Abstract
Abstract
Objective
The primary aim of this study was to assess the attitudes and practices of Chinese hospice physicians involved in palliative sedation, with an additional focus on exploring factors associated with the experience of palliative sedation.
Design
A cross-sectional study using a web-based structured questionnaire.
Setting and participants
With the support of the Hospice Committee of the Chinese Anti-Cancer Association, this study employed a convenience sampling method to survey hospice physicians nationwide. Subsequently, a total of 550 questionnaires were distributed via email.
Outcome measures
Physicians’ attitudes and practices regarding palliative sedation.
Results
The statistical analysis was based on 449 valid responses. Among them, 252 had no experience with palliative sedation, while only 197 had experience in this area. Notably, the study of relevant guidelines (OR=8.01, 95% CI (5.19 to 12.38), p<0.001) and participation in training programmes (OR=5.45, 95% CI (3.62 to 8.2), p<0.001) were significantly associated with experience in palliative sedation. Among these experienced physicians, 108 physicians (54.8%) administered palliative sedation to between 1 and 5 patients, with only 21 physicians (10.7%) treating more than 20 patients over the last year. Additionally, 96 physicians (48.7%) reported feeling stressed during the administration of palliative sedation. Regarding perspectives on palliative sedation, 31 physicians (15.7%) believed it is intended to hasten death, and 60 physicians (30.5%) considered that it may shorten a patient’s lifespan. Furthermore, five physicians (2.5%) perceived no difference between palliative sedation and euthanasia.
Conclusions
The findings indicate a relative scarcity of hospice physicians in China with experience in palliative sedation, with many encountering significant stress during its implementation. There is an urgent need to enhance professional training and establish guidelines for palliative sedation in China, which will provide a solid foundation for its application and foster the development of hospice care.
Keywords: PALLIATIVE CARE, Surveys and Questionnaires, Physicians
Strengths and limitations of this study.
To our knowledge, this is the first nationwide survey on palliative sedation conducted in China.
Due to the lack of standardised questionnaires in the field of palliative sedation, we developed a web-based structured questionnaire based on findings from literature and clinical experiences.
The survey comprehensively addresses multiple key and urgent issues related to palliative sedation.
The use of convenience sampling without a formal sample size calculation may have introduced selection bias and reduced the study’s statistical power, representativeness and generalisability.
The self-reported data from hospice physicians may be subject to recall biases and social desirability effects.
Introduction
Palliative sedation is employed as a last-resort measure at the end of life to mitigate severe and intractable symptoms. This approach involves the administration of sedatives to reduce the patient’s level of consciousness, thereby easing their distress.1 To date, the majority of guidelines advocate palliative sedation as a necessary and appropriate intervention for managing severe and refractory symptoms.1,6 The reported prevalence of palliative sedation varies widely in the literature, which may stem from inconsistencies in definitions, differences in care settings and the diverse patient populations studied. According to available data, approximately 25%–33% of patients receiving hospice care may require some form of palliative sedation at some point.7
To gain a deeper understanding of the application of palliative sedation and to further standardise its use, several countries have conducted national surveys on palliative sedation. Research by Morita et al has shown that palliative sedation is effective for patients experiencing severe physical and psychological distress. The decision to use this intervention is influenced by a physician’s clinical experience and their level of professional burnout. Notably, physicians with higher burnout levels or those less confident in providing psychological care are more inclined to opt for continuous deep sedation. Therefore, it is crucial to provide targeted training and education on palliative sedation to physicians.8 According to a study by Lux et al, a vast majority of physicians (99%) consider palliative sedation a suitable treatment for patients with intractable symptoms, with midazolam being the preferred medication.9 Additionally, a survey conducted by Maiser et al revealed a lack of consensus on the procedural aspects of palliative sedation and its implementation in various clinical settings. Future research should clearly define the clinical contexts and required sedation levels for palliative sedation to standardise its use effectively.10
Currently, palliative sedation is regarded as a critical component of end-of-life care, yet its ethical implications continue to spark debate.11 The primary ethical concern revolves around the possibility of palliative sedation shortening the lifespan of terminally ill patients. While most research indicates that palliative sedation does not decrease survival time,12 some physicians contend that it may reduce patients’ survival time and could be barely distinguishable from euthanasia.13 A nationwide survey conducted by Benítez-Rosario et al among Spanish palliative care specialists revealed that one-quarter of the respondents believed continuous palliative sedation could pose a risk of shortening a patient’s life. Additionally, 5% of physicians viewed continuous palliative sedation as almost equivalent to euthanasia.14 In a comprehensive study in the Netherlands, 60% of physicians administering continuous deep sedation reported that they had no intention to hasten death, 38% reported that they had taken hastening of death into account and 2% reported their intention was to hasten death.15 These findings underscore the significant emotional and ethical challenges faced by hospice and palliative care professionals, emphasising how their attitudes play a critical role in shaping the practice of palliative sedation.
As hospice care in China remains in its early stages16,18 and the application of palliative sedation is relatively limited, conducting a nationwide survey to comprehensively examine the attitudes and practices of Chinese hospice physicians toward palliative sedation is particularly important, with a focus on key aspects such as characteristics of participants, number of patients, indications, decision-making, drug selection, selection of sedation method, monitoring and ethical issues. By mapping current practices, identifying key challenges and examining the factors that influence experience of palliative sedation, this study provides valuable insights to guide its rational, evidence-based application in hospice care. These findings will help inform the development of standardised guidelines, ultimately improving the quality of life for terminally ill patients and advancing hospice care in China.
Methods
Design
A cross-sectional descriptive study was conducted in 2023 using a web-based structured questionnaire.
Aims
The primary aim of this study was to assess the attitudes and practices of Chinese hospice physicians involved in palliative sedation, with an additional focus on exploring factors associated with the experience of palliative sedation.
