Objectives Low health literacy among older adults is associated with limited engagement in end-of-life care plans, more hospitalisations and excess mortality. Frequently, older patients derive no survival benefit from dialysis and quality of life often deteriorates with dialysis. Older dialysis patients’ values and wishes are often unknown during key healthcare decision-making and many endure medically intensive end-of-life interventions . The objectives of this study were to examine older dialysis patients’ understanding of haemodialysis, their engagement in end-of-life care planning and their satisfaction with life on haemodialysis.
Methods 15 older dialysis patients participated in qualitative semi-structured interviews in two haemodialysis units . Thematic saturation was reached. Thematic analysis, applied inductively, distilled the data.
Results Themes identified included disempowerment which reflected limited health literacy, poor advance care planning compromised well-being and haemodialysis compromised their core values.
Conclusion Health literacy among older dialysis patients appeared poor, patient empowerment was limited and participation in shared decision-making and advance care planning suboptimal. Consequently, complex healthcare decision-making, including haemodialysis may jeopardise patients’ core values. These findings have significant implications for the validity of the informed consent process prior to dialysis initiation. Improved health literacy through enhanced patient education and better communication skills for clinicians are necessary to promote patient participation in shared decision-making. Clinician training to facilitate discussion of patients’ values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with individual core values. This will optimise patient-centred care.
- end-of-life care
- renal failure
- spiritual care
Data availability statement
All data relevant to the study are included in the article.
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Contributors JOR as the guarantor and lead researcher conducted a literature review, interviewed all study participants, transcribed and analysed all interviews and wrote this article. Co researchers, PMK, HN and AS interrogated and refined the interview prompt guide, PMK and HN analysed the transcripts and where divergence occurred, reached consensus through discussion with JOR. PMK, HN and AS refined the article.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.