1.1. Dying at home or in hospital

Home was considered the preferred place of care and death in several studies (Cowan, Reference Cowan2014; Doorenbos, Reference Doorenbos2003; Venkatasalu, Reference Venkatasalu2017; Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016), as patients felt happier at home (Cowan, Reference Cowan2014). Some older migrants expressed their wish to go back to their homeland (country of birth) to die a peaceful death (Cowan, Reference Cowan2014). Spending the last days of life in one's homeland was preferable in terms of safety, space, time, caring persons, and practicing rituals surrounding death (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014).

Studies underlined that being cared for and to die in one's home was related to privacy (Shanmugasundaram and O'Connor, Reference Shanmugasundaram and O'Connor2009), cleanliness, performing rituals, and most importantly, being surrounded by family (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Venkatasalu, Reference Venkatasalu2017; Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014). According to one study, while a person dies at home, he/she can complete responsibilities toward family, and relatives can show their respect toward the dying person (Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014). Another study mentioned that lack of culturally sensitive care in the hospital causes dissatisfaction among caregivers, which shifted the choice to home as the place of death (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016). Despite the desire for comfort and peace from dying at home, due to the practicalities of older migrants living in the UK, many compromise and feel their death can be better managed in hospitals (Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014). According to older migrants, dying at home could be complicated (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017) and care could be an unbearable burden (Venkatasalu, Reference Venkatasalu2017), often for their busy children (Venkatasalu et al., Reference Venkatasalu, Seymour and Arthur2014).

1.2. Family caregivers

According to relatives, family care was named as the best option to retain dignity and comfort of the patients near death (Venkatasalu, Reference Venkatasalu2017). Within families, most caregivers were female (children/ daughters-in-law, and spouses of the ill patient) (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Cowan, Reference Cowan2014; Somerville, Reference Somerville2001). For caregivers, the main motivation for the caring role was love (Chattoo and Ahmad, Reference Chattoo and Ahmad2008), respect, religious reward, (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Cowan, Reference Cowan2014) and/or responsibility toward parents (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Cowan, Reference Cowan2014; Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Sharma et al., Reference Sharma, Khosla, Tulsky and Carrese2012) which often led to a decline in help from outside of the family (Somerville, Reference Somerville2001). Moreover, fear of being criticized by the same community restricted seeking professional help for the dying relative (Worth et al., Reference Worth, Irshad and Bhopal2009).

Studies mentioned that the caregiving role at home was physically, mentally, and financially burdensome for relatives (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Shanmugasundaram and O'Connor, Reference Shanmugasundaram and O'Connor2009; Somerville, Reference Somerville2001; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2014). Often, family caregivers (mostly women) were struggling to manage household activities on top of caring for the dying relative at home (Somerville, Reference Somerville2001; Shanmugasundaram, Reference Shanmugasundaram2015). Despite the extra burden, relatives were willing to care partly to avoid the extra cost of private care or just as a sign of being hopeful of possible recovery (Cowan, Reference Cowan2014; Shanmugasundaram and O'Connor, Reference Shanmugasundaram and O'Connor2009; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). Often, caregivers used to ignore their own physical health and struggled with normal life due to the demands of their role as caregivers (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Shanmugasundaram, Reference Shanmugasundaram2015; Somerville, Reference Somerville2001). Religious beliefs were found to be a common coping resource used by family caregivers (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Kristiansen et al., Reference Kristiansen, Irshad, Worth, Bhopal, Lawton and Sheikh2014; Somerville, Reference Somerville2001).

