Description of included sources
Initial database searches after de-duplication identified 2059 results. From these, 254 potentially eligible studies were identified and screened as full texts (Fig. 1). Eight papers were identified for inclusion. Thirteen additional sources were identified from reference and citation searches, and one from the grey literature search. Due to the additional papers identified we discussed with an information expert our search sensitivity; however, many of the additional papers were not indexed under the search terms used and would not have appeared in searches. Our search was very broad as seen in the Appendix. We discuss challenges of identifying relevant literature in the databases in the discussion. Updated searches identified 497 results, with 38 papers screened as full texts. From these, one paper was identified for inclusion. Twenty-three sources reporting on 20 different studies were included in the qualitative analysis.
PRISMA flowchart of search process
The number of articles published on this topic has increased substantially over time – 18 of the 23 were published in the last 10 years, with years of publication ranging between 1995 and 2023. Nineteen papers used purely qualitative methods [11, 15, 16, 19, 20, 34,35,36,37,38,39,40,41,42,43,44,45,46,47] and four used mixed methods [48,49,50,51]. The mean number of participants recruited was 31 (range 1–100). The mean age of people receiving palliative or end of life care was 77 years. Characteristics of included papers are summarised in Table 1.
As can be seen in the table, there were many different ways in which ethnicity was described, some of which represent the time in which the studies were undertaken. For example, CALD may now potentially viewed as outdated.
We grouped the findings across the included studies into seven overarching themes were: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. Barriers and facilitators for accessing and utilising care were explored through each theme.
Knowledge of hospice and palliative care
Understanding of palliative and end of life care was generally limited among Black and African-Caribbean carers, migrants, and CALD (culturally and linguistically diverse) patients [35, 36, 38, 47]. Part of this may be due to there being no equivalent term for ‘palliative care’ in many cultures and languages [36]. A lack of understanding and limited health literacy, especially where there was limited English skills among Hispanic and Latino participants, impaired their ability to seek help, navigate the healthcare system, and make informed decisions [34, 37, 39]. Many participants learned about hospice for the first time at the time of the referral [45, 46]. Participants often had a limited understanding of hospice and the changes in goals of care (i.e., from curative to comfort care) it represented, and were not well-aware of the connection between hospice referral and disease prognosis [11, 15, 36, 46, 49]. Some participants viewed hospice as a support if their health declines further in future, despite currently receiving hospice services [46]. Others viewed hospice as a break before returning to curative treatment [41, 45]. Positive past experiences with hospice, learning about hospice care through seeing older relatives go through it, or recommendations from friends helped carers access hospice [45, 49].
Understanding the potential risks associated with life-sustaining treatments were reported to be important for Hispanic carers making end of life decisions, with carers wanting healthcare professionals to explain end of life treatment options, including purpose, goals, and limitations. Despite the discomfort surrounding the topic of hospice care, carers emphasised the importance of talking about the benefits of hospice care [15]. This was supported by families’ concerns around medication use toward the end of life being dispelled through nurses providing explanations [44, 50].
Patients’ and carers’ insight into their own or their family member’s health status also enabled them to make end of life decisions. Patients who were aware about their declining health or their conditions being unlikely to respond to medical treatment were more likely to accept recommendations to enrol in hospice, despite having little to no previous knowledge of hospice [45, 49].
Societal and structural issues
Hospice care and other end of life support held a stigma among Black African-Caribbean, African American, and Chinese American communities, seen as giving up on or not wanting to take care of someone [35, 39, 41, 43]. Stigma around dementia also resulted in later diagnosis and reluctance to seek additional support [16]. Talking about end of life, prognosis, palliative care, or hospice care was often suppressed among people from minority ethnic groups, and may cause feelings of discomfort or offence when mentioned [11, 15, 19, 20, 36, 38, 39, 50]. Healthcare professionals working with South Asian patients with kidney disease in the UK reported that not all of their colleagues agreed with discussing end of life and advance care planning with patients [37].
Institutional racism, and the risk of discrimination and mistreatment within healthcare systems was a concern for African American participants; some of whom felt that they were “second-class patients” due to experiences of differential treatment and stereotyping from healthcare professionals [43]. Structural barriers to accessing care included lack of health insurance or living in poverty [43].
Latino and Hispanic participants in the USA reported feeling uncertain about who was being billed for services received, and therefore hesitating to request more services despite needing them [46]. Carers suggested that healthcare professionals should recognise that many African American people experience substantial financial difficulties.11 Health insurance coverage of hospice care facilitated access for African American patients with low income [49].
African American patients and carers valued assistance from health and social care professionals, for instance, help from hospice staff when completing hospice enrolment paperwork [49]. Social workers also helped carers make end of life care decisions by explaining treatment options, arranging meetings with healthcare professionals, advocating for families, and supporting effective communication between family members and their dying relatives, as well as with each other.20
Language and health literacy
Language barriers were reported across many papers. Latino and Hispanic patients and carers highlighted a need for more Spanish-speaking healthcare professionals and materials in Spanish [19, 34, 46]. Healthcare professionals reported that South Asian patients also experienced poorer access to care due to language barriers [37]. Particular language difficulties reported by nurses and patients included adequately assessing and managing pain without interpreters [36, 50], supporting patients and families coming to terms with dying [44], and processing information about prognosis and treatment in a foreign language while suffering from distressing symptoms [38]. This can be exacerbated for people with dementia who speak English as a second language, as they may lose their English ability as well as their ability to communicate as the disease progresses [16].
Latino and Hispanic participants faced health literacy difficulties that hindered their ability to communicate with medical providers; for example, using medical terms incorrectly [46]. CALD patients with cancer had difficulties communicating with clinicians about treatment expectations [36]. Black and Hispanic carers believed that the lack of end of life communication from healthcare professionals, such as about worsening prognosis, impeded end of life care planning and decision-making; [15, 47] for example, hospice referral happening too late because the physician did not discuss hospice with carers [43]. Black and African American carers also felt they could have been better informed concerning treatments and outcomes [20, 47].
Migratory experiences
A study with Hispanic and Latino participants who had migrated to the USA found many carers were previously not exposed to issues around ageing and dying as they did not have elderly relatives nearby, limiting opportunities to learn from family members. These experiences, as well as low education levels, resulted in participants feeling limited in their ability to seek out and understand health information and services. Terminally ill Latino and Hispanic people had limited access to healthcare in their countries of origin, and once in the USA, continued to have few interactions with healthcare prior to being diagnosed with their terminal illness. This limited interaction with medical providers led to participants rarely discussing their preferences with clinicians and instead following doctors’ orders [46].
Migrant patients in Germany experienced feelings of not belonging, which led to difficulties towards the end of life, such as experiencing less support from neighbours and the local community than in the country of origin, and regrets around moving.39 These feelings of interpersonal disconnect may discourage migrant patients from seeking or using palliative care services.
Trust in healthcare services and professionals
Trustworthy information was important and acted as a facilitator to accessing care, with recommendations from friends, neighbours, and spiritual leaders being the main influence on decision making [43, 47]. There was distrust of health and care systems and physicians among Black, African American and Hispanic carers [11, 47], including refusing support from services [34] and feeling misled by doctors due to not understanding medical terminology [39]. African American patients and carers were sceptical of advice offered by healthcare professionals due to previous reports of being treated badly [43]. Carers recommended that clinicians work to establish trust while understanding their distrust of care and the medical system, and recognising the historical and social reasons for this, including slavery, racism, medical experimentation and exploitation [11].
Black and African American patients and carers are more likely to trust staff members of their community [47] and found the lack of Black hospice care workers frustrating [11, 39]. Nurses working with immigrant patients reported that trust is particularly important, and that it can be easy to lose the trust of patients and their families. They suggested building a trusting relationship by getting to know the patient and their family, and not rushing conversations about dying. Nurses reported using qualified health interpreters and having a multicultural workforce were valuable for working with immigrants [44].
Latino and Hispanic carers reported trusting doctors perceived to be knowledgeable and adept. However, those with limited health literacy had no option other than to trust doctors [46, 51]. Healthcare professionals investing time in understanding patients’ beliefs about dementia resulted in a better understanding of cultural barriers and facilitators in accepting support, and promoted trust in the relationship [16].
Religion and hope
Religion was seen as a facilitator in end of life decision making. Many Black, African-Caribbean and African American carers indicated that their faith, religious beliefs, or pastoral counselling was an important resource in making end-of-life care decisions for their family member [20, 35, 47]. African American carers suggested that healthcare professionals invite their pastors to prognosis discussions and understand the role of religion and church in their lives [11]. Latino patients were similarly guided by God and religion, and end of life treatment discussions often involved a spiritual or religious leader [34, 51]. Religion also caused barriers to accessing care. For example, African American carers were reluctant to enrol their family member in hospice care because they felt that doing so reflected a lack of trust in God [43]. However, others felt that God was sending them hospice or healthcare professionals [41, 49].
One reason African American patients chose hospice care was because it allowed them to practice their spiritual and religious beliefs [49]. African American nursing home residents valued using religious activities as a source of comfort to reduce pain, including prayer, Bible reading, and laying on of hands [40]. Although psychosocial and religious support was important for Latino and Hispanic participants, many did not expect this from hospice due to their limited knowledge of hospices’ philosophy of care or the range of services provided. As a result, care was sometimes not culturally appropriate [46].
For CALD patients and carers, religious faith was associated with hope, as opposed to medical futility, which was associated with death and ‘giving up’. For African American carers, the decision-making process was guided by hope for recovery. Although patients’ chances of recovery were small, family members accounted for this possibility in their end of life care decisions, with the belief that only God determines when someone lives or dies, and a need to make sure that everything possible was done [11, 20]. However, Latino patients expressed that they would not want any procedures to be carried out if they were diagnosed with terminal cancer, as this was considered to be futile and may increase suffering.52 Some CALD patients with cancer also believed that returning home meant they were dying and that remaining in hospital entailed hope for recovery [36].
Cultural values
Caring for family members was an important cultural tradition in many studies. For Black, African-Caribbean and African American carers, it was reported as important to take care of their family members [35, 41]. Black African-Caribbean, African American, Chinese American and CALD families in several studies rejected the idea of residential care, expressing wishes to care for their family member at home.36,40,51 This duty was often expected of carers, regardless of the sacrifices or personal cost, and without asking for outside help [11, 16, 34, 35]. This could cause delays in accepting care at home for patients [11].
For African American participants, there was a sense of incongruence between hospice policies and procedures, and cultural values and practices related to illness and death. Participants were critical of policies requiring patients to stop curative treatment to access hospice and felt that more African American people would consider hospice if they were able to pursue curative treatment concurrently [43]. which suggests a lack of knowledge or acceptance of the terminal nature of the condition [41].
Family involvement in end of life decision making was also important. Hospice-provided training to help family members participate in the caregiving process was of value for African American carers [41]. Where patients were unable to make their own care decisions, physicians sought family members’ input to ensure that the process was cooperative and inclusive [20]. However, this could also be stressful for carers of people living with dementia, as they questioned whether their decisions would be considered correct by the person with dementia [35]. African American carers suggested that healthcare professionals emphasise that hospice staff will not ‘take over’ and that the family still decides what is done and how it is done [11]. For Black, African American and Latino carers, support from other family members in the decision to use hospice care and make end of life care decisions, and following family elders’ wishes regarding patients’ care was important [19, 47, 49]. Patients’ own wishes were also taken into account, such as not going to a nursing home [11], not wishing for aggressive treatment [35, 49], dying at home [35], or continuing treatment regardless of benefits [20, 38, 51]. However, this was not always possible [34, 35].
There was also a lack of healthcare professionals’ awareness and understanding of different cultures. Black African-Caribbean and African American participants believed that many healthcare professionals do not understand cultural preferences and their importance [35, 43]. CALD carers felt that the Australian medical system was not well equipped to meet their cultural or linguistic needs [36]. Nurses themselves felt they had little knowledge or understanding of what culturally responsive end of life care consists of and felt ‘overwhelmed and underprepared’ when encountering patients and families from diverse cultural backgrounds. Some nurses believed end of life care for patients from culturally different backgrounds was the same as for any patient [44]. Nurses suggested that working with families, learning what is important to them, determining the ‘patient–family decision making model’, engaging a family spokesperson, reaching compromises, and actively involving families in the patient’s care were beneficial [44].
Being able to receive care at home was also important. Learning that they could receive hospice care at home was a ‘relief’ for African American patients as they did not want to leave their home [49]. For Black African-Caribbean carers, taking their family member living with dementia to hospital was distressing due to fears they would die there [35]. Latino and Hispanic participants’ primary expectations of hospice were nursing care and receiving services in their homes, valuing their family members being cared for at home [15, 46]. Similarly, many CALD patients stated their desire to return to their home for care [50].
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