This study examined the differences in sociodemographic characteristics, the quality of dying, and factors related to the quality of dying between patients with malignant brain tumors and those with other malignant diseases. The major findings were: 1) patients with malignant brain tumors were younger, the last stays in PCUs were longer, and primary caregivers were more often parents; and 2) regarding quality of dying, the total GDI score and 4 items from the GDI scale, namely, “Being able to stay in one’s favorite place”, “Trusting physician”, “Being independent in daily activities”, and “Feeling that one’s life is worth living,” were significantly lower in the malignant brain tumor group than in the other cancer group. To the best of our knowledge, this is the first large-sample study that focused on the quality of dying of primary malignant brain tumor patients and compared them with patients with other cancers.
First, in the present study, patients in the brain tumor group were younger and had a longer PCU stay during their EOL period than the other cancer group. The results of this study may reflect the characteristics of patients with primary malignant brain tumors. Malignant brain tumors generally affect younger patients and have a lower 5-year survival rate . Regarding the longer stay in PCUs, the poor activities of daily living of the patients and the difficulty choosing home care due to the caregiver burden on the family may have affected the PCU length of stay. Several studies have reported that the decreased functional independence of malignant brain tumor patients leads to their hospitalization more often than other patients with cancer [19–21]. In addition, a higher percentage of patients’ parents and spouses were their primary caregivers. This might be due to the younger age of patients in the brain tumor group. Spouses and parents of patients have been reported to suffer more in their grieving process over bereavement than other relatives (e.g. child of deceased, siblings) . Moreover, some studies have reported that the deceased patient’s poor quality of dying and higher care burden may lead to pathological grief in their caregivers [9, 23–26]. Future research should clarify the impact of the relationship between the brain tumor patient and the primary caregiver on grief and depression of the bereaved.
Second, there were significantly lower scores overall and for a few items of the GDI in patients with primary malignant brain tumors. These results are consistent with previous findings that the QOL of patients with primary malignant brain tumors tends to be lower than in other cancer patients [1, 4, 13, 15], which may lead to a lower evaluation of the quality of dying. Most patients with primary malignant brain tumors have a decreased level of consciousness more than one month before death and a loss of independence . These characteristics may have been reflected in the present results, with the lower scores for “Being independent in daily activities” and “Feeling that one’s life is worth living”. These two items are items that are also related to personal dignity. Chochinov et al. stated that personal dignity may be influenced by factors including the patient’s independence, concerns regarding symptom distress, autonomy, spiritual well-being, and ability to communicate effectively with others. [27–30]. Personal dignity is considered to be important for improving quality of dying; therefore, we believe that care that values personal dignity is necessary to improve the quality of dying of brain tumor patients. Sizoo et al. suggested the importance of satisfaction with the physician providing EOL care and communication ability during EOL care for a dignified death in high-grade glioma patients . In the present results, the score for “trusting physician” was lower in the malignant brain tumor group, which suggests that there may be room for improvement.
In addition, the present results suggest that patients with primary malignant brain tumors tend to have difficulties regarding staying or dying in their preferred place. This might reflect the difficulty in EOL discussions in primary malignant brain tumor patients, which previous studies have pointed out [15, 32]. However, the target of the present study was patients who died in PCUs. In most facilities in Japan, one of the criteria for admission to a PCU is that the patient and his/her family have been informed of the disease and the severity of the condition, and that the patient desires and agrees to be admitted to the ward where basically no aggressive cancer treatments are provided . Therefore, the difficulty of primary malignant brain tumor patients of dying in their preferred place may be underestimated, and in other general settings, more patients might not achieve death in their preferred place. Studies have reported that EOL decision-making is often a challenge for primary malignant brain tumor patients [10, 15, 32]. This is due to the typical symptoms of malignant brain tumor that affect communication from an early stage of the disease. Therefore, early EOL discussion and decision-making are needed. However, studies have shown that primary physicians tend to avoid disclosing the exact diagnosis, especially their severe prognosis to patients with malignant brain tumor ; in addition, they frequently did not discuss EOL preferences with their patients . Previous studies of cancer patients have shown that patients who engage in EOL discussions tend to receive care consistent with their wishes, and that the quality of EOL care and the QOL of patients and caregivers are improved [35–37]. Healthcare providers need to consider timely interventions such as providing appropriate information to patients and their families so that they can have adequate discussions and make decisions regarding their EOL care preferences.
Several limitations of this study warrant consideration. First, this study involved patients with primary malignant brain tumors who died in a hospice/palliative care ward. Patients admitted to a hospice/palliative care ward were likely to have been able to discuss their EOL wishes, including expressing their intention to enter the ward. This may have positively affected the quality of care received by the patients and their assessment of achieving a desired death. Second, background factors of patients with brain tumors, such as the grade of the brain tumor, the time when the level of consciousness decreased, and the time when the physical function (performance status) decreased were not examined. Third, bereaved families who were in a significantly worse physical or mental condition may not have participated in the study. Fourth, because this was a cross-sectional study based on a survey at a single point in time, causal inferences between variables cannot be made. Fifth, recall bias may have occurred in the evaluation of patients, such as the quality of care and achievement of desired death, because the bereaved family members evaluated them in retrospect as proxies. However, the bereaved family survey is a valid method for evaluating end-of-life care because terminally patients with cancer are too ill to participate in the surveys. The sixth issue is the representativeness of the subjects in this study. Among the member facilities of the Japan Hospice and Palliative Care Association, it can be assumed that those facilities that are particularly active in evaluating care and providing feedback on the results participated in this study. This may have affected their involvement with patients and bereaved families before and after bereavement, and their outcomes.