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Chinese perspective on end-of-life communication: a systematic review
  1. Jack K H Pun1,
  2. Ka Man Cheung2,
  3. James C H Chow2 and
  4. Wing Lok Chan3
  1. 1Department of English, City University of Hong Kong, Kowloon, Hong Kong
  2. 2Department of Clinical Oncology, Queen Elizabeth Hospital, Hong Kong, Hong Kong
  3. 3Department of Clinical Oncology, University of Hong Kong, Hong Kong, Hong Kong
  1. Correspondence to Dr Jack K H Pun, Department of English, City University of Hong Kong, Kowloon, Hong Kong; jack.pun{at}cityu.edu.hk

Abstract

Background Palliative care providers serving Chinese patients lack a culture-specific model of communication, a strong evidence base for this and clear guidance on its application. Thus, providers find it challenging to address patients’ dignity, and determine their priorities and preferences for treatments and care, at the patients’ final stage of life.

Aim This study explores the culture-specific influences and current understanding of end-of-life (EOL) communication in the Chinese context.

Methods A qualitative systematic review of qualitative studies was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycINFO, PubMed and ERIC databases were searched for studies between January 1994 and July 2019, using keywords ‘end of life’, ‘terminal care’, ‘communication’ and ‘Chinese’. Included studies were appraised with Critical Appraisal Skills Programme criteria.

Results The search strategy yielded 982 entries and 13 studies were included. Six themes were identified in EOL communication in the Chinese context: (1) Chinese philosophies on the meaning of ‘good death’. (2) Negative attitudes towards communication on dying. (3) EOL communication as a taboo topic. (4) Clinician-centred approaches to treatment-decision making. (5) Family expectations being prioritised over patient self-autonomy in prognosis disclosure. (6) Care-providers expressing puzzlement over cultural preferences regarding EOL communication.

Conclusions The review detailed the complexity of EOL communication in the Chinese context, urging for a communication model distinct from Western-based practices. Future research could explore a validated communication framework that addresses the local culture, thus enabling an understanding of patients’ priorities and interpreting EOL encounters from a cross-cultural perspective.

  • end of life care
  • cancer
  • communication
  • terminal care

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Introduction

An end-of-life (EOL) communication between dying patients and their clinicians can provide an opportunity to discuss the expectations of treatment and the issues the patients face. Such conversations can have tremendous benefits for patients and their caregivers.1 Studies show that patients who had actively engaged in EOL conversation received less aggressive medical care and experienced a better quality of life near death, and their bereaved caregivers were less likely to suffer from major depressive episodes.2 In addition, promoting communication between patients and their clinicians often results in a better treatment outcome with less expensive medical care, due to the development of a mutual understanding of budgets and expectations.3

However, it has always been difficult for healthcare providers to initiate EOL conversations with their patients because many providers cannot, or have not attempted to, imagine themselves in their patients’ situation when thinking of the details of the unsettling bad news.4 It is understandable that clinicians would like to appear to be more humanistic in EOL communication, but they also need to realise that patients expect a balance between factual and psychological help as part of satisfactory care.5 Specifically, addressing emotional responses and validating patients’ feelings are a necessary complement to clinical treatment, to prevent patients experiencing a sense of abandonment.6 To address this gap in meeting both medical and interpersonal needs in delivery, researchers have developed protocols and strategies to aid clinicians in breaking news to patients. With reference to Villagran et al,7 the ‘COMFORT’ (Communication, Orientation, Mindfulness, Family, Ongoing, Reiterative messages, and Team) model is a set of principles designed to provide a step-by-step guide on how to break bad news while providing comfort and remaining humane in such interactions. Another six-step protocol, ‘SPIKES’ (Setting, Perception, Invitation, Knowledge, Empathetic Response, Summary), helps doctors prepare properly for breaking bad news to their clients.8

However, these communication models have been mainly validated in English-speaking contexts, and are not applicable to the EOL communication needs of patients from different cultural backgrounds. In the Chinese context, there are substantial differences in beliefs and practices relating to EOL care compared with those of the West. Chinese philosophies usually result in health providers being hesitant to disclose a prognosis to dying patients, because death is a taboo subject. Several studies show that these prevailing cultural influences have led to a lack of recognition of the need for effective communication about serious terminal illness in the Chinese context. Chinese clinicians, particularly oncologists, and palliative care providers cannot simply apply the West-based model to communicate with patients in the EOL context. There is a thus a need for the development of a culturally appropriate framework for EOL that recognises the importance of the Chinese context.

