This is an actual letter that I am about to send, six months on from an A&E visit that left me confused and distressed. For obvious reasons I’ve changed the names and removed the name of the hospital. I’m sharing it here because I hope it might help other HCPs to understand some of the peculiarities of patient behaviour. I’m sending a direct letter and not a complaint via PALS because I just want the doctor in question to think about it, I don’t feel I want to raise a complaint.
It has taken me a long time to mentally draft the letter. I don’t feel it’s useful to simply rip my own skin off and make myself even more vulnerable when raising a problem in healthcare – I need some forcefield of interpretation, and finally found one in the realisation that myself and the Doctor in question have never really met.
I was a patient treated by you in the Emergency Department of your hospital earlier this year.
By now you will have treated many hundreds more patients, and I have probably faded from memory; I wasn’t particularly sick, and the treatment I needed wasn’t particularly interesting.
Broadly, the care you gave me that day was good – which fits with the experiences I have of A&E at your hospital, it’s a place I usually feel safe and supported. Unfortunately the end of our interaction didn’t go very well, and I wanted to give you some feedback to reflect upon.
The two issues I wanted to raise, not as complaints but as issues which probably seem minor to you but were significant to me, are:
- You discussed with me a plan and I was happy with that plan, which included a particular treatment, but when the nurse came to give the treatment it had been changed, and there was no opportunity to discuss this with you.
- When you were discharging me, you refused to give me the details of a specific test (my calcium level), and belittled me for wanting to know the result.
As a little background, I have adrenal insufficiency, a type-one variant diabetes, some issues with my calcium levels and I can be prone to dehydration. On the day that I came in, I’d just completed a course of acyclovir for suspected shingles and I’d had polyuria (even compared to my usual high output).
On good days I’m a very fit person, so I know that when my heart rate is soaring simply walking across the room or getting dressed, I’m probably dehydrated. Doctors often comment that I look very dry, but I rarely have particularly dramatic blood markers. You mentioned, as you had done on a previous occasion, that you didn’t understand why I couldn’t simply drink more.
It probably is something that you encounter from time to time – patients who are dehydrated because they’ve had very low intake and don’t know how to rehydrate themselves optimally. As a rule, if you have a poly-endocrine patient who also does sports, you can assume that they’re on top of their hydration as best they can be. As soon as I’m unwell, I start drinking rehydration drinks – sometimes it’s simply not enough.
Since we met, I’m now under the GI / Nutrition team and after a few weeks of testing it was found that even when I’m well, I run dehydrated. As I understand it, my gut doesn’t absorb fluids and electrolytes particularly well (probably due to some autoimmune pathology). Of course my daily replacement of cortisol, aldosterone and insulin is imperfect, so there are also spillages there. I compensate by dumping dilute fluids and also moving water from the rest of my body into my blood stream.
I’m now on two litres of Na/K/Ca regularly 3 times per week, which I self-administer. As a result I’m much more well and the hope is that I might never have to come to A&E with dehydration again. However, I know I won’t be the last patient with a long term endocrine condition to need your help, so hopefully I can share with you a little of the experience I had of our interaction, and this might help you when treating other patients in future.
I realise that neither of us actually met each other. ‘Patient Betabetic’ and ‘Doctor John’ are adaptations necessary for us both to get through an episode of acute health care. For you, ‘Doctor John’ is a role you play for many hours a week, and rehydrating dehydrated patients is ‘routine’. For me, 99% of my healthcare is self-delivered and being dependent on your decisions is unusual. For you, my problem is way down the spectrum of situations you can handle. For me, my diseases are life-and-death. You know your own competencies. I know that in the past I have been seriously harmed by honest mistakes made in the hospital. In short, the biggest difference between ‘Patient Betabetic’ and ‘Doctor John’ is not the Knowledge Gap (you were very honest in saying you knew little about Addison’s), or even the Power Gap (though this is significant), but the Arousal Gap; to you it’s no-big-deal, to me it’s a very big deal.
My initial blood tests in the department came back low for glucose and for chloride, and maybe low-ish for sodium and potassium. You suggested that you could give me a dextrose-saline bag, and raise my glucose and chloride at the same time. I agreed that was a good idea. While the low blood sugar did need treating, I can treat that orally – but my experience is that if my sodium is even slightly low then I’m more prone to repeat hypos. The balance of K/Na changes insulin sensitivity. Replacing sodium orally is harder than drinking Lucozade, so I was happy with the Dex-Sal plan.
Unfortunately, when the nurse came to hang the fluids, it turned out that there was no Dex-Sal in the department. Without discussion with me, you had changed the prescription to 1L Dextrose. By this time I was approaching 4 hours in A&E, and the nurse wheeled me to CDU. I asked her to ask you to change it to just saline, or to do half a bag Dex, half a bag Saline, as I knew from past experience that a bag of dextrose might lead to me dumping more fluid (I have a low threshold for clearing glucose in my urine and trying to match injected insulin to IV dextrose is tricky), and that it was more important that we make sure there was enough sodium. She gave me the usual reassurances that ‘John knows what he’s doing’ – and I said that actually you’d said that you really weren’t all that up on your complex endocrine stuff, not your bag, so I’d like to at least discuss it.
