Knowledge and preference of advance directives and end-of-life care
Our study found that the knowledge of AD in brain tumour patient was lower than that of a German study, considering Germany is a developed country wherein ADs have been legal for a few years[5-6]. By contrast, our patients with brain tumours originated from Anhui Province, China, a region with an underdeveloped economy and ADs are far from common in China. Thus, the knowledge of ADs is rather low. However, we found that after introducing the concept of ADs to the patients, more than half of the patients with brain tumours preferred to make ADs, this result is inconsistent with a previous study showing that 22.4% of patients with cancer approved of ADs . This discrepancy may be attributed to the fact that in the previous study, the participants originated from different regions of China with different cultures and had different types of cancer. Considering brain tumour patients would compromise medical-decision making capacity due to cognitive impairment, behavioral changes, and poor communication, the knowledge of ADs is important to patients with brain tumours. Therefore we should promote the acceptance of ADs amongst patients with brain tumours and encourage the subsequent formation of related policies and regulations related to ADs in mainland China.
The preference of end-of-life care was roughly similar to the results of a survey of 1067 adults in Hong Kong regarding their preferences for end-of-life care which the largest number of participants thought that medical staff should speak to patients directly about their situation and end-of-life arrangements as good practice, and most of the participants would prefer to receive appropriate palliative care that may not prolong their life . Conversations about end-of-life arrangements with patients with brain tumours is important, and effective conversation helps ensure that the patients have accurate opinions about end-of-life arrangements, such as treatment plan or prognosis . Medical staff should intensify propagandising end-of-life care to allow patients with brain tumours to make appropriate decisions.
Predictors of preferring to make advance directives
Inconsistent with a previous study that found that knowledge of ADs is the primary predictor, in this study, the strongest predictors of ADs were receiving surgery and radiotherapy . Patients with brain tumours who were receiving surgery or radiotherapy in our study would like to make ADs likely because surgical treatment or radiotherapy treatment is usually performed during the early stages of the disease, during which the patients are in a good condition, have a positive perspective of their disease and cannot fully understand their own illness. Thus, making ADs may reflect their expectations of their illnesses. A previous study suggested that ADs made by patients with tumour in the early stages cannot predict consistently what the patients want at the end of their life because they may doubt the reality of their tomour diagnosis . Another study suggested that patients who completely understand the role of radiotherapy and medicine are highly likely to utilise unaggressive treatments . There was a study about glioblastoma found the optimal time to initiate ADs is not clear, as ADs could be introduced at diagnosis, after initial surgery, during or after radiation or adjuvant chemotherapy, and/or at time of recurrence . But there was another study found that the optimal timing of introducing ADs would be after chemoradiation, they thought patients are still competent early in the disease trajectory and therefore generally able to communicate their wishes . Most patients have problems understanding treatment situations, choices, and risks or benefits soon after diagnosis, and about half are unable to participate in decisions about care in the last weeks of life [15-16]. And continuous re-evaluation of the patient’s support needs and need for information is required because patient’s needs change over time with disease progression . Thus, identifying an optimal time for patients with brain tumours to make ADs is a challenge, and AD interviews cannot be performed at a single time point. Instead, in the future, a longitudinal study should be encouraged to ensure the authenticity and consistency of ADs.
Next, we found that educational qualifications of college or more, having medical insurance for nonworking or working urban residents and self-payment of medical expenses are predictors of AD. These independent predictors were related to education and costs. Similarly, another study found that the rate at which Chinese patients with cancer will choose artificial ventilation will increase by almost 20% if the treatment is free . Another study also reported that a high proportion of Chinese patients with high educational level have heard of ADs and wanted to make Ads . In our study, patients with brain tumours who had medical insurance for nonworking or working urban residents usually live in modern cities and had jobs. These characteristics indicated that these patients had their own income and medical insurance that could cover 95% of the medical costs of treatment. Thus, these participants preferred to make ADs because their high educational level and economic independence provided them with their own decision-making power. The advancement of ADs amongst patients with brain tumours in poor economic groups and groups with low educational levels should be strengthened to ensure the popularity of ADs amongst various economic groups. We also confirmed that with the economic development of Anhui, the overall economic situation of the patient groups will improve. Thus, the application of advanced development is well guaranteed.
We also found that participants who were younger, male and without children were willing to make ADs. We found that older participants were not likely to make ADs. This result is consistent with the result of a study in Switzerland that identified the preferences and values of 50 elderly patients with cancer towards ADs; this study found that only a minority of elderly patients with cancer are prepared to put their personal wishes into writing. This discrepancy might be attributed to the following: Elderly participants are highly sensitive to the Confucian values of traditional Chinese culture. However, compared with elderly patients, young patients are less influenced by Confucian values and more likely to express their individual value. In Chinese culture, women are likely to defer to their husbands. Thus, being male was one predictor of making ADs in this study. Participants without children wanted to make ADs because they did not have immediate relatives to discuss their disease condition. Given that women and the elderly are reluctant to provide ADs because of Chinese Confucian culture, ADs must be popularised amongst women and the elderly to maintain everyone’s dignity.