This integrated review responds to this need by reviewing the literature exploring EOL communication between oncologists, palliative care providers and patients in various Chinese contexts, summarising the findings and highlighting culturally specific influences. It is aimed to answer the following research question: Within the published literature, what are the major themes in EOL communication in Chinese contexts?

Methods

Search strategy

PsycINFO, PubMed and ERIC databases were searched in the initial screening process to identify relevant studies using the following search terms: ‘end of life’, ‘terminal care’, ‘communication’ and ‘Chinese’. In addition, a manual search was made of relevant journals, and the bibliographies of relevant articles and reviews were also cross-checked for potential eligible studies. Studies that met the inclusion criteria were included for further review and duplicate articles were removed.

Inclusion and exclusion criteria

In preliminary observations, the researchers noticed that the number of papers on topics related to EOL had dramatically increased since 1994. Thus, an initial search was carried out to identify relevant articles on EOL communication that were published between January 1994 and July 2019. Studies were included if they were peer-reviewed and concerned EOL communication in a Chinese context. Studies were excluded for the following reasons: (1) Having a focus on topics that were unrelated to EOL communication (eg, religious studies of EOL care). (2) Not being original research based on empirical findings (eg, literature reviews, opinion pieces). (3) Being non-English language articles. (4) Being non-peer reviewed studies.

Data collection

First, two authors (JKHP and KMC) independently screened the titles and abstracts and excluded irrelevant entries. Second, full texts were retrieved if the abstracts were considered potentially relevant and these were reviewed independently according to the inclusion and exclusion criteria. Based on the information in the full texts, we performed in-depth data extraction. The objectives, research design, participant characteristics, study design, method(s) and key findings were examined, and the findings were recorded in template form, categorised and appraised for quality. Disagreements were resolved by discussion and consensus among all authors.

Quality assessment

The quality of the included studies was evaluated separately by JKHP and KMC. Disagreements were resolved through discussions among all authors. The Critical Appraisal Skills Programme,9 a series of standardised checklists that have been validated and are commonly adopted by researchers in the field of health communication, was used to evaluate the quality of the selected articles.10

Results

Characteristics and quality of the included studies

The search yielded 982 results (figure 1). Eleven duplicate results were excluded. A further 920 records were excluded because of irrelevance or otherwise failing to meet the inclusion criteria. The remaining 51 records were accessed as full-text articles and study protocols. A further 38 of these were excluded because they were not related to communication, were not relevant to our research question, were secondary analyses of documents or comprised non-Chinese patient groups. The remaining 13 studies were included in the review; 11 of these were classified as high quality and 2 were classified as moderate quality. No studies were classified as poor quality.

Figure 1

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram (adapted from Moher et al).50 EOL, end-of-life.

Box 1 shows the main characteristics of the 13 included studies, with a summary of the main findings. These findings were extracted and categorised into six themes:

Box 1

The characteristics of the studies included in this systematic review

  • Chinese philosophies on the meaning of ‘good death’.

  • Negative attitudes towards communication on dying.

  • End-of-life (EOL) communication as a taboo topic.

  • Clinician-centred approaches to decision making.

  • Family expectations being prioritised over patient self-autonomy in prognosis disclosure.

  • Care providers expressing puzzlement over the cultural preference of EOL communication.

Theme 1: Chinese philosophies on the meaning of ‘good death’

Chinese culture has had its own particular perspective on dying and death for the past four millennia, due to the profound influences of different Chinese philosophies,11–14 and this perspective is distinct from that of the Western world. The notion of ‘good death’ has been influenced by Confucianism, Daoism and Buddhism.15 The meaning of good death espoused by these philosophies in the Chinese context may have direct implications for medical practice, especially the style of EOL communication for terminally ill patients and bereaved families. In a Hong Kong study, Mak16 summarised the following seven elements of good death: (1) Being aware of dying. (2) Maintaining hope. (3) Being free from pain and suffering. (4) Experiencing personal control. (5) Maintaining social relationships. (6) Preparing to depart. (7) Accepting the timing of one’s death.

