BASW member blog: End of life care from a pandemic focus
As a Social Work practitioner and academic, with experience in the Hospice sector and a long- term interest in grief and bereavement, I welcome the new briefing paper ‘The State of End-of-Life Care’, from the Institute for Public Policy Research (IPPR) (Thomas, 2021)
The focus of the paper is particularly significant at a time when we have collectively faced death, in both our private and public experiences of the pandemic. Statistics in the IPPR report, highlight the devastating impact of these deaths on the Nursing and Care home sectors and against this background, the focus on ‘building back better’ recommended by the paper has several implications for Social Work.
End of Life and Palliative Care
Palliative care is a holistic model which aims to support people with advanced and terminal illnesses in achieving the best possible quality of life.
End of life care is an important part of palliative care but aims more specifically to recognise that someone is dying and helps them and their loved one’s plan for this in advance.
The IPPR report highlights place of death as an important part of advance care planning, advocating for a shift away from old fashioned hospital- based models to the community.
This is supported by previous research which demonstrates that patient outcomes are improved away from institutional settings, with many dying people choosing to return to a place where they have experienced happiness (Kazuyuki et al, 2019).
However, despite compelling evidence on the importance of advance care planning at end of life, Covid 19 has ruthlessly deprived many thousands of people of the opportunity to make personal choices in their final weeks and months.
Additionally, the restrictions posed by social distancing and PPE have further reduced the personal contact and care so crucial for effective palliative and end of life care, with research by the International Federation of Social Work in 2020, highlighting the negative impacts of mask wearing and absence of touch (Price, 2021)
‘An Eternal 2020’
The IPPR report warns that advance care planning and other established principles of palliative care could be under threat from rapid population growth amongst older people. The over 60 age group is estimated to rise by more than 15% between 2018 and 2031.
Accompanying this rise, projections in the IPPR report demonstrate an exponential growth in annual deaths, exceeding the unparalleled levels of the pandemic and potentially condemning the end-of-life care sector to ‘an eternal 2020’ every year from 2030 onwards.
In addition, the report highlights changes in causes of death, with rapid rises in conditions such as Alzheimer’s and dementia, as well as patients with long term conditions who are living longer but may need more complex care.
Given these predictions, the IPPR report calls for increased resources and training for all those involved with end-of-life care, dying people, their families and those who support them.
These findings are of particular significance for all social workers, since bereavement and grief are universal human experiences and social work students and practitioners would benefit from support and training in this field (Turner, 2020, Turner and Price, 2020, Turner, 2021).
‘Building back Better by Building Back Fairer’
A key focus of the IPPR paper is inequalities in health, with those in more affluent areas, gaining greater access to community, hospice, and home care options, compared to those in the most deprived areas, who are more likely to die in hospital and away from the place of their choice.
However, whilst the IPPR report focusses on ‘building back better’ to reduce these inequalities, previous recommendations in the Marmot Review of health inequalities in England (2020) made the case to ‘Build Back Fairer,’ an argument echoed by the Care Quality Commission in their research on Addressing Inequalities in End-of-Life Care amongst people from Black and minority ethnic communities (2016).
It is well documented that Covid 19 has disproportionately affected Black, Asian, and Minority Ethnic communities, who are more than twice as likely to die from the virus, compared to white people (Guardian, 2021).
The drive to reduce social, regional, and cultural inequalities in end-of-life care corresponds directly to social work values and renders these aspects of bereavement and grief important priorities for the profession, not just during the pandemic but as we move out of lockdown and beyond.
‘The Pandemic is a Portal’
The recent Queen’s Speech demonstrated little evidence of the Prime Minister’s previous promise to ‘fix social care once and for all’ (Albert,2019).
However, as Arundhati Roy writes, ‘the pandemic is a portal’ and thereby provides society with an opportunity to repair the crisis in end-of-life care, identified in the IPPR report.
To achieve this, the report recommends a government strategy which incorporates the values of palliative care, assuring timely, personalised care for everyone, alongside a network of ‘Care champions’ to advocate for dying people.
Further, the gold standard for care set by the hospice sector is recognised by a call for funding and resources, including staff training and support, with a new ‘end of life care academy’, made available to staff and carers.
Finally, the report recognises the importance of specialist mental health and financial support for all those working with people at the end of life.
As we follow the Prime Minister’s ‘road map’ and ease out of lockdown, we have a choice over how we learn from the pandemic. We can maintain the existing inequalities, or choose the different way signposted by this report, remembering that ‘Another world is not only possible, she is on her way’ (Roy, 2020).
I know which option I choose.
Dr Denise Turner
MSW; PhD
Senior Fellow HEA, BASW member
References
Albert, A (2019) Prime Minister Boris Johnson says he has a plan to 'fix the crisis in social care once and for all' Care Home News. Available at: https://www.carehome.co.uk/news/article.cfm/id/1612718/prime-minster-boris-johnson-says-we-will-fix-the-crisis-in-social-care-once-and-for-all
Care Quality Commission (2016) People from Black and minority ethnic communities, A Different Ending: Addressing Inequalities in End of Life Care Available at: https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_BAME_FINAL_2.pdf
Guardian Community Team (2021) UK BAME people: how has the coronavirus pandemic impacted you? Available at: https://www.theguardian.com/world/2021/jan/06/uk-bame-people-how-has-the-coronavirus-pandemic-impacted-you
Kazuyuki ,N, Yoshiaki O, Isseki,M , Ichiro M, Ryouhei I, Yoshinobu M, Tatsuya T, Etsuko U (2019) A Novel Palliative Care Approach Using Virtual Reality for Improving Various Symptoms of Terminal Cancer Patients: A Preliminary Prospective, Multicenter Study. J Palliat Med. 22(6):702-707. doi: 10.1089/jpm.2018.0527. Epub 2019 Jan 24. PMID: 30676847.
Marie Curie UK (2018) What are palliative care and end of life care? Available at: https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care
Marmot, M, Allen, J, Goldblatt, P , Herd,E and Morrison, J (2020) Build Back Fairer: The COVID-19 Marmot Review. The Pandemic, Socioeconomic and Health Inequalities in England. London: Institute of Health Equity. Available at: https://www.health.org.uk/sites/default/files/2020-12/Build-back-fairer--Exec-summary.pdf
Price, M (2021) Supervision in End of Life Care in Turner, D (Ed) (2021) Social Work and Covid-19. Lessons for Education and Practice, Critical Publishing, UK
Roy, A (2020) The Pandemic is a Portal Available at: https://www.ft.com/content/10d8f5e8-74eb-11ea-95fe-fcd274e920ca
Thomas, C (2021) The State of End of Life Care: Building Back Better After Covid -19. Available at: http://www.ippr.org/research/publications/the-state-of-end-of-life-care
Turner, D (2021) 9. ‘From beginning to end’: Loss, Change and meaning -making in the context of Covid 19 , Chapter 9 in Turner, D (Ed) (2021) Social Work and Covid-19. Lessons for Education and Practice, Critical Publishing, UK
Turner, D; Price, M (2020) ‘Resilient when it comes to death’: Exploring the significance of bereavement for the well-being of social work students, Qualitative Social Work,
https://journals.sagepub.com/doi/full/10.1177/1473325020967737
Turner, D and Price, M (2020) How social workers can support people facing inconceivable grief in the pandemic, Community Care, Supporting people facing inconceivable grief in the pandemic (communitycare.co.uk)