Abstract
Background
Against the global ageing backdrop, the demand for palliative care among terminally ill elderly patients is rising, but their participation in related decision-making remains generally low. Identifying influencing factors is urgent to improve resource utilization efficiency and care quality.
Methods
A convenience sampling method was used to select 426 elderly patients in the terminal stage of life as study subjects. Surveys were conducted using a general information questionnaire, the palliative care Decision-Making Participation Scale, the Palliative Care Attitude Scale, the Three-Dimensional Meaning in Life Scale, and the Perceived Social Support Scale.Quantitative data that were non‑normally distributed are presented as median (interquartile range); categorical data are described using frequencies and percentages. Between‑group comparisons were performed using nonparametric tests. Spearman correlation analysis was applied to examine correlations, and multiple linear regression analysis was conducted to identify influencing factors.
Results
The total score for palliative care decision-making participation among terminally ill elderly patients was 73.00 (64.00, 81.00), while the total score for attitudes towards palliative care was 35.00 (31.75, 39.00). The three-dimensional sense of life meaning score was 49.00 (47.00, 57.00), and perceived social support score was 60.00 (58.00, 64.25). All data are expressed as median (interquartile range). Multivariate linear regression analysis revealed that age, educational attainment, decision-making preference, awareness of advance directives, attitudes towards palliative care, and three-dimensional sense of life meaning were significant factors influencing decision-making participation in palliative care among elderly patients at the end of life (all P < 0.05).
Conclusions
Elderly terminal patients’ palliative care decision-making participation remains moderate and urgently needs improvement. The state should strengthen the palliative care system and promote advance directive legislation. Clinically, a tiered collaborative intervention model is needed to convert intentions into actions via multidimensional support, thereby enhancing their decision-making participation, safeguarding end-of-life autonomy and dignity.
Keywords: Elderly patients, End-of-life, Palliative care, Decision-making participation, Influencing factors
Introduction
With the acceleration of population ageing and the increasing incidence of terminal illnesses, the elderly population is projected to increase from 250 million to 400 million by 2050, with the ageing rate exceeding 30% [1]. According to a World Health Organization report, 25.7 million individuals globally require palliative care during their final year of life, with the elderly individuals accounting for more than 69% of this population [2], highlighting the growing need for palliative care among elderly patients in the terminal stage. Palliative care focuses on early identification, accurate assessment, and pain management, providing comprehensive physical, psychological, and spiritual support to terminally ill patients and their families to alleviate suffering and enhance quality of life [3]. In recent years, China has steadily advanced the development of its palliative care system, achieving phased results. The National Health Commission has successively introduced multiple policies to advance the development of palliative care service systems. These measures include gradually expanding pilot programs, strengthening professional training, and establishing specialised palliative care departments or wards in selected hospitals and communities [4]. Concurrently, many regions nationwide have established a three-tiered collaborative network that links hospitals, communities, and families. This network features multidisciplinary teams, 24-hour home symptom management services, and “Internet+” remote guidance [5]. The implementation of these resources provides a solid foundation for patients to independently choose care plans and express their end-of-life wishes. However, the effective utilization of these resources hinges on patients’ active participation in decision-making. Only when patients are genuinely involved in decisions related to palliative care can existing medical resources be precisely matched to their core needs, thereby avoiding resource wastage or a disconnect between services and patient wishes.