These seven elements suggest that accepting death in Chinese culture is a decision driven by one’s social role in a family, rather than being a personal choice, that is, dying is a family-driven decision. Hsu et al’s12 study showed that good death is not determined by one’s physical age but one’s accomplishment of familial responsibility. The significant finding from their study is that old age indirectly predicts good death, because an older person would be more likely to have fulfilled their family roles and to accept when they could do no more. In a similar study in Hong Kong, Chan17 interviewed 15 bereaved Chinese elderly women aged 66–86 years, whose husbands had died 8.5–62 months prior. The elements of good death that the interviewees had wished for their deceased husbands were similar to those found in previous studies, such as minimal suffering before death, presence of family members at the moment of death, good family relationship, natural death and to not be a burden to others.

Theme 2: Negative attitudes towards communication on dying

Even in the 21st century, Chinese people continue to have negative attitudes towards EOL communication.14 18 When planning at EOL, many Chinese patients are deeply influenced by their Chinese philosophies and feel that advance-care planning disturbs their emotional balance by placing emphasis on negative thoughts.19 Most Chinese people, including health professionals, are reluctant to discuss death for fear of invoking bad luck.13 20 Some Chinese elderly people maintain the superstition that talking about death is itself bad luck that will ‘invite’ death to come sooner.21 22 These cultural taboos make it difficult for physicians or family members to initiate the discussion, as elderly people are often highly sensitive to topics related to death.

Most patients and their families in China do not want to be told about a terminal diagnosis.23 As a result, most patients with cancer are prevented from being informed about their deteriorating health condition, even when they are at the terminal stage. This poses a difficulty on information disclosure to Chinese patients with cancer; and hence it has been reported to be the most difficult part of communication for health professionals, even for nurses who are in frequent contact with dying patients.24

Patients with more thorough understanding towards their condition, a higher level of education or more Western acculturation are more likely to be open to the idea of preparing their EOL matters. Ko and Lee’s25 study found that participants with greater knowledge about advance-care planning are more likely to engage in EOL communication. Many other studies have discovered that Chinese patients with a higher degree of Western acculturation are usually more open-minded to communicating with their physicians on EOL topics.23 26

Theme 3: EOL communication as a taboo topic

Chinese traditional culture has often deemed talking about death as a cultural taboo.22 27–29 Elderly people have often refused to issue advance directives because they believed a discussion surrounding death would bring them a step closer to death itself. Without an actual illness, advance-care planning does seem to be abstract, as it creates a hypothetical scenario. However, many older patients would apparently consider advance healthcare directives if they were facing a serious illness, such as disclosure of terminal diagnosis and prognosis.20 30 Healthcare providers can monitor the capability and willingness of patients to decide the best time to initiate an advance-care planning conversation with the patients and their family members.

A majority of studies have shown that an indirect approach to EOL communication is highly preferred by Chinese people. Indirect communication includes non-verbal cues and body language, and many consider it a gentle way to determine if patients are willing to discuss EOL and to initiate the conversation.20 22 31 Indirect communication can diminish the pressure of face-to-face, verbal communication, and it also gives patients a chance to decline the discussion non-verbally. Physicians can also use other people’s EOL care experiences as an example and frame the discussion as a standard question, required by policy, to depersonalise the discussion.27

Theme 4: Clinician-centred approach to treatment decision making

In Chinese culture, medicine is a highly respected profession. Patients rely heavily on doctors for information and details regarding their diagnosis. Patients expect their physicians to provide a full picture of their diagnosis, as well as any additional details that can assist them in managing and making decisions regarding their EOL treatment plans.4 It is important for doctors to explain available options complemented with appropriate amount of scientific information to furnish their patients with an all-round picture of their medical condition and prognosis, guide them through the process of decision making and assist them in making a satisfactory decision.27

There is often a power differential between patients and physicians, as suggested in Wang’s32 research. In a majority of Chinese contexts, especially Mainland China, doctors play the authoritative role and patients are more passive. Traditionally, patients are expected to speak less and listen more without asking a lot of questions, as that may seem to be challenging the doctor’s authority. Nonetheless, the roles and status of clinicians and patients have continually changed over the years, and are nowadays more balanced than ever. Both parties have to rely on each other to engage in an open conversation.

