Cancer Care (Engl) May;14(2): Younge D, Moreau P, Ezzat A, Gray A. Communicating with cancer patients in Saudi Arabia. Ann N Y Acad Sci Feb 20;809: Gongal R, Vaidya P, Jha R, Rajbhandary O, Watson M. Informing patients about cancer in Nepal: what do people prefer? Palliat Med Jun;20(4): Ali Montazeri, Mariam Vahdani, Mehregan Haji-Mahmoodi, Soghra Jarvandi, Mandana Ebrahimi. Cancer patient education in Iran: a descriptive study. Support Care Cancer Mar;10(2): Uchitomi Y, Yamawaki S. Truth-telling practice in cancer care in Japan. Ann N Y Acad Sci Feb 20;809: