A qualitative exploration of the factors that influence healthcare decision-making in the management of end stage kidney disease in older adults in Ireland.
Advance care planning, older adults, decision making, dialysis, nephrology
Chronic Kidney Disease is defined as the presence of kidney damage or decreased kidney function. End stage kidney disease is the most advanced stage of chronic kidney disease where kidney function has declined to the extent that the kidneys cannot adequately function alone, and patients typically require renal replacement therapy (including dialysis or kidney transplantation).
When compared to dialysis, conservative care of advanced kidney disease results in patients spending less time in hospital. These patients are more likely to have been engaged in a discussion of their wishes for the future; advance care planning, and often choose to die at home or in a hospice setting rather than in hospital. Additionally, previous studies indicate that patients approaching end stage kidney disease are willing to sacrifice significant life expectancy in order to minimise the burden and restriction imposed by dialysis.
Older patients, defined as those aged 75 years and over, with end stage kidney disease are the largest group of patients internationally that commence dialysis every year. However, research shows that many of these patients gain little survival benefit from dialysis.
Limited studies provide information about the factors which influence the clinical care provided to these patients. Studies suggest that advance care planning is not a routine component of patient care and few studies have explored the barriers in this regard. We also understand little of these patients’ priorities and their wishes in regard to their future healthcare. This research aims to address this gap in the literature.
Click here to access Dr. Julien O’Riordan’s full thesis.
The objective of this research is to understand the factors which influence the clinical care of older adults with end stage kidney disease in Ireland.
The research consisted of two studies with two different study groups: (i) Nephrologist Study and (ii) Patient Study. Both groups were studied separately. These studies were prompted by a case study of an elderly dialysis patient. (see Research Outputs).
The aim of the Nephrologist Study (i) was to explore the factors which influence nephrologists’ (medical doctors specialising in kidney care) clinical decision-making when managing end stage kidney disease in older patients. In particular, the study examined their experience of dialysis, conservative management of end stage kidney disease, dialysis withdrawal and end of life care with this group of patients.
The aim of the Patient Study (ii) was to explore the experience of older dialysis patients in regard to advance care planning including end of life care discussion. The study also explored their satisfaction with life on dialysis.
Both studies used qualitative interviews and thematic analyses to gather and analyse data. Study participants completed semi-structured interviews and study recruitment continued until no new themes were revealed. This approach was considered most likely to generate rich data, as it allowed participants to speak freely whilst the interview topic guide ensured consistency of approach across all interviews, adding to the credibility of the data. The interviewer sought clarification, as required, during the interviews.
Dr O’Riordan explains why she began this research: “The inspiration for this research arose from a clinical encounter which I had with an older lady on dialysis who I visited at home. Her persistence with dialysis derived from her belief that she should be grateful that it was keeping her alive. However, her quality of life had deteriorated significantly and she felt as though she were living for dialysis rather than living with dialysis. This encounter had a lasting effect on me. It illustrated to me the importance of exploring in depth the factors which influence an individual’s health care decision-making. I acknowledge this lady for inspiring the research which followed.”
Twenty nephrologists working in Ireland and fifteen older dialysis patients participated in the studies. The findings of the Nephrologist Study revealed that nephrologists tended to avoid end of life care discussions reflecting limited communication skills training, a fear of upsetting patients and time constraints. In regard to the Patient Study, additional identified barriers to advanced care planning included limited understanding of end stage kidney care and dialysis by participants. Participants in the Patient Study appeared disempowered, they displayed limited health literacy (the ability to obtain, read, understand, and use healthcare information) and limited engagement in advance care planning. Indeed, for many, the very fact of being on dialysis appeared to jeopardise their core values and their overall well-being.
Advance care planning, including end of life care planning, is not routinely addressed with older dialysis patients in Ireland. Consequently, healthcare decision-making, including the commencement of dialysis, may not reflect what is of most importance to patients. These studies highlight the need for enhanced patient education and improved communication skills training for clinicians to optimise shared decision-making and to ensure timely advance care planning.
June 2017 to Dec 2021
Research Lead: Dr. Julien O’Riordan University Hospital Galway
Impact of this research.
Currently, we are in the process of establishing a specialist renal palliative care out-patient clinic in University Hospital Galway and Merlin Park Hospital. Nephrologists will be able to refer patients with advanced kidney disease who have specialist palliative care needs for clinical review by a consultant in Palliative Medicine.
O’Riordan J, Kane PM, Noble H, Beatty S, Mannion E, Murtagh C, Harnett I, Smyth A. When Less Is More: Optimizing Care for Elderly Patients Failing to Thrive on Dialysis. J Pain Symptom Manage. 2018 Apr;55(4):1241-1245. doi: 10.1016/j.jpainsymman.2017.12.475. Epub 2017 Dec 14. PMID: 29248567.
O’Riordan J, Noble H, Kane PM, Smyth A. Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study. BMJ Support Palliat Care. 2020 Dec;10(4):e39. doi: 10.1136/bmjspcare-2018-001759. Epub 2019 Jun 25. PMID: 31239255.
O Riordan J, Kane PM, Noble H, Smyth A. Advance care planning and health literacy in older dialysis patients: qualitative interview study. BMJ Support Palliat Care. 2021 Nov 15:bmjspcare-2021-003273. doi: 10.1136/bmjspcare-2021-003273. Epub ahead of print. PMID: 34782344.
2019 Irish Association of Palliative Care Education & Research Seminar. Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study. Winner of Dr Mary Redmond Medal.
2019 UK Kidney Week. British Renal Association and British Renal Society. Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study.
2021 Irish Association of Palliative Care Education & Research Seminar. Advance care planning and health literacy in older dialysis patients: qualitative interview study. Winner of best research presentation.
Kane PM, Vinen K, Murtagh FE. Palliative care for advanced renal disease: a summary of the evidence and future direction. Palliat Med. 2013 Oct;27(9):817-21. doi: 10.1177/0269216313491796. Epub 2013 Jun 13. PMID: 23765187.
O’Halloran P, Noble H, Norwood K, Maxwell P, Shields J, Fogarty D, Murtagh F, Morton R, Brazil K. Advance Care Planning With Patients Who Have End-Stage Kidney Disease: A Systematic Realist Review. J Pain Symptom Manage. 2018 Nov;56(5):795-807.e18. doi: 10.1016/j.jpainsymman.2018.07.008. Epub 2018 Jul 17. PMID: 30025939; PMCID: PMC6203056.
Carswell C, Noble H, Reid J, McKeaveney C. Conservative management of patients with end-stage kidney disease. Nurs Stand. 2020 Jun 3;35(6):43-50. doi: 10.7748/ns.2019.e11416. Epub 2019 Dec 23. PMID: 31867916.