This fictional scenario examines what patients, friends or relatives perceive when they enter the complex system that is a hospital. It describes what happens to a patient through the eyes of a friend who insists on staying with her overnight, and through the eyes of the junior doctor who is called to review her.
My intention is to portray processes and thoughts in a way that explains why things don’t always look patient centred. For it is this expectation, of individualised care that is exquisitely responsive to any change in condition, that soon melts into a puddle of resigned disillusionment when ill patients struggle for attention in the apparent chaos of a busy ward. This scenario is about how the needs of the one must be balanced with the needs of the many, and how providing a safe environment for all might lead to less than ‘ideal’ care for the individual. It is also about how patients and relatives must find a balance between respectful passivity – blind faith in the system – or arm waving, vocal conspicuousness. While the patient and their family will be concerned about one very special person, the organisation must find a way of ordering, prioritising and allaying numerous disparate concerns. Thus the concept of ‘acceptable’ care versus ‘ideal’ care is invoked – or compromise.
Friend: I insisted that I stay with her. She was disorientated and upset, and I could not be sure that the staff on the ward would notice if she needed anything. At 9pm she rolled onto her side and fell asleep, at last. It had been a long and tiring day. Having made myself unpopular by breaking the rules on visiting hours I decided to keep to my head down, to be as invisible as possible. But I was glad I was there. I could hear her sniffles and moans, I could ask her what she wanted – whereas the nurses would come only if she pressed the buzzer (which had been placed near her hand, but which she didn’t really understand). I watched and listened as other patients called out, and realised that it was necessary to call out repeatedly to attract attention. The nurses were moving incessantly, receiving new patients or administering drugs. This was an admissions ward, for fresh, potentially unstable patients. I understood that.
Doctor: I had seen her already, the patient and her friend. I had taken the initial history, performed the examination, arranged the admission. The friend was there in the ED, watchful, untrusting. She had that look – informed by a hundred scare stories in the media or a bad personal experience, I could tell she was convinced that hospitals were lethal, that there could be no guarantee of good care. I tried to reassure her, in fact I spent more time on her than I did on the patient, who was delirious. She asked if she could stay the night, and I said she would need to check with the ward sister.
Friend: When she began to moan I got worried. After about ten minutes I looked up and tried to find a nurse. The two main ones walked past quite a few times, by they were clearly busy, heads down, focussing on the problem in hand. I couldn’t make eye contact – it reminded me of being in a restaurant. So I pressed the buzzer. The nurse came, and I was embarrassed by the orange light that flashed on the wall above the head of the bed. The nurse, he was a charge nurse, reached over to deactivate the light, slapping the button. He asked me what the matter was. I reported the groaning. He measured the blood pressure and pulse, tried to rouse her, but she wouldn’t answer. Probably tired, he suggested. I had to agree…I couldn’t exactly disagree, could I?
Doctor: I got bleeped about her a midnight. The nurse said her friend kept asking for her to be seen because she was making strange noises. But he couldn’t tell me anything specific, there was nothing objectively abnormal to get worried about. But the nurse, Andy, said he wanted a medical review…and ‘nurse concern’ is a reason to go and check on patients. I agreed, and added her to my list.
Friend: I thought really hard about what to do next. I knew what I wanted – to drag the nurse over, or drag a doctor over. But I was nervous. Why? Because I was outside my comfort zone, I was surrounded by people more expert than myself, people who knew what to do. My role was supportive, not to act as some kind of alarm. And I was aware also that Mary was one of many, that her needs had to fit in with the needs of others. I didn’t want to act selfishly. The system knew that something was wrong with Mary – and now the system, the hospital, would deal with it. What would I achieve by going on and on? Perhaps I would actually disadvantage her, by annoying the nurse, who would annoy the doctor by ringing again… I had done my bit. And then…my thoughts ran the other way. Who cared if I made myself unpopular, who cared if I challenged the system and annoyed the staff? – it wasn’t about me, it was about Mary, and a threat to her health. Of course I didn’t know at the time what was actually happening to her. If I had, I would have been screaming down the ward, demanding attention until they came.
Doctor: I was annoyed. Three bleeps for the same problem. OK, if there is new information it is justifiable to update me, but I cannot commit to reviewing patients, or reassuring their friends or families, just because they ask more frequently or insistently than the next patient. If that was the case then only the most vociferous would be seen, and others, with equally serious problems, would be disadvantaged. I have a feeling that the loudest do actually get the better care, and I’m sure many of my colleagues would agree with that. It’s expedient, after all, to placate as soon as possible those who keep asking to see you. But I do get annoyed if I feel a family is dominating the ward or the nurses.
Friend: It was I who suggested to the charge nurse that Mary needed to see a doctor. Tiredness just doesn’t do to a person what she was doing. Sighing, twitching, moaning. But still her observations seemed appropriate, her blood pressure and oxygen levels safe. I made up my own mind that whatever was wrong with her, it was beyond the ability of the nurse to make a diagnosis. I wasn’t being offensive, it’s just what I thought. I probably came across badly, but I had decided not to care about that.
Doctor: I actually checked her blood results again on the ward where I was spending most on the night; there were one of two that hadn’t been ready when I saw her initially. I checked the kidney function, but it was normal. Blood glucose, normal. I mentally de-prioritised her. I had seen her x-ray already, and it was fine. I had taken a blood gas, and that too was fine. I couldn’t think of any good reason why she should be getting more sick.
Friend: After ninety minutes of waiting for the doctor I became really agitated. The charge nurse looked over to me once or twice, then turned back to his monitor, or whatever he was working on. My thoughts were thus – He knows I’m worried, he’s made the phone call to the doctor. It’s up to the doctor now to decide how soon Mary should be seen. The situation hasn’t changed, there’s no point in me hassling them. The doctor – presumably the same one who saw us in Casualty – has lots to do. He knows about Mary. He knows how urgently, or not, she needs to be seen. I veered between frustration, caused by the lack of action, and calm, in the knowledge that the doctor was on his way.
Doctor: I heard nothing for a few hours. I should have gone down, I said I would, but I began to assume the situation had sorted itself out.
Friend: My anxiety grew. I was watching Mary minute by minute, and she wasn’t right. I shook her a bit, poked her, tried to wake her. It looked like she wanted to be awake but couldn’t talk. One eye opened. So I stood up again and approached the nearest nurse. It was a different one this time, the male nurse had gone off somewhere. Look, I said, I’m really worried. She in some sort of coma, or having a fit. ‘The doctor is coming.’ she said. That was two hours ago, I replied, could you call him again? She accompanied me back to the bed space. Can you try to wake her? I asked. She tried, but Mary wouldn’t come round. I saw the fear rise in her, the sudden realisation that something was actually wrong. Perversely, I experienced a sudden rush of satisfaction, or vindication.
Doctor: The nurse, Jaya, bleeped me, and this time there was definitely something wrong. The patients conscious level was low, she couldn’t talk. But it still didn’t make sense. I promised to come down in the next half hour.
Friend: It was another 45 minutes; I timed it. When he came, after he had examined Mary, he adopted exactly the same expression – one of contained emergency, eyes wide and hyper-alert, while he worked out in his own mind what to do. He asked me if Mary had had a fall recently, and I said yes, a week ago. They hadn’t asked before, it didn’t seem like an important fact. She had only become ill over the last two days. The doctor began making phone calls…another doctor came, an anaesthetist in her scrubs, and they decided together that it was safe for Mary to go to the scanner.
Doctor: I didn’t know about the fall. If I had, well, I’m not sure it would have made me examine her any earlier. There was no real evidence of worsening neurological status until the nurse on the ward calculated a formal coma score.
Friend: They told me that there was a blood clot on her the brain, and that it must have been accumulating slowly since the fall. Then they disappeared again, made more phone calls, and at 8 o’clock in the morning Mary was transferred to a neurosurgery unit. They drilled a hole in her skull, drained the blood, and sent her back three days later. She’s still not right. She hasn’t been herself since, no longer articulate, no longer interested in her Trollope, not the same.
Doctor: We recognised it pretty quickly, in my opinion. And they took her for decompression, which they don’t always do. I’ve heard that she hasn’t recovered that well. How did I hear? It was in the complaint. Her friend complained that there was undue delay in diagnosing the subdural.
Friend: I complained. I think – and I’ve asked several doctors of my acquaintance – that the hours that passed between my first alarm, my first comment to the charge nurse that she wasn’t right, and the scan, contributed to her brain injury. I’m sure of it. And I ask myself, every single day, what if I had made more of a fuss, what if I had jumped up and down, dragged the nurse over, demanded that something be done four hours earlier? She would have had the scan, they would have found the clot, been transferred for the operation…all those brain cells could have been saved. I should have done more. I was there.
Doctor: I saw the letter, I was asked to comment on it for the Trust response.
Excerpt from response to complaint letter:
…after careful review by experts in the field, we have concluded that Mrs. Steven’s diagnosis was made in a timely manner, and that surgery would not have been performed earlier even if the brain scan had been done on the evening of xx/xx/xx rather than the early hours of xx/xx/xx. Based on an independent review of the notes and observations during the night in question there appears to be no evidence of negligence by medical or nursing staff. A clinical decision to perform regular (eg. hourly) neurological observations had not been made by the admitting doctor or the consultant who reviewed her the same evening, and the observations that were made (eg. pulse, blood pressure) were done adequately…
Friend: So it seems there was no chance of her being treated earlier. Or no need. That’s what it says. But I still disagree. If they had heard and understood my concerns, and if the penny had dropped about the fall and the bump on the head, I’m sure they would have done the scan and transferred her several hours earlier. But the system says that all was done correctly. I ask myself, what would have happened if I hadn’t been there, if I hadn’t badgered the nurse in the way I did? They would not have realised how ill she was until they tried to wake her up for breakfast. Hours later. Even more precious hours.
Doctor: Bottom line is, in my opinion, the patient’s friend spent the night in the system, watching and worrying, rather than trusting. So every perceived delay became significant to her, and was translated into potential harm to the patient. When the gravity of Mary’s condition became clear she saw how worried I was, how worried the nurse was, and interpreted that as an admission of our failure to make the diagnosis earlier. But there is always delay between the onset of a medical condition and its diagnosis, of course there is. Signs take time to develop, observations take time to become deranged. The question is, was the delay acceptable? Was it way outside reasonable expectation? I don’t think it was in Mary’s case. If…if…I had taken a better history and had known that she had fallen and hit her head a week before, I might have put her on neuro obs [hourly checks, as mentioned in the letter], but as she didn’t appear ‘neurological’ when I saw her, I might not have. Overnight we don’t expect nurses to check a patient’s conscious level thoroughly every time they do blood pressures, because patients sleep. I am pretty sure that if Mary’s friend hadn’t been there we would have made the diagnosis in the same time frame. She didn’t need to be there. What her presence did was highlight, to her, how busy we all are, and how we cannot hope to attend to each patient frequently and immediately. No system can offer that.
Friend: I visited her yesterday. She’s in a nursing home now. I still regret what I didn’t do. If I had followed my instincts, made a hell of a fuss, the old Mary would still be there to chat with me. I’m sure of it.
Click picture to explore e-book, or here for paperback version
…and my Amazon author page for novels and short stories