The philosophy that drives the delivery of palliative and end-of-life care is based on the need to maximise quality of life for those facing life-threatening illnesses, such as cancer. Interventions focusing on pain and symptom management form the main pillars of palliative care delivery. It is important to stress that the context of pain here is not only limited to physical pain, but covers total pain, including psychological, spiritual, social and emotional distress (Nyatanga, 2008; Department of Health and Social Care, 2008), and it should be afforded to every person with a need.
A number of studies have been published through the Cecily Saunders Institute, King's College London (Calanzani et al, 2013), reporting on the inadequacy of palliative and end-of-life care services reaching people from Black, Asian and minority ethnic (BAME) backgrounds. Use of the term ‘BAME’ is unfortunate, and has been for a while, as it sadly perpetuates post-colonial semantic trappings, which promote the ‘othering concept’ (Cherry, 2020), which, ultimately, deprives this group of its true individual identities. However, the label ‘BAME’ provides, for now, a common point of reference for this group of people, until a more appropriate term, which is being discussed and debated, is agreed.
In addition to the semantic trappings, it has emerged that BAME communities have been disproportionately affected during the COVID-19 pandemic, and they are also less likely to access palliative care services, while the BAME population in the UK is projected to increase by 27% by 2031 and to 43% by 2056 (Calanzani et al, 2013). These figures imply an urgent need to re-examine how best to afford access to all who need it if palliative care is to be provided fairly to all communities. It is important to reiterate that every person, regardless of background, deserves palliative care that specifically helps them. Such a service should be solely based on need and should be free at the point of access. In order to provide palliative and end-of-life care to all, additional strategies need to be developed and implemented to ensure disadvantaged and vulnerable groups can easily access services.
Barriers to accessing palliative care services
To do this successfully, an awareness and recognition of the reasons why these groups may be reluctant or find it hard to access services is important. There are barriers that are informational (lack of awareness of palliative care services, not understanding the language, cultural and religious differences, lack of staff diversity), while there are others that are attitudinal (lack of trust in the services, perception of being an outsider and, therefore, not belonging, perceived negative attitudes of staff, not identifying staff who are similar to them providing their care).
The way forward
The simple answer to the identified barriers would be to flip the informational barriers, but this is easier said than done when it comes to attitudinal ones. For example, trust is a two-way process that begins with building honest, open communication leading to a sustainable relationship, and this often takes time to achieve, so patience and persistence are key. The overt presence of staff diversity may reassure all service user communities that services are genuinely for their needs. Attitudes of staff are central to how services are perceived, accepted and accessed. Everyone has a duty to display favourable attitudes (verbally and non-verbally) to all people seeking palliative care services. People often remember how staff make them feel, and, despite all the good things going on, one negative unfavourable attitude is often the one that is remembered. Staff should continue with impeccable assessment of people's palliative care needs, provide information and explain the available options for accessing the services. It is also important to acknowledge that we all approach and deal with death differently; therefore, tailor-made options (eg enabling dying at home) should also be available to ensure that services respond specifically to patient and family needs.
Finally, it is paramount that we increase awareness of palliative care services to all who need them, so that they know the options available to them. Thus, we can ensure true patient-centred palliative care provision for all.