I realise also that we have a reversal here: a glucose under 3 is significant to you, but to me it’s something that happens fairly regularly and while it’s not ideal, it’s only worrying if it keeps happening, as it then indicates an incoming adrenal crisis.
Anyway, no discussion happened. CDU was absolutely mobbed to the extent that there wasn’t even standing room, and I’m always very nervous of being within coughing distance of other patients, so I left my mobile number with the nurses and went to sit in the cafe – having asked them if this was an ok thing to do. I got a call asking me to come back to see you, which I did immediately.
You told me that other than my white cells (expected, as I had suspected shingles) and glucose, everything was OK. I asked what my calcium level was – I’d been off my alfacalcidol (the active form of vitamin D) so that I could have a test, and then had restarted it and was in the process of titrating it and my supplementary calcium. I’d been having tetany, so had been increasing it, but it was also possible that the polyuria was being exacerbated by high calcium from overshooting (I sometimes get tetany from low potassium). I just wanted to know whether I was at the top or the bottom of the normal range, or in the middle, so that I could make my next titration decision. You refused to tell me. ‘Normal is normal.’ you said, ‘You need to stop being so het up about the numbers.’ – and in that moment I knew that you didn’t have any insight into what it’s like to be an endocrine patient with no homeostasis, and that in your mind I was ‘doing it wrong’.
The adaptation required for survival with insulin treated diabetes, or adrenal insufficiency, or parathyroid insufficiency, is that you have to start caring about and knowing about the numbers that are invisible and irrelevant to everybody else. Nothing is just ‘normal’ ever again. A glucose of 4.2 is normal, a glucose of 7.6 is normal, but thousands of times every year I have to make very different decisions based on those numbers. An adjusted calcium of 2.2 is normal, and 2.6 is normal too, but they require different responses from me.
All day, every day, I make decisions that keep me alive. It’s not just that the insulin and other drugs I use are dangerous if misused and I could die from a bad decision; if I simply sat still and made no decisions at all, I would be dead by the weekend. Many of those decisions first require me to test my blood sugar, check my temperature, check my blood pressure, consider my resting heart rate, do my peak flow, calculate likely energy expenditure, count carbohydrates – even check the weather because insulin behaves differently on a warm day to a cold day. I do not, and probably will not ever again, have the luxury of not being so het up about the numbers.
This is the adaptation required of long term condition patients with unstable conditions – be constantly vigilant and care about things that other people aren’t even aware of. It’s not fair to belittle us, to make us feel ashamed, for having that adaptation – even if it seems weird or neurotic to you.
As you might or might not have noticed on my records, I also have aspergers. This makes the numbers, the detail, even more of a big deal for me, and for a while I felt that you had mocked me for having autism, but I suspect that you hadn’t noticed this (and on reflection I feel confident that you wouldn’t cross that line). Having chatted to friends who also have endocrine conditions, I don’t think this was a factor – except perhaps that a neurotypical person might have read the cues that you were getting frustrated with me more quickly.
Of course all of this conversation – me begging you for my calcium level and you telling me I was overly bothered about the numbers and didn’t need to know it – happened behind the magic sound proof curtains in CDU. The nurses and other patients all heard our argument. I was distressed, you were a bit shocked at my distress – I expect ‘normal’ patients just nod and say thank you when they’re told that their result was ‘normal’ and that they don’t need to know any more than that. Probably neither of us sounded like reasonable people and I felt humiliated by this. I do understand that to do your job, ‘Doctor John’ is adapted to shrink and shrug off these kinds of problems for patients – because you have a waiting room full of people who might be very seriously ill and aren’t being managed yet. But all you had to say in that situation was ‘ok, I’ll get the nurse to print them out’. There was no clinical reason for you to withhold that information from me, so the implication is that you perceived it to be some sort of psychological glitch in me that you didn’t want to feed.
As it was, the outcome was that I had to go back to A&E the next day for a bag of saline, because a bag of sugary water was never going to ‘stick’. By then I knew that it was just dehydration so I used my local DGH, but it’s still a visit that probably could have been avoided if I’d had the right treatment first time.
As I’ve said, I hope that now that I’m on regular IV fluids I won’t need to attend A&E again for a long time, but if I do then I hope you won’t hold these reflections against me.
The issues we had are simple to fix:
- No matter how trivial the change feels to you, if you change the treatment plan agreed with the patient, the patient deserves the opportunity to discuss the new plan.
- Long term patients, and particularly endocrine patients, stay alive, well and out of hospital by being obsessively attentive to details that everybody else can live in blissful ignorance of. You can support us in this, and if you don’t understand why we are asking for a detail then reserve judgement until we have explained it to you. We patients are deeply confused when the same behaviours that are encouraged in clinic are greeted negatively in the acute setting. It can make asking for help seem like a trap, and in the end that only results in negative outcomes for all of us.
I realise that both of these fixes require a degree of time and patience that is in short supply in a pressured Emergency Department, but my experience, again and again, is that when it feels like you haven’t got time to do it right, you certainly haven’t got time to do it wrong.
Thank you for listening,
Hat tip to @trisha_the_doc for the wonderful ‘Triple Gap (Knowledge, Power, Arousal)’ model which has helped me hundreds of times since she taught it to me, and to @mellojonny for his incredibly generous blog which has helped me to see HCPs as humans who want to reflect but are often battered by a system that doesn’t encourage this.