End-of-life care planning for ethnically diverse kidney patients in the COVID-19 era.

backgroundEnd-stage kidney disease (ESKD) is most prevalent amongst people from minority ethnic groups and people receiving haemodialysis were considered to be ‘clinically extremely vulnerable’ during the Covid- 19 pandemic. Covid-19 impacted the health of those from ethnically diverse backgrounds disproportionally. The Covid-19 pandemic brought death and dying to the forefront of public discourse, yet few studies have explored the impact of the Covid-19 pandemic on individual’s understanding of and willingness to engage in end-of-life care planning conversations. In addition, few studies have explored end-of-life care planning in the context of ESKD, and even fewer studies have considered the complex dynamics of ethnicity and end-of-life care planning in ESKD. In this study we explored the experiences of an ethnically diverse group of patients, care givers, and healthcare professionals, who had engaged in end-of-life care planning discussions during the Covid-19 pandemic.

methodsIn this qualitative study, 14 ethnically diverse patients (Indian, Pakistani and African Caribbean), including 11 male with ESKD on haemodialysis, 15 bereaved family caregivers including 11 male and four were female from Black British, Indian and Latino backgrounds and 6 healthcare professionals took part in a semi-structured interview, either face-to-face or remotely. Data were analysed thematically using Braun and Clarke framework.

resultsThis paper presents seven key themes. Four themes describe the experiences of patients and bereaved family caregivers and suggest that family caregivers were a key source of information and support for patients, yet they had differing levels of understanding about the nature and prognosis of ESKD. Patients and bereaved family caregivers described limited opportunities to engage in discussions about future care and a limited awareness of both the ReSPECT form and discussion process and instead, often made sense of ESKD in light of their faith. A further two themes describe the experiences of healthcare professionals suggest that healthcare professionals see end-of-life care planning as necessary but difficult and stress the need for further training. A final seventh theme describes a shared perception, amongst patients, bereaved family caregivers and healthcare professionals regarding the lack of impact of Covid-19 on end-of-life care planning in the context of supporting ethnically diverse people living with ESKD.

conclusionsFurther work is needed to explore how best to improve understanding and engagement with end-of-life care planning discussions in dialysis patients from diverse ethnic backgrounds.