Palliative care decision-making, as a critical component in the implementation of palliative care services, directly determines whether patients receive care aligned with their wishes. From treatment plan selection to end-of-life arrangements, patient involvement not only is central to respecting patients’ autonomy but also reduces decision conflicts, lessens the burden of caregiving on families, and ultimately improves patients’ psychological state and quality of life during the terminal phase [6, 7]. However, in current clinical practice, there is a concerning lack of participation in palliative care decision-making among elderly patients at the end of life. China’s palliative care system remains in its developmental stage. Within the country’s family-centred traditional culture, discussions about death are often considered taboo. Family members frequently conceal or downplay the severity of the illness to avoid “destroying hope” [8, 9]. Research has indicated that owing to insufficient disease awareness, a lack of communication mechanisms, and intergenerational decision-making habits within families, most elderly patients in the terminal stage often find themselves in a “passive acceptance” state, making it difficult for their true wishes to be effectively incorporated into the decision-making process [10]. Studies have shown that some patients avoid participation because of cognitive biases that associate “palliative care” with “giving up on treatment”, whereas some healthcare providers, who fear negative patient reactions, prefer to communicate decisions with family members, further undermining elderly end-stage patients’ right to participate in making their end-of-life care decisions [11, 12]. Older adults with terminal illness often assume a passive role in palliative care decision-making due to physiological decline, cognitive impairment, traditional cultural taboos surrounding death, and family-dominated decision-making patterns. Their attitudes, values, social support, and perception of meaning in life significantly influence their willingness and actual engagement in decision-making. This low level of involvement not only risks misaligning care plans with patient needs but also may lead to psychological regret among elderly end-stage patients later on [13] and even exacerbate care conflicts among families [14]. Therefore, exploring the current status and influencing factors of palliative care decision-making participation among elderly patients with terminal illness is of great practical significance for promoting patients’ autonomous decision-making and enhancing their dignity in end-of-life care.
Identifying the factors influencing end-of-life care decision-making participation among elderly patients in the terminal stage is essential for improving the current situation. Existing research has primarily focused primarily on qualitative studies [15, 16], and lacks an analysis of multidimensional influencing factors. Additionally, some studies employ assessment tools that lack specificity for the “elderly terminal patient” population, making accurate quantification of their level of decision-making participation difficult [17]. In this cross-sectional study, convenience sampling was adopted to recruit elderly patients in the terminal stage as participants. Their current level of participation in palliative care decision-making was investigated, and the effects of general demographic information, palliative care attitudes, three-dimensional sense of meaning in life, and perceived social support on their participation were analysed. The aims of this study were was examine the current level of participation in palliative care decision-making among elderly patients in the terminal stage, explore its influencing factors, and provide references for developing targeted clinical intervention plans. Ultimately, this research aims to shift palliative care decision-making from a “passive acceptance” to an “active participation” model for elderly patients with terminal illnesses, thereby enhancing the quality of end-of-life care services and upholding the dignity of patients’ lives.
Methods
Design
This study employed a cross-sectional design. Data were reported using the STROBE (Standards for Reporting Observational Studies in Epidemiology) checklist for cross-sectional studies.
Participants
April–August 2025: Convenience sampling was adopted to recruit elderly patients with terminal-stage diseases from four tertiary general hospitals and specialised cancer hospitals in Urumqi. The inclusion criteria were as follows: ① terminal-stage disease; ② inability to undergo curative surgery due to disease progression, primarily receiving palliative radiotherapy/chemotherapy or supportive care; ③ age ≥ 60 years; and ④ adequate reading, comprehension, and communication ability. The exclusion criteria were as follows: ① diagnosis of psychiatric disorders; and ② inability to complete questionnaires because of emotional, cognitive, or physical limitations. In this study, terminal illness was defined on the basis of the 8th edition of the Cancer Staging System [18], domestic and international palliative care admission criteria [19], and the definition of terminal illness proposed by Xiao Yao et al. [20], with specific criteria as follows: ① Terminal-stage malignancy: Histologically or cytologically diagnosed clinical stage III or IV malignant tumour. ② Terminal-stage heart disease: New York Heart Association functional class III or IV. ③ Terminal-stage kidney disease: Chronic kidney disease Stage 5 chronic kidney disease or chronic renal failure with uraemia. ④ End-stage liver disease: Decompensated cirrhosis or ascites stage. ⑤ End-stage lung disease: Modified British Medical Research Council (MRC) score ≥ Grade 3. Sample size was determined based on the principle for sample size estimation in multivariate analysis. A sample size of 5–10 times the number of variables was required [21]. This study included 26 variables. Considering a 20% attrition rate, a minimum sample size of 163–325 cases was needed.
