Jonny Tomlinson’s post on Doctors, patients and shame was the piece of writing that led me to engage with health care professionals on Twitter. It opened my eyes to the human side of being a doctor, and to the possibility that the struggle I had in coming to terms with being a patient with long term conditions wasn’t a freakish weakness but a common experience which – gasp! – some people working in health care wanted to understand too.
Not that my shame vanished. At times it is still exquisite. Each admission seems to add a little to the pile and it rarely goes back to the previous baseline. The baseline creeps forward.
The Goldilocks Zone – between the shame of ‘not enough’ and the shame of ‘too much’
My long term conditions – diabetes, addison’s, brittle asthma – each require a degree of self-management. They are a particularly tangled combination, but many of the quandries I stumble on are down to the common theme of long term conditions: finding balance, as health care professionals like to spin it. In my world this is the constant seeking of goldilocks zones.
There is a goldilocks zone between not exercising enough (lazy, self-indulgent, not-trying) and over-doing it (reckless, over-confident, trying-to-prove-something). There is another between not paying enough attention to your diet and orthorexia (a particularly gnarly one for me as I have multiple allergies as well as diabetes.)
As a diabetic you deal with nested goldilocks zones when it comes to blood sugar. You have to put in effort to keep your blood sugar within range, 4-8 mmol/L, as much of the time as possible. And you also have to find the goldilocks zone of how much effort you are putting in to achieve this control. You will be judged for being too slack and also for being too focussed on your control. We can test our blood sugar too much or too little. And, of course, any two HCPs involved in your care define these goldilocks zones differently.
Medication ‘adherence’ is another goldilocks zone. On the one hand there are the patients who only know that they take 3 pills in the morning and at least one of them is white. On the other there are patients, like me, who know the exact dose, timing, purpose and interactions of their medications. (Addison’s is a condition in which missing medication invariably leads to serious illness or death in a matter of a few days.) Apparently the goldilocks zone with medication is to know the brand (but rarely generic) names of your medications but to be rather vague about the doses and even vaguer about the way the drug works. This is what is called ‘normal’ and if you step outside of this zone then you are to be mocked for your naivety or branded ‘abnormal’ for your ‘obsession’ with your health.
I now carry a SystmOne print out of my meds – in part it’s more efficient, but it also allows me to pretend that I couldn’t just write out the list off the top of my head. For every triage nurse in A&E who has said “I wish my patients were all like you!” as I reel off my drug list, there has been a doctor or nurse who has humiliated me for questioning the omissions and discrepancies in my drugs chart. “That’s not really for you.” “I’m sure the Drs know what they’re doing (shut up).”
In the moment these small cringe-yourself-inside-out experiences can be brushed off, but my experience has been that they leave a residue that has slowly built up until I find myself paralysed, unable to communicate spontaneously with my doctors and nurses. I’m perpetually caught up in trying to double and triple guess where they define the edges of the goldilocks zone.
Shame shrinks The Goldilocks Zone
My experience is that the more shame-residue I have amassed, the smaller the goldilocks zones have become. When I was more confident, less ashamed of my inadequacies both physically and in ‘coping’ with my conditions, I felt like I had more wiggle room.
Recently I’ve felt as though there are no longer any right decisions. For a while I thought that was a product of my increasing knowledge about the interactions of my conditions. But now I realise that I’ve reached a level of shame in which I expect to be perceived to be ‘doing it wrong’ no matter what actions I take.
Shame is a consequence of perceived judgement
Shame is felt in the context of judgement. In childhood the judgement is generally stated – “you didn’t think – you’ve let the school down, your parents down… “
In adulthood the judgement is contained in an unspoken “and…”. The unspoken “and…” intended and the one experienced by the patient may vary a great deal.
Patient: I’m really sorry… but I asked for my painkillers at 6.30 and it’s now gone 9 o’clock, and I really, really need them.
