Light in the darkness – accessibility to palliative care for cancer patients of Chinese background and their families

Demographic data

In total, 136 valid questionnaires were received from 154 Cancer Health seminar attendees at a CanRevive centre (response rate 88%). Over three-quarters were female. More than half were >65 years old. A total of 80.9% of respondents were born in Mainland China, followed by Hong Kong and Macau (32.4%). Furthermore, 21% received a higher education with a Bachelor’s degree or above. Christianity was the most common religion, followed by Buddhism, and Catholicism. Most participants were patients; 104 had recent experiences with cancer (being hospitalised as a patient, having a family member hospitalised, or experiencing the death of a family member/friend); six had multiple experiences, eg family members staying in hospitals and experienced a death of a family member/friend in the past 5 years. Other situations experienced by the respondents were receiving operation/treatment without hospitalisation (n = 18, 13.2%) and hospitalisation >5 years ago (n = 2, 1.5%).

Two men and six women, including patients, caregivers, and previous caregivers, were interviewed, three in Mandarin and five in Cantonese. Two caregivers were second-generation immigrants growing up in Australia, while six moved here as adults. Three participants (two patients and one previous caregiver) had poor English proficiency.

Knowledge of palliative care

In the survey study, over one-quarter of the participants had never heard of palliative care (Table 2). The others seemed unsure about its meaning. Notably, 83.1% of the participants were interested in knowing more about palliative care (Table 2). There were significant differences among patients, caregivers, and previous caregivers in their awareness of palliative care (X² = 11.3 P = 0.02), with awareness highest in previous caregivers (95.5%) and the lowest in patients (66.3%). One patient stated in the survey ‘I am worried that receiving palliative care is a label of dying; fear of death’.

Regarding the referral timing, there was no significant difference between patients, caregivers, and previous caregivers (X² = 12, P = 0.74, Table 3). Among three participants choosing ‘Other’ in the survey, two previous caregivers stated in the free text section that ‘the patient should be referred to palliative care when the general treatments have no therapeutic effect, or the patient is very near the end of lifetime’, or ‘When the patient’s family is unable to help the patient’. One patient wrote, ‘According to my situation in the future’.

Interviewed participants also had low awareness/understanding of palliative care. One participant was unaware they were receiving palliative care at the time of the interview. Another was unclear about its meaning and scope, often confusing it with just hospice or end-of-life care and associating it solely with pain management. Due to the misunderstandings, many tended to avoid palliative care, with a belief that palliative care signals imminent death, futility, or abandonment.¹¹ One patient stated, Another previous caregiver said, One patient suggested.

(After doctor introduced palliative care) I struggled and hesitated … My husband joked that he could try it and see whether he could get out alive.

… My sister-in-law had the same hesitation as me … but she came to the view later that when the end is near …, therefore, accept there was no other choice.

(Health professionals) should make it clear for (patients) that palliative care is for a stage between cancer treatment and end-of-life. It is not equal to waiting for death… It will be good for someone to speak and clarify that various treatment/recovery approaches are available (in palliative care hospitals).

Difficulties in accessing palliative care

The survey results showed that language difficulties were a major barrier (X² = 6.6, P = 0.88), which hindered understanding and communication with healthcare professionals. A patient wrote, ‘Ideally, PC [palliative care] hospitals with Chinese-speaking staff should be available’. During the interview, a patient stated, ‘I was very nervous, (my) English is not good’, which is a common phenomenon.

In Chinese culture, discussing death is taboo,¹² a sentiment echoed in interviews, leading to significant resistance to discussing related topics like powers of attorney, wills, and advanced care directives. Consequently, patients, relatives, and health professionals of Chinese background are often hesitant to address these issues during the palliative care stage. One participant remarked, ‘My husband has seen several doctors, but none of them has mentioned (palliative care).’ Some caregivers refused to discuss palliative care with other relatives/decision-makers due to the same reason. Participants were aware that such traditional taboos might cause problems later on. There appears to be a conflict between being self-aware of cultural issues, particularly regarding harmful taboos, and recognising the benefits of receiving palliative care for their medical conditions.

