Information from physicians and retention of information by patients – Obstacles to the awareness of patients of progressing disease when life is near the end

<p>Abstract</p> <p>Background</p> <p>Discrepancies between the information that patients have received and the patients' awareness of their condition have frequently been observed in literature and given a number of different explanations. The chief contribution of this study is that by following patients over time it is possible not only to notice any changes in the patients' knowledge or awareness of their disease, but also to investigate the interview material for possible reasons for those changes. Since the study is based on two different groups of patients it will also be possible to notice if the category of disease matters for patients' awareness of their condition.</p> <p>Methods</p> <p>Twelve patients with malign haematological diseases or lung cancer were followed with interviews from diagnosis to cure or death, or at most for two years. The method is qualitative. Semi-structured interviews were conducted, transcribed into written text, and then used for a qualitative content analysis.</p> <p>Results</p> <p>During the process of analysis four different expressions (subcategories) emerged about the awareness of patients concerning their health status: informed and aware, not informed and not aware, aware though not informed, or not aware though informed. Then the search started for obstacles to the awareness of patients regarding their progressing disease and approaching death. Four kinds of obstacles were found: due to the physician, the patient, the physician and the patient in collusion, or neither to the physician nor the patient but the insidious way in which lung cancer (mostly) and haematological malignancies (occasionally) progress.</p> <p>Conclusion</p> <p>To optimize the care of patients who wish to be informed and aware during their disease, it is important that the health care staff recognizes potential obstacles to the awareness of patients in order to minimize such obstacles. The physicians could improve their communication with patients with life-threatening diseases, and avoid having a narrow focus on the treatment calendar. The patients could be encouraged to have a more proactive attitude in their communication with their physician.</p

In the shadow of bad news – views of patients with acute leukaemia, myeloma or lung cancer about information, from diagnosis to cure or death

BACKGROUND: Many studies have been published about giving and receiving bad messages. However, only a few of them have followed the patients all the way through a disease as is done in this study. Many studies have been written about patients' coping strategies. In this study we will keep within the bounds of coping through information only. The aim of the study is to investigate patients' views of information during the trajectory of their disease, whether their reactions differ from each other and whether they differ in different phases of the disease. METHODS: Twelve patients with malignant haematological diseases or lung cancer were followed with interviews from diagnosis to recovery or into the terminal phase or at most for two years. The method is qualitative, using semi-structured interviews. Setting: Örebro University Hospital or the patient's home. RESULTS: All patients described themselves as well informed from the start but in later phases of their disease some of them came to express a great uncertainty about the progressing disease and about the approaching death. Most of them, regardless of whether they had a haematological malignancy or lung cancer, expressed a wish to be well informed all through the disease and even when the messages were bad. Different strategies for coping with information, however, affected how they then dealt with the information received. Four such coping strategies were found: 1) Information-dependent and accepting; 2) Information-dependent but denying; 3) Medically informed and accepting; 4) Medically informed but denying. CONCLUSION: To several patients there was an unmet need for information about the progressing disease and the approaching death. To optimize the care of these patients it seems important that the physician is aware of patients' need for information even when the news is bad. Knowing the patient's information strategy could probably function as a key for the physician to communicate with patients on these matters