Dying at home for people experiencing financial hardship and deprivation: How health and social care professionals recognise and reflect on patients’ circumstances

Abstract

Background: International palliative care policy often views home as the most desirable location for end-of-life care. However, people living in more deprived areas can worry about dying in poor material circumstances and report more benefits from hospital admission at the end of life. There is increasing recognition of inequities in the experience of palliative care, particularly for people living in more deprived areas. Promoting an equity agenda in palliative care means building healthcare professionals’ capacity to respond to the social determinants of health when working with patients near the end of their life. Objectives: The purpose of this article is to present data which reveal how some health and social care professionals view home dying for people experiencing financial hardship and deprivation. Design: This work was framed by social constructionist epistemology. Methods: Semi-structured qualitative interviews ( n = 12) were conducted with health and social care professionals who support people at the end of life. Participants were recruited from one rural and one urban health board area in Scotland, UK. Data collection occurred between February and October 2021. Analysis: Thematic analysis was used to analyse the interview data. Discussion: Our findings suggest that healthcare staff relied on physical clues in the home environment to identify if people were experiencing financial hardship, found discussions around poverty challenging and lacked awareness of how inequities intersect at the end of life. Health professionals undertook ‘placing’ work to try and make the home environment a suitable space for dying, but some barriers were seen as insurmountable. There was recognition that increased partnership working and education could improve patient experiences. We argue further research is needed to capture the perspectives of individuals with direct lived experience of end-of-life care and financial hardship.

Reflecting on choices and responsibility in palliative care in the context of social disadvantage

“…An issue that has arisen from recent research in the United Kingdom concerns the ethical, professional, and practical challenges experienced by people providing palliative care in the context of socioeconomic disadvantage and how they should respond. [8][9][10][11] Finding a way to support healthcare professionals to acknowledge and unpack some of these challenges and tensions is urgently needed, particularly given the pervasive social inequalities in the United Kingdom, including at the end of life. 1,[11][12][13][14] Within and beyond the United Kingdom, this objective is relevant for colonised and ethnically marginalised peoples who are affected by racism and cultural marginalisation within the palliative care context.…”

“…[8][9][10][11] Finding a way to support healthcare professionals to acknowledge and unpack some of these challenges and tensions is urgently needed, particularly given the pervasive social inequalities in the United Kingdom, including at the end of life. 1,[11][12][13][14] Within and beyond the United Kingdom, this objective is relevant for colonised and ethnically marginalised peoples who are affected by racism and cultural marginalisation within the palliative care context.…”

“…This raises questions for the palliative care profession regarding how choice and responsibility are understood and responded to in the context of social inequity and structural disadvantages. 11 How do palliative care professionals frame choices and decision-making in this context? What is the impact of this framing on patients and families?…”

A systematic review on the impact of financial insecurity on the physical and psychological well-being for people living with terminal illness

“…The lack of an agreed definition or terminology for financial insecurity in a palliative care setting could make initiating conversations about the topic very difficult for healthcare professionals, further exacerbating inequities to support. 67 This is particularly important when reflecting upon findings by Marie Curie, that people who have a terminal illness are more likely to experience financial insecurity. 15 The Marie Curie report estimated that in the UK, every year, 90,000 people die in poverty.…”