Advance directives and end-of-life care: knowledge and preferences of patients with brain Tumours from Anhui, China

Abstract

Background In Mainland China, advance directives (ADs) and end-of-life care for 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 aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences. Methods This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected. Results A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many 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, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care. Conclusions ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.

Perspective on advanced directives among older adults in Shanghai: A qualitative study

“…In addition, The study indicated that relatively few aged citizens completed the forms due to lacing Internet technology abilities as the ‘Five Wishes’ forms were online and digital [ 24 ]. Furthermore, Chinese scholars conducted cross-sectional studies on the recognition, acceptance, knowledge, attitude and practice (KAP) of ADs using self-designed questionnaires among terminally ill patients, older adults and health professionals [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ]. Overall, the recognition, acceptance, knowledge and KAP of ADs among the population improved over time [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ].…”

“…Furthermore, Chinese scholars conducted cross-sectional studies on the recognition, acceptance, knowledge, attitude and practice (KAP) of ADs using self-designed questionnaires among terminally ill patients, older adults and health professionals [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ]. Overall, the recognition, acceptance, knowledge and KAP of ADs among the population improved over time [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ]. And health care professionals had a higher recognition and acceptance of ADs, better KAP of ADs compared with the other groups at the same time period [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ].…”

“…Overall, the recognition, acceptance, knowledge and KAP of ADs among the population improved over time [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ]. And health care professionals had a higher recognition and acceptance of ADs, better KAP of ADs compared with the other groups at the same time period [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] ]. Furthermore, the localization and legislation process of ADs in the mainland of China has been difficult, complicated and tortuous.…”

The Role of Information and Nudges on Advance Directives and End-of-Life Planning: Evidence From a Randomized Trial

“…In particular, nudges from sending letters, texts, and messages through patient portals are frequently used and have been effective in increasing cervical cancer screening (Tseng et al, 2001), medication adherence (Schwebel & Larimer, 2018), appointment attendance (Horvath et al, 2011; Schwebel & Larimer, 2018), and most recently, vaccine uptake (Dai et al, 2021; Patel et al, 2023). Previous studies on patient-side interventions in ACP have involved improving patients’ knowledge of ADs in China (Wang et al, 2021), using an online tool to guide patients through ACP during the coronavirus pandemic (Auriemma et al, 2020), and educating patients in a small inpatient setting to improve AD completion (Harlow, 2017). We add to the growing behavioral health economics literature on nudges, letters, and reminders, showing in a randomized control trial that interventions with nudges and various communications, especially when tied to physician appointments, are effective in increasing the take-up of beneficial but also potentially frustrating responsibilities such as completing ADs.…”

Preferences and Attitudes Towards Life-Sustaining Treatments of Older Chinese Patients and Their Family Caregivers

“…6,47,48 Chinese patients prefer to be informed and engage in shared discussions with important ones and only a small number wanted to be in control of important medical decisions. [49][50][51] Chinese patients' preferences regarding the level of involvement in medical decision-making practices may vary at different stages. Our findings suggest that most family caregivers prefer to start discussing life-sustaining treatments only when the patient is seriously ill, because they do not want the patient to lose hope too early, in which case patients' opportunities to participate in the decision-making process may be reduced by the late initiation.…”