#65 Living and Dying with Kidney Disease with Dr Barny Hole & Dr Emma Murphy

In this episode it is my pleasure to talk with Dr Barny Hole and Dr Emma Murphy. Barny is a kidney doctor currently studying for a PhD. Barny’s research looks at how older people with kidney failure decide between dialysis and comprehensive conservative care.

Emma is an Associate Clinical Professor in Nephrology Nursing with a combined clinical and academic role. Emma is currently leading the QUALYCARE Kidney study which aims to understand the variations in the quality of end-of-life care for patients with kidney disease on dialysis.

We explore the trajectory of kidney disease, conversations around stopping dialysis and what Advance Care Planning with kidney disease looks like.

The episode is one of two that we recorded. We touch on language and terminology in this episode and agree to talk again, focusing on the complexity of language associated with Palliative and End of Life Care and discontinuing treatment. You can hear that discussion in the next episode.

Key messages from guest

• Barny explains how he came to view kidney medicine as a career choice and how he came to focus on the whole person with the illness.

• We explore the bias that exists with cancer diagnosis compared to a long term chronic illness.

• Emma shares the impact of witnessing difficult deaths early in her career and the impact of hearing the first time a patient requested not to pursue dialysis. This led to Emma’s work in developing renal palliative care.

• Emma explains the multiple illness trajectories in kidney disease.

• Barny shares how we can focus on treatment rather than a person.

• We touch on the terminology, looking at the word “withdrawal” - the catalyst to our next podcast.

• Making shared decisions and informing people well is often done poorly.

• Barny talks about the need for enhanced training and MDT working on the delivery of Advance Care Planning

• Clinical bravery: Emma talks about how we need to be clinically brave to have Important Discussions

Resource

• Find out more about the QUALYCARE KIDNEY study: for better care at the end of life 

• Read Redefining the "planning" in advance care planning: preparing for end-of-life decision making Rebecca L Sudore  1 , Terri R Fried 

• Access the Marie Curie Make end of life care fair information page

• Read the Health and Care Act 2022 

• Click on link to read Baroness Finlay of Llandaff's amendment, Clause 16 Health and Care Act 2022

• Access  Illness trajectories and palliative care Scott A Murray  1 , Marilyn Kendall, Kirsty Boyd, Aziz Sheikh

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.