Participants
Owing to the absence of a comprehensive database containing contact information for hospice physicians in China, it was difficult to determine the exact number of physicians involved in palliative sedation. As an authoritative body in the field of hospice care, the Hospice Committee of the Chinese Anti-Cancer Association played a crucial role in advancing the development of hospice care in China. Therefore, with the committee’s support, this study employed a convenience sampling method to survey physicians nationwide who were engaged in hospice care.
Participants were eligible for inclusion if they (1) were actively involved in hospice care in China, (2) could be contacted via email and (3) provided informed consent. To ensure national representativeness of the survey participants, coordinators from various provinces were selected from this committee. These coordinators typically acted as leaders of hospice within their respective provinces, possessed the contact details for most hospice physicians in their regions and were responsible for distributing survey questionnaires via email. Coordinators meticulously recorded and tracked all responses received from the survey. During the sampling process, the representativeness of the sample was ensured by considering several important factors, including the geographic distribution of hospitals, hospital levels and the titles of the participating physicians.
Survey development and data collection
Building on findings from literature and clinical experiences in palliative sedation, a web-based structured questionnaire was developed. The initial drafts of the questionnaire were rigorously evaluated by a panel of top experts in the field, including an ethicist, a medical sociologist, three physicians and two nurses. The questionnaire underwent three rounds of revisions to ensure its applicability and thoroughness. Once finalised, it was pilot tested with a group of 50 hospice physicians. Feedback from the pilot test highlighted areas that needed further optimisation. The overall length of the questionnaire was adjusted to improve respondent engagement, and some questions were revised to make their intent clearer. Based on this feedback, a revised version of the questionnaire was prepared, which then underwent a second evaluation by the expert panel to ensure its applicability and robustness before its final deployment.
The survey comprised two sections with a total of 66 questions (online supplemental appendix 1). The initial section, with 26 questions, sought to capture baseline data from hospice physicians. Experience with palliative sedation was defined based on a self-reported Yes/No question regarding whether the physicians had ever performed palliative sedation in clinical practice. Physicians who reported no such experience concluded their participation at this point. Those with experience in palliative sedation continued to the second section, which covered various aspects including the number of patients, indications for palliative sedation, decision-making, drug selection, selection of sedation method, monitoring and ethical issues. Questions were structured neutrally with most allowing for dichotomous responses (yes or no, supplemented with ‘I don’t know’). Participants generally spent between 5 and 10 min to complete the survey.
The collection of data was carried out from May to July 2023. Two research assistants managed the downloading and validation of the questionnaire data from the online platform. By the end of July 2023, a total of 550 questionnaires had been distributed, with 460 hospice physicians completing them, resulting in a response rate of 83.6%.
Statistical analysis
This study primarily provided a descriptive analysis of the questionnaire data. It began by analysing responses to the first section of the questionnaire, comparing the characteristics of physicians with and without experience in palliative sedation. Subsequently, it presented a detailed analysis of the second section, which was completed only by physicians with such experience. Categorical variables were expressed as numbers and percentages, while continuous variables were expressed as mean and SD for normal distributions, or median and IQR for skewed distributions. For comparisons, the χ2 test was used for categorical variables, the T-test for normally distributed continuous variables, and the Kruskal-Wallis test for non-normally distributed continuous variables.
In addition, multivariable logistic regression analyses were performed to explore factors associated with the experience of palliative sedation. Due to the limited literature on this topic, covariates were selected based on clinical judgement and expert consensus. These covariates included age, sex, hospital level, education level, job title, religion, experience in hospice care, the way you work for hospice, guidelines and training.
All analyses were performed with the statistical software packages R V.4.2.1 (http://www.R-project.org, The R Foundation) and Free Statistics software V.1.9. A two-tailed test was performed and a p<0.05 was considered statistically significant.
Patient and public involvement
None.
Results
A total of 460 hospice physicians completed the questionnaire. Of these, 11 responses were excluded due to more than 10% missing data. Statistical analyses were thus conducted on the remaining 449 valid questionnaires.
Characteristics of participants
Table 1 presents the characteristics of the hospice physicians surveyed. Of the 449 participants, 252 had no experience with palliative sedation, while 197 did. The cohort included 292 females (65.0%) and 157 males (35.0%), with a mean age of 40.8 years (SD 8.1). These physicians primarily came from the Eastern and Central regions of China, each region contributing 164 physicians (36.5%). Over half of the physicians were associated with tertiary hospitals (55.7%). Additionally, 150 physicians held a master’s degree or higher (33.4%) and 363 held the position of attending physician or a higher medical title. Regarding the definition of palliative sedation, 400 doctors (89.1%) selected the statement: ‘Palliative sedation involves inducing a lowered or unconscious state of consciousness in patients using sedative medications to alleviate the intractable symptoms causing suffering in end-of-life patients.’ Moreover, multivariable logistic regression analysis showed that studying guidelines on palliative sedation (OR=8.01, 95% CI (5.19 to 12.38), p<0.001), and participation in relevant training programmes (OR=5.45, 95% CI (3.62 to 8.2), p<0.001) are associated with the experience in palliative sedation. Physicians in higher-level hospitals were also more likely to have such experience (level 2: OR=2.64, 95% CI (1.19 to 5.83), p=0.017; level 3: OR=3.56, 95% CI (1.65 to 7.71), p=0.001) (online supplemental table 1).
Table 1. Characteristics of participants.
| Variables | Total (n=449) | Without experience in palliative sedation (n=252) |
With experience in palliative sedation (n=197) |
P value |
|---|---|---|---|---|
| Sex, n (%) | 0.044 | |||
| Male | 157 (35.0) | 78 (31) | 79 (40.1) | |
| Female | 292 (65.0) | 174 (69) | 118 (59.9) | |
| Age (years), mean (SD) | 40.8 (8.1) | 41.3 (8.0) | 40.0 (8.2) | 0.099 |
| Region, n (%) | 0.098 | |||
| Eastern China | 164 (36.5) | 94 (37.3) | 70 (35.5) | |
| Central China | 164 (36.5) | 89 (35.3) | 75 (38.1) | |
| Western China | 59 (13.1) | 27 (10.7) | 32 (16.2) | |
| Northeast China | 62 (13.8) | 42 (16.7) | 20 (10.2) | |
| Hospital level, n (%) | <0.001 | |||
| Level 1 | 60 (13.4) | 45 (17.9) | 15 (7.6) | |
| Level 2 | 133 (29.6) | 79 (31.3) | 54 (27.4) | |
| Level 3 | 250 (55.7) | 123 (48.8) | 127 (64.5) | |
| Other | 6 (1.3) | 5 (2) | 1 (0.5) | |
| Education level, n (%) | 0.228 | |||
| College and below | 21 (4.7) | 12 (4.8) | 9 (4.6) | |
| Bachelor’s degree | 278 (61.9) | 166 (65.9) | 112 (56.9) | |
| Master’s degree | 137 (30.5) | 68 (27) | 69 (35) | |
| Doctoral degree | 13 (2.9) | 6 (2.4) | 7 (3.6) | |
| Job title, n (%) | 0.768 | |||
| Resident physician | 86 (19.2) | 45 (17.9) | 41 (20.8) | |
| Attending physician | 157 (35.0) | 90 (35.7) | 67 (34) | |
| Associate chief physician | 151 (33.6) | 88 (34.9) | 63 (32) | |
| Chief physician | 55 (12.2) | 29 (11.5) | 26 (13.2) | |
| Administrative position, n (%) | 0.345 | |||
| Director/associate director of hospice care | 70 (15.6) | 39 (15.5) | 31 (15.7) | |
| Hospice physician | 82 (18.3) | 38 (15.1) | 44 (22.3) | |
| Director/associate director of medicine, other specialties | 80 (17.8) | 46 (18.3) | 34 (17.3) | |
| Physician, other specialties | 169 (37.6) | 102 (40.5) | 67 (34) | |
| Other | 48 (10.7) | 27 (10.7) | 21 (10.7) | |
| Religion, n (%) | 0.866 | |||
| None | 422 (94.0) | 238 (94.4) | 184 (93.4) | |
| Buddhism | 8 (1.8) | 5 (2) | 3 (1.5) | |
| Christianity | 6 (1.3) | 3 (1.2) | 3 (1.5) | |
| Other | 13 (2.9) | 6 (2.4) | 7 (3.6) | |
| Experience as a physician (years), median (IQR) | 15.0 (9.0, 24.0) | 16.0 (10.0, 24.0) | 15.0 (8.0, 22.0) | 0.107 |
| Experience in hospice care (years), median (IQR) | 3.0 (1.0, 5.5) | 3.0 (1.0, 6.0) | 3.0 (2.0, 5.0) | 0.091 |
| The way you work for hospice, n (%) | 0.115 | |||
| Part-time | 267 (59.5) | 158 (62.7) | 109 (55.3) | |
| Full-time | 182 (40.5) | 94 (37.3) | 88 (44.7) | |
| Time used for hospice care, n (%) | 0.007 | |||
| <25% | 214 (47.7) | 135 (53.6) | 79 (40.1) | |
| 25%–50% | 113 (25.2) | 64 (25.4) | 49 (24.9) | |
| 51%–75% | 43 (9.6) | 18 (7.1) | 25 (12.7) | |
| >75% | 79 (17.6) | 35 (13.9) | 44 (22.3) | |
| The location of your hospice work, n (%) | <0.001 | |||
| Hospital wards | 390 (86.9) | 204 (81) | 186 (94.4) | |
| Hospital outpatient clinic | 13 (2.9) | 10 (4) | 3 (1.5) | |
| Community health centre | 27 (6.0) | 19 (7.5) | 8 (4.1) | |
| Home | 9 (2.0) | 9 (3.6) | 0 (0) | |
| Other | 10 (2.2) | 10 (4) | 0 (0) | |
| Medical specialty, n (%) | <0.001 | |||
| Hospice care | 62 (13.8) | 26 (10.3) | 36 (18.3) | |
| Oncology | 149 (33.2) | 75 (29.8) | 74 (37.6) | |
| Anaesthesiology | 10 (2.2) | 8 (3.2) | 2 (1) | |
| Pain medicine | 11 (2.4) | 3 (1.2) | 8 (4.1) | |
| Geriatric medicine | 95 (21.2) | 60 (23.8) | 35 (17.8) | |
| Other | 122 (27.2) | 80 (31.7) | 42 (21.3) | |
| Have you studied the guidelines related to palliative sedation, n (%) | <0.001 | |||
| No | 217 (48.3) | 174 (69) | 43 (21.8) | |
| Yes | 232 (51.7) | 78 (31) | 154 (78.2) | |
| Have you received any training related to palliative sedation, n (%) | <0.001 | |||
| No | 245 (54.6) | 182 (72.2) | 63 (32) | |
| Yes | 204 (45.4) | 70 (27.8) | 134 (68) | |
Number of patients
Among the 197 physicians experienced in palliative sedation, 54 (27.4%) had administered it within the past week, 48 (24.4%) within the past month, 70 (35.5%) within the past 6 months, 20 (10.2%) within the past year and 5 (2.5%) within the past 5 years. In the last year, 108 physicians (54.8%) administered palliative sedation to between 1 and 5 patients, while only 21 (10.7%) treated more than 20 patients. The majority of palliative sedation took place in hospital wards, with only a small number conducted in outpatient clinics and community health centres; none were performed at home. Additionally, 96 physicians (48.7%) reported feeling pressure while implementing palliative sedation (online supplemental table 2).
