Recently I found myself arguing, in the space of a few days, that “everybody is a patient” is nonsense, only some of us should be granted the special status of “a patient”, and that nobody should be calling anybody “a diabetic”. On the surface these might seem to be contrary positions, so I spent a lot of dog-walking time thinking about the differences, as a lowly engineer, untrained in sociology and critical theory. Here is my very clumsy interpretation.
I believe that it’s wrong to noun people by adjectives that inevitably form a partial description of them. It’s (usually) fine to apply the adjective – you can refer to me as diabetic, Scottish, short… but don’t call me “a diabetic”, “a Scot”, “a shortie”.
Ah, but… came the response on twitter… how come it’s OK to call someone ‘a nurse’, or ‘a student’ – we noun people descriptively all the time, don’t we?
A nurse is a person who engages in the activities of nursing – a person who nurses. A student studies. A fishmonger mongers fish. Nouning people based on the activities they engage in is quite different from nouning them based on a property or characteristic.
How is it different? Well, when we noun people based on a characteristic, what we are doing is othering, or differentiating them on a very narrow basis, typically using a feature over which they have no control. We are almost always saying “these people are different from normal by this specific characteristic”. Nouns are binary – something is or isn’t a dog. Adjectives are generally continuous, there is a spectrum of ‘redness’, not just two possible states – red, not red. In particular, we don’t define ‘not red’ as normal and ‘red’ as different from normal. Applying an adjective as a noun imposes a binary-ness upon it.
When we noun people based on a characteristic it’s divisive – it emphasises difference. When we do it to a group of those people it is toxic. Newspapers either side of Hadrian’s Wall report what “The Scots” and “The English” are plotting against each other, and those stories sound more threatening than the same headlines assigned to “People who live in Scotland” or “People who live in England”.
“Diabetics cost the NHS £xx billion” sounds quite different from “People with diabetes…” or “People with an illness affecting how they produce and/or use insulin…”.
So how is this different from “Nurses” or “Doctors” or “Paramedics”? Nursing, doctoring and paramedicing are things that people make a choice to engage in. Nobody is born a nurse or develops a medical degree as a result of a genetic defect. People don’t wake up one day and discover that they’ve become a paramedic, or a computer programmer. These nouns capture a set of activities engaged in – at least for the first period – willfully, intentionally. The activities aren’t trivial or short lived. A person doesn’t become a nurse by doing a bit of nursing on their holidays once a year.
It’s this, the trivial vs substantial nature of the engagement in activities, that leads me to believe that “we are all patients” is not a fair statement. Breaking into song in the car a few times a year doesn’t make me a singer. I can’t fairly call myself a “theatre goer” because I catch a play once every 2 or 3 years. Sprinting for the odd bus doesn’t make anyone a runner.
What is ‘patienting’?
What does it mean to engage in the activities of being a patient?
In a typical month I will, if I’m well, have two or three GP visits, one or two hospital clinics to attend, plus some physio or nurse-led education. Today I had a lip biopsy which took up around half of my day. Spending one or two days engaged in NHS-related activites each week is pretty typical for me – and that’s when all is going well. A bad week might see me in the GP three times plus an afternoon in A&E and an evening in an acute treatment ward. In a very bad week I wouldn’t leave the hospital.
When I’m not in contact with the NHS I’m engaged in ‘stuff’ that I have to do to keep myself alive. Not just well, alive. I take medication on waking, with breakfast, with lunch, with dinner, with exercise, on going to bed and often in between too. I have to track supplies, check expiry dates and manage repeat prescriptions for nearly 30 items – no, it can’t be automated because what I need and use varies from day-to-day. Some items I only collect annually, others I need every 28 days. Some medications are ideally refridgerated, but can be taken out of the fridge and change their expiry date for every day that they’re kept at room temperature, or have a short life after opening. I write little notes but you still have to remember to check them.
As well as managing my medication, I have to check my blood sugar, at least six times per day but often ten or more times. This means carrying my meter and supplies for testing. In fact, carrying stuff around is a significant part of the activity that I undertake in keeping myself alive – making sure that everywhere I go I have, as a minimum, injectable steroids plus a syringe, oral steroids, rescue inhaler, epipen, glucose meter, test strips, finger stabber, insulin, pen needles, glucose, water… plus a medical-alert wrist band and an emergency protocol card for adrenal crisis.