Older South Asian migrants trusted in the culture of shared decision making by involving other relatives (Chattoo and Ahmad, Reference Chattoo and Ahmad2008; Cowan, Reference Cowan2014; Ebrahim et al., Reference Ebrahim, Bance and Bowman2011; Venkatasalu et al., Reference Venkatasalu, Arthur and Seymour2013; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016). Perhaps the eldest son held the role of decision maker in the family (Biondo et al., Reference Biondo, Kalia, Khan, Asghar, Banerjee, Boulton and Simon2017; Ebrahim et al., Reference Ebrahim, Bance and Bowman2011; Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Sharma et al., Reference Sharma, Khosla, Tulsky and Carrese2012). Therefore, older migrants never felt the need to discuss palliative care issues in advance (Venkatasalu et al., Reference Venkatasalu, Arthur and Seymour2013). In the US, children often avoided discussing the topic of Advanced Care Planning (ACP) in fear of upsetting their parents (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017). Studies revealed that having collective decision making and filial responsibility within the family was hampering the completion of ACP among Hindus living in the US (Doorenbos, Reference Doorenbos2003; Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017). However, due to the busy daily life of children in the Western world, some parents started to realize the need for discussing palliative care issues in advance (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017). Compared to older generations, younger generations and woman were more willing to discuss palliative care issues in advance to avoid difficulties in the future (Biondo et al., Reference Biondo, Kalia, Khan, Asghar, Banerjee, Boulton and Simon2017; Doorenbos and Nies, Reference Doorenbos and Nies2003).

2.1. Trusting the staff

Patients and their families found themselves discriminated against during PC services of the host country in relation to their ethnic identity (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). Although, studies did show that HPs with cultural and religious sensitivity were really appreciated by migrant families (Ackroyd, Reference Ackroyd2003; Owens and Randhawa, Reference Owens and Randhawa2004). Some studies discussed the importance of partnership among HPs, patients, families, and community (Venkatasalu, Reference Venkatasalu2017; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016; Worth et al., Reference Worth, Irshad and Bhopal2009), while others described the importance of an individual approach (Randhawa and Owens, Reference Randhawa and Owens2004) to building trustworthy relationships.

Patients and their relatives were afraid that staying in the hospital (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Venkatasalu, Reference Venkatasalu2017) or hospice care (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016) would make them feel alone. In addition, a lack of trust in hospital staff (Venkatasalu, Reference Venkatasalu2017), perceived prejudice from HPs in regards to rudeness, and cultural insensitivity (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016; Worth et al., Reference Worth, Irshad and Bhopal2009) restricted the wish to be cared for in hospitals among South Asian families (Worth et al., Reference Worth, Irshad and Bhopal2009). According to family caregivers, hospital staff ignored and failed to meet the physical and hygienic needs of their dying relatives (Venkatasalu, Reference Venkatasalu2017). Mistrust was also expressed by older persons when having White ethnics as their personal caregiver in hospital (Worth et al., Reference Worth, Irshad and Bhopal2009). They believed White personal caregivers would not have the sense of privacy, cleanliness, and overall understanding of South Asian culture (Worth et al., Reference Worth, Irshad and Bhopal2009). Subsequently, dissatisfaction with hospital care led to mistrust of care in the hospice setting as well (Venkatasalu, Reference Venkatasalu2017). However, previous positive experiences motivated people to be cared for in hospital (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017). Hospice care was really appreciated if it provided appropriate food, prayer facilities, Asian TV channels, and support for families and care after bereavement (Worth et al., Reference Worth, Irshad and Bhopal2009). Studies reported that South Asian families often expected to feed their relatives until the very end. Otherwise, they were not satisfied with the service (Venkatasalu, Reference Venkatasalu2017; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016).

2.2. Language barriers and building up trust

It was revealed that often patients themselves were willing to discuss PC. However, they were not able to due to language barriers (Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017). Older migrants were more likely to communicate in their own language although they could speak the language of the host country (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003). To mitigate the language barrier, interpreters (in person or over the telephone) have been used in PC (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). The role of the interpreter was praised by the patients and their families only if he/she was skilled (Somerville, Reference Somerville2001; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). On some occasions, even HPs expressed their lack of trust toward interpreters (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). It was also challenging for the HP to access and manage an interpreter on short notice (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016; Worth et al., Reference Worth, Irshad and Bhopal2009). Unavailability of interpreters (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003) or family restriction led relatives to act as interpreter (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2014) to maintain family privacy (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017). Often as an interpreter, relatives modified, omitted, or miscommunicated to withhold medical information to protect patients or vice versa (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003; Worth et al., Reference Worth, Irshad and Bhopal2009). Availability of link workers was valued as they had language skills as well as a religious and cultural understanding (Ackroyd, Reference Ackroyd2003). Link workers increased referrals to PC, facilitated communication, and maintained the link between the local community and the hospital (Ackroyd, Reference Ackroyd2003). However, there was a fear of breaking family privacy through the link worker who was often from the same community (Owens and Randhawa, Reference Owens and Randhawa2004; Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003).

