In this episode I talk with Dr Barny Hole, a  kidney doctor and researcher, about patient preferences for kidney failure treatments. We discuss a review paper and focus specifically on the biomedical versus person-centred paradigms of nephrology practice. Our discussion has relevance to all long-term condition decision making.

Key messages

• Biomedical vs person‑centred paradigms in nephrology and wider medicine

• All kidney failure decisions as trade‑offs based on individual values and preferences

• Why “the best treatment” is meaningless without asking “best for whom?”

• Clinicians’ have a role in shifting from treatment‑first to person‑first conversations

• Power, paternalism, and the importance of supporting a genuine “no” to treatment

• Using clear, unbiased information and decision aids to counter clinician bias

• Measuring what matters to patients (choice, involvement, satisfaction), not just survival

• Avoiding abandonment when people decline invasive or “gold standard” treatments

• The artificial divide between palliative and “active” treatment

• How personal preferences change over time and across life stages

• Despite this kidney-focused work, there are parallels  to all life‑limiting conditions

Resource

• Hear the podcasts:

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

  • Terminology and language around discontinuing dialysis with Dr Barny Hole & Dr Emma Murphy

Bio

I am a kidney doctor and researcher. My research looks at how health systems can get the right balance between preventative treatment, management of disease, and care focussed on people’s quality of life.

My PhD looked at how older people with kidney failure decide between dialysis (a kidney machine) and conservative kidney management (treatment of symptoms, social and psychological problems without dialysis). I showed that they would accept shorter lives if this protected their independence and decreased treatment burdens such as hospital visits, intrusion into the home, and time lost to treatment. Subgroups showed marked differences in their acceptance of hospital time vs. treatment at home, and readiness to relinquish survival to maintain independence. Family members were crucially important in decision-making, but appeared less willing to renounce potential life prolongation than patients were for themselves. Whilst characteristics such as age did not appear to influence individuals’ preferences, partnered patients valued life-prolongation more than the unpartnered.

My study highlights the need for health services that offer greater individualisation and choice, prioritise independence, and minimise intrusion from treatment. It leaves important questions: i) were the trade-offs elicited unique to participants considering kidney failure, or did I inadvertently capture higher-level preferences amongst older people living with multiple long-term conditions? and ii) were participants’ preferences fixed, or will they change over time?

I am developing follow-on research with a more inclusive group of older people to answer the following question: What outcomes do older people with multiple long-term conditions prioritise when considering medical treatments, and how do the trade-offs made between perceived benefits and burdens change as they age and experience life events?