Predictors of preferring receiving appropriate palliative care
Our logistic model showed that compared with participants with brain metastases, participants with brain primary tumours were more likely to prefer appropriate palliative care. This finding is one of the most important results of this study. Appropriate palliative care does not primarily aim to prolong life or cure disease but to relieve patient symptoms and to sustain or improve functioning and quality of life, and early and consistent palliative care interventions are important in ensuring quality of life [21-23]. Our patients with brain primary tumours mainly had gliomas (90.69%); the main postsurgical treatments recommended for gliomas are surgery and radiotherapy [24-25]. Patients with primary brain tumours usually have rapid progress and poor prognosis. Importantly, primary brain tumours are severe upon diagnosis, and thus patients lack a remission period wherein they can stabilise their panic. By contrast, participants with brain metastases from lung cancer (44.34%) and breast cancer (49.13%) might have already received surgery, radiotherapy, chemotherapy, targeted therapy or immunotherapy before the emergence of brain metastases. Therefore, patients with brain metastases already understand these treatment goals and potential outcomes and were not likely to prefer appropriate palliative care that could not prolong their life. And a retrospective indicated that there remains a wide degree of variation in the timing of end of life discussions and standard approach to end of life care has not yet been established. There is a need to explore the preference of end-of-life care in every stage of disease progression, thus may help patients with brain tumour establish a standard approach.
We found that patients with an educational qualification of junior middle school or below, new rural cooperative medical insurance (which can cover 50% of total medical expenses) and medical expenses paid by their children or spouse preferred receiving appropriate palliative care and this result was dissimilar to the result of a study in Taiwan. The previous study found that patients with low socioeconomic status, have metastatic malignant disease, residing in urban areas or are in hospitals with more abundant health care resources are likely to receive aggressive end-of-life care to delay death . However, one American study reported that patients living in low-income zip codes are less likely to receive aggressive end-of-life cancer treatment than patients living in other zip codes . Aggressive end-of-life care may mean that the patient will spend high amounts of money on aggressive treatments. Patients with brain tumours with financial hardship and low educational qualifications usually cannot afford such treatments by themselves. In China, expenditure for diagnosis and treatment of patients with cancer seemed catastrophic and cancer-related financial problems create barriers to seeking health care among survivors, so identifying cancer survivors who are more likely to experience financial hardship is important [29-30].
In our study, we found that participants who were older, male and had children were more likely to receive appropriate palliative care; this result might imply that Confucian values still play an important role in our traditional culture . In Chinese traditional culture, having the young die before the elderly is unacceptable, and many young patients with brain tumours and their family members would insist on receiving aggressive treatments till the last moment of life.
Promoting the model and content of end-of-life care amongst patients with brain tumours and familiarising them with the results of end-of-life care could bring to themselves are crucial. These approaches could help patients with brain tumours further understand end-of-life care and make reasonable choices. Only in this way could patients with brain tumours avoid the side effects of excessive medical treatment and prevent family members from making wrong decisions for patients with brain tumours after they lose consciousness.
The findings of our study should be considered in terms of several limitations. Firstly, this was a cross-sectional study, the patients with brain tumour only receive our face-to-face interview at a time, and our patients were in different stages of the disease trajectory, the cognitive competence of their own illness condition is varied. This may have influenced our findings related to the preference of preferring to make an ADs and preferring to receiving appropriate palliative care. May these preferences change as patients with brain tumour step in the next stage of the disease progression? To make sure that the results reflect what the patients with brain tumour really need, a longitudinal study should be performed to identify the optimal time for patients to state their true preferences. Next this was a disease-specific study, we also did not ask patients with brain tumour about clinical symptoms and signs, and these patients often suffer from pain or headache, epilepsy, venous thromboembolism, fatigue, mood and behavioural disorders. Were there some connections between symptom management and the willingness of choosing appropriate palliative care? Our questionnaire aimed at patients with brain tumour is not detailed and comprehensive enough, which is a limitation of the study. In the future, a comprehensive and disease-specific questionnaire should be designed. Additionally, the sample of our study is limited, our study was executed in two hospitals only and thus may generate sample bias. In order to reflect the knowledge and preferences of more patients with brain tumour and make our findings more convincing, more and more patients with brain tumour in different hospitals should be incorporated into study.
This study illustrated the attitudes and preferences of patients with brain tumor regarding AD and end-of-life care. Although AD and end-of-life care have not been systematically applied in Chinese patients with brain cancer and knowledge of AD is limited, most participants still prefer to demonstrate their individual value. Additional efforts should be made for patients with primary brain tumours undergoing surgery and radiotherapy and low socioeconomic status, and a longitudinal and comprehensive study is encouraged to promote a disease-specific ADs amongst Chinese patients with brain tumours.