It was suggested by one study that appointing more HPs from South Asian ethnic backgrounds can help to build trusting relationships (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003). HPs with the same backgrounds speak the same language and have cultural and religious understanding (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003; Somerville, Reference Somerville2001). HPs were suggested for identifying a spokesperson within the family and being persistent in delivering care to build a trustworthy relationship with migrant families (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Randhawa and Owens, Reference Randhawa and Owens2004; Venkatasalu, Reference Venkatasalu2017).

3.1. Lack of knowledge and communication

The issue of poor knowledge was complicated by the lack of cultural equivalent words for palliative care and hospice care. Moreover, often these words were negatively connected to death (Cowan, Reference Cowan2014; Randhawa and Owens, Reference Randhawa and Owens2004; Worth et al., Reference Worth, Irshad and Bhopal2009). One study revealed that better knowledge on available PC services was positively related to better cultural integration in the host country (Doorenbos, Reference Doorenbos2003). The same study reported that migrant families with longer stays in the host country had better language skills and consequently better integration (Doorenbos, Reference Doorenbos2003), although better integration did not always reflect the western way of PC decision making (Sharma et al., Reference Sharma, Khosla, Tulsky and Carrese2012). Yet compared to older people, younger people generations had better knowledge and more willingness to look for what more was offered within PC services (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003; Sharma et al., Reference Sharma, Khosla, Tulsky and Carrese2012).

Nineteen studies identified the issue of communication between South Asian migrant patients/families and their HPs in PC (Ackroyd, Reference Ackroyd2003; Biondo et al., Reference Biondo, Kalia, Khan, Asghar, Banerjee, Boulton and Simon2017; Doorenbos, Reference Doorenbos2003; Khosla et al., Reference Khosla, Washington and Regunath2016; Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Owens and Randhawa, Reference Owens and Randhawa2004; Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Randhawa and Owens, Reference Randhawa and Owens2004; Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003; Shanmugasundaram and O'Connor, Reference Shanmugasundaram and O'Connor2009; Sharma et al., Reference Sharma, Khosla, Tulsky and Carrese2012; Somerville, Reference Somerville2001; Venkatasalu et al., Reference Venkatasalu, Arthur and Seymour2013; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016; Wilkinson, Randhawa, et al., Reference Wilkinson, Randhawa and Brown2017; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2014; Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017; Worth et al., Reference Worth, Irshad and Bhopal2009). Communication was identified as the key and most crucial factor in access to PC (Randhawa and Owens, Reference Randhawa and Owens2004). Perhaps difficulties in communication were often increased by social patterns and family structures within South Asian migrant societies. Due to the gatekeeping nature of families (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2014; Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017), direct communication between patient and HPs was often missing (Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017). According to HPs, patients were reluctant to state their own wishes in front of other relatives (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). Moreover, communication about the care was interrupted by the involvement of multiple relatives and friends. Consequently, it was complicated for the HPs to identify a particular spokesperson (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2014). Therefore, relatives with knowledge of health-related issues could work as mediators between HPs and other family members (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016). Although involving relatives facilitated communication between HPs and family members (Wilkinson, Randhawa, et al., Reference Wilkinson, Randhawa and Brown2017), communication barriers also existed within the patients’ family (Somerville, Reference Somerville2001). Relatives found it difficult to communicate the poor prognosis of the patient to other family members who knew less about the trajectory as a whole (Somerville, Reference Somerville2001). Apart from family, communication was also influenced by the patients’ gender preferences for HPs (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016) and link workers (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003). According to HPs, older South Asian migrant patients and their families were not really interactive with the opposite gender (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). It was also suggested that the HPs should use less jargon while communicating with the migrant families (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017).

