This chapter is for you. It is an open letter to the doctors who treated Ann and to all other doctors everywhere. It is mainly intended for hospital consultants and registrars but all clinicians probably should read it because the criticisms I level at your profession here apply to some extent in the general practice arena and elsewhere too.
That said, I believe that our GP has been nothing short of outstanding throughout recent years. Her support and understanding has been exemplary. That is not to say that her partners have always achieved the same standards – they haven’t – but our GP has been a tower of strength. Thank you.
I also want to praise and thank the nursing staff. With one or two notable exceptions who would be better suited to a career in the demolition business, the very many nurses who looked after Ann were kind, compassionate and, most importantly, focussed on the person, not the condition. We remain forever in your debt. The same goes for the paramedics. Without exception, the ambulance crews were professional, knowledgeable, decisive and yet both calm and just a little bit funny. Oh how I wish you could train the doctors. They have so much to learn from you.
And so to doctors.
To understand the genuine passion behind the criticism I offer, you really need to read the full story. Without it, my words may sound bitter and gratuitous. They are intended to be neither.
If this is your entry point to the story, please go back and read the whole tale – before or after you’ve read this chapter, it doesn’t matter – but read it please. Experience the pain, the distress and the frustration that was caused by your medical colleagues and then perhaps you will not judge me so harshly.
With all that said, I would like to share my experience of hospital doctors over the last two and a half years.
Two Ears, One Mouth
The one quality most lacking in all our encounters with hospital doctors was the ability or willingness to listen. Or to be more accurate, the ability to actually hear when apparently listening.
When Ann wrote her statement to the first resolution meeting with the Trust in February 2016, she spoke of feeling like she had spent the previous year in a glass box, shouting but unheard. Time and again, she tried to give the doctors vital and highly relevant information and she was ignored. That feeling ran through this entire story and remains the case today.
Ann’s story has been told online because the Trust declined the opportunity to hear it privately. I have informed the Trust of the presence of this online version. I have informed the Chief Executive, the Chief Nurse and a non-executive board member. Not one of them has replied.
Ann’s voice is still unheard.
The greatest impediment to listening in the clinical setting is, we assume, lack of time. Doctors are working in a pressured environment after all, particularly so in the under-resourced NHS of today. There aren’t enough doctors and so they are seeing too many patients and cannot devote enough time and attention to each.
But is that true?
Victor Montori, a Professor of Medicine and a doctor at the Mayo Clinic in his excellent book ‘Why We Revolt – a Patient Revolution for Careful and Kind Care’ talks of doctors seeing patients in a blur whereas they should be noticing each patient and seeing them in high resolution. Professor Montori is a very astute guy. It is worth visiting his website (https://patientrevolution.org).
My view based upon our experience is that noticing the patient, truly noticing him or her and focussing complete attention upon them and really seeing and hearing them (seeing them in high resolution) takes no longer than not focussing and listening superficially. It is not a matter of time, it is a matter of making the effort. A matter of simple concentration. That effort is all but certain to be rewarded – and it is all too often absent.
Most of the consultants we encountered were butterflies. They fluttered from flower to flower confident in the knowledge that they were fine, admired specimens and saw each very brief landing on a bloom to be a blessing which they bestowed upon that flower.
What the flower needed however was a worker bee that stayed on the bloom to ensure that the mutually beneficial transaction was properly completed. Not only would the flower get pollenated, but the bee would come away with plenty of nectar. The patient would be listened to and would feel the doctor’s empathy. The patient would feel cared for. Feel that they mattered. The doctor would gain real insight and be in a better position to make correct clinical decisions – which just might just determine whether the patient lives or dies. It seems obvious, but it doesn’t happen enough. For Ann, it didn’t happen for months on end.
It isn’t just about listening and hearing however. It is about talking too.
When we first arrived on the cardiology ward in May 2015, one of the nurses warned us not to attach too much importance to what the consultants said. “If you see ten cardiologists” she said, “you’re going to get eleven different opinions”.
It was a remarkably perceptive remark and to our great surprise, proved to be entirely accurate. The cardiologists, we discovered, were not slow to offer diagnoses and opinions, even in the absence of much in the way of clinical evidence to support their suppositions. In Ann’s case, many of these impromptu outpourings were completely and utterly wrong and caused either unnecessary worry or misplaced hope.
Too many of the doctors loved an audience – whether it was the patients themselves, the nursing staff or a gaggle of sycophantic medical students – and they took every opportunity to demonstrate their superiority. It was as if they had been born with one ear and two mouths.
And as we’re talking about talking, another recurring theme was constantly being spoken to as if we were only three years old.
I understand of course that doctors have to explain some relatively complex issues to a very wide variety of people but it shouldn’t take a genius to detect the difference between someone with learning difficulties and a MENSA member. The two can be distinguished with relative ease. Similarly, it really isn’t that difficult to work out which people want lots of information and which would prefer just the bare minimum.
Between us, Ann and I have eight A levels, two undergraduate degrees, one post graduate degree and two professional qualifications. Between us, we spent thirteen years at university. It is fair to say that we are both reasonably articulate. It should have been pretty obvious that we were likely to understand most of what was explained to us.
