Advance Directives and End-of-Life  Care: Knowledge and Preferences of Patients with Brain Tumours from Anhui, China

Abstract

Background: In Mainland China, the advance directives (ADs) and end-of-life care of patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aims to clarify the knowledge and preferences of the ADs and end-of-life care of patients with brain tumours and to investigate the predictors of patients’ preferences.Methods: This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on the sociodemographic factors, brain tumour illness, knowledge and preferences of the advance decisions and end-of-life care of the patients were collected.Results: A total of 88.61% of the participants had never heard of ADs, but 65.18% would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, less than 70 years old, male, educational qualifications of college or beyond, childless, had medical insurance for nonworking or working urban residents and self-payment of medical expenses were predictors of preference for making ADs. A total of 79.43% participants would like to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care although it could not delay death. A total of 65.82% patients with brain tumours wanted resuscitation, and as high as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, ages of less than 70 years old, male, educational qualification of junior middle school or below, had children, had new rural cooperative medical insurance and had medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.ConclusionsADs and end-of-life care have been poorly acknowledged amongst patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote a disease-specific ADs amongst Chinese patients with brain tumours.

Factors related to advance care planning from the perspectives of cancer patients: a systematic review

“…Most of the articles were published to the United States included (n = 14 cases) (29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42). followed by China (n = 2 cases) (43,44), and South Korea (n = 1) (45), Canada (n = 1) (46), Israel (n = 1) (47), Germany (n = 1) (48) and Taiwan (n = 1) (49).…”

“…Knowing and familiarizing with the ACP concept is an effective factor in the willingness of patients to complete the AD form. In this regard, in the study in China, Wang, Y et al referred to knowledge and awareness about AD as the most important factor in having it from the patients' perspective (43). On the other hand, Bar-Sela.G et al (47) stated most of the cancer patients had not heard anything about AD, and as a result, they did not want to write it due to insu cient knowledge of ACP services.…”

“…Various factors predicted the completion of the AD form in the subgroup of access to the healthcare system. For example, the role of health insurance that covers the highest level of medical services was referred to in the study by Wang, Y et al (43). Also, the place to receive cancer care and treatment was expressed by Tan…”

“…Wang, Y et al, and Kubi B et al found that men were more likely to complete the AD form (35,43). In contrast, Ru-jun Zheng et al found that the AD form was completed by women more frequently than men (44); But it was mentioned in two studies that gender was not an effective factor in completing the AD form AD (45,48).…”

“…Gala True et al stated that patients who believed in the power of God and spirituality to cope with cancer were less likely to have LW (41). In a study by Yixin Wang et al in China, 2.72% of patients with brain tumors referred to religious beliefs as a barrier to completing the AD form (43). In contrast, religious beliefs were regarded as an effective factor to complete the AD form in studies by RU-Jun Zheng et al (44) and Michael G et al (29).…”