This is part two of a column by Orla Tinsley. Read the first column here
It started the day of the surgery.
“How much is that?” I asked the voice whose actions I always had to check. The voice tightened into a tone that was unforgiving of my inquisitiveness. “It’s 500mg. The bag is.”
“But how much is the drug?” I asked. “500mg,” the voice said.
“Shouldn’t it be one or maybe even two grammes?” I asked. I think my dose of these drugs are usually in grammes, I say. I have been on this drug my whole life – pre-surgery and beyond. I am told I am wrong and the other voice checking with the first voice is checking me.
“500mg is correct,” the voice says.
I give in.
And, besides, I am on my way to surgery and they are both professionals. No time to worry. Meditate. Theatre is a dream. The fuzzy edges of the sterile room roll towards me in a wave formation, this sea takes over and I fall asleep. When I wake, the morphine button the anaesthetist said I would have will help. My thumb searches for it, but nothing is there. I am told that because it’s the evening there is no one around to explain why. I am shocked. I expected, if there was a change, at least a note would be left for the person who is in pain expecting a certain kind of relief. I still had morphine, but I had to ask for it to get it in my already half-conscious nauseous state. After surgery, regular doses are the best way to stay pain-free.
I want to trust, but I am exhausted
I take out my phone and set an absurd but accurate list of timers to remind me when to ask. This, I think, is stupid and unnecessarily difficult, but my ankle is going to need it. Metal plates and rods have been implanted. The way to control pain directly after a surgery is regular relief, perfectly timed until it’s time – some days later – to actually feel the feeling in your body.
Then, it’s different. Sleep.
In the morning I was grateful it was over and grateful for my care. Grateful for the next chapter. A new voice, who I had never met before, brought my medicine. I look forward to new voices in this respect. My drugs, the same every morning, never deviate in colour, shape and size, and I can name them all. In the pot this morning I was surprised to see the most colourful drug I have repeated. Duplicated. I have taken 7.5mg of prednisone every day for a year – the drug itself for six years now – and there was this issue when I went into renal failure where someone increased the dose without telling me and fed it to me throughout my admission.
I found out the day I went home. I was enraged.
And so, we then agreed on the correct dose of 7.5mg. This amounts to two red pills, but this morning the voice left four red pills. I pressed the voice bell and said something is wrong. “That is the correct dose,” the voice said. “I would like to see my chart please because I am pretty sure you have given me 20mg of a steroid when I am on 7.5mg,” I said. Steroids at higher doses can cause racing mind, insomnia, unease and general hyperactivity.
“Ah!” the voice says. “You are correct.”
The chart, to my horror, says I am on 10mg. But I’m not, I am on 7.5mg. And the voice had given me 20mg.
My heart breaks in three.
My mind begins to flip backwards in fear. I have been receiving 10mg for my entire admission for no medical reason, just because someone never bothered to check and I know who that was. It was the same voice who rang my mother about my medication doses – why would my mother know? – while I was sitting in a room opposite them, able to answer any questions, being in my 30s and fully lucid. I wish I had double checked with that voice because I could feel their scatty approach, but I did not because of the overwhelming pain.
No prednisone is given and we wait for the doctor. I must make a case about it all less than 24 hours after my surgery. And there is another issue too – about the underdose just before the surgery. My anger level is off the charts and I am on morphine. I search for calm. I cannot walk and I am being under-dosed in one department and overdosed in the other.
Oh the underdose? The correct dose was 1-2 grammes but someone had written 500mg in the chart.
Apart from unforgivable human error, there is the lack of continuity and connection between the online records kept within the hospital itself
It wasn’t the only issue, but, frankly, I didn’t have enough space to keep doing their job for them. What sick person does?
I want to trust, but I am exhausted. The major issue from the admission was much bigger – some of those administering drugs were forgetting to write up the Class A Schedule 2 opiate drugs they administered in my paper chart. I carried my paper chart on my bed each day I was wheeled to treatment and handed it to them. Now, if significant investment in electronic records was made, this may not be as much of a problem. I think this is an urgent need, but that’s not what this column is about; this is about people who are not trained properly being given responsibility they are not ready for and how it has a severe and potentially deadly effect on patients.
Here, I can speak only from my own experience.
My heart was not full enough to tackle these errors every time and the morphine mangled my mind at times, so I took notes on my phone each day. Apart from unforgivable human error, there is the lack of continuity and connection between the online records kept within the hospital itself. I remember when I was in the high dependency, after several days there, a doctor had to waste their own time putting my physical hard copy files on to the high dependency computer. It was an unfathomable burden that could be solved properly with investment and innovation.
And yet, it is hard not to feel the human who failed to write up the morphine dose bears much responsibility.
I had come from a hospital in New York where not only could all of your doctors access your information online, but you, as the patient, had the legal right to log in and view your results at any time – including your X-rays – and you had the right to download them at any time and travel elsewhere for care. In Ireland, this is not possible. This can happen through GDPR, though some medical professionals, not understanding patients’ rights, are still reluctant to hand over records.
But none of this is helpful for the staff who cannot understand the complexities of their patient because the chart with the information is in another wing with another doctor who needs it just as much. How much do we truly value our families and communities if this is how our hospital records show up for them in their darkest hours? Inaccessible and undiscoverable.
And then, if the person administering the drug does not write it up, nothing can be done.
On these occasions, I happened to be lucid enough to notice. I brought it up and I did not take the drugs. But that was when I noticed; how many times did I not?
It was during that time when I woke up slurring my words and unable to think straight. Knowing I do not have a mental illness I thought, have I been overdosed? I figured maybe, given everything, I was exhausted. The drugs I managed to catch not being written up were: cyclizine – an anti-emetic; morphine – a highly addictive Class A Schedule 2 opiate; and paracetamol – pain relief you can buy over the counter.
But what had I failed to catch?
The issue was the same each time. I went to the unit via a bed because I would not walk. My ward nurse placed my chart on the bed and when I arrived in the treatment unit, the nurse there would take it. All those treating me had to do was communicate any drugs given via a written note in my physical chart. This would tell those in my next location when the drugs were given so that they would not be given again too soon.
Giving drugs too close together can be lethal, or at the very least cause severe risk to the patient. Everyone, I think, knows that. You don’t have to be a medical professional. Just like you don’t pop paracetamol too close together, you definitely don’t administer morphine outside of the allocated parameters. But several times – three that I noticed – they had failed to write about morphine, cyclizine and paracetamol.
These were three separate occasions over several weeks. And so, a couple of hours later, the transplant nurses would present my large array of night-time meds, including those already given less than four hours earlier, because they were reading the chart correctly. No one had informed them otherwise and their job was to give the drug. Luckily, on these occasions, I happened to be lucid enough to notice. I brought it up and I did not take the drugs.
But that was when I noticed; how many times did I not?
When I brought it up with the manager they said I had received an IV dose of the paracetamol which is why it was on their computer and not the hard copy chart.
The room shrunk. I had not received an intravenous dose; this was not correct. They were also, I was told, junior staff who just didn’t know. This was the same excuse I got before my discharge when 10mg of prednisone appeared at my bedside one morning again. Even after everything that had happened with that drug already, someone had increased it.
It was a new team “they didn’t know”, a senior voice said. They also apologised.
But it is not good enough that this should happen even once and it is not a sustainable way to run our health service. There must be accountability, and removal and retraining of staff who create danger for patients in their care. However, I know managers will argue that the staffing shortage prevents this as a realistic measure.
So where do we go from here?
In this situation, even being the Karate Kid I am, I was whittled down to putty in the hands of those making the mistakes. How can we create trust in our health system if these issues are not resolved and eradicated for good? I am an informed patient, but others may not be.