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Living long or living well : the dilemma for older people considering dialysis


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Raj, R ORCID: 0000-0003-4781-3255 2019 , 'Living long or living well : the dilemma for older people considering dialysis', PhD thesis, University of Tasmania.

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One in three Australians are at increased risk for kidney disease. Involvement of the kidney can occur as a primary event, with a process that starts in the kidneys, or arise as a complication of other systemic illnesses, most notably systemic hypertension and diabetes mellitus (both of which are common afflictions, seen in about 6 million and 1.7 million Australians respectively). Patients who develop kidney involvement run the risk of progression of the illness to terminal, end-stage kidney failure. Once organ failure has set in, patients will require close monitoring and intensive treatment; such patients are often offered dialysis treatment or kidney transplantation, depending on circumstances. Currently, about 13,000 adults in Australia are being treated with dialysis therapy for end-stage kidney failure.
Dialysis was initially conceived as life-sustaining therapy, used until the kidney function recovered. Over the years, indications have expanded, and treatment is now continued even when there is no hope of recovery of renal function, in a pathway referred to as maintenance dialysis. Many countries now provide dialysis free of cost to patients; this is obviously not possible in resource-poor environments.
Dialysis typically consists of the removal of excess fluid and metabolic waste by exchanging these substances across a semipermeable membrane. There are two common types of dialysis: haemodialysis, where an artificial semipermeable membrane is used to remove waste from the bloodstream, and peritoneal dialysis, where fluid is instilled into the abdomen and the patient’s own peritoneal membrane is used as the filter. Dialysis can be performed either within a dialysis unit or in a patient’s home.The latter requires that patients be trained to perform dialysis by themselves and therefore is not suitable for everyone.
Dialysis treatment is not without problems. Patients undergoing this treatment have a high mortality rate, mainly contributed by accelerated cardiovascular disease. Dialysis is an intrusive treatment, requiring patients to undertake sweeping changes in lifestyle and to commit large periods of time to therapy. While continuing on dialysis, several patients, especially the elderly, suffer progressive functional and cognitive impairment, with a low quality of life. In some older patients with multiple other coexisting illnesses, starting dialysis may not significantly prolong life either, calling into question the benefit from undertaking this complex treatment. Such patients may actually be better managed with conservative, non-dialysis pathways of care. These considerations are relevant since across the world, the number of older individuals on dialysis treatment is increasing. For instance, those aged 65 and over are the fastest growing demographic group among patients new to dialysis in Australia.
When contemplating treatment options, the length of survival with or without dialysis is the outcome most commonly considered by patients, clinicians and researchers. However, patients and families have other concerns too, such as quality of life and independence. Clinicians are faced with a relative paucity of data regarding these other outcomes that matter to patients. Doctors may even avoid discussions about unfavourable consequences, particularly if they find such conversations uncomfortable. The actual, day-to-day experience of dialysis, and the significant changes required to patients’ lifestyles are not discussed very often. With inadequate information, patients may tend to simplify the choice between dialysis treatment or conservative management as simply a choice between living longer or dying sooner. Inappropriateselection of therapy could lead to consequences such as deteriorating quality of life, worsening frailty, increasing morbidity or unexpected short survival.
Significant numbers of patients regret the decision to start dialysis or withdraw from therapy after starting. In Australia in 2017, withdrawal from dialysis was the most common cause of death among patients on dialysis; 82% of these withdrawals occurred in those 65 and over, and a third of all withdrawals occurred for psychosocial rather than medical reasons (source: ANZDATA annual reports for 2018). Against this backdrop, we were interested in studying the experience and outcomes of treatment among elderly individuals and investigating whether they could be predicted or modified so that poor outcomes and needless suffering could be avoided.
We used various analytic approaches. Through means of an extensive scoping review, we collected information available in the literature that was likely to be useful in discussing outcomes of treatment of end-stage kidney disease with patients and their families. We also analysed quality of life through the lens of symptom burden, with the understanding that physical symptoms have significant effects on health-related quality of life. We explored important clinical outcomes for patients through qualitative research, by conducting semi-structured interviews that elicited patient perspectives.
The scoping review format was used for the literature review in order to gather all the available information from a wide variety of sources, both published and ‘grey’ literature. The main questions addressed in the review were as follows: markers of survival, factors influencing quality of life, available information about the lived experience of dialysis in older patients, and finally, the described information needs of older patients and their carers. We published the protocol for the scoping review beforehand in a reputed open-access journal. In the review, 248 articles were included for final analysis after 15,445 were screened. Research that studied prognostic factors was highlighted; details of prognostic indices for older people were collected and comparisons provided between conservative management and dialysis. Relatively few articles addressed quality of life. We classified the factors affecting quality of life into modifiable (e.g., symptom burden, physical status/functional ability, frailty, nutrition, depression) and non-modifiable (e.g., age, number of comorbidities) groups. With data from the lived experience of older adults with end-stage kidney disease (ESKD) and descriptions of their information needs, we provided a summary of areas to be covered in discussions with older patients regarding treatment options.
We surveyed our dialysis population and demonstrated a significant symptom burden. This burden was similar in older (age greater than 70 years) and younger patients. The symptom burden was correlated with quality of life. We also showed that symptoms were poorly recognised by nurses and doctors caring for these patients. This could potentially be one of the reasons for a low quality of life in the dialysis population.
In order to improve symptom recognition, the use of patient-completed symptom surveys is recommended; we validated the IPOS-Renal symptom survey – the most widely used survey in Australian dialysis patients today - in a separate study. This was the first published validation study of this commonly-used symptom survey. These findings generated two peer-reviewed publications and were also submitted at conferences as posters and oral presentations.
Our qualitative study asked older people about their outcomes on dialysis and the factors influencing these outcomes. We identified themes of loss (of independence, of time, of activities undertaken prior to starting dialysis) and uncertainty (uncertain future, cyclical symptoms, unpredictable tiredness after dialysis sessions) as factors contributing to poor outcomes. Meanwhile, acceptance and adaptation, with the support of carers and healthcare professionals were the common themes among factors enabling better outcomes.
Our recommendations for clinicians advising older patients with end-stage renal failure include the use of prognostic indices, documentation of symptoms using patient-completed surveys, exploration of patient expectations, extensive discussions about the potential impact of treatment on lifestyle, the tailoring of information to suit learning styles of older individuals and the need for baseline assessments of nutritional status, physical and cognitive function. To ensure good outcomes in those that choose dialysis, we recommend ensuring appropriate skill-sets in staff assisting with dialysis treatment (particularly needling of AV fistulae), making efforts to ensure physical comfort in dialysis units, fostering relationships between patients and staff and focusing on the needs of carers.
Prognostic uncertainty can never be completely resolved, and these difficult decisions about treatment will continue to be made based on individual circumstances. During this process, it is the duty of the clinician to provide relevant, patient-centred advice in an easily understandable format. Regardless of their choice of therapy, patients ought to be well informed, supported and regularly monitored. We have suggested practical measures for clinicians to achieve these goals.

