Bureaucratic violence: Professionals' views of the financial experiences of terminally ill migrants

Abstract

Background Having a terminal illness is associated with an increased risk of living in poverty and destitution at end of life. This is more pronounced for migrants who may not have the same social and cultural capital, or local family support, that established citizens have. This paper explores the financial challenges for migrants with a terminal illness. Methodology Qualitative interviews were conducted with healthcare staff, and legal and migration specialists supporting migrants with a terminal illness in the UK. A total of 22 people were interviewed, comprising 14 working within health/palliative care settings, four in legal/policy settings, and four in migrant support. Findings Thematic analysis identified that having a terminal illness as a migrant accompanies severe financial and material challenge. Migrants continued to work while receiving chemotherapy and used unregulated money lenders to stave off poverty. The expense of visa applications, insecure visa terms, and exclusion from statutory and healthcare support combined to produce enormous financial, emotional and physical strain on terminally ill migrants. Interviewees situated these challenges as both impediments to their work supporting migrants, and as constituting a form of bureaucratic violence. Conclusion Financial precarity for migrants with terminal illness was exacerbated by bureaucratic systems and processes (e.g., immigration policy and welfare exclusion). There is urgent need for systemic reform to ensure that good quality of living and dying is not a privilege of the financially secure. However, this is predicated on a political will and interest to improve the lives and deaths of migrants with terminal illness.