Data collection
This study employed paper-based questionnaires for onsite surveys. Prior to commencement, consent was obtained from the targeted institutions, with the survey objectives and requirements explained to ensure their understanding and support. Before data collection, informed consent was obtained from each participant. Concurrently, all the investigators underwent centralised training to ensure the consistent use of standardised guidance language. This ensured that they could thoroughly explain the study’s purpose and questionnaire completion requirements to eligible elderly patients in the terminal stage. During the survey, participants received detailed explanations of the study’s objectives, procedures, and significance, with emphasis placed on confidentiality principles. After informed consent was obtained from all the participants, the questionnaires were distributed for independent completion. For participants with language communication, trained nursing staff from the departments involved provided translation support. For those unable to complete the questionnaire, researchers collected data through one-on-one interviews. Researchers verified completed questionnaires on-site, requesting participants to correct errors or supplement missing information. After data collection, all the questionnaires were rechecked, and invalid questionnaires with contradictory information were excluded.
Measures
General information questionnaire
A self-designed general information questionnaire was used to collect data on 12 items from participants: sex, age, educational attainment, marital status, place of residence, living arrangements, monthly income (including pensions, child support, etc.), primary caregiver, healthcare decision-making preferences, awareness of advance directives, level of understanding regarding palliative care, and primary sources of information about palliative care.
Palliative care decision-making participation scale
This scale was developed by our research team in 2025 [22] as a measurement tool primarily designed to assess end-of-life care decision-making participation among elderly patients. It comprises 29 items across five dimensions: behavioural attitudes, subjective norms, perceived behavioural control, behavioural intention, and behaviour. A 5-point Likert scale is employed, with each item scored from 1 to 5, ranging from “Strongly Disagree” to “Strongly Agree.” A higher total score indicates greater participation in palliative care decision-making. Twenty-two experts selected for the second round of consultation evaluated the content validity of the scale. The experts rated the relevance of each item to the research content, yielding an item-level content validity (I-CVI) ranging from 0.950 to 1.000 and a scale-level content validity (S-CVI) of 0.992. Reliability and validity testing involved 178 elderly patients with terminal illnesses, while confirmatory factor analysis included 325 participants. The scale achieved a Cronbach’s α coefficient of 0.948, with individual dimension coefficients ranging from 0.804 to 0.903. The KMO value was 0.915, and Bartlett’s sphericity test yielded a value of 7462.967 (P < 0.001). Exploratory factor analysis (EFA) revealed five common factors, explaining 82.107% of the cumulative variance; confirmatory factor analysis (CFA) yielded χ²/df = 1.261, CFI = 0.981, TLI = 0.979, IFI = 0.981, and RMSEA = 0.028.
Palliative care attitudes scale (PCAS-9)
This scale was developed by Perry et al. [23] in 2020 to measure cancer patients’ attitudes towards palliative care. This study adopted the Chinese version adapted by Liu Kaili et al. [24] in 2022, comprising 9 items across 3 dimensions: emotional, cognitive, and behavioural. The affective dimension is reverse scored using a 6-point scale ranging from “No pressure at all” (1) to “Extreme pressure to the point of collapse” (6). The cognitive and behavioural dimensions contain no reverse-scored items and employ a 7-point scale ranging from “Definitely not” (1) to “Definitely would” (7). Summing the scores for each item yields the scores for each dimension and the total score. Higher scores indicate a more positive attitude towards palliative care. The Cronbach’s alpha coefficient for the total scale is 0.863, indicating good overall reliability. In this study, the Cronbach’s alpha coefficient for the questionnaire was 0.844.
Three dimensional meaning in life scale (3DM)
This scale was developed by Martela et al. [25] to measure individuals’ overall perceptions of life meaning. This study adopted the Chinese adaptation by Miao Miao et al. [26] from 2024, comprising 11 items across three dimensions: purpose, significance, and comprehensibility (coherence). It employs a 7-point Likert scale, where 1 indicates “strongly disagree” and 7 indicates “strongly agree.” Higher scores indicate a greater sense of meaning in life. The overall Cronbach’s α coefficient for the scale is 0.940, indicating good reliability. In this study, the Cronbach’s α coefficient for this questionnaire was 0.963.
Perceived social support scale (PSSS)
This scale was developed by Professors Blumenthal and Zimet in 1988 [27] as a tool primarily designed to measure and evaluate the level of self-perceived social support among individuals. The Chinese adaptation version by Jiang Qianjin et al. [28] was employed in this study, which is mainly used to assess the degree of social support individuals perceive from family, friends, or others. It comprises 12 items across three dimensions: family support (4 items), friend support (4 items), and other support (4 items). The scale employs a 7-point Likert scale, where 1 indicates “strongly disagree” and 7 indicates “strongly agree.” The total score is the sum of all the items, with higher scores indicating greater perceived social support. The Chinese version demonstrated good overall reliability with a Cronbach’s α coefficient of 0.817. In this study, the Cronbach’s α coefficient for the scale was 0.919.
