For the past two days, I've been at the AAMI Summit on Healthcare Technology in Nonclinical Settings. The talks have all been short and to-the-point, and generally excellent. They included talks from people with first-hand experience of living with or caring for someone with a long term condition, as well as developers, researchers... but no regulators, because of the US government shutdown. For many of the participants, the more memorable talks have been the first hand accounts of living with medical devices and of the things people do and encounter. I'll change names, but the following are some examples.
Megan's partner is on oxygen therapy. The cylinders are kept in a cupboard near an air conditioning unit. One day, a technician visited to fix something on the aircon unit. As he was working, she heard a sound like a hot air balloon. She stopped him just in time: he had just ignited a blow-torch. Right next to the oxygen cylinders. Naked flames and oxygen are an explosive combination. In this case, the issue was one of ignorance: the cylinders weren't sufficiently clearly labelled for the technician to realise what they were. However, there are also accounts of people on oxygen therapy smoking; in some cases, people continued to smoke even after suffering significant burns. That's not ignorance; it's a choice they make. Apparently, the power of the cigarette is greater than safety considerations.
Fred's son has type 1 diabetes. He was being bullied at school, to a degree that he found hard to bear. He took to poking a pencil into his insulin pump to give himself an excess dose, causing hypoglycemia so that his parents would be called to take him home (or, in more serious cases, to hospital). Escaping being bullied was more important than suffering the adverse effects of hypoglycemia.
In our own studies, we have found people making tradeoffs such as these. The person with diabetes who avoids taking their glucose meter or insulin on a first date because he doesn't want the new girlfriend to know about the diabetes until they have got to know each other (as people) a bit better first. The person on home haemodialysis who chooses to dialyse on her veranda even though the dialysate doesn't work well when it is cold, so she needs to use a patio heater as well. The veranda is a much more pleasant place to be than indoors, so again she's making a tradeoff.
Patient safety is a gold standard. We have institutes and agencies for patient safety. It's incumbent on the healthcare system (clinicians, manufacturers, regulators, etc.) to minimise the risks to patients of their treatment, while recognising that risks can't be eliminated. But we also need to remember that patients are also people. And as people we don't always prioritise our own safety. We drive fast cars; we enjoy dangerous sports; we dodge traffic when crossing the road; etc. We're always making tradeoffs between safety and other values. That doesn't change just because someone's "a patient".