Indications for palliative sedation
Among the 197 physicians experienced in palliative sedation, 115 (58.4%) identified the presence of refractory symptoms in terminal-stage patients as the primary prerequisite for implementing palliative sedation. Regarding the expected survival of patients undergoing palliative sedation, 24 physicians (12.2%) indicated that patients typically have an expected survival of less than 48 hours, 121 physicians (61.4%) stated it is usually less than 2 weeks, and 52 physicians (26.3%) reported it to be more than 2 weeks (online supplemental table 3). For a comprehensive description of the refractory symptoms necessitating palliative sedation, refer to figure 1.
Figure 1. Main refractory symptoms for palliative sedation (N=788).
Decision-making
When making decisions about palliative sedation, 133 physicians (67.5%) reported that patients were involved in discussions about its application, while 190 physicians (96.4%) indicated that the patient’s family participated in these discussions. In the vast majority of cases, before implementing sedation, hospice physicians explained the purpose, process and risks of palliative sedation to the patient or their family. Additionally, 186 physicians (94.4%) noted that there was a clear division of responsibilities before the initiation of palliative sedation. Furthermore, 185 physicians (93.9%) reported that the informed consent form was signed before initiating palliative sedation, as detailed in table 2.
Table 2. Decision-making.
| Variables | Total (n=197) |
|---|---|
| In general, do patients typically participate in discussions about the use of palliative sedation, n (%) | |
| Yes | 133 (67.5) |
| No | 64 (32.5) |
| In general, do patients family members typically participate in discussions about the use of palliative sedation, n (%) | |
| Yes | 190 (96.4) |
| No | 7 (3.6) |
| In general, who typically makes the decision to implement palliative sedation, n (%) | |
| Physician | 179 (90.9) |
| Patient | 110 (55.8) |
| Family members | 157 (79.7) |
| Nurse | 53 (26.9) |
| Other | 18 (9.1) |
| Before administering palliative sedation, do you explain the purpose and process of palliative sedation to the patient or family, n (%) | |
| Yes | 194 (98.5) |
| No | 3 (1.5) |
| Before administering palliative sedation, do you explain the risks of palliative sedation to the patient or family, n (%) | |
| Yes | 196 (99.5) |
| No | 1 (0.5) |
| Before administering palliative sedation, do you communicate adequately with nurses or hospice team including the patient’s condition the patient’s wishes and the sedation plan, n (%) | |
| Yes | 197 (100.0) |
| No | 0 (0) |
| Is there a defined division of responsibilities (such as developing the protocol, monitoring, adjusting medications, documentation, etc) before the initiation of sedation, n (%) | |
| Yes | 186 (94.4) |
| No | 11 (5.6) |
| Have you signed an informed consent form before implementing palliative sedation, n (%) | |
| Yes | 185 (93.9) |
| No | 12 (6.1) |
Drug selection
Figure 2 depicts the drug selection during palliative sedation. Of the 197 hospice physicians, 98 physicians (49.7%) preferred benzodiazepines such as midazolam, while 58 physicians (29.4%) opted for opioids like morphine. Other choices included dexmedetomidine (11.2%), barbiturates such as phenobarbital (4.1%), antipsychotics like haloperidol (3%) and propofol (1.5%). Regarding the use of opioids, 71 physicians (36.0%) believed they should be used exclusively for pain management, 90 physicians (45.7%) endorsed their use for sedation and 36 physicians (18.3%) recommended using them until the desired sedation level is achieved, then discontinuing their use (online supplemental table 4).
Figure 2. Sedative drugs used for palliative sedation (N=197).
Selection of sedation method
Based on the continuity of palliative sedation, 113 physicians (57.4%) preferred intermittent sedation, while 84 (42.6%) opted for continuous sedation. Regarding the depth of sedation, 169 physicians (85.8%) favoured light sedation, with only 28 (14.2%) selecting deep sedation. With respect to the method of drug delivery, 121 physicians (61.4%) chose continuous administration, compared with 76 (38.6%) who preferred intermittent administration. To achieve the desired level of sedation, an overwhelming majority of physicians (98.0%) adopted a strategy of gradual titration of medication (online supplemental table 5).
Monitoring
During the administration of palliative sedation, 195 physicians (99.0%) reported monitoring vital signs, and 188 (95.4%) indicated that they monitored the depth of sedation. Several methods are used to monitor the depth of sedation, such as observation, scale assessments and electroencephalogram (EEG) monitoring (online supplemental table 6).
Ethical issues
The use of palliative sedation often raises ethical issues. Of the surveyed physicians, 139 (70.6%) assert that palliative sedation is not intended to hasten death, while 27 (13.7%) are unsure of its intentions, and 31 (15.7%) believe it is intended to hasten death. Concerning the impact of palliative sedation on the survival of terminally ill patients, 111 physicians (56.3%) do not believe it shortens survival, 60 (30.5%) think it does and 26 (13.2%) are uncertain. Moreover, 180 physicians (91.4%) view palliative sedation as distinct from euthanasia, but 5 (2.5%) see no difference. Regarding the provision of hydration and nutrition after palliative sedation, most physicians (71.1%) consider it depends on the wishes of the patient and family and the condition of the patient. Furthermore, while a majority of physicians oppose discontinuing oxygen inhalation (83.8%), withdrawing ventilatory support (71.6%), or discontinuing vasoactive agents (67.5%), some hold contrary views: 28 (14.2%) support discontinuing oxygen inhalation, 43 (21.8%) endorse withdrawing ventilatory support, and 46 (23.4%) agree with discontinuing vasoactive agents, as detailed in table 3.
