This is the second in a series related to my cancer treatment. The aim is to talk about the personal experience of illness in a broadly analytical way. The first posting looked at blood, and how its condition affects our mental state.
This time I am focusing on patienthood. When you have a serious illness, being a patient is a major occupation, and not just because of the time taken up by medical matters – although, god knows your diary commitments, all of them once Very Important, go through a rapid reclassification after diagnosis. Patienthood also involves, potentially, a change in one’s entire take on life.
One reason is that you receive massive exposure to the way doctors think, and they think in a very particular way. This is partly because of their training and specialist knowledge, but it is also simply because medicine is what they do for a living.
The things that make doctors happy are not always the things that the patient thinks of. When I was first diagnosed, doctors were happy that my tumour tested strongly for hormone receptors, because that meant they could throw an extra treatment at it. I was not happy, because I had a freaking tumour.
Doctors think in general categories rather than individual narratives. Naturally they wish the patient well, but other things are driving them. They want a good outcome – as measured against others in their field – so that their own reputation, and that of their hospital, is enhanced. They value skill and craftsmanship. I do not begrudge this. When the ultrasound specialist first spotted my tumour, after another hospital had missed it entirely, a flash of professional pride passed across her face. At one level, she was pleased. And why wouldn’t she be?
It is not just doctors who think a certain way, but medical establishments in general. When you become a patient, you submit to the system with both your mind and body. There has to be a system, of course, or nothing would get done, but when the system is deficient you end up being there for their benefit, rather than the other way around. It is a fine judgment to make, when to submit and when to challenge the system.
The everyday meaning of patient is ‘a person receiving medical treatment’ but as one person commented in a previous posting, its roots are in the Latin pati, to suffer. A patient is therefore also defined as someone who ’suffers and endures the actions of others’. If you are a patient patient, you do it without complaint.
The suffering results not just from surgery and medication, but from all kinds of smaller, regular invasions. My own bugbear is the canula: a piece of plumbing inserted into the vein which provides a port into the body’s interior. The insertion is painful and if the first attempt does not succeed, results in multiple bruises. It has an effect on the mind as well as body: the canula harpoons the patient’s private space and signals clearly to the world that one is enduring the actions of others.
There is a lot of information that medical people don’t think to volunteer, and if you don’t ask the right question, you may not get the answer. But you need information to know what questions to ask. So you become informed, using terms unimagined a short time ago. You start to make the same distinctions and comparisons as specialists.
The main change in outlook as a patient is the attitude to risk. I will look at this in the next posting of the series. Meanwhile, feedback is very welcome.
Thanks Susan. Heartfelt and intelligent. Good to hear from you and to learn about this. I had three reactions when I first read this.
Your blog reminded me, in part, of Julia Darling’s poem ‘Too Heavey’ from Sudden Collapses in Public Places. We read together at Gateshead Lib and she was very entertaining. You can read it on here: http://www.juliadarling.co.uk/print/collapses.html
It’s very interesting what you say about incursions into the body and the blurring of the public provate space.
I’ve had a similar, although not as serious, experience of being turned into a patient. Last time I was admitted to hospital, while still in plain clothes, the nurse asked my partner and I “Which one is the patient?” It was as if she wouldn’t know how to treat me otherwise. Partly it is to do with the clothes, I think.
Wonderful poems, although I very much hope I don’t meet the same fate as her.
Your comment about the clothing makes me think of those hospital gowns they always tell you to ‘pop on’. Do they tie up at the front or the back? Are you removing everything above your waist, or below? Do they have any purpose (modesty? privacy?) when the doctor sees everything anyway? One of many medical rituals…
Just read your blog. I can add to your comments about being a patient, having recently spent two months last year in hospitals and nursing homes. You enter a parallel universe you never realize existed; truly another complete world, perhaps similar to prison with others in control.
Liked your realization abut what questions to ask; almost a skill in itself.
It is intriguing, Susan, the effort of empathy you make with the medical establisment which surrounds you. While it at some level tries to empathise with you, you focus on the process of empathising with the medical institution and its inhabitants. You are asked to open your heart and mind to the world of people who, until recently, you had no reason to care about. So different worlds collide, requiring the learning of languages, translation skills and most of all, empathy. Empathy, such a source of goodness.
