In August I was having a great time at the Greenman festival in South Wales when I slipped and fell backwards when dancing. I broke my radius (and my ulnar styloid process). The fracture needed internal fixation with k wires and I had to spend two nights in hospital.
The next day after discharge my husband and I returned briefly to the festival... well, we had to pack up the tent! In the picture above I am sitting in a near empty comedy tent in between acts. This was my first few hours back in the real world. It was a Sunday evening and I had to let my doctor colleagues know that I would not be coming in to the practice. I was figuring out how I would cope with not being able to drive for several weeks. Soon after I went on holiday to Co. Kerry and watched on as the rest of my family set off for a day hike up Ireland's highest mountain.
My wrist got more painful and my next hospital check showed that the wires were pressing on my skin. Moving my thumb became very painful and I worried that I had ruptured my extensor pollicis longis tendon (a rare complication of Colles fracture) and was glad to be reassured that I hadn't. I googled to see if I could find an explanation for the pain in academic literature, or in the blogs and forums of others who had had a fracture like mine. But I didn't find anything. One night the pain in my arm woke me from sleep and I lay for a while half-crying before I remembered that the solution was to take more painkillers.
I wondered if I should return to the clinic early but I knew that I had been told that the wires couldn't really be removed before four weeks so I just had to wait it out. Two weeks after that the cast was removed and I could start exercising to conquer the stiffness that immobilisation had produced. I am still under the care of some excellent hand therapists. Tomorrow morning we will document how successful I have been in getting back to normal.
Whilst my arm was in the cast I did not see patients. I worked in the university but I felt too much of a patient myself to act as a doctor. But what do I mean by patient? I hadn't really thought about the term too much myself until I started seeing people use it in a way that I didn't recognise.
Last week the E-patients Connections 2009 (#epatcon) conference took place. Although it used the word e-patient in the title, the strapline made clear that this was about how to "reach, engage, educate today's digital health consumers". Consumers not patients. There were patients speaking there. ePatient Dave talked about how companies wanting to connect with patients should be authentic. Kerri Sparling (from Sixuntilme- a fantastic blog about her experiences of living with diabetes) wrote "It's a strange dance, watching people who are living with different health conditions in the same room as marketing teams and pharma companies and people who might view us as "consumers.""
The day after #epatcon I lamented that the only consideration of epatients at the conference had been as a consumers, and that perhaps there was no-one to fund a conference to look at the "real experience of patients". Jonathan Richman replied "I don't get it. What's the diff between 'consumers' & 'real patients'. They're the same ppl, just a diff word."
So is the word important? I have been recommending a book by a Dutch philosopher Annemarie Mol, " The Logic of Care: Health and the Problem of Patient Choice" in the past few months. Some of it is available here on Google books if you want to look before you buy (and you can read a great post by Ken Bottles on his thoughts about this book here). She describes how the response to the medical paternalism was an undue focus on patient choice as part of a consumerist model of healthcare. She is not opposed to patient choice and neither am I when it is appropriate but it is not sensible for it to be the focus of all interactions in health. It also implies that there may be a choice when there is not. Mol's study is of patients and professionals working with diabetes and some of her points resonate with another recent post by Kerri on Sixuntilme. Kerri talks about the guilt that is inflicted on those with Type 1 diabetes when they are made to feel that any deterioration in their illness is due to bad choices that they have made, and not to the disease itself. As the prologue of Mol's book states, she concludes that "good care is not a matter of making well-argued individual choices but is something that grows out of collaborative and continuing attempts to attune knowledge and technologies to diseased bodies and complex lives". Diseased bodies and complex lives.
So if consumer is not a good word to describe the experience of someone living and dealing day to day with a disease or disability, is patient any better? Patient as an adjective is defined as "bearing or enduring pain, difficulty, provocation or annoyance with calmness. It is only perhaps the "with calmness" part which is not appropriate. I often felt not very calm as a patient for a number of reasons. But this definition captures more of the root of the word "to endure" than does the most common definition of the noun "one who receives medical care, attention or treatment". When patients go online today to tell their story they don't just talk about their experiences of healthcare. That is just one part of dealing with an illness. There is another whole world outside of the hospital, doctor's clinic and medicine cabinet that must be negotiated. And that is what epatients tell us about. It is what I wanted to learn about when I searched for the stories of others who had endured a Colles fracture like me.
Some think that other terms such as survivor are more appropriate. I feel that I endured my wrist fracture rather than survived it, and I feel the same about other experiences of patienthood which I will not share here. Epatients tell us about how to endure and survive illness, how to collaborate with the professionals who care for us, and how to actively participate. The don't tell us about how to consume.
How do you feel about being a patient? Do the words matter at all?