Table 3. Ethical issues.
| Variables | Total (n=197) |
|---|---|
| Do you think palliative sedation is intended to hasten death, n (%) | |
| Yes | 31 (15.7) |
| No | 139 (70.6) |
| I don't know | 27 (13.7) |
| Do you think palliative sedation shortens survival in end stage patients, n (%) | |
| Yes | 60 (30.5) |
| No | 111 (56.3) |
| I don't know | 26 (13.2) |
| Is there a difference between palliative sedation and euthanasia, n (%) | |
| Yes | 180 (91.4) |
| No | 5 (2.5) |
| I don't know | 12 (6.1) |
| Before implementing palliative sedation, how often do you consult the Ethics Consultation Committee, n (%) | |
| Never | 24 (12.2) |
| Rarely | 31 (15.7) |
| Sometimes | 56 (28.4) |
| Often | 42 (21.3) |
| Always | 44 (22.3) |
| Should hydration and nutrition be discontinued after the sedation, n (%) | |
| Yes | 34 (17.3) |
| No | 23 (11.7) |
| It depends on the wishes of the patient and family and the condition of the patient | 140 (71.1) |
| I don't know | 0 (0) |
| Should oxygen inhalation be discontinued after the sedation, n (%) | |
| Yes | 28 (14.2) |
| No | 165 (83.8) |
| I don't know | 4 (2.0) |
| Should ventilatory support be withdrawn after the sedation, n (%) | |
| Yes | 43 (21.8) |
| No | 141 (71.6) |
| I don't know | 13 (6.6) |
| Should vasoactive agents be discontinued after the sedation, n (%) | |
| Yes | 46 (23.4) |
| No | 133 (67.5) |
| I don't know | 18 (9.1) |
Discussion
This study provides a comprehensive analysis of the application of palliative sedation in hospice care in China. Our study revealed that only a minority of hospice physicians have experience with palliative sedation, and they often face considerable challenges during its implementation. Furthermore, the study of relevant guidelines and participation in training programmes was significantly associated with such experience.
The practice of palliative sedation in China differs significantly from that in Western countries, such as the USA and Europe. In our survey of 449 Chinese hospice physicians, 197 (43.9%) had experience with palliative sedation. Among these, 96 (48.7%) reported experiencing stress during its administration, highlighting the challenges associated with its practice in China. In comparison, two studies from the USA reported that 85.1% and 91% of participating physicians had experience with palliative sedation.9 10 These disparities likely reflect cultural, social and systemic influences.19 In traditional Chinese culture, death is considered a taboo subject, and discussing it is often seen as disrespectful.20 Influenced by Confucian values, palliative sedation in China is primarily guided by family-centred decision-making.21 Economic inequality also limits access to palliative care, including palliative sedation.22 Furthermore, the lack of a clear definition of palliative sedation may affect how physicians report their experiences, potentially leading to inaccurate estimates.23 Our study also emphasises that the study of relevant guidelines and participation in training programmes are positively associated with physicians’ experience in palliative sedation. Therefore, combining structured training with clear guidelines may better equip clinicians to manage palliative sedation ethically, safely and effectively across diverse contexts.
Numerous studies have reported common indications for palliative sedation.1224,27 A systematic review by Maltoni et al found that delirium was the most common indication (54%), followed by dyspnoea (30%), existential distress (19%), pain (17%), vomiting (5%) and other symptoms (5%).12 However, our findings indicate that intractable pain (24%) is the most frequent indication for palliative sedation, while the incidence of delirium (17%) is lower than previously reported. This may be due to the underuse of opioids in China and the difficulty in distinguishing delirium from agitation caused by inadequate pain control.28 Furthermore, our research also identifies existential distress as an important indication for palliative sedation, in line with European Association for Palliative Care (EAPC) guidelines, which advocate its careful use to alleviate existential suffering in terminally ill patients.3 29 The implementation of palliative sedation requires a shared decision-making process involving patients, their families and caregivers.3 However, in China, family-centred decision-making, rooted in Confucian values, often outweighs individual autonomy, in contrast to the emphasis on patient autonomy and informed consent in Western countries.21 30 This cultural context is reflected in our survey, which found that while 67.5% of physicians reported involving patients in these discussions, a higher proportion of 96.4% indicated family involvement, underscoring the family’s dominant role. A systematic review by Belar et al also noted that patient involvement is often limited due to late discussions or the patients' deteriorated condition, influenced by cultural and social factors.31 Bruinsma et al also noted that while most families support palliative sedation, some experience distress due to uncertainty about honouring the patient’s wishes.32 Therefore, it is advisable to initiate discussions on palliative sedation early, despite challenges such as patients’ fear of death and healthcare providers’ communication difficulties, to better respect patients’ preferences and alleviate distress for families and healthcare providers.31
Midazolam is widely recommended as the first-line sedative for palliative sedation due to its rapid onset, short peak time and a high efficacy rate of 83%–87%.1 33 34 Our research reveals that among 197 hospice physicians experienced in palliative sedation, 49.7% prefer benzodiazepines such as midazolam, while opioids like morphine (29.45%) and dexmedetomidine (11.2%) are also commonly used. Notably, only 36.0% of physicians use opioids primarily for pain management, whereas 64.0% employ them for sedation. This suggests that some may view opioids as sedatives, indicating that they may have considered a relatively broad range of sedation as palliative sedation. However, most of the literature suggests opioids should mainly be used for pain management and not routinely for sedation.1 19 35 Studies by Lux et al and Lee et al indicate that although opioids are effective for managing pain and respiratory symptoms, increasing their dosage for sedation can lead to inadequate sedation and adverse