by Ustadah Maysoon Shafiq

Palliative care is widely understood in health and social care services as the support provided to those who are either at the end of their life or seeking treatment for a terminal illness. It is an interdisciplinary medical approach aimed at improving the quality of life and alleviating suffering among people with terminal illnesses (National Health Services (NHS), 2022). The focus of palliative care is to relieve symptoms, manage pain, and address emotional, social, and spiritual needs. Caregivers and family members can also benefit from this holistic and supportive approach (World Health Organisation (WHO), 2024).

 

Every year, an estimated 56.8 million people require palliative care worldwide, yet only 14% receive it (WHO, 2021). This significant gap, as highlighted by the Council of Europe (2018), leads to unnecessary suffering for patients and their families. Urgent action is needed to address this issue, as adequate palliative care availability can prevent unnecessary hospital admissions and promote more effective use of healthcare services. Disparities in access to, utilisation of, and provision of palliative care can affect everyone, irrespective of their race or religion (Muslim Council of Britain (MCB), 2019). The International Association of Hospice and Palliative Care (IAHPC) emphasised in 2020 that palliative care should be universally available as it is a fundamental care need for anyone suffering from a terminal illness (Axelsson, 2022).

 

The available evidence suggests a growing disparity between the current model of end-of-life care and the health needs of religious and ethnic communities, particularly among Muslims. 

With a population of approximately 70 million people living in the UK, we are witnessing a significant increase in diversity in terms of ethnicity, culture, and faith. Islam is the second largest religion in the UK, with around 4 million followers. This accounts for 6.5% of the total population, with 2.7% belonging to the Pakistani ethnic group, resulting in 1.6 million British Pakistani Muslims living in the UK (Census, 2021). The number of British Pakistani Muslims in the UK has been on the rise. Pakistani Muslims constitute the second-largest ethnic minority population in the UK and the second-largest sub-group of British Asians (Office for National Statistics, 2022). The available evidence suggests a growing disparity between the current model of end-of-life care and the health needs of religious and ethnic communities, particularly among Muslims. It is reflected in the poor uptake of advanced care planning and hospice services, including community-based services and on-site care (Muslim Council of Britain, 2019).

 

To my knowledge, there are no official recorded statistics on either how many Muslims seek palliative care in the UK, nationally or globally, or how many are from the Pakistani Muslim ethnic group. The leading palliative care charity Marie Curie (2018) states that there is consistently low usage of palliative and hospice care services within minority ethnic groups, particularly in the UK. This trend has been observed across various healthcare settings, including community services, inpatient hospices, and care homes.  Moreover, Public Health England (2024) reports that 88% (19,316 deaths) of people from Asian or Asian British backgrounds died in England in 2022 from one of the four major life-threatening conditions such as cancer, cardiovascular, dementia and respiratory. However, the report does not further divide the demographic group and indicates the percentage based on those who identified as either Asian or Asian British. And so, it is difficult to know the exact number of Pakistani Muslim deaths or the patients from this ethnic group who sought palliative care before their death.

Public Health England (2024) reports that 88% (19,316 deaths) of people from Asian or Asian British backgrounds died in England in 2022 from one of the four major life-threatening conditions such as cancer, cardiovascular, dementia and respiratory.

Further research is necessary to explore and understand barriers and facilitators for individuals from a Pakistani Muslim background residing in England to access palliative care and broader factors, including social, cultural, religious and familial, that may influence their decisions to uptake palliative care. My research aims to fill the gap by engaging with the Pakistani community, including patients, their family members living in England, and health and social care professionals involved in providing palliative care, to collect their perspectives concerning the uptake, access to, and how to improve their access and use of palliative care services.

 

Palliative care is seen as a sensitive topic in the Pakistani Muslim community and usually a taboo topic. Matters will now be further exacerbated with the introduction of the new laws on assisting suicide. For Muslims, and for those of faith, life is seen as sacred and a gift from God therefore it will be interesting to see how my research folds with these new laws and regulations and whether there is an increase in palliative care or we see a decline in the uptake.

 

 

 

References

1.     National Health Services, (2022), https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/ (accessed 30 May 2024)

2.     World Health Organisation. (2024), definition of palliative care. https://www.who.int/health-topics/palliative-care (accessed 28 May 2024)

3.     World Health Organisation. (2021), Implementing World Health Assembly Resolution on Palliative Care, https://www.who.int/news/item/12-10-2021-implementing-world-health-assembly-resolution-on-palliative-care (accessed 19 June 2024)

 

4.     Council of Europe, (2018). The provision of palliative care in Europe. https://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=25214&lang=en (accessed 21 June 2024)

 

5.     Muslim Council of Britain, (2019), https://mcb.org.uk/wp-content/uploads/2019/08/MCB_ELC_Web.pdf (accessed 30 May 2024)

 

6.     Axelsson B., (2022), The Challenge: Equal Availability to Palliative Care According to Individual Need Regardless of Age, Diagnosis, Geographical Location, and Care Level. Int J Environ Res Public Health. 2022 Apr 1;19(7):4229. doi: 10.3390/ijerph19074229. PMID: 35409908; PMCID: PMC8998807.

 

7.     Census (2021), https://www.ons.gov.uk/peoplepopulationandcommunity/culturalidentity/religion/articles/religionbyageandsexenglandandwales/census2021 (accessed 30 May 2024)

 

8.     Office for National Statistics, (2022), https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/national-and-regional-populations/population-of-england-and-wales/latest/ (accessed 30 May 2024)

 

9.     Marie Curie, (2018), https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2013/palliative-and-end-of-life-care-for-black-asian-and-minority-ethnic-groups-in-the-uk.pdf (accessed 2 June 2024)

 

10.  Public Health England (2024), https://fingertips.phe.org.uk/documents/peolc_patterns_of_care_factsheet_2022.html (accessed 30 May 2024)