Statistical analysis
The data were statistically analysed using SPSS 26.0 software. Count data are presented as frequencies (N) and percentages (%). For quantitative data, if normally distributed, the mean (M) and standard deviation (SD) were used for description; independent samples t tests and analysis of variance (ANOVA) were employed for intergroup comparisons. If not normally distributed, the median (M) and interquartile range (IQR) were used for description. In this study, normality tests were performed for quantitative data. The total and subscale scores of palliative care decision-making participation, as well as scores of palliative care attitude, three-dimensional meaning in life, and perceived social support, were non-normally distributed and are presented as median (interquartile range). Between-group comparisons were conducted using the Mann‑Whitney U test and the Kruskal‑Wallis H test. Spearman correlation analysis was used to examine the relationships among key variables: involvement in palliative care decision-making, attitudes towards palliative care, three-dimensional sense of meaning in life, and perceived social support. Variables showing statistical significance in univariate analysis were further explored via multiple linear regression analysis. Statistical significance was determined at a two-tailed P value < 0.05.
Results
Descriptive statistics and univariate analysis
This study collected a total of 432 questionnaires, with 426 valid responses retained, yielding a valid response rate of 98.6%. Table 1 presents the participants’ sociodemographic characteristics: 245 males and 181 females, mean age 70.59 ± 7.39 years, ranging from 60 to 98 years; 53.52% had an educational attainment of high school or higher. The total score of participants on the Decision-Making Participation Scale for Palliative Care in Elderly Terminally Ill Patients was 73.00 (64.00, 81.00), indicating a moderate overall level. The scores were 18.00 (15.00, 20.00) for the behavioural attitude dimension, 16.00 (13.00, 19.00) for the subjective norms dimension, 15.00 (13.00, 16.00) for perceived behavioural control, 14.00 (12.00, 16.00) for behavioural intention, and 10.00 (8.00, 11.00) for the behavioural dimension; the score for the Palliative Care Attitudes Scale was 35.00 (31.75, 39.00), the score for sense of meaning in life across three dimensions was 49.00 (47.00, 57.00), and the score for perceived social support was 60.00 (58.00, 64.25). All values are presented as median (interquartile range). Table 1 also presents the univariate analysis results of different sociodemographic factors influencing the participation of elderly patients in the terminal stage in palliative care decision-making. The results revealed statistically significant differences (P < 0.05) among elderly patients at the end of life in terms of age, educational attainment, place of residence, living situation, monthly income, primary caregiver, decision-making preference, awareness of advance directives, and level of understanding of palliative care.
Table 1.
Comparative analysis of total scores of palliative care decision-making participation among elderly patients in the terminal stage with different characteristics (n = 426)
| Demographic factors | n(%) | Participation in Palliative Care Decision-Making(M ± SD)/M(P25, P75) | Test statistic | P |
|---|---|---|---|---|
| Sex | 0.642a | 0.521 | ||
| Male | 245(57.50%) | 73.17 ± 12.66 | ||
| Female | 181(42.50%) | 72.41 ± 11.18 | ||
| Age | 70.163c | < 0.001*** | ||
| 60 ~ 69 | 201(47.20%) | 76(69.50,85.00) | ||
| 70 ~ 79 | 168(39.40%) | 70.79 ± 10.81 | ||
| 80~ | 57(13.40%) | 62.23 ± 11.92 | ||
| Educational attainment | 193.976c | < 0.001*** | ||
| Elementary school and below | 86(20.20%) | 63.45 ± 9.34 | ||