Preference for palliative care and end-of-life care

In the survey, 52.7% of patients preferred receiving palliative or end-of-life care either at home or in a hospital, with a greater proportion preferring home (29.1%) over a hospital setting (18.2%). A similar trend was observed among caregivers, with 76% favouring home as the preferred location for palliative or end-of-life care. However, less than half (44%) of respondents considered advance care planning a vital factor in palliative or end-of-life care. Participants identified wills (57%) and power of attorney (45%) as the most critical issues in palliative care and end-of-life stages. Most respondents (63%) also stressed the importance of involving all family members in palliative and end-of-life care decisions, highlighting the need for shared decision-making.

Most participants (82/101) agreed on the necessity to express wishes for further medical treatment before the end-of-life stage. The top two choices were ‘I want to undergo the treatment of my choice’ and ‘I want to decide for myself’. This indicates that most participants consider it paramount to be able to exercise independent choice. They also realise those decisions are a heavy responsibility. Therefore, the third choice for preparing an end-of-life plan was ‘I hope not to burden my family with end-of-life decisions’. These responses suggest a potential conflict between individual autonomy and the traditional Confucian hierarchical values often associated with Chinese culture. In Confucianism, there is an emphasis on family roles, filial piety, and collective decision-making, particularly in health-related matters. This cultural framework may prioritise family involvement and hierarchical decision-making over personal autonomy. However, the survey responses indicate that many individuals may value personal choice and autonomy in their palliative care preferences, challenging the stereotype that Chinese individuals adhere strictly to traditional cultural norms. This highlights the complexity of cultural influences on healthcare decisions and the need for personalised care approaches that respect both individual autonomy and cultural values.

Suggestions on how to address the hurdles

Limitations of the study

There are several limitations in this study. The relatively small sample sizes for the survey and interviews may not fully represent the diverse experiences and perspectives within the broader Chinese Australian cancer patient and caregiver community.

This study relied on self-reported data, which can lead to biases in the participants’ interpretation of palliative care. Despite the intention to ensure data validity by modifying a previously published survey, the reliability of the adapted survey requires further evaluation in this specific ethnic population in future studies.

Low awareness and misunderstanding of palliative care

Although participants are willing to receive such information, we found a low awareness of and considerable misunderstanding of palliative care in the Chinese Australian community. Findings from both the survey and interviews indicated that language and cultural differences are the main challenges for Chinese-speaking cancer patients and caregivers in accessing palliative care services. The responses also highlighted the need to address language barriers that caused low awareness and uptake of palliative care.

Educational and psychological support needs

Low awareness and misconceptions about palliative care among Chinese Australians stem from cultural sensitivities and personal inhibitions. Discussing death is taboo, leading to resistance to palliative care, seen primarily as end-of-life treatment. Psychological support, clarifying misconceptions in educational materials, and home care support may help overcome these barriers.

Language and cultural barriers

Most participants are eager to learn about palliative care but face significant language barriers, particularly those who are older, less educated, and speak little English. They also struggle to find written information in Chinese. This highlights the need for materials in culturally and linguistically appropriate formats, a need likely shared by other non-English speaking immigrant groups.

Decision-making in palliative care

Palliative care guidelines typically anticipate home-based care with support from health workers and family, allowing the patient to freely choose the care setting.¹⁴ Survey results show that while patients want to decide on end-of-life matters, families often make final decisions.

Challenges in home-based palliative care

Experience influences caregivers’ preferences, with former caregivers more aware of the challenges of home care. Many patients prefer dying at home, but obstacles like insufficient after-hours support and language barriers for non-English speaking caregivers often make this difficult.¹⁵ Additionally, cultural sensitivities around discussing death lead to delays in addressing critical issues like wills and Advance Care Directives.

Culturally sensitive recommendations

Previous studies have examined the difficulties culturally and linguistically diverse community members face when accessing palliative care in Australia.^16–19 Our study used quantitative and qualitative data to address cancer patients, caregivers, and former caregivers in the Chinese community. We recommend care providers offer culturally sensitive educational seminars and materials in digital and paper using Chinese, which clarify common misconceptions about palliative care, its benefits, scope, and access guidelines. Health professionals of non-Chinese background need to be equipped with the necessary tools and resources to provide palliative care information in Chinese. This includes offering culturally sensitive educational materials and ensuring that they can effectively communicate key information, either through interpreters or multilingual staff. These strategies can help bridge language barriers, clarify misconceptions, and facilitate timely referrals to palliative care services. Such an approach is essential to ensure that Chinese-speaking patients and their caregivers receive accurate, accessible information that supports informed decision-making, ultimately improving access to and the quality of palliative care within this community.