What is dialysis like?

Now I know there are health risks associated with haemodialysis – before working in this area, like most people I guess, I believed dialysis was a safe and effective, if time-consuming, activity. In fact the average life expectancy of someone on dialysis is the same as a 70 year old, no matter what age you are.

Dialysis is not undergone on a whim, that’s clear. But, on the other hand, most of the management of chronic kidney disease (CKD) is undertaken by the person at home, on their own and after a process that makes most people nauseous, faint and weakened, and which we, non-users, don’t really understand. Dialysis is rough; check out www.ihatedialysis.com if you don’t believe me.

Of the 168 hours available in a week, 12 might be spent on a dialysis machine and with the available support of clinicians and dieticians. The remaining 156 hours will be spent post-dialysis, on your own, trying to eat the right things, getting appropriate exercise, avoiding fluid and getting on with your life. Most of the management of CKD is down to you, your motivation and your own resources. Crucially, most of this is done feeling rough from the treatment.

In my experience it’s actually worse than this. If you’ve ever watched someone on dialysis you’ll know that they are generally very quiet and passive. There are lots of reasons for that. They’re probably starting to feel rough as the fluid is drawn out of them; their blood pressure drops and they can faint and feel sick. The machine will probably beep at them if they move; it tries to sense what is happening to the person and it alerts to ensure their safety. The sensitivity of the machine can be tweaked but that isn’t always done, it isn’t always successful, so people sit quietly. They also sit separately; infection control means that everyone has to be a certain distance apart, usually too far apart to easily hold a conversation. Lastly, dialysis units tend to be run like a production line; the nurses may recognise the benefits of getting the patient involved in the dialysis process – and it is possible for the patient to be solely responsible for their own dialysis – but in a busy unit the default is to just get on and do it. The person is rendered passive because the nurse finds it easier to do than to explain; the nurse finds it so because of the context of use (a busy ward) and design of the device’s interface, which assumes a high level of knowledge.

So what we have at the end of all of this is a patient who has been made less able to self-manage their condition, not better able. They go home feeling rough and disempowered, knowing they have to go through it all again in 2-3 days.

Do we do enough to really understand the broader implications or consequences created by the devices we have designed? None of us want to design something that makes people less well, less happy or less capable. But do we really understand the effect that our work has on people?

I know there are some issues in trying out everything we design, but I try to assume that I will experience the therapy until I’m told I can’t. If it isn’t possible I would want to know, in the most evocative way possible, the wider effects and consequences that will follow from the therapy and device. Otherwise how do you know you’re doing any good?