| Junior High School | 112(26.30%) | 66.78 ± 8.75 | ||
| High school or vocational school | 148(34.70%) | 75.59 ± 9.11 | ||
| Associate degree or higher | 80(18.80%) | 87(79.25,93) | ||
| Marital status | 2.362b | 0.096 | ||
| Married | 370(86.90%) | 72.99 ± 12.12 | ||
| Divorced | 7(1.60%) | 80.71 ± 13.93 | ||
| Widowed | 49(11.50%) | 70.63 ± 19.84 | ||
| Place of residence | -5.869d | < 0.001*** | ||
| City | 283(66.40%) | 75(66,84) | ||
| Rural | 143(33.60%) | 68.06 ± 10.10 | ||
| Housing Situation | 0.691a | 0.028* | ||
| Not living alone | 410(96.20%) | 72.59 ± 12.02 | ||
| Living alone | 16(3.80%) | 79.31 ± 11.27 | ||
| Monthly income (including pension, child support, etc.) | 82.595b | < 0.001*** | ||
| < 3000 | 132(31.00%) | 66.98 ± 9.28 | ||
| 3001 ~ 5000 | 134(31.50%) | 68.09 ± 8.86 | ||
| 5001 ~ 10,000 | 119(27.90%) | 79.20 ± 10.86 | ||
| >10,001 | 41(9.60%) | 88.80 ± 8.95 | ||
| Primary caregiver | 5.950b | 0.003** | ||
| None | 25(5.90%) | 76.76 ± 14.44 | ||
| Spouse | 332(77.90%) | 73.42 ± 11.73 | ||
| Children | 69(16.20%) | 68.68 ± 11.80 | ||
| Your Decision-Making Preferences | 10.130b | < 0.001*** | ||
| Emphasizing individual autonomy in decision-making | 18(4.20%) | 78.06 ± 15.91 | ||
| Prioritizing the collective interests of the family, decisions are often made by family members | 40(9.40%) | 65.40 ± 11.53 | ||
| Balancing both aspects and making decisions through mutual consultation | 368(86.40%) | 73.40 ± 11.60 | ||
| Are you familiar with living wills? | 12.089a | < 0.001*** | ||
| Yes | 101(23.70%) | 83.77 ± 9.75 | ||
| No | 325(76.30%) | 69.45 ± 10.59 | ||
| Your level of understanding of palliative care | 29.439b | < 0.001*** | ||
| Have a general understanding (know the basics, but not in detail) | 10(2.30%) | 85.10 ± 10.10 | ||
| I’ve heard of it, but I don’t know the specifics | 73(17.10%) | 80.78 ± 12.74 | ||
| I have absolutely no idea | 343(80.50%) | 70.80 ± 11.02 | ||
| Primary Ways to Learn About Hospice Care | 1.276b | 0.288 | ||
| Healthcare workers | 54(12.70%) | 81.22 ± 12.87 | ||
| Family members | 12(2.80%) | 76.08 ± 14.43 | ||
| Friend | 4(0.90%) | 85.25 ± 6.99 | ||
| Media | 13(3.10%) | 85.23 ± 8.94 |
a: t-value, b: F-value, c: H-value, d: Z-value. All differences were statistically significant
*: P < 0.05 level; **: P < 0.01 level; ***: P < 0.01 level
Pearson correlation analysis
Participation in palliative care decision-making among terminally ill elderly patients was positively correlated with attitudes towards palliative care, three-dimensional sense of life meaning, and perceived social support scores (r = 0.666, 0.614, and 0.532, respectively; all P < 0.01).
Mediation analysis
In this study, the score of palliative care decision-making participation among elderly terminally ill patients was taken as the dependent variable. Demographic, sociological and cognitive categorical variables were assigned values according to predefined classification standards. Primary caregiver type and decision-making preference were set as dummy variables, and all scale scores were incorporated into the model in the form of original scores. Variables with statistical significance in univariate analysis and correlation analysis were included in the multiple linear regression analysis. The results of the multiple linear regression analysis for palliative care decision-making participation among elderly patients in the terminal stage are shown in Table 2. The results indicate that age, educational attainment, decision-making preference, awareness of advance directives, attitudes towards palliative care, and three-dimensional sense of life meaning are significant factors influencing the participation of elderly patients in the terminal stage in palliative care decision-making (all P < 0.05).
Table 2.
