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Promoting Hospice & Palliative Care Worldwide

International Association for Hospice & Palliative Care

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"Promoting Hospice and Palliative Care Worldwide"

 

2004; Volume 5, No 9, September

 

Article of the Month

Carla Ripamonti, MD
(Italy)

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Palliative Care in the Developing World: Principles and Practice

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“Do not tell”: what factors affect relatives’ attitudes to honest disclosure of diagnosis to cancer patients?

Author(s): Ozdogan M, Samur M, Sat Bozcuk HS, Coban E, Artac M, Savas B et al.

Abstract:  Supportive Care Cancer 2004; 12: 497-502

Tell or do not tell the truth to patients in the case of a life-threatening illness such as cancer?

This seems a question which has been widely discussed and solved from various points of view: medical, ethical, juridical. The authors of this article reported however, that in some Eastern countries, as well as in Turkey, disclosure of cancer diagnosis is not communicated directly to the patient, but to his/her relatives. Among the difficulties regarding effective communication between physicians and patients, is the obstacle posed by many of the patients’ relatives who do not agree to discloser of the truth about the diagnosis to a patient who has cancer.

Ozdogan and colleagues evaluated relatives’ attitudes in Turkey regarding informing cancer patients about their diagnosis and the possible associated factors.

Relatives of 150 patients with a recent cancer diagnosis were interviewed by means of a questionnaire. 66% of the relatives did not want the diagnosis to be disclosed (61% of them were males and 76% had a low to medium income), most of them (57.3%) feared that the patient would become depressed and 29.3% thought the patient would prefer not to know; the remaining relatives had no reasons. 51% of the relatives interviewed lived with the patient.

No association was found between the relatives’ “do not tell” attitude and their age, education, socioeconomic status and other demographic characteristics.

In the univariate analysis, the relatives’ attitude in the “do not tell” group was associated with male gender of the patient (p=0.032), a diagnosis of a non-breast cancer (p=0.000), the presence of advanced disease (p=0.051), no previous request by the patient for diagnosis communication (p =0.021), relative’s religious belief (p= 0.058) and his/her scarce knowledge regarding cancer in general (p =0.021). In a multivariate analysis, relatives of non-breast cancer patients, or relatives who had insufficient general knowledge about cancer, opposed disclosure in a significant way. The authors justify this data maintaining that woman with breast cancer would not accept to undergo mutilating surgery such as mastectomy in the absence of an illness which could be fatal.

Nonetheless, it is necessary to consider that with breast cancer - compared to gynecological, gastrointestinal cancer and that of the lungs - there are more chances of it being overcome from the oncologic point of view, as well as it having a more favorable prognosis.

Relatives frequently do not want the doctor to communicate the diagnosis to their relative/patient so as not to cause him/her emotional distress. According to the authors, to request disclosure of a diagnosis is a paternalistic sign strongly associated with religious aspects. Similar findings were observed in studies carried out in Australia, in Islamic and Eastern cultures, as well as in some Western countries.

The fact that patients never voiced a specific request regarding receiving accurate information about their diagnosis and prognosis is not a valid reason for withholding the diagnosis from them. This same excuse is used by many physicians as well. Healthy patients when queried on this issue wish to be informed about their health.

How great is the patient’s wish to be informed underestimated? To what degree is the patient uncomfortable with the persons around him? Poor communication may cause false communication among everyone: the physician, the patient and the family.

Why I chose this article

Everyone maintains that communication between the physician and patient is of utmost importance in the care relationship. The time spent with patients, a paternalistic attitude by some physicians and the degree of communication skill are all important variables to the outcome.

Nevertheless, this study reveals what I personally have observed on a daily basis: patient communication is often hindered by the patient’s relatives. Therefore, as our Turkish colleagues deduced, improved communication with patients results when there is “healthy communication with the relatives,” and there is the offer of providing psychological support for them should they so wish. The alternative to not telling risks that no one knows anything, including the patient.

Regards,

Carla Ripamonti, MD
Member of the Board of Directors, IAHPC