Item Type: Thesis - PhD
Authors/Creators:Raj, R
Keywords: Elderly; Renal failure; Dialysis; Outcomes; Information needs; Lived experience
DOI / ID Number: 10.25959/100.00034516
Copyright Information:

Copyright 2019 the author

Additional Information:

Chapter 2.1 contains the published version of: Raj, R., Ahuja, K. D. K., Frandsen, M., Jose, M., 2016. Older patient considering treatment for advanced renal disease: protocol for a scoping review of the information available for shared decision-making, BMJ open, 6(12), e013755. It is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

Chapter 2.2 appears to be the equivalent of a pre-print version of an article published as: Raj, R., Thiruvengadam, S., Ahuja, K. D. K., Frandsen, M., Jose, M., 2019. Discussions during shared decision-making in older adults with advanced renal disease: a scoping review, BMJ open, 9(11), e031427. It is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

Chapter 3.1 contains the published version of: Raj, R., Ahuja, K. D. K., Frandsen, M., Jose, M., 2017. Symptoms and their recognition in adult haemodialysis patients: Interactions with quality of life, Nephrology, 22(3) 228-233

Chapter 4.2 contains the published version of: Raj, R., Ahuja, K., Frandsen, M., Murtagh, F. E. M., Jose, M., 2018. Validation of the IPOS-renal symptom survey in advanced kidney disease: A cross-sectional study, Journal of pain and symptom management, 56(2), 281-287

Chapter 5.2 appears to be the equivalent of a pre-print version of an article published as: Raj, R., Brown, B., Ahuja, K., Frandsen, M., Jose, M., 2020. Enabling good outcomes in older adults on dialysis: a qualitative study, BMC nephrology, 21, 28. © The author(s). 2020. The article is distributed under the terms of the Creative Commons Attribution 4.0 International License (, which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made

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