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

Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths.

PURPOSETo assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death. METHODSThis nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.ResultsA majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1). CONCLUSIONOur study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss