References

Palliative and end of life care for Black, Asian and Minority Ethnic Groups in the UK: Demographic profile and the current state of palliative and end of life care provision. 2013. https://tinyurl.com/2e539ftz

Care Quality Commission. A different ending: Addressing inequalities in end-of-life care. 2016. https://www.cqc.org.uk/publications/themed-work/different-ending-end-life-care-review

Hospice UK. Hospice care in Wales 2018: supporting people closer to home. 2018. https://www.hospiceuk.org/what-we-offer/publications

Webb WA, Mitchell T, Nyatanga B, Snelling P How to explore the end-of-life preferences of homeless people in the UK. European Journal of Palliative Care. 2018; 25:(2)59-62

Welsh Government. Quality statement for palliative and end of life care for Wales. 2022. https://www.gov.wales/sites/default/files/pdfversions/2022/10/5/1665148261/quality-statement-palliative-and-end-lifecare-wales.pdf

Disadvantaged dying in palliative care

02 August 2024
Volume 29 · Issue 8

It remains true that strongly held religious and cultural beliefs can prevent people from Black, Asian and minority ethnic backgrounds from accessing palliative care. However, it also remains true that there is a lack of awareness of specific palliative care services available to support this population. Where services are offered, some are culturally inappropriate (Calanzani et al, 2013), thereby presenting as an unwelcome barrier. Challenges of speaking the English language competently to express one's needs or for explaining one's symptoms, often create communication barriers leading to loss of confidence and self-esteem. This group may have limited access to palliative care services and a death characterised by uncontrolled symptoms. It is imperative that palliative care affords everyone a dignified death. Therefore, it is important to implement the following:

 

These strategies can be transferrable to other marginalised groups such as those people living in homelessness. It is important to understand what matters to people living in homelessness as they approach the palliative and end-of-life phase. Webb et al (2018) explored such priorities using the Merleau-Pontyerian interpretive phenomenology (MPIP) to elicit personal intimate data of the experiences of people living in homelessness as they face the prospect of death and dying. The perception and embodiment in line with MPIP revealed numerous fears; for example, fear of being forgotten as they die. On the other hand, people living in homelessness had a preference to be somewhere comfortable where people knew them so they can die with people around. This preference is a huge challenge for most people approaching death and it can only be magnified by their living conditions, with no permanent connections to family, friends or neighbours. The irony is that people living in homelessness have, arguably, greater need for palliative care support than most of us; yet, they consistently fail to access palliative care services (Care Quality Commission (CQC), 2016). It is true that their needs remain poorly understood as these continually change depending on where they sleep that day and who they are with. It is also true when reading the CQC report, that healthcare professionals are not fully equipped to intervene and deal with the complex health and care needs of those living in homelessness. While most of us can indicate a preference to die at home, this is not an option for those living in homelessness. Another irony is that governments like the Welsh devolved Government's (2022) quality statement of palliative and end-of-life care include meeting this group's preference of dying at home as a measure of success of their end-of-life policy and care.

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