Every time I eat or drink I have to estimate the carbohydrate content and decide whether to take insulin and how much. If I start to get unwell, or I graze my knee, I have to adjust my steroid medication, and my insulin, and decide whether to start antibiotic cover (I’m prone to secondary infections). Then I have to decide whether I need to inform, or see, my GP, and how soon, or whether I should contact one of my specialists directly, or ring the specialist nurses for advice – and then I have to make the phone calls, chase the appointments, rearrange the ones that clash, file the appointment letters, take the right ones with me to each appointment along with a computer print out of my most up-to-date medication list.
And then there is the litter. Nobody talks about the litter-burden in LTCs but it’s endless. Needle stickers and test strips and spent lancets and empty medication boxes and pill strips and the little plastic capsules from my tiotropium inhaler. I have sharps bins in the kitchen and the bedroom. They have to be returned, full, to the GP and new ones collected (I realise that I am extremely lucky that my sharps process is so easy – many people have to ring their local council for collection).
When my lungs are rubbish there is a lot of sterilising. I really hate that. Constantly soaking nebuliser masks and tubing in Milton Fluids, before running them through the dishwasher and hanging them all over the kitchen to dry. It’s just so time consuming and boring, and it takes just enough energy to leave me unable to do anything more interesting.
These activities didn’t arrive all at once. They crept up, a few at a time. I don’t know at what point I went from being “a person who takes a few medications most days and sometimes goes to the doctor” to “a patient” – it’s as hard to define as what makes a person “a runner”. Running is what makes you a runner – it’s not about how far or how fast, except that we would all agree that walking is not running and that speeding up for a few steps is not running either. It’s not defined by frequency or recency. I didn’t stop being a runner when I couldn’t run because my leg was broken, just as a nurse doesn’t stop being nurse when s/he’s on leave.
Each patient’s activity burden is different, made up of some combination of appointments, information-gathering, self-education, medications, physio, equipment maintenance, self-monitoring and admin… endless, endless admin, much of it with an NHS that has fallen 20 years behind the rest of the services we use. Plus there is the work involved in keeping yourself psychologically afloat. As if all this patienting wasn’t depressing enough, amid other responsibilities to work, family, friends and home, it leaves many fewer hours for fun.
The up-side of patienting is that once you’ve been through your induction phases, and you really appreciate how few hours you have left to play with in the week, you prioritise. You make time for important things today because tomorrow’s patienting might involve unexpected overtime. You can let go of optional obligations – stuff you thought you had to do but transpires to be unimportant. The things you “do” become fewer and more precious.
I do patienting.
I make software.
I go running (with my absolute priority being parkrun).
I walk my dog with my local friends and my partner.
I take my dog to training classes.
I go on holiday to remote places.
I visit my absolute closest friends, and my family, and they visit us.
I use twitter.
I do housework.
And that’s it.
Those are the things I do. I listed patienting first because if I don’t do those things, I can’t do anything else. You can noun me by any of those activities. I am a patient, a programmer, a runner, a dog-walker, an Orkneys-visitor and a friend, sister, daughter, step-mum, partner and twitter-user.
By definition, the activities that are left when you are spending a lot of time patienting are the ones important to you. They capture what matters to me, and by extension they capture my goals for treatment. If all my hospital referrals and letters began “Betabetic is a 39 year old runner and computer programmer, who lives with her partner in a remote farming village, and has the following diagnoses… “ my appointments could only be enhanced.
Perhaps we could have little paper slips in the waiting room for patients to fill out.
- What do you do (for work, for fun and in your family)?
- Is there anything you used to do, and wish you could still do, but are unable to because of your medical conditions?
- What diagnoses do you have?
- What medical problems do you have that don’t have a diagnosis?
- How much of your time do you spend feeling too unwell to do the things you listed in (1)?
- How much of your time do you spend ‘patienting’?
I know that the best HCPs find these things out by chatting to the patient, but you’d be surprised how many important things you don’t know about your patients – in particular I’ve met very few HCPs (outside of specific departments like CF units) who have a handle on the answer to Q6.
If anyone has the opportunity to start asking it, I’d be really interested to hear your reactions to the answers and whether your patients appreciate that question. I’d also be interested to hear any thoughts on just how much patienting makes you ‘a patient’.