effects such as respiratory depression and hallucinations. Therefore, their use for sedation is generally discouraged.9 19 Although not included in guidelines, recent studies suggest dexmedetomidine as a potential option for palliative sedation.36,39 Regarding sedation methods, over half of the hospice physicians in our study prefer intermittent and mild sedation. This contrasts with de Araujo et al’s findings, which showed a notable preference for continuous and deep sedation among 92 patients: 22 received mild sedation, 68 underwent deep sedation, 5 experienced intermittent sedation and 87 had continuous sedation.40 However, studies such as Gu et al’s, involving 244 palliative care patients, align more closely with our results, showing that most started with intermittent sedation and only 20 transitioned to continuous sedation.41 A recent systematic review also underscores the importance of proportionality in palliative sedation, recommending a gradual escalation from mild to deep and from intermittent to continuous as needed.26
Although palliative sedation is widely accepted in hospice and palliative care, it remains the focus of ongoing legal, clinical and ethical debate.11 Our study shows that 91.4% of hospice physicians distinguished it from euthanasia, consistent with Maiser et al’s report that 94.7% of participants recognised a clear ethical difference between the two practices.10 The primary distinctions are: palliative sedation aims to alleviate symptoms rather than end life; it is administered proportionally to the patient’s symptoms, without employing a single large dose of sedatives; and its intended outcome is reduced consciousness and symptom relief, not death.13 However, our study reveals that 2.5% of physicians perceive no difference between palliative sedation and euthanasia, 15.7% of physicians believe the purpose of palliative sedation is to hasten death, and 30.5% considered that it may shorten a patient’s lifespan. These perceptions highlight the ethical dilemmas physicians often face, which can influence the implementation of palliative sedation. Morita et al similarly found that hospice nurses often experience significant stress when administering palliative sedation, driven by fears of hastening death, ethical ambiguity, grief-related challenges and value conflicts.42 Nevertheless, most studies indicate that when properly applied, palliative sedation does not shorten the lives of terminally ill patients.2527 43,46 To reduce the stress faced by hospice staff, it is essential not only to reduce their workload but also to advocate for professional training and the development of standardised guidelines for palliative sedation, addressing critical gaps in knowledge and practice.42 47 The proposed guidelines and training will provide a comprehensive framework, covering key aspects of palliative sedation, including its definition, indications, decision-making, drug selection, selection of sedation method and patient monitoring. Special emphasis will be placed on ethical considerations, particularly the clear distinction between palliative sedation and euthanasia, to ensure the practice is conducted safely, ethically and in full compliance with established standards.
Limitations
This study had several limitations. First, the use of convenience sampling, together with the lack of a formal sample size calculation, may have introduced selection bias and limited the statistical power of the study, thereby reducing the representativeness and generalisability of the findings. Second, the research data were based on self-reports from physicians, which are susceptible to recall bias and social desirability bias. This could compromise the objectivity and accuracy of the data, thereby impacting the reliability of the study’s findings. Third, this study did not account for potential clustering of data (eg, physicians within hospitals or areas), which may affect the assumption of independence in the logistic regression analyses. Fourth, the study lacked in-depth interviews or qualitative data. Although quantitative questionnaire data were used, they may not fully capture the personal experiences and perceptions of the physicians. Fifth, we assessed only whether hospice physicians explained the objectives and risks of palliative sedation; however, detailed data on the specific objectives and risks communicated to patients and their families were not collected. Based on the limitations above, future research should focus on providing deeper and more comprehensive insights into palliative sedation.
Conclusions
Our study showcases the current state of palliative sedation in hospice care in China. The findings reveal a relative scarcity of hospice physicians experienced in palliative sedation, and many of them face significant stress during its implementation. To address these challenges, two key areas require focus. First, it is essential to enhance professional training on palliative sedation through programmes such as Flinders University’s certificate and master’s programmes, King’s College’s MSc and doctorate in palliative care, the European certifications in essential palliative care, and other resources designed to meet varying levels of expertise.48 Second, establishing guidelines for palliative sedation in China is crucial, as it will provide a foundation for its application and further standardise its use.
Supplementary material
Acknowledgements
We would like to thank all the hospice physicians who participated in the study and the coordinators for their contributions to this study. We thank the Free Statistics team for providing technical assistance and valuable tools for data analysis and visualisation.
Footnotes
Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
prepub: Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2024-090907).
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient consent for publication: Not applicable.
Ethics approval: This study involves human participants and received approval from the Institutional Review Board of Beijing Tsinghua Changgung Hospital (No. 23224-4-01). Written informed consent was waived due to the anonymous nature of the data collection process. Participants’ submission of the survey questionnaire was considered as their informed consent.
Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Data availability statement
Data are available on reasonable request.