However, EOL communication is a taboo in Chinese cultures and elderly people are often uncomfortable bringing up the topic. Moreover, those who do tend to generally rather than explicitly express their preferences for specific types of life-sustaining treatment.33 Moreover, EOL discussions generally occur with family members rather than healthcare professionals.27 32 33 In the EOL care of Chinese patients, communication with close family members is essential to ensure a full understanding of patients’ wishes and preferences.

Theme 5: Family expectations being prioritised over patient self-autonomy in prognosis disclosure

Another very prominent attitude of the Chinese perspective towards EOL communication is the interdependence among family members.34 Although most people believe that dying patients should know their diagnosis and the stage of their condition, many Chinese families strongly resist attempts by doctors to inform their elderly relatives of these facts.14 18 As Chinese culture values collectivism, which differs from the individualism practised in the West, patients generally prefer making a joint decision with their family members. In China, many elderly patients believe their children have a strong understanding of their preferences and depend on their family members to make treatment plans, as well as EOL decisions, on their behalf.4 20 27

In Chinese EOL care, nurses are more concerned with dying patients’ physical comfort and wish fulfilment, while doctors place greatest emphasis on patients’ rights and symptom management.15 The fact is, the voice of the patient wanting to know more about his own condition is frequently being neglected in the strong predilection of family oriented culture. Tang et al found substantial discrepancies between terminally ill patients and their family caregivers in Taiwan in terms of the extent to which they were informed about the patients’ diagnosis and prognosis.35 Their data show a contradiction of the expectations of terminally ill patients, who, despite the family oriented Chinese culture, strongly proclaim their superior right to be informed over their family. This suggests that doctors need to respect patients’ preferences rather than routinely prioritising the family’s opinions in the event of disagreement.

Theme 6: Care providers expressing puzzlement over the cultural preference of EOL communication

Communicating with patients and their family members in EOL care can be stressful and technically demanding for healthcare professionals. Chinese healthcare professionals take a passive approach in disclosure of prognoses. As discussed above, the cultural preference for avoiding disclosure of unfavourable information plays a major role in this process, as evidenced by a survey of palliative care providers in China.15 These respondents revealed that they were asked by patients’ family members not to disclose the health condition to the patient. This prevented effective communication between patients and healthcare professionals, hampered provision of emotional support and caused moral distress and frustration to staff.

Taking care of patients’ negative emotions was described as the most difficult aspect in both surveys.14 Even nurses working in a palliative care unit expressed having inadequate knowledge of the psychological needs of dying patients, and a critical need to learn about the psycho-social changes that a patient may face in their EOL phase.15 A high demand for communication training was highlighted in another survey of Chinese nurses from various units, who ranked ‘communication with dying patients’ second in their learning priorities for EOL education, two rankings higher than ‘physical care of dying patients’.12 These nurses reported that while they learnt to better cherish what they had and the love around them, their everyday experience made them question the meaning of life.

Discussion

This review identified a lack of empirical research on how physicians undertake EOL discussions with Chinese patients. A general tendency of being reluctant to discuss EOL decisions, and instead leaving family members to be decision makers, was discovered among the studies included in this review.13 29 This reflects the traditional values of Chinese culture, which views death as a taboo and emphasises collectivism.13 21 31 For example, much of the stigma surrounding EOL communication can be traced to Chinese philosophies like Confucianism, Buddhism and Daoism, which suggest that negative thinking can affect emotional balance. Many from older generations also believe that talking about death will only bring it closer, and thus avoid having conversations about EOL and delay making decisions vis-à-vis palliative care. However, the included studies also show increasing evidence that many of these elderly patients would accept advance-care planning if they were able to have a proper EOL conversation with their clinician and family members at the stage of diagnosis of terminal illness, or when close to death.25 In several papers, educational interventions such as knowledge and acculturation on advance-care planning were found to encourage dying patients to actively participate in EOL communication with their oncologists and palliative team.22 25 26 28