Several other factors were identified as reasons for not discussing PC with/within the family: culture (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Venkatasalu et al., Reference Venkatasalu, Arthur and Seymour2013), religion (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017), ethnicity (Biondo et al., Reference Biondo, Kalia, Khan, Asghar, Banerjee, Boulton and Simon2017), and/or poor language skill (Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017). Although, one study contradicts this by stating that nothing but poor education among the group of ethnic minorities hinders the discussion (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). Studies mentioned that discussions about death and dying were related to diminishing hope and would possibly hasten the process of dying (Biondo et al., Reference Biondo, Kalia, Khan, Asghar, Banerjee, Boulton and Simon2017; Ebrahim et al., Reference Ebrahim, Bance and Bowman2011; Venkatasalu et al., Reference Venkatasalu, Arthur and Seymour2013; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). To avoid the discussion, relatives wanted HPs to withhold discussion of a life-threatening diagnosis in front of the patient (Somerville, Reference Somerville2001; Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). However, provision of inaccurate information to the patient contradicted patients’ autonomy (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016). Thus, restricting the discussion on PC consequently led to a lack of knowledge about available PC services (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). To improve awareness among patients and their families’, emphasis was given on the provision of information, advice, and knowledge toward them (Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017). The provision of information could be in the form of leaflets, posters, television programs, video, or audiocassettes in different South Asian languages (Randhawa and Owens, Reference Randhawa and Owens2004; Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003).

3.2. Cultural competence among healthcare professionals and its significance

Providing care with cultural knowledge has been presented in several terms: cultural competency (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017; Owens and Randhawa, Reference Owens and Randhawa2004; Randhawa and Owens, Reference Randhawa and Owens2004; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016), cultural sensitivity (Weerasinghe and Maddalena, Reference Weerasinghe and Maddalena2016; Worth et al., Reference Worth, Irshad and Bhopal2009), culture appropriate (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017), and cultural awareness (Worth et al., Reference Worth, Irshad and Bhopal2009). Studies urged the need for cultural education and training among HPs to facilitate access to services and to mitigate inequalities in care (Randhawa and Owens, Reference Randhawa and Owens2004; Worth et al., Reference Worth, Irshad and Bhopal2009). Still, one study raised the issue that HPs were not aware of the available training (Worth et al., Reference Worth, Irshad and Bhopal2009). HPs with an understanding of the South Asian cultural context showed a positive influence during communication with individual patients and their families (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017). HPs were concerned that they found it difficult to understand the culture and communicate, while at the same time, provide PC services toward South Asian migrant families (Owens and Randhawa, Reference Owens and Randhawa2004). Consensus was missing among HPs at different levels of PC concerning the proper time to start discussions on PC in the disease course and disclosure of illness to patients (Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016). The misunderstandings were the result of time constraints, lack of confidence, skill, and cultural understanding in talking to patients and their families about PC (Radhakrishnan et al., Reference Radhakrishnan, Saxena, Jillapalli, Jang and Kim2017; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016; Wilkinson, Randhawa, et al., Reference Wilkinson, Randhawa and Brown2017). HPs with ethnicities other than South Asian ethnic backgrounds found it challenging to build emotional rapport with South Asian migrants due to a lack of knowledge about the culture (Owens and Randhawa, Reference Owens and Randhawa2004).

Although several studies were concerned with providing culturally competent PC toward South Asian migrant families, consensus was missing on how the aim would be achieved. Suggestions included: training of interpreters and advocacy workers in PC settings (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003; Wilkinson, Waqar, et al., Reference Wilkinson, Waqar and Gill2017), appointing bilingual health workers (Ackroyd, Reference Ackroyd2003; Randhawa and Owens, Reference Randhawa and Owens2004; Wilkinson et al., Reference Wilkinson, Randhawa and Brown2016), cultural mediators (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017), and liaison officers (Randhawa et al., Reference Randhawa, Owens, Fitches and Khan2003). Among interpreters, concern was raised about their knowledge of the culture of the ethic group along with language proficiency (Khosla et al., Reference Khosla, Washington, Shaunfield and Aslakson2017).