Nurse: (with irritation) Well nobody handed it over to me at shift change…
Internally both the nurse and the patient complete the and…
Nurse: and that’s just typical – we never have enough time to do the handover properly because we’re never staffed properly. We leave our patients in agony for hours all the time, I bet this one will complain. They should complain. It’s so depressing.
Patient: and so I don’t believe you – you’re trying it on in order to jump the queue.
Both the nurse and the patient feel shame in this kind of scenario, and I believe that on the wards I regularly observe a kind of co-shaming, where shame is passed from care-giver to patient and back again. Multiplying as it moves, and distancing us from each other, leaving even more space for the shame to expand into.
The shame of specialness
In The Gift of Therapy, the psychotherapist Irvin Yalom (one of my favourite thinkers) writes
One of our chief modes of death denial is a belief in personal specialness, a conviction that we are exempt from biological necessity and that life will not deal with us in the same harsh way it deals with everyone else.
We feel shame for being sick, but also shame – if we have enough insight – for being exposed as someone who believes themselves to be ‘special and different’, not deserving/destined for suffering, pain and death.
These it-won’t-happen-to-me mind games are a requirement for productive living in the presence of conscious awareness of mortality. People who don’t play them well enough – who spend their days locked in a tiny world because the randomness and danger Out There terrifies them, are shamed for being reclusive.
Once you realise that yes, it is happening to You, you want permission to enter the Sick Role but without having to leave your entire identity on the clothes peg when you put on your gown. Yet the NHS cannot, despite the clamours for patient-centeredness, provide us all with tailored health care, especially in hospital. There is a prohibition against being ‘special and different’ – truly patient-centered care requires resources that simply don’t exist.
Ward culture – shame as a demand management strategy
The typical inpatient experience is of a four or six bed bay, with bed areas divided by curtains designed to afford some privacy. The curtains may hide my nudity, but they allow for every transaction between a patient and their health care providers to be observed. And I suspect that, ultimately, this is to the advantage of the staff because it preserves our inhibitions. We tolerate things that are bordering on intolerable because we can’t face the shame of being seen to be demanding / a wimp / not able to suffer politely.
This reduces the demands we make on staff and moderates our reactions to unacceptable care where it arises. The threat of shame in front of our bay-mates and their visitors keeps us in check.
Where medication, illness or sheer desperation make us disinhibited, we are double-shamed. With a caveat that I have experienced some excellent nursing care at times, nurses often speak to patients who have dared (or fallen) to override their inhibitions and express distress, concern or desperation in ways that not only shame the patient but also fire a warning shot to other patients present;
Oh come on, there’s no need to get all upset!
You should have buzzed sooner.
Why didn’t you say something when the Dr was here?
I can’t do two things at once!
We do have other patients to look after – some of them are very poorly.
None of these responses is overtly humiliating, but the implied judgement is that the patient is some combination of weak, stupid, thoughtless and/or selfish.
Shame cannot pass from Adult to Adult
Transactional Analysis (an integrative approach to psychology/psychotherapy) models interactions in terms of three ego-states – Parent, Adult and Child.
Loosely, (with apologies to my partner, who is a TA psychotherapist), the Parent deals in rules, the Adult in thoughts and reflections and the Child in feelings. The ego-state can be overt or it might be more subtle, needing to be interpreted through facial expressions and tone of voice.
Two Adults having a conversation cannot shame each other. We can talk about shame, we might even confess things of which we feel ashamed, but the shame is not being passed between us. Jonny Tomlinson writes about a recent experience in which his work with a trainee led him to feel ashamed of how he had communicated his irritation to a patient. It’s clear that in the work they were doing, both he and the trainee were in Adult. This made it safe for them to be vulnerable with each other, because they didn’t judge each other. In contrast, the Parent ego-state, being the holder of the rules, is constantly judging. Good girl, bad girl.
Patients often present in the Child ego-state. They are collapsed, overwhelmed by their feelings – emotional as well as physical. Ideally, we need to be nurtured back into our Adult ego-state, in which we can reflect and think, give consent mindfully, make treatment choices that take in our wider lives and be active members of our care team.