Second, a significant trend that emerged from the included studies is the important role of family in EOL communication. As Chinese society puts great emphasis on collectivism and the idea of filial piety, adult children are expected to be those who make the final medical decisions on parents’ treatment.20 21 26 33 Clinicians tend to consult family members before talking to their elderly patients, and joint EOL decisions are made between doctors and the patient’s family.32 In contrast, research has shown that non-Chinese patients wish to be treated as equals with their clinicians and be actively involved in final treatment decisions.36 37 Individualism is more emphasised in Western culture: despite having respect for their family members, dying Western patients do not wish to have their EOL decisions solely made by their family, without a discussion.

Although there is a substantial difference in the cultural values between the East and the West, due to the unique Chinese outlook, the way clinicians undertake EOL communication in a Western context is surprisingly similar to the practices in the Chinese context.21 32 That is, clinicians mainly rely on social cues to judge the best time to carry out EOL communication with their patients36 38 Tone of voice, manner, attitude and other forms of non-verbal communication are essential signals as to whether patients are ready for an EOL conversation.36 In addition, the findings of the included studies suggest that a patient-centred approach is highly recommended in the context of EOL communication in both Chinese and Western contexts.2 39 The three main attributes of a patient-centred care approach include (1) Attention to patients’ needs, personal experiences and perspectives.2 (2) Patients’ participation in their own healing process. (3) An enhanced doctor-patient relationship.2 As patient-centred communication enables better and more holistic care in the palliative context, it is very much preferred by both patients and clinicians.4 21 39

Although all possible studies that have reported Chinese perspectives on EOL communication were identified, there is still a lack of empirical research on EOL communication that is culturally specific to the Chinese context. As an initial approach to EOL conversations, practices such as using social cues and non-verbal communication can aid effective communication with people from any cultural background, including the Chinese.21 Although such approaches are applicable to both Chinese and non-Chinese patients, physicians have little idea of how to embark on an EOL conversation from a Chinese perspective in a manner that shows care and empathy. Clinicians should thus equip themselves with suitable training and learning materials to rehearse the routines of bad news delivery, such as preparing the patient for diagnosis disclosure and involving their family members if this is a patient’s wish.14 34 Patients’ perspectives should be taken into account in EOL communication to build a trusting and sustainable relationship between the clinician and patient during the EOL journey.

Indeed, several of the included studies suggest that training is the best way for clinicians to improve their EOL communication skills.4 37 Virtual reality simulators, simulated diagnosis-disclosure practices and standardised patient instructors are all effective in preparing clinicians for delivering bad news.37 40 A validated communications framework that addresses the local culture in understanding patients’ priorities and interpreting EOL encounters from a cross-cultural perspective should be developed, focused on aspects such as non-verbal language features and strategies for communicating bad news to EOL patients.

Non-verbal language features for EOL communication

Some physicians rely on social cues to judge the best time to carry out an EOL discussion with their patients. These social cues include a bond with the patient and family, signs of patient readiness and comments about quality of life.36 Non-verbal communication can alter the meaning of a statement. Sutherland38 even states that these non-verbal cues may be far more important than the verbal content. It is believed that most patients prefer to receive bad news at a comfortable and unhurried pace, in a setting where both parties can use non-verbal cues to gauge the conversation flow of the EOL discussion.41

Metaphors are also commonly used to help clarify complex issues and depth of meaning. Delivery of bad news also has its own specific prosodic features, which are often the exact opposite of that of good news. For example, the pitch level when delivering or accepting bad news is low, the pitch range is narrow, and the speech rate slows as utterance progresses.42 Barton’s43 research reveals fundamental differences in the discourse of front stage and backstage prognosis, which were found to be directly opposite to one another. These conversations were almost exclusively initiated by the clinicians and they often used direct language, as well as analogies. One surprising finding in Gillotti et al’s44 study on communicative competence is that non-medical small talk takes up a majority of time during medical consultations. Small talk can help alleviate the stressful clinical environment by highlighting that there is still a lot more going on in the patient’s life that is worth focusing on, instead of just attending to the disease.

Strategies for communicating bad news

One of the most active research areas is the development of communication strategies for delivering bad news in the EOL context. Patient-centred communication has become the preferred method for clinicians and healthcare professionals to provide quality palliative care. Meanwhile, contrary to patient-centred communication, provider-oriented goals can also shape what clinicians say and give insights into the ideal outcome of the interaction. Although this latter style is not highly prioritised in EOL conversations, it can nevertheless be incorporated into healthcare plans to help achieve the outcomes that clinicians desire for their patients.45

One study found that when communicating upsetting news, physicians often do not have a specific goal, or think of how the news will influence the receiver or consider whether anyone should accompany the patient as they receive the bad news.46 Clinicians also often face communication barriers when conveying information related to the disease.

These obstacles often impair the progress of the consultation, and it is important to define and explore these barriers to overcome them.6 However, a formulaic approach is less likely to lead to satisfaction for patients. Deliverers of bad news must also consider the patient’s perspective, the context of the discussion and the content of the conversation, and adjust accordingly.39

Cultural competence and family influence can also greatly affect the discussion of EOL topics with patients. Clinicians have to take patients’ perspectives into account, as well as pay close attention to and respect cultural issues, to build a trusting and collaborative relationship with their patients.47 Approval and support from family can provide reassurance that the patients’ value is respected, as well as stabilise and strengthen their familial relationships.48

Training on delivering bad news

Many earlier studies found that it is critical to provide training for physicians before they start practising to prepare them for the inevitable conversations on EOL matters. Medical schools should use the most recent technology to simulate the situation for medical students. According to Barrios et al40 virtual reality simulators have been used extensively in academia for testing and training. The use of simulated disclosure practices can benefit and better prepare students for their future practice. Moreover, Rosenbaum and Kreiter49 suggested combining experiential sessions with standardised patients or actors to educate future clinicians on how to deliver bad news. The diverse scenarios used in training can reinforce the basic skills they need, while exposing them to the different ways that clinicians can respond to patients and their families.

Strengths and limitations of the review

This study comprises a synthesis of research on EOL communication in terms of the cultural characteristics of the Chinese context, focused on identifying the social factors that may influence patients’ EOL communication with medical practitioners. It is intended to provide a theoretical basis for conducting EOL communication and developing culturally appropriate training models for local medical practitioners. The findings may shed light on how clinicians in the Chinese context approach EOL communication, given the culturally specific communication style of prognosis disclosure. However, because studies written in Chinese were not included, the selected research was not able to cover all aspects of EOL communication, which may have affected the generalisability of the findings. In addition, no information specialist (eg, librarian) was involved in the literature search. For a more systematic understanding, a review of further studies relevant to Chinese EOL communication should be undertaken.

Conclusion

An integration of Chinese philosophies and religions forms the basis of China’s distinctive culture and traditions. Although Chinese thinking accepts that death is a natural part of the life cycle, unique attitudes to death and dying have emerged among the Chinese, under the influence of these ancient belief systems. Traditional definitions of good death highlight both a cultural and a familial dimension to the Chinese construct of dignity in EOL communication, underlining the paramount importance of cultural awareness and competence. From this perspective of understanding, the findings of this study highlight the need for a culturally sensitive and family oriented approach to EOL communication interventions with older terminally ill Chinese patients, to better address the distinct Chinese conceptions of death and dying.

References

Footnotes

  • Contributors JKHP contributed to the conception and design of the study. KMC and CHJC revised the study protocol. JKHP, KMC and CHJC contributed to the acquisition and analysis of data. WLC and JKHP evaluated the risk of bias of the included studies. JKHP and KMC interpreted the data. JKHP and KMC drafted the manuscript. All the authors critically revised the manuscript and gave the final approval of the version to be published.

  • 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.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.