You were spot on. Take it from me; I’ve had lots of patient experience these past four years with doctors, several surrgeries and
many medications, The best advice (which was vacuously pointless) I’ve
received from a doctor, many , many years ago in my callow youth was,”Stay away from doctors and hospitals!” Until 2004 I was obedient.
returning to bloody thoughts for a mo ; last week’s University Challenge panellist submitted Decartes & the pineal theory :
http://www.newscientist.com/channel/being-human/mg19626344.900-is-the-seat-of-the-soul-in-the-brain.html
Patients are a virtue ?
Para 5 made this occasional cynic laugh for all the wrong reasons
hope the body-snatchers aka mad docs take note
Attire I : well-intended, mandatory hospital gowns can feel
‘infantilasing’; a further loss of dignity when if one contemplates a demi-streak escape to a place of safety, as you say, the dreaded canula remains to cajole one into line
Obviously , post op, it is safer for dressing a possibly unconscious
patient when too fragile for skin-a-rabbit, it can be reassuring to have the split-rear garment easily lifted clear of blood flow etc
Perhaps Cath Kidston could design some ( no darks / reds - staff need to see any blood at first leak ) .. once read a Telegraph
interview which mentioned she had breast cancer several years ago
Attire II : docs choosing not wearing white coats is silly - under
adverse conditions one has no idea if one is talking to a doc or
just some well-meaning nutter AWOL from another ward
Insufficient dissemination of updated research info across the board
is flagged up here by GSK ( pharmaceuticals ) boss
http://www.bbc.co.uk/iplayer/episode/b00df8pf/
Another reason why ” it’s good to blog ” ? Albeit, anonymously if it feels more productive . Doubt many docs have time to read blog ( ? ) but friends, relatives, and paymasters perhaps ( until Boris saves the world, that is )
Possible new theme :
Clarification of crucial patient info ?
Med staff unwittingly play Russian roulette by arrogantly insisting on taking notes in joined up hand writing - even on standard forms shouting CAPITAL LETTERS ONLY to increase speed and accuracy for up & down-stream staff ..
Potentially dangerous ( and waste of time having to double check if and when they do ) for lab techs / post op if patient TKO / when over-tired night staff ( more so where english as a second language anyway ) end up second guessing drug dosage post-operative care
Meantime, poss patient tips
1. quietly plant spring bulbs
2. hang long-handled back brush in shower spec. for feet
( to avoid stumbling about peg-legged when tired )
3. follow gut instincts - douse everyone within reach
with anti-bacterial hand gel / carry anti-bacterial wipes
4. good protein promotes good wound healing
5. ask consultants to copy you into all correspondence
6. watch Top Gear on a loop in between reading Prospect
Thanks for this, Susan. All very interesting. I’d like to hear more of your thoughts on whether/how being a patient changes ones status in the non-medical environment. It’s clear that whilst one is in hospital interacting with medical staff that one is a patient, but what about the moment one leaves the hospital? Once one has become a patient, is it possible then to escape that moniker, or are you then a patient in every context eg as an employee, a relative, a partner? In other words, just as children possess many different versions of, and contexts for, childhood without being able to escape being children (except by growing up of course, and often enough, god knows, not even then!), is a patient always and inevitably living out some version of patienthood, and if so, at what point can they escape it?
That’s such an interesting question! Speaking for myself, I think patienthood affects every part of life. I hope to think out loud about the whole area, when I get to the topic of how illness affects our personal relationships.
Thanks Susan for your perceptive, low judgmental blog. In anticipation of your patient risk perception, I will toss in a couple of thoughts: Risks are always prone to redefinition, according to improvement in treatment/medication, more precise lesion definition, longer studies, and to the wisdom of the practitioner.
An excellent example of this is the fascinating article by Margaret McCartney in this Saturday’s FT magazine. Even though I have had a number of friends and reletives with breast cancer, I had never come across such a sensitive analysis.
I look forward to your next blog, and any comment you have concerning the FT article.