Multivariate linear regression analysis of factors influencing palliative care decision-making participation among elderly patients in the terminal stage (n = 426)
| Model | Unstandardized coefficient | Standardized Coefficient | t | P | 95.0% confidence interval for B | Collinearity Statistics | ||||
|---|---|---|---|---|---|---|---|---|---|---|
| B | Standard error | Beta | lower limit | upper limit | tolerance | VIF | ||||
| (Constant) | 32.415 | 5.071 | 6.392 | 0.000 | 22.446 | 42.383 | ||||
| Palliative Care Attitude Scale Total Score | 0.640 | 0.091 | 0.295 | 7.055 | 0.000 | 0.462 | 0.818 | 0.512 | 1.955 | |
| Educational attainment | 2.626 | 0.523 | 0.221 | 5.019 | 0.000 | 1.598 | 3.655 | 0.458 | 2.182 | |
| Three Dimensional Meaning in Life ScaleTotal Score | 0.383 | 0.059 | 0.252 | 6.444 | 0.000 | 0.266 | 0.5 | 0.583 | 1.714 | |
| Your Decision-Making Preferences | Prioritizing the collective interests of the family, decisions are often made by family members | -3.027 | 1.269 | -0.073 | -2.385 | 0.018 | -5.522 | -0.532 | 0.942 | 1.062 |
| Age Groups | -2.114 | 0.618 | -0.123 | -3.422 | 0.001 | -3.329 | -0.9 | 0.688 | 1.453 | |
| Are you familiar with living wills? | -3.101 | 1.104 | -0.11 | -2.809 | 0.005 | -5.272 | -0.931 | 0.585 | 1.709 | |
| R 2 | 0.626 | |||||||||
| Adjusted R² | 0.621 | |||||||||
| F | F = 117.124, P < 0.001 | |||||||||
Discussion
The total score for palliative care decision-making participation among elderly terminally ill patients was 73.00 (64.00, 81.00), indicating a moderate level, consistent with previous research [29]. Among all dimensions, the behavioral dimension had the lowest score [10.00 (8.00, 11.00)], suggesting that while these patients hold relatively positive cognitive attitudes and subjective willingness towards decision-making participation, such intentions are insufficiently translated into actual decision-making behaviours. Further analysis revealed that 80.5% of elderly patients with terminal illnesses had little or no knowledge of palliative care, which is consistent with the findings of Cheng et al. [30]. Moreover, only 23.7% were aware of advance directives, which may be a key factor contributing to their insufficient decision-making participation. On the one hand, China’s palliative care public education system remains underdeveloped, limiting access to relevant knowledge for elderly patients at the end of life [31]. Their understanding of “decision-making participation” often remains at the level of “passively accepting medical advice,” lacking awareness of active involvement. On the other hand, traditional cultural norms emphasising “family-dominated medical decision-making” persist [32], with 86.4% of patients opting for “balanced personal-family consultation” and often compromising personal wishes to avoid family conflicts; and age-related physical decline and psychological stress [33], which reduce their capacity for active decision-making. Collectively, these factors result in moderate decision-making participation with poor behavioral translation. Clinically, there is an urgent need to establish a “hospital-community-family” tripartite palliative care education and support system led by multidisciplinary teams [32]. Stratified interventions should be implemented within 48 h of admission, including palliative care knowledge dissemination, advance directive promotion, family communication training, and personalized life review interventions. These measures can enhance patients’ decision-making knowledge, positive attitudes towards palliative care, and behavioral conversion capacity, helping translate their wishes into value-aligned palliative care decisions and strengthening their autonomous decision-making ability.
Multiple linear regression analysis identified age, educational attainment, decision-making preferences, awareness of advance directives, attitudes towards palliative care, and three-dimensional sense of life meaning as key factors influencing palliative care decision-making participation among elderly terminally ill patients.
Age was a significant negative predictor: higher age correlated with lower participation, possibly due to age-related physiological (cognitive decline, sensory impairment, reduced medical information comprehension) and cognitive-attitudinal changes (deep adherence to traditional “doctor/family-led” arrangements) [34, 35]. Additionally, protective instincts often lead healthcare providers and families to withhold information and make decisions on patients’ behalf, neglecting their autonomy [36], while narrower social support networks further reduce patients’ decision-making confidence [37]. Clinically, targeted strategies (concise illustrated materials, video assistance, family education, one-on-one communication) should be adopted to lower comprehension barriers and enhance participation.
