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Advance care planning and health literacy in older dialysis patients: qualitative interview study
  1. Julien O Riordan1,2,
  2. P M Kane3,4,
  3. Helen Noble5 and
  4. Andrew Smyth6,7
  1. 1Palliative Medicine, IPU, Galway Hospice Foundation, Renmore, Ireland
  2. 2School of Medicine, National University of Ireland Galway School of Medicine, Galway, Ireland
  3. 3Community Palliative Care Services, Laois, Longford, Westmeath, Mullingar General Hospital, Mullingar, Ireland
  4. 4Palliative Medicine, Royal College of Surgeons in Ireland, Dublin, Ireland
  5. 5School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
  6. 6Clinical Research Facility, National University of Ireland Galway, Galway, Ireland
  7. 7Nephrology, Galway University Hospitals, Galway, Ireland
  1. Correspondence to Dr Julien O Riordan, Palliative Medicine, IPU, Galway Hospice Foundation, Renmore, Galway, Ireland; julien.oriordan{at}gmail.com

Abstract

Objectives Low health literacy among older adults is associated with limited engagement in end-of-life care planning, higher hospitalisation rates and increased mortality. Frequently, older dialysis patients derive no survival benefit from dialysis and their quality of life often deteriorates further on dialysis. Older dialysis patients’ values and wishes are frequently unknown during key healthcare decision making and many endure medically intensive end-of-life scenarios. The objectives of this study were to explore older dialysis patients’ understanding of haemodialysis, to explore their engagement in end-of-life care planning and to explore their satisfaction with life on haemodialysis.

Methods 15 older dialysis patients participated in qualitative semistructured interviews in two haemodialysis units in Ireland. Thematic saturation was reached. Thematic analysis, applied inductively, was used to distill the data.

Results Themes identified included disempowerment among participants reflected limited health literacy, poor advance care planning compromised participant well-being, haemodialysis compromised participants’ core values.

Conclusion Health literacy levels among older dialysis patients are poor, patient empowerment is limited and their participation in shared decision making and advance care planning is suboptimal. Consequently, healthcare decision making, including haemodialysis, may jeopardise patients’ core values. Improving health literacy through enhanced patient education and improved communication skills training for clinicians is 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 patients’ core values. This approach will optimise the circumstances for patient-centred care.

  • end of life care
  • quality of life
  • terminal care

Data availability statement

All data relevant to the study are inlcuded in the article.

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Data availability statement

All data relevant to the study are inlcuded in the article.

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Footnotes

  • Contributors JOR as the lead researcher conducted a literature review, interviewed all study participants, transcribed and analysed all interviews and wrote this article. Coresearchers, 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; internally peer reviewed.

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