References
- 1.Cherny NI, Esmo GWG. ESMO Clinical Practice Guidelines for the management of refractory symptoms at the end of life and the use of palliative sedation. Ann Oncol. 2014;25 Suppl 3:iii143–52. doi: 10.1093/annonc/mdu238. [DOI] [PubMed] [Google Scholar]
- 2.Imai K, Morita T, Akechi T, et al. The Principles of Revised Clinical Guidelines about Palliative Sedation Therapy of the Japanese Society for Palliative Medicine. J Palliat Med. 2020;23:1184–90. doi: 10.1089/jpm.2019.0626. [DOI] [PubMed] [Google Scholar]
- 3.Surges SM, Brunsch H, Jaspers B, et al. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study. Palliat Med. 2024;38:213–28. doi: 10.1177/02692163231220225. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Kirk TW, Mahon MM, Palliative STF. National Hospice and Palliative Care Organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. J Pain Symptom Manage. 2010;39:914–23. doi: 10.1016/j.jpainsymman.2010.01.009. [DOI] [PubMed] [Google Scholar]
- 5.Verkerk M, van Wijlick E, Legemaate J, et al. A national guideline for palliative sedation in the Netherlands. J Pain Symptom Manage. 2007;34:666–70. doi: 10.1016/j.jpainsymman.2007.01.005. [DOI] [PubMed] [Google Scholar]
- 6.Dean MM, Cellarius V, Henry B, et al. Framework for continuous palliative sedation therapy in Canada. J Palliat Med. 2012;15:870–9. doi: 10.1089/jpm.2011.0498. [DOI] [PubMed] [Google Scholar]
- 7.Garetto F, Cancelli F, Rossi R, et al. Palliative Sedation for the Terminally Ill Patient. CNS Drugs. 2018;32:951–61. doi: 10.1007/s40263-018-0576-7. [DOI] [PubMed] [Google Scholar]
- 8.Morita T, Akechi T, Sugawara Y, et al. Practices and attitudes of Japanese oncologists and palliative care physicians concerning terminal sedation: a nationwide survey. J Clin Oncol. 2002;20:758–64. doi: 10.1200/JCO.2002.20.3.758. [DOI] [PubMed] [Google Scholar]
- 9.Lux MR, Protus BM, Kimbrel J, et al. A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices. Am J Hosp Palliat Care. 2017;34:217–22. doi: 10.1177/1049909115615128. [DOI] [PubMed] [Google Scholar]
- 10.Maiser S, Estrada-Stephen K, Sahr N, et al. A Survey of Hospice and Palliative Care Clinicians’ Experiences and Attitudes Regarding the Use of Palliative Sedation. J Palliat Med. 2017;20:915–21. doi: 10.1089/jpm.2016.0464. [DOI] [PubMed] [Google Scholar]
- 11.Miccinesi G, Caraceni A, Maltoni M. Palliative sedation: ethical aspects. Minerva Anestesiol. 2017;83:1317–23. doi: 10.23736/S0375-9393.17.12091-2. [DOI] [PubMed] [Google Scholar]
- 12.Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol. 2012;30:1378–83. doi: 10.1200/JCO.2011.37.3795. [DOI] [PubMed] [Google Scholar]
- 13.Materstvedt LJ. Distinction between euthanasia and palliative sedation is clear-cut. J Med Ethics. 2020;46:55–6. doi: 10.1136/medethics-2019-105457. [DOI] [PubMed] [Google Scholar]
- 14.Benítez-Rosario MA, Ascanio-León B. Palliative sedation: beliefs and decision-making among Spanish palliative care physicians. Support Care Cancer. 2020;28:2651–8. doi: 10.1007/s00520-019-05086-4. [DOI] [PubMed] [Google Scholar]
- 15.Rietjens JAC, Heijltjes MT, van Delden JJM, et al. The Rising Frequency of Continuous Deep Sedation in the Netherlands, a Repeated Cross-Sectional Survey in 2005, 2010, and 2015. J Am Med Dir Assoc. 2019;20:1367–72. doi: 10.1016/j.jamda.2019.06.012. [DOI] [PubMed] [Google Scholar]
- 16.Ning XH. Hospice and palliative care research in mainland China: Current status and future direction. Palliat Med. 2019;33:1127–8. doi: 10.1177/0269216319857495. [DOI] [PubMed] [Google Scholar]
- 17.Lu Y, Gu Y, Yu W. Hospice and Palliative Care in China: Development and Challenges. Asia Pac J Oncol Nurs. 2018;5:26–32. doi: 10.4103/apjon.apjon_72_17. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Yin Z, Li J, Ma K, et al. Development of Palliative Care in China: A Tale of Three Cities. Oncologist. 2017;22:1362–7. doi: 10.1634/theoncologist.2017-0128. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Lee SH, Kwon JH, Won Y-W, et al. Palliative Sedation in End-of-Life Patients in Eastern Asia: A Narrative Review. Cancer Res Treat. 2022;54:644–50. doi: 10.4143/crt.2022.187. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Tin WW-Y, Lo S-H, Wong FC-S. A retrospective review for the use of palliative sedation in a regional hospital in Hong Kong. Ann Palliat Med. 2020;9:4502–13. doi: 10.21037/apm.2019.09.05. [DOI] [PubMed] [Google Scholar]
- 21.Jeon ED, Jing J. A study of end-of-life care communication and decision-making in China by exploring filial piety and medical information concealment. Asian Journal of Medical Humanities. 2023;2 doi: 10.1515/ajmedh-2023-0006. [DOI] [Google Scholar]
- 22.Leng A, Jing J, Nicholas S, et al. Geographical disparities in treatment and health care costs for end-of-life cancer patients in China: a retrospective study. BMC Cancer. 2019;19:39. doi: 10.1186/s12885-018-5237-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Kremling A, Schildmann J. What do you mean by “palliative sedation”?: Pre-explicative analyses as preliminary steps towards better definitions. BMC Palliat Care. 2020;19:147. doi: 10.1186/s12904-020-00635-9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Maltoni M, Miccinesi G, Morino P, et al. Prospective observational Italian study on palliative sedation in two hospice settings: differences in casemixes and clinical care. Support Care Cancer. 2012;20:2829–36. doi: 10.1007/s00520-012-1407-x. [DOI] [PubMed] [Google Scholar]
- 25.Won Y-W, Chun HS, Seo M, et al. Clinical Patterns of Continuous and Intermittent Palliative Sedation in Patients With Terminal Cancer: A Descriptive, Observational Study. J Pain Symptom Manage. 2019;58:65–71. doi: 10.1016/j.jpainsymman.2019.04.019. [DOI] [PubMed] [Google Scholar]
- 26.Arantzamendi M, Belar A, Payne S, et al. Clinical Aspects of Palliative Sedation in Prospective Studies. A Systematic Review. J Pain Symptom Manage. 2021;61:831–44. doi: 10.1016/j.jpainsymman.2020.09.022. [DOI] [PubMed] [Google Scholar]
- 27.Tan F, Chen S, Huang L, et al. Continuous palliative sedation in terminally ill patients with cancer: a retrospective observational cohort study from a Chinese palliative care unit. BMJ Open. 2023;13:e071859. :e071859. doi: 10.1136/bmjopen-2023-071859. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018;391:1391–454. doi: 10.1016/S0140-6736(17)32513-8. [DOI] [PubMed] [Google Scholar]
- 29.Cherny NI, Radbruch L, Board EAPC. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009;23:581–93. doi: 10.1177/0269216309107024. [DOI] [PubMed] [Google Scholar]
- 30.Pun J, Chow JCH, Fok L, et al. Role of patients’ family members in end-of-life communication: an integrative review. BMJ Open. 2023;13:e067304. :e067304. doi: 10.1136/bmjopen-2022-067304. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Belar A, Arantzamendi M, Menten J, et al. The Decision-Making Process for Palliative Sedation for Patients with Advanced Cancer-Analysis from a Systematic Review of Prospective Studies. Cancers (Basel) 2022;14:301. doi: 10.3390/cancers14020301. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Bruinsma SM, Rietjens JAC, Seymour JE, et al. The experiences of relatives with the practice of palliative sedation: a systematic review. J Pain Symptom Manage. 2012;44:431–45. doi: 10.1016/j.jpainsymman.2011.09.006. [DOI] [PubMed] [Google Scholar]
- 33.Beller EM, van Driel ML, McGregor L, et al. Palliative pharmacological sedation for terminally ill adults. Cochrane Database Syst Rev. 2015;1:CD010206. doi: 10.1002/14651858.CD010206.pub2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Bodnar J. A Review of Agents for Palliative Sedation/Continuous Deep Sedation: Pharmacology and Practical Applications. J Pain Palliat Care Pharmacother. 2017;31:16–37. doi: 10.1080/15360288.2017.1279502. [DOI] [PubMed] [Google Scholar]
- 35.Reuzel RPB, Hasselaar GJ, Vissers KCP, et al. Inappropriateness of using opioids for end-stage palliative sedation: a Dutch study. Palliat Med. 2008;22:641–6. doi: 10.1177/0269216308091867. [DOI] [PubMed] [Google Scholar]
- 36.Burns J, Jackson K, Sheehy KA, et al. The Use of Dexmedetomidine in Pediatric Palliative Care: A Preliminary Study. J Palliat Med. 2017;20:779–83. doi: 10.1089/jpm.2016.0419. [DOI] [PubMed] [Google Scholar]
- 37.Gaertner J, Fusi-Schmidhauser T. Dexmedetomidine: a magic bullet on its way into palliative care-a narrative review and practice recommendations. Ann Palliat Med. 2022;11:1491–504. doi: 10.21037/apm-21-1989. [DOI] [PubMed] [Google Scholar]
- 38.Li N, Cui M, Wang Y. Effect of Dexmedetomidine for Palliative Sedation for Refractory Dyspnoea in Patients with Terminal-Stage Cancer. Cancer Manag Res. 2023;15:291–9. doi: 10.2147/CMAR.S404934. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Thomas B, Lo W-SA, Nangati Z, et al. Dexmedetomidine for hyperactive delirium at the end of life: An open-label single arm pilot study with dose escalation in adult patients admitted to an inpatient palliative care unit. Palliat Med. 2021;35:729–37. doi: 10.1177/0269216321994440. [DOI] [PubMed] [Google Scholar]
- 40.de Araujo CZS, de Araújo LZS, Nassar Junior AP. Palliative sedation in patients with advanced cancer in a specialized unit in a middle-income country: A retrospective cohort study. Palliat Support Care. 2022;20:491–5. doi: 10.1017/S1478951521001371. [DOI] [PubMed] [Google Scholar]
- 41.Gu X, Cheng W, Chen M, et al. Palliative sedation for terminally ill cancer patients in a tertiary cancer center in Shanghai, China. BMC Palliat Care. 2015;14:5. doi: 10.1186/s12904-015-0002-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Morita T, Miyashita M, Kimura R, et al. Emotional burden of nurses in palliative sedation therapy. Palliat Med. 2004;18:550–7. doi: 10.1191/0269216304pm911oa. [DOI] [PubMed] [Google Scholar]
- 43.Maltoni M, Pittureri C, Scarpi E, et al. Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Ann Oncol. 2009;20:1163–9. doi: 10.1093/annonc/mdp048. [DOI] [PubMed] [Google Scholar]
- 44.Maeda I, Morita T, Yamaguchi T, et al. Effect of continuous deep sedation on survival in patients with advanced cancer (J-Proval): a propensity score-weighted analysis of a prospective cohort study. Lancet Oncol. 2016;17:115–22. doi: 10.1016/S1470-2045(15)00401-5. [DOI] [PubMed] [Google Scholar]
- 45.Prado BL, Gomes DBD, Usón Júnior PLS, et al. Continuous palliative sedation for patients with advanced cancer at a tertiary care cancer center. BMC Palliat Care. 2018;17:13. doi: 10.1186/s12904-017-0264-2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 46.Yokomichi N, Yamaguchi T, Maeda I, et al. Effect of continuous deep sedation on survival in the last days of life of cancer patients: A multicenter prospective cohort study. Palliat Med. 2022;36:189–99. doi: 10.1177/02692163211057754. [DOI] [PubMed] [Google Scholar]
- 47.Klosa PR, Klein C, Heckel M, et al. The EAPC framework on palliative sedation and clinical practice--a questionnaire-based survey in Germany. Support Care Cancer. 2014;22:2621–8. doi: 10.1007/s00520-014-2192-5. [DOI] [PubMed] [Google Scholar]
- 48.International association for hospice & palliative care. 2024. [03-Dec-2024]. https://iahpc.org/ Available. Accessed.