Searches retrieved 5303 studies (after de-duplication), 29 of which have been included in this review. Tables 3-4 describe the characteristics of studies with findings relating to receipt of palliative care (Table 3) and findings related to other access issues (Table 4). Some studies contributed multiple findings and are included in both tables. The studies ranged widely in purpose and varied in quality, with scores ranging from 17 to 35; most studies scored between 25 and 30.
There was insufficient evidence to synthesise data under the seven separate stages of candidacy. Instead, four broader themes were generated, within which the concepts of candidacy were captured: identifying needs; taking action; local conditions; and receiving care.
Several studies suggested that patients living in socioeconomically disadvantaged circumstances may have a greater need for palliative care (31-37). However, there was little exploration about how patients and professionals may assess need for care differently depending on a patient’s socioeconomic position, a fundamental component to the candidacy model.
Evidence on awareness or attitudes towards death and dying among patients from different socioeconomic groups was minimal, over twenty years old, and contradictory, making it hard to synthesise; the higher quality study found that patients in more advantaged class were more accepting and aware of death and dying (38). Only one qualitative study considered attitudes to hospice care, finding no examples of differences between social classes (39). There is poor evidence, therefore, that those in a more socioeconomically disadvantaged position would be less likely to recognise they had a need for palliative or end-of-life care.
With regards to how professionals assessed patient need, one study found that ‘working class’ patients were more likely to feel a general practitioner has less time to talk (40). Another suggested that so-called lifestyle factors that the authors associated with socioeconomic disadvantage, may lead to nurses downgrading patient reports of pain (41). This highlights the potential for bias in how patients are assessed. Encouragingly, however, a study of GP palliative care training in Wales found no evidence of differences in training across socioeconomic areas (42).
Whether someone receives the care they need depends on the abilities of patients, families, and healthcare providers to take steps to secure that care. There was some evidence to suggest socioeconomically disadvantaged groups and communities may have fewer informational resources to help navigate this process. This evidence showed patients who were more socioeconomically disadvantaged being less likely to recognise the phrase palliative care or correctly understand the role of Macmillan nurses (43), showing less desire for information or preferring to “passively” acquire it (39), finding it difficult to ask for information (44), and misunderstanding the role of an out of hours palliative care service (45).
Although families can facilitate access to care, only two studies closely examined the relationship between socioeconomic position and families. One found that patients often relied “on their most forceful members, particularly children of higher social class” to achieve access to a hospice bed (39, p.108). Additionally, Johnson et al. (46) found that household income of carers was not related to access to palliative care, but higher qualifications were, particularly having a degree. The ability to navigate care successfully may, therefore, have a stronger link with having a highly educated, possibly younger, care advocate.
It is not necessarily that patients and carers experiencing disadvantage do not ask for care, but that sometimes requests appear to go unheard. In one study of Bangladeshi carers in East London, a carer in precarious social circumstances reported not receiving formal support even after they “begged the authority for help” (47, p.126), and only received help after a fire broke out in their kitchen. Cartwright (40) also found that more working class than middle class patients had difficulties overcoming barriers to care related to housing, sometimes financially driven.
While the organisation of services could be a barrier to access, it was unclear whether such barriers impact patients differently depending on socioeconomic circumstances (44, 45). One qualitative study reported patients in a disadvantaged social class assuming they have access to a hospice bed when they are dying, an assumption in contrast to the reality of scarce resources and limited referral options available to them (39). Local context is clearly important in understanding the impact of service availability. While most hospices (77.1%) serve mixed deprivation areas, more operate in affluent areas (15.7%) than in deprived areas (7.1%) (48). Some regions in England have a higher proportion than others of socially deprived areas over 30 minutes drive from a hospice inpatient unit, indicating that the relationship between deprivation and geographic accessibility is not consistent throughout the country (49, 50).
Regional differences are also evident in the length of time between referral to hospices and death. The time spent under hospice care in the Midlands or South of England is longer on average than in the North of England – a more disadvantaged region on average (51).
Where inequities in access do exist, they are unlikely to only result from differences in service availability: a study of a single hospice at home service delivered to two socioeconomically distinct areas found increasing area deprivation was associated with lower referral rates (52), suggesting that availability could not fully explain inequities in referrals in that instance.
Receiving care from generalist palliative and end-of-life care providers
The use of hospital or primary care services does not necessarily mean an individual has received generalist palliative care. However, these services have the capacity to provide generalist palliative care, making it appropriate to consider the association between socioeconomic position and receipt of these services. Using hospital services, particularly emergency care, at the end of life is consistently associated with socioeconomic disadvantage (8, 15, 53). The evidence regarding primary care referrers was more mixed, with one study finding that both patients with financial difficulties and those who paid for health services were more likely to be frequent attenders of GP services in the last year of life (54). This contradicted an older, smaller study that found no social class differences in the use of GP services or in nurse visits towards the end of life (40).
Receiving care from specialist palliative care providers
There was an overall trend for findings to suggest no evidence of differences in receipt of specialist palliative care between socioeconomic groups, although this may depend on a number of factors (7, 8, 37, 40, 55-60). For example, there was a slight trend for findings based on survey data to suggest no evidence of a difference in receipt of specialist palliative care between socioeconomic groups (7, 55-57, 60). A similar pattern was found for findings based on individual measures of socioeconomic position (55, 56, 58-60), and from studies using national representative samples (7, 40, 55, 56, 60).
In contrast, findings based on routinely collected data (37, 51, 52), on an analysis of areas or regions (37, 51, 52, 58, 61), or which used local data (37, 52, 58, 61) tended to report socioeconomic inequities in receipt of specialist palliative care.