Unfortunately, this is less efficient, on an hour to hour basis, than having patients who are in the Child ego-state and will Do As They Are Told by health care providers who act from the Parent. The Parent-Child dynamic is the traditional paternalistic model for the medical consultation.
Whether nurses on the wards, consultants on the ward round or GPs in the 10 minute consultation, the temptation to assume a Parent ego-state is ever-present. In the majority of cases, the patient, who has no power except that of veto, will acquiesce into the Child role. The consultation may pass without any obvious moments in which the patient was actively shamed. The clinician may answer their questions patiently and generously. And the patient may still go away feeling ashamed that they didn’t really ask the things they wanted to, didn’t really challenge the weaknesses they saw in the plan, didn’t speak up about their concerns. Not only are they weak physically, they are weak psychologically too – ashamed of the being afraid to speak up when it matters so much.
You cannot guess what will shame me
Irvin Yalom (who should be compulsory reading for all medics) talks about the client’s whole world, their entire past, being present in the consulting room. As a result, no two patients will – or can – respond the same way to the same stimulus.
Therapy is like a living Rorschach test – patients project onto it perceptions, attitudes, and meanings from their own unconscious.
Shame requires hooks. When I was younger I felt deeply ashamed about being gay. I had been brought up Baptist and homosexuality was up there with murder, an abomination against God. I had deep hooks for homophobia and quickly felt shame in response to all sorts of gay-related triggers. Today I feel entirely comfortable with my sexuality and there are no hooks for homophobia to connect with. If I met a homophobic nurse or doctor I would, once I’d got over my shock that such people still exist, challenge them and then report them. I wouldn’t squirm about it.
On the other hand, I have felt extremely ashamed about my aspergers this last year. In January I was admitted as an emergency having been ill for a few weeks. The FY1 who wrote my discharge letter put that I had “Abnormal Illness Behaviour” – referring to the extent to which I had tried to self-manage my condition. (Seriously, who wants to be in hospital at Christmas?) I managed to speak to him on the phone and he agreed that it was inappropriate to have used a diagnostic term, especially such a pejorative one, and he re-wrote and re-issued the letter, but the shame hasn’t gone away.
I will never not have aspergers, and I fear that if I describe how I manage my health to Drs in future they will judge me as being a freak. Abnormal. Normal is reading Heat magazine and not knowing what meds you take because your brain is full of facts about C-list celebrities. I fear that his original terminology is still on my records. I would like to find out, but I think I might actually die of shame if I read them.
Auditing shame as a patient experience
A search for the word “nuisance” on the patient feedback site Patient Opinion brought up 49 pages of results (as at 2nd Sept 2014).
“[Staff] were unapproachable, I felt as though I was being a nuisance”
“at no time was I made to feel I was being a nuisance”
The negative comments are perhaps unsurprising, but the positive ones should make us pause for thought. Of all of the infinite things that didn’t happen, and all the things that the patient didn’t feel, ‘being a nuisance’ is the one that they chose to bring to the forefront.
The experience of being made to feel like you are a nuisance is so pervasive in health care that it is worthy of comment when it doesn’t happen.
You only have to spend an hour in a hospital ward counting the number of apologies in order to recognise that the overriding culture is one in which patients expect to be treated as though they are a nuisance. Not apologies from nurses to patients, but from patients to nurses.
I’m sorry nurse, I need to go to the toilet.
I’m sorry, I know you’re busy, but I haven’t had my anti-seizure medication yet and it’s an hour late.
I’m sorry, someone said that they would refill my water this morning and then they must have been too busy…
Here is a simple audit that could be done by almost anybody: audit the number of sorrys on a ward – from patients to staff.
When patients are frequently apologising to staff it’s a clear indication that they feel like a nuisance, which I believe is a proxy for co-shaming in the care-giver/patient relationship. Co-shaming is likely to be a proxy for deeper problems that need to be addressed.