Educational attainment exerted a significant positive effect on participation, consistent with Chen et al. [38]. Elderly patients with higher education possess stronger information-gathering and logical analysis abilities, enabling them to proactively learn about palliative care via multiple channels (e.g., communication with medical staff, materials review), clearly understand their condition and treatment options, and express their personal wishes more accurately [39]. They also demonstrate a deeper understanding of “life dignity” and “decision autonomy,” fostering stronger subjective willingness to participate [40]. In contrast, those with limited education may hold cognitive biases (e.g., perceiving palliative care as “abandoning treatment”) due to insufficient knowledge [41] or lack confidence in expressing needs, reducing their participation. Additionally, highly educated patients are more receptive to novel medical concepts (e.g., advance care planning [ACP], advance directives), laying a psychological foundation for their involvement [42]. These findings suggest that clinical interventions for elderly patients with low educational attainment should prioritise basic cognitive education. Accessible educational materials and case-based illustrations can enhance their understanding of palliative care while increasing their confidence and capacity to participate in related decision-making.
This study revealed that decision-making preferences significantly influence palliative care decision-making participation among elderly terminally ill patients: those prioritizing family collective interests and accepting family-led decisions had significantly lower participation than those emphasizing personal autonomy. This reflects the profound impact of traditional family values, where some patients prioritize “family harmony” over personal wishes, perceiving “family-centeredness” as a familial responsibility and voluntarily relinquishing decision-making autonomy [43]. Consequently, they focus on family members’ emotional reactions, fearing caregiving burdens or family conflicts, and tend to passively accept family arrangements [44]. Moreover, family members’ decision-making attitudes in turn influence elderly patients’ preferences [45]. When families long dominate household affairs, elderly patients may gradually adopt a “dependent” decision-making pattern [10], further reducing their proactive participation. Clinically, interventions should target both patients and families: promoting advance care planning for patients to enhance participation, and conducting family communication guidance workshops to help families respect patients’ autonomy and balance “family interests” with “personal wishes.”
This study revealed that awareness of advance directives is a factor influencing end-of-life care decision-making participation among elderly patients in the terminal stage. Elderly patients in the terminal stage who were aware of advance directives scored significantly higher on decision-making participation than those who were unaware. Advance directives refer to written documents signed in advance while individuals are healthy or mentally competent, serving as a tool to clarify patients’ end-of-life medical wishes in advance [46, 47]. They aim to safeguard patients’ medical autonomy, enhance end-of-life quality of life, and alleviate decision-making pressure on families [48]. Informed patients demonstrate better understanding of palliative care and clearer awareness of personal needs [49, 50], while uninformed patients lack end-of-life planning and are more likely to be passively guided by families/healthcare providers [51], Given low public awareness and immature legislation on advance directives in China [52], future efforts should enhance education (hospital/community outreach) and improve legal frameworks.
Attitudes towards palliative care were positively associated with participation, consistent with Pearson correlation results. Positive attitudes enable patients to accurately understand palliative care, strengthen decision-making confidence, and reduce compromises [30]. Univariate analysis showed patients with “some knowledge” or “having heard of” palliative care had higher participation than those “completely unaware” [53, 54], confirming that cognitive understanding underpins positive attitudes, which in turn drive active participation [31]. Therefore, clinical practice should proactively provide palliative care awareness education and death education shortly after patients are admitted. This helps elderly patients in the terminal stage and their families establish a rational perception of death, enhances their positive attitudes towards palliative care, and ultimately increases their participation in palliative care decision-making.
Three-dimensional sense of life meaning positively predicted participation, consistent with Lei et al. [17]. Patients with a strong sense of life meaning approach death calmly, prioritize end-of-life quality/dignity, and view autonomous decision-making as a way to fulfill life value [55]. They perceive autonomous decision-making regarding palliative care services as a key means of fulfilling their personal life value, thereby demonstrating greater willingness to actively participate in decision-making. In contrast, elderly patients with weaker life meaning may have blurred perceptions of “life value” [56], which affects their ability to cope with illness and will to survive [57]. Lacking intrinsic motivation for active decision-making, they tend to passively accept others’ arrangements. Therefore, integrating meaning-centred therapy into holistic palliative care services is clinically effective. Activities such as life reviews, wish list development, and music therapy help elderly patients clarify their terminal life goals, perceive the value of life, and strengthen their intrinsic motivation for active decision-making at the end of life. This approach can more effectively increase their participation in palliative care decisions.
