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Open Access Highly Accessed Research article

Disclosure of cancer diagnosis and quality of life in cancer patients: should it be the same everywhere?

Ali Montazeri*, Azadeh Tavoli, Mohammad Ali Mohagheghi, Rasool Roshan and Zahra Tavoli

BMC Cancer 2009, 9:39  doi:10.1186/1471-2407-9-39

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Patient is the one who should choose the amount of information he/she wants to receive

Javad Shahidi   (2011-01-06 11:17)  The Élisabeth Bruyère Research Institute email

The study by Montazeri et al. aims to explore the relationship between the disclosure of cancer diagnosis (and/or prognosis) and patient’s quality of life. Based on the study findings, authors make a conclusion that depending on the culture, in some cultures it might be better to conceal the truth from cancer patients.

There are several issues to consider before making such a conclusion. First and foremost, this study with the current design cannot answer the question of whether or not the disclosure should happen. Even if we accept that the quality of life scores of those who know they have cancer is less, it does not necessarily mean that disclosure is not appropriate. As authors mention and similar studies in the similar settings (such as: Shahidi J, Khodabakhshi R, Gohari MR, Yahyazadeh H, Shahidi N. McGill Quality of Life Questionnaire: reliability and validity of the Persian version in Iranian patients with advanced cancer. J Palliat Med. 2008 May;11(4):621-6.) show, the great majority of the cancer patients in Iran find out about their diagnosis from sources other than their physicians such as other patients at the waiting room of the cancer clinic. The problem can be the source of knowledge and the circumstance around this inappropriate way of disclosure not the knowledge itself. In addition, because the open communication between patients and their healthcare providers (and often between patients and their families) is lacking, patients will not receive any support from them in this regard making the situation different from when an appropriate support system is in place. Moreover, those who have more severe symptoms (and therefore more likely to score less on a quality of life measure like EORTC) are more likely to become aware of their true diagnosis. It can also be hypothesized that when there is no honest open communication between the patient and the care provider, self-reported questionnaires might be less reliable. Patient is encouraged by everyone around him/her to believe the disease is not serious. Any attempt by the patient to start questioning this believe is blocked by doctors and relatives. Now, the very same people are asking how he/she feels. Patient may provide the answer the healthcare provider likes to receive and hide his/her true feelings. We can even suggest that probably most patients know their diagnosis but it’s the communication that is lacking. Is it possible to conceal the diagnosis from a patient who comes to a cancer clinic every 3 weeks for 3 days to receive chemotherapy followed by 20 days of radiotherapy, is in severe pain, has severe nausea and/or diarrhea after each chemotherapy cycle, is extremely fatigued, is losing her hair, has trouble eating, and is constantly losing weight?

Considering all the complexity around this issue, it is not a surprise to see those who know their diagnosis having lower quality of life scores. In fact, the very same results can be interpreted to make the opposite conclusion: the current practice of non-disclosure (not telling the truth and/or lying about the diagnosis) is not efficient even in the concealment of diagnosis. Most patients find out about the diagnosis anyways (mainly through unreliable sources and without any support from the system). Isn’t it better to have a mechanism in place to give the patient the option to choose the amount of information he or she wants to receive? It is wrong for health professionals to completely ignore patient’s autonomy and decide on behalf of each and every individual based on premature assumptions about patient’s gender, level of education, age, cultural background, etc. Health professionals are not able to easily assess the capacities of each individual in receiving their disease information. On another note, disclosure often does not happen not because of patient’s preferences but because of health care system barriers such as doctors who are not trained to manage a breaking bad news session, have no time to do so or there is no private room to sit with the patient to discuss the diagnosis and answer patient’s possible questions, etc. (Shahidi J. Not telling the truth: circumstances leading to concealment of diagnosis and prognosis from cancer patients. Eur J Cancer Care (Engl). 2010 Sep;19(5):589-93.)

It seems that authors have previously published two other articles using the same data: 1) Tavoli A, Mohagheghi MA, Montazeri A, Roshan R, Tavoli Z, Omidvari S. Anxiety and depression in patients with gastrointestinal cancer: does knowledge of cancer diagnosis matter? BMC Gastroenterol. 2007 Jul 14;7:28. 2) Tavoli A, Montazeri A, Roshan R, Tavoli Z, Melyani M. Depression and quality of life in cancer patients with and without pain: the role of pain beliefs. BMC Cancer. 2008 Jun 21;8:177. Authors have made similar comments about cancer disclosure in those articles as well, but fail to appropriately reference them in the new one. This should be made clear that they are making this conclusion on a set of data that is already published and it is not a separate study.

Competing interests

nothing to declare.

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