We could also do a daily ‘Nuisance test’ – anonymously, tick the form, shove it in the shoebox:
Today, I felt like I was seen as a nuisance:
[ ] All the time
[ ] Frequently
[ ] Sometimes
[ ] Rarely
[ ] Not at all
Reducing shame through Horizontal Disclosure
Jonny Tomlinson talks in his original blog on shame about feeling shame himself at seeing the patient’s shame. What kind of a GP must he be that his patient felt such deep shame in his discovery of her problem? In my experience, probably a really good one. I struggle with shame and fear around my relationship with my GP because she is so good. I feel that she likes me, and the care I get is excellent. Therefore there is a lot to lose if I mess things up. And the idea of going to the doctor to tell them that you feel so anxious that you can’t go to the doctor is rather confusing.
So what can we do? As Yalom puts it, Horizontal Disclosure is disclosure about the act of disclosure.
Shame about feeling ashamed is a vicious circle that often leads to patients keeping information from their health care providers that they should ideally share. Yalom suggests that we can increase the possibility of sharing by directly inviting Horizontal Disclosure, as a precursor to actual disclosure, with questions like:
Is there anything that you don’t feel able to tell me?
Is there anything you wish I knew without you having to tell me about it?
These questions are much more powerful than the simple fallback “Do you have any other questions?” used in many consultations. They say – Adult to Adult – I realise that there may be aspects of this situation that are difficult to talk about, and that’s normal and OK, and yet I still want to hear about those things.
When the patient does disclose what they feel so much shame about, the natural reaction is to sort the new information into one of two piles: oh, that doesn’t matter or dammit, why didn’t you tell me this before? These reactions may be accurate and authentic, but either of them is likely to simply add to the patient’s shame. Instead it’s important to spend some time in the horizontal disclosure – Why was this so hard to talk about? What did you fear would happen?
Becoming aware of when we invite others to feel ashamed
As a person with diabetes, obviously I realise that I am part of the problem that is bringing the NHS to its knees. I’m ‘fortunate’ not to be Type 2, but an odd Type 1 variant (probably Type 3c) – I say fortunate because while being insulin dependent is a bit of a hassle, at least my diagnosis means that, according to media folk-lore, I did not bring it on myself. People say “oh, you must have the bad kind!” but really I have the good kind, because I would not trade you all the blood tests and insulin injections in the world for metformin-and-a-dose-of-its-your-own-fault.
When I’m steeped in shame and stewing about how much it costs you good tax payers to keep me alive, I sometimes think to myself ‘at least I’m not fat’. Not because being fat is the worst thing in the world, but because it’s official – people who are obese should be ashamed of themselves. And if they aren’t ashamed then they should damn well be ashamed of not being ashamed of themselves!
We know almost nothing of the complexity of most people’s lives, but we feel compelled to make judgements, to engage that critical Parent ego-state, at the drop of a hat. Patients should know better than to go to the GP with dental abscesses! Patients should know better than to go to out of hours when they have only been unable to keep down fluids for 44 hours and not the required 48! Patients should know better than to ask for antibiotics for upper respiratory infections that have only been ongoing for two weeks! Don’t they know that according to recently updated evidence based guidelines it’s no longer the done thing, even if it’s green… never mind that the last time they were at the doctors was before the update when their GP was still intensely interested in the colour of their snot.
We are all too quick to judge each other. On both sides. Patients are fussy about being kept waiting for a (free) doctors appointment while they don’t mind waiting 15 minutes for a Chinese takeaway. We are deeply intolerant of our doctors’ tolerance of uncertainty.
We need big, achievable goldilocks zones on both sides – being ‘good enough’ as either the patient or the health care practitioner has to be possible, and ideally probable.
The experiment I suggest is that we all look in the mirror each morning and say “every day, in every way, everybody is probably doing their best in an imperfect situation”. (Including ourselves, maybe).