In addition, gender, marital status and main access channels to palliative care knowledge showed no significant associations with decision-making participation among elderly terminally ill patients. This may be attributed to the unbalanced gender distribution, the relatively homogeneous composition of marital status dominated by married and widowed individuals in the recruited sample. Meanwhile, the overall low popularization level of palliative care knowledge leads to insignificant statistical differences across different information acquisition pathways.
Limitations
This study enrolled patients residing in the city of Urumqi, resulting in limited geographical representativeness. Future research could expand the sample sources to include patients from more regions and different medical institutions. Additionally, as this study is cross-sectional, it cannot reveal causal relationships between various factors and decision-making participation. Longitudinal studies could subsequently be conducted subsequently to further validate these findings.
Conclusions
This study revealed that elderly patients in the terminal stage demonstrated moderate levels of participation in palliative care decision-making. Key influencing factors included age, educational attainment, decision-making preferences, awareness of advance directives, attitudes towards palliative care, and a three-dimensional sense of life meaning. Consequently, at the national level, enhancing the public education system on palliative care, promoting the implementation of advance directive legislation, and incorporating death education into elderly health services are essential. In clinical practice, medical and nursing teams can formulate tiered intervention strategies. Firstly, conduct tiered assessment with focused attention on elderly patients, those with low educational attainment, patients whose treatment decisions are dominated by family members, and those lacking awareness of advance directives. Secondly, carry out cognitive health education to popularize palliative care knowledge in plain language and correct the cognitive misunderstanding that hospice care equals giving up treatment. Thirdly, strengthen one-on-one communication to respect patients’ own wishes and reduce surrogate decision-making by family members. Fourthly, provide family support guidance to help family members balance household responsibilities and patients’ right to self-determination, so as to mitigate decision-making conflicts. Fifthly, promote the implementation of advance directives to guide patients to express their end-of-life preferences at an early stage and enhance their capacity for autonomous decision-making. Through multi-dimensional supportive interventions, research findings can be effectively translated into clinical practice, thereby safeguarding the dignity of life and decision-making autonomy among elderly patients in the terminal stage.
Acknowledgements
The author extends gratitude to the elderly patients with terminal illnesses who participated in the study, as well as to the four Grade A tertiary hospitals in Ürümqi for their clinical support and assistance.
Abbreviations
- PC
Palliative Care
- PCAS-9
Palliative Care Attitudes Scale
- 3DM
Three Dimensional Meaning in Life Scale
- MSPSS
Multidimensional Scale of Perceived Social Support
Authors' contributions
**Mengru Yang: ** Writing–review & editing, Writing–original draft, Visualization, Validation, Supervision, Methodology, Investigation, Formal analysis, Data curation.**Yue Zhao: ** Writing–original draft, Visualization, Software, Methodology, Investigation, Formal analysis, Data curation.**Lingyun Tian: ** Writing–review & editing.**Ningning Hu: ** Writing–review & editing, Project administration, Investigation.**Liaofang Wu: ** Writing – review & editing.**Yinglan Li: ** Supervision, Resources, Project administration, Funding acquisition, Conceptualization.
Funding
This study was jointly funded by the Clinical Medical Research Promotion Program—Lantern Angel Nursing Research Series Project (Grant No.: 2025CMFA21) and the Autonomous Region Higher Education Institutions Basic Research Fund Project (Grant No.: XJEDU2024P053). The funding agencies did not participate in the research process.
Data availability
The data that support the findings of this study are available on request from the corresponding author.
Declarations
Ethics approval and consent to participate
This study involved human participants and obtained ethical approval from the Ethics Committee of the Affiliated Tumor Hospital of Xinjiang Medical University (No. K-2024212). All participants signed a written informed consent form prior to completing the questionnaire. The study was conducted in full compliance with the guidelines stipulated in the Declaration of Helsinki.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Mengru Yang and Yue Zhao contributed equally to this work and are co-first authors.
Contributor Information
Liaofang Wu, Email: 931720116@qq.com.
Yinglan Li, Email: yuyan0202@sina.com.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author.