Recruitment to this study relied on clinician assessment with patient awareness of end of life care need and the resulting sample comprised a greater number of people on a conservative care treatment plan than those receiving dialysis. This might be explained by patients on a conservative pathway having thought about or made decisions about not undergoing dialysis and therefore being more aware of end of life care than those on renal replacement therapy. Notwithstanding this and the proportion of conservative care patients in the sample, a quarter lacked awareness of end of life care or their identified need for it.
The excerpts from patient interviews demonstrate the range of understanding amongst patients with ESRF and how it was associated with different factors such as their holistic view of their health, lack of awareness of services, and misunderstandings of information given during healthcare encounters. These findings concur with previous research with a majority White kidney patient population with advanced kidney disease in Canada which found patients lacked knowledge of end of life care and palliative care, were willing to discuss end of life care but relied on their clinicians to raise the issue at the right time and had not discussed end of life care issues within the previous year [ 24 ].
The survival for older people on dialysis and conservative care is similar [ 23 ] suggesting an equal need for end of life care across different treatment pathways, however, our findings and those from other studies suggest limited access to end of life care, at least in the form of communication and advance care planning, for some South Asian patients. Our analysis of the care provider focus groups provides insight into factors behind the lack of patient awareness of end of life care by suggesting that not all clinicians who have contact with kidney patients consider the whole picture or communicate it with patients.
Reasons for this may be that they do not have time; or all the information; do not think it is appropriate or do not have the communication skills, including access to a translator if there is a language barrier. The latter, care providers suggested, was reflective of their experience of caring for South Asian kidney patients if family members were relied upon for translation which might be inaccurate, and this is a problem that has been reported elsewhere [ 25 ].
As communication with patients is part of end of life care, patients who do not speak English may miss out on early communication about their condition as well as on regular and on-going opportunities where concerns could be raised, if there is limited translation available e. Other researchers have drawn attention to some of these issues before, for example, the difficulties of mediated conversations in cancer care [ 26 ] and the need for advanced communication training for clinicians in the kidney setting [ 27 ].
They have highlighted the importance of understanding patient experience and the need for further research into the influence of culture on quality and access to end of life care for patients.
Family Practices in South Asian Muslim Families
The action research approach employed here enabled researchers to observe and discuss access issues close up with South Asian patients and their care providers through reflection on the recruitment process in this exploratory project. Our analysis of the data from these discussions has suggested similarities between South Asian patient experience and that of White European and majority population participants in other kidney care research.
Care provider data also captured a perception that it is education rather than ethnicity per se that determines access to end of life care and which is likely to be a factor across all ethnic groups. The way care providers work with the diversity of individuals within their patient population is an issue of cultural competence and this suggests that a fluid and individualised interpretation of the concept is more useful than an ethnocentric focus often found in the literature [ 28 ].
Recruitment was facilitated at three of the four sites by support workers, one of whom was bilingual, and they were an additional source of information about the research and a link to the team of bilingual research interviewers. On the site without this extra support gatekeeping by family members was a barrier to recruiting patients. Although recruitment to a research interview and access to care are different things they both require communication about what can be a sensitive topic for patients, their families and care providers. The recruitment and interviews were achieved in this study through support workers and trained bilingual research interviewers who were able to overcome language barriers and offer a level of cultural competence in discussing end of life care with participants.
Research that has investigated the impact of clinicians discussing end of life care with patients found that rather than reducing hope participants benefitted from a realistic focus which helped to maximise support from important relationships [ 30 ]. However that finding related to a predominantly White population and the authors acknowledged that ethnicity and religion can shape individual attitudes to advance care planning.
Our exploratory study together with the observations of other researchers [ 31 ] identifies a need for more research with ethnic minority patients, and importantly their families, to understand better the role of culture in access to end of life care. Reflection on the recruitment of patients to this study revealed the influence of culture through organisational and system wide attitudes towards acknowledgment and talking about end of life. The dominant kidney specific factor with respect to this is the potential of renal replacement therapy i.
These results suggest that communication with patients about end of life issues is unlikely to take place at haemodialysis units despite the on-going and frequent contact, because the focus of care is primarily on the practical task of dialysis and there are time constraints as well as privacy issues. The lack of familiarity and understanding of a palliative approach highlighted through provider reports of talking about future care and born out through the recruitment process and patient interviews, highlights an overarching lack of awareness of the concept of end of life kidney care.
Palliative care and supportive care are key elements which underpin quality end of life care and these results seem to indicate a lack of consensus amongst services and a lack of early communication with individual patients about how good end of life can be achieved. Limitations of this research were that patient recruitment was based on clinician judgement of end of life care needs rather than on a specified definition together with their perception of patient awareness.
This may have influenced the patient sample which was less than the 30 anticipated as well as the results and was reflected in the data that the patients recruited were likely to be atypical by having had some discussion of their life limiting condition. Not only does this suggest that access to end of life care and advance care planning is likely to be even less than our findings describe, it draws attention to the issue of heterogeneity within the broad South Asian ethnic grouping which questions the usefulness of ethnicity rather than culture as a concept and key determinant of access.
Results obtained this way however enabled a realistic picture of understanding and communication about end of life care between care providers and patients in the kidney setting.
As it was based on the recruitment criteria and process outlined above it was possible that there were other patients who were aware of their end of life care needs but who had not communicated with professionals about it. Although this exploratory qualitative action research project does not claim generalizability it does seek to understand some of the issues and concepts concerning inequalities in access.
Whilst a focus on South Asian ethnicity is relevant to the increased risk and poorer kidney outcomes [ 2 , 3 ] associated with diabetes, progression of kidney disease and shortage of compatible donor organs which have genetic and physiological dimensions that relate to ethnicity, these observations on recruitment indicate it is individual and organisational culture and context in relation to awareness, understanding and communication of end of life care which are likely to be the important moderators of access.
As an early phase study, this research benefited from an action research approach which was able to draw on the experience of the variety of care providers working in kidney care. This enabled both the recruitment of patients who hitherto have not been included in research and provided insight into the research process and data collected.
To take this research forward the next cycle of the research would include a broader inclusion of ethnic groups to enable a comparative element, include the participation of families and informal carers and consider the later stages of the end of life kidney care. Recruitment of South Asian patients with kidney disease by care providers to this study highlighted some of the barriers to access to end of life care in the kidney setting which care providers have to work with. These were: difficulties in identifying the end of life phase; and lack of awareness of end of life care; communication which can be influenced by family members as gatekeepers; and the different end of life kidney care scenarios.
Reflection on engaging with South Asian patients at end of life provided insight into the complex setting of end of life in kidney care and the need for future research, including with family carers, to explore the experience of South Asian patients with kidney disease in relation to culture still further. Action research was a useful methodology for getting close to the issues raised and allowing reflection on these through the recruitment process.
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All authors read and approved the final manuscript.