#66 Terminology and language around discontinuing dialysis

In the previous episode I spoke with Dr Barny Hole and Dr Emma Murphy about the trajectory of kidney disease, conversations around stopping dialysis and what Advance Care Planning with kidney disease looks like.

We realised there was so much more we had to talk about and met again to explore the complexity of language associated with Palliative and End of Life Care, focusing particularly on language around discontinuing dialysis.

You can hear our discussion in this episode; it was so interesting to explore the variance in our thoughts and highlight the importance of effective communication.

Key messages from guest

• Emma suggests reframing the concept of dialysis withdrawal and moving towards discontinuation when dialysis may no longer be of benefit. 

• Barny explains the importance of understanding trade offs people are willing to explore when considering dialysis.

• The term palliative dialysis is explored as a concept

• The challenges of explaining the perception and medical professions concept of palliative care

• Discontinuing treatment discussions often left to the last stages of an illness

• The word and meaning of “comfort” is explored and put into context by Barny

• We explore the words commonly used to avoid talking openly about death and dying

Resource

• Read the Temel study mentioned by Emma: Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer 

• Access the podcast with Dr Lucy, the first podcast in which I explore To dialyse or not to dialyse? How research can support decision making with Dr Lucy Selman

• Access the Living and Dying with Kidney Disease with Dr Barny Hole & Dr Emma Murphy 

• Watch  Palliative Care PSA - We’re the fire department, not the fire byJared Rubenstein included here to demonstrate how we do everything to avoid using the words “palliative care”

• Find out about Butterfly Volunteers 

• Find out more about the QUALYCARE KIDNEY study: for better care at the end of life set to answer questions around the quality of dying and withdrawal of dialysis

Bio:

Dr Barny Hole

Research Interests

I am a kidney doctor and am studying for a PhD. My research looks at how older people with kidney failure decide between dialysis (a kidney machine) and comprehensive conservative care (treatment of symptoms, social and psychological problems without dialysis).

Every day in the UK ten people older than 65 develop kidney failure. The ‘right’ treatment depends upon what is most important to an individual. Little research is available looking at what older patients with kidney disease want and what is important to them. We know they experience uncertainty when making up their minds. They can feel pressurised to start dialysis and those receiving it can regret starting.

I am currently running the UNPACK study, which will improve our understanding of how people make these decisions. It will help us to support them better and develop systems that better meet their needs. The study arose from my experiences caring for older people with kidney disease. I have treated hundreds of families approaching kidney failure. Research to improve care for people like them is vital.

https://research-information.bris.ac.uk/en/persons/barny-d-hole

Dr Emma Murphy Associate Clinical Professor in Nephrology Nursing – Centre for Care Excellence, University Hospitals Coventry and Warwickshire NHS Trust and Coventry University

Dr Emma Murphy is an Associate Clinical Professor in Nephrology Nursing at the Centre for Care Excellence, a clinical academic partnership model jointly led by Coventry University and University Hospitals Coventry and Warwickshire NHS Trust. Her role combines and integrates both clinical and academic work; leading research and clinical services at the interface between nephrology and palliative care, with a particular focus on improving outcomes for patients with advanced kidney disease. 

Having studied Nursing at King’s College London, she was awarded a National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC) Doctoral Fellowship at Guy’s and St Thomas’ NHS Foundation Trust, graduating with a PhD in Palliative Medicine from the Cicely Saunders Institute, King’s College London.  Over the past 15 years, she has published on the palliative care needs of renal patients including dialysis discontinuation; conservative kidney management and symptom prevalence in advanced kidney disease. Emma is currently leading the QUALYCARE Kidney study as part of a Health Education England/NIHR Integrated Clinical Academic Clinical Lectureship. The study aims to understand the variations in the quality of end-of-life care for patients with kidney disease on dialysis. The study will provide important insights into decision-making, symptom burden, and other palliative outcomes that dialysis patients might expect, so as to best advise patients and improve care as end-of-life nears.