Abstract
COVID-19 is likely to have compromised the management of end-of-life care. Disruptions include the inability to respect advanced care planning, offer support to the person dying, and the failure to celebrate the person's life within local customs. Where people work to deliver high-quality care, such disruption can lead to carers experiencing moral distress, which can have behavioural and physical consequences if unresolved. This chapter describes the leading theories of the causes, experiences, and prevention of moral distress for carers. We then utilise data from eight end-of-life interviews that supply evidence for carers experiencing moral conflict distress, moral constraint distress, moral uncertainty distress, retrospective moral distress, and moral residue to underpin three case stories about the disruptions to end-of-life care in the intellectual disability community.
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McCarron, M., Kelly, K., McCallion, P., Burke, É., Haigh, M., Wormald, A. (2022). Supporting People with Intellectual Disability at End of Life: Moral Distress Among Staff Caregivers During COVID-19. In: Stancliffe, R.J., Wiese, M.Y., McCallion, P., McCarron, M. (eds) End of Life and People with Intellectual and Developmental Disability. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-98697-1_9
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