End-stage kidney disease

2nd August 2019

Increasing numbers of older adults are living with end-stage kidney disease.  For those with a combination of medical conditions, conservative management is often a viable option because the burden of dialysis would outweigh the limited benefits.  Conservative management for kidney failure means that the patient’s health care team continues care without dialysis or a kidney transplant. Instead care focuses on quality of life and symptom control.

Common symptoms in conservatively management end-stage kidney disease include fatigue, anorexia, nausea and vomiting, pain and pruritis.  The disease is associated with biographical disruption and a loss of sense of self.  But little is known about of patients’ own perceptions of their illness.

Researchers at the Cicely Saunders Institute decided to explore older adult patients’ experience and understanding of conservatively management end-stage disease. They interviewed 20 older adults from 3 renal units in the UK.  The median age was 82 – (age range 69 – 95) 9 women, 11 men.

The patients described the invisibility and intangibility of kidney disease. They described a spectre-like presence, sapping their energy and holding them down. It was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.

Not being able to identify the symptoms that were the result of kidney disease adversely affected their wellbeing and sense of self.  Understanding these challenges is critical in the management of conditions such as end-stage kidney disease where an increase in symptom distress may suggest a marked deterioration in their condition, or  a change in phase of illness.

Researchers concluded that clinical services need to recognise the illness experience, alongside more traditional symptom-led approaches to deliver the best patient care. Recognizing the invisibility, intangibility and disconnectedness that patients feel could be achieved by improved clinical assessment, communication and education, and peer and professional support.

Bristowe K, Selman LE, Higginson IJ, Murtagh FEM. Invisible and intangible illness: a qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease. Ann Palliat Med. 2019. 10.21037/apm.2018.12.06.