The doctors also knew that Ann was a dental surgeon. Ann had over thirty years’ experience in treating patients of her own. Like the doctors, Ann had studied medicine and surgery. Like them, she had dissected human cadavers. Indeed, when it comes to the head and neck, she could probably have taught them a thing or two about anatomy and physiology.
She could certainly have taught most of them a thing or two about ‘bedside manner’.
With few exceptions, the doctors addressed us in the most infuriating and patronising tone and often dismissed intelligent questions with platitudes like “Oh, you don’t want to be worrying yourself about that!”
“Well actually, you condescending twit, I am already worrying my little head about that and the reason that was an interrogative sentence is that I was rather hoping for an answer!”
Of course, I never actually had the courage to say that. Instead, I bowed to their inevitable superiority and kept my mouth shut (more of which shortly).
So why are so many of you hospital doctors such rampant prima donnas?
I think I may have an explanation:
The Super-Hero Delusion
18 doctors are assigned a letter-name in Ann’s story. There were of course many other doctors from F1s to senior registrars and consultants that we encountered on the journey but whose part was not significant enough to be described in detail. In total, I would estimate that Ann was examined or treated by roughly 30 senior doctors, the majority of whom were at consultant level (I’m ignoring altogether the countless unfortunate F1s, F2s and junior registrars here).
Of those thirty or so senior medics, Ann and I came to believe that six of them were brilliant doctors. This special half dozen demonstrated qualities that ought to be shared by every single doctor in the land – empathy, an ability to listen and, more importantly, to hear and of course, excellent clinical skills and knowledge as one would expect. They didn’t just give their time and expertise, they gave their complete attention to Ann and gave it with compassion and kindness.
Just six out of thirty. Hardly an impressive haul.
So that they know that they are recognised and appreciated, they are:
Dr A, the ED doctor on that first night in the Hull Royal Infirmary ED who watched Ann’s monitors all night and probably saved her life by not discharging her.
Dr D, who re-admitted Ann leading to the discovery of the stenosed coronary artery and later dealt with the consequences of the post-operative haematoma with such kindness and compassion.
Dr E who persisted with the investigations into Ann’s ischaemic pain and inserted the stent in her artery, later giving her his personal mobile number so she could contact him if there were any problems and always came to see her during subsequent admissions even though he was no longer involved in her care.
DR N, the ED consultant who was so wonderful with Ann after her cardiac arrest whilst simultaneously dealing with the terribly injured girl who had jumped off the Humber Bridge.
Dr Q, the pain consultant who still sees Ann regularly and will not rest until everything possible has been done to eliminate Ann’s ongoing pain.
And finally, Dr S who performed the third implant procedure at the Freeman Hospital in Newcastle resulting in an immediate and radical improvement to Ann’s dreadful suffering.
You know who you are. Thank you from the bottom of our hearts.
Of the remainder, a few were little more than a face during a fleeting encounter and so little is remembered of them. Many however played a more significant role and fell well short of the standard every patient should be entitled to expect. In my opinion, at least ten of the doctors, including all those that made serious errors in Ann’s care, suffered from what I will call the Super-Hero Delusion. It is perhaps another way of saying that these doctors are astonishingly arrogant or downright pompous combined with a terrifying level of self-belief.
There are, I suspect, many complex reasons for this.
Doctors, and hospital consultants in particular, are accorded a remarkable level of respect by patients by default. Those of us without medical training tend to be in awe of their skills and knowledge – and I certainly was before our story began. Sometimes, as was the case with Ann, we are obliged to put our lives into their hands – quite literally. To be able to do that with any degree of confidence, there is a need for us to afford special status to them. In our minds, we elevate them to a super-human level. We put them on a pedestal.
To do so makes us less scared.
If they’re super-human, we’ll be OK, we reason.
Some of that rubs off.
It isn’t helped by the default structure of medical care in hospitals. There is an ingrained hierarchy in place in every hospital in the world and the consultant sits atop the pyramid. He is feared. He is obeyed and he is listened to.
Even if he’s talking rubbish.
Little wonder then that some of this goes to their heads. Some consultants we met had become so corrupted by their special status that they had become flagrant narcissists. Dr L at Castle Hill Cardiology (who never actually treated Ann, thank God) is an extreme example of the deluded super hero clinician. I daren’t even write here my opinion of Dr L. Suffice to say I think I there are probably an awful lot of mirrors in Dr L’s house so he can see how wonderful he is as often as he possibly can.
But even in its milder forms, the super hero delusion can still be extraordinarily dangerous. Let us take a look at Ann’s experience in the ED in August 2015 before she was inappropriately discharged only to have a cardiac arrest at home hours later:
Dr G, who looked after Ann that night was by all accounts a dedicated and capable doctor and yet she made a catastrophic error.
Dr G didn’t listen. Or if she did, she didn’t hear and if she heard, then she didn’t believe what she was being told – even though it was completely accurate.
She didn’t focus on the patient. She didn’t see the patient in high resolution and so she didn’t see what was right in front of her. She allowed her overwhelming confidence in her own ability and judgement to completely override the information she was being given. She ignored the facts and preferred her own opinion.
Let’s not forget, Ann had been rushed to hospital after an episode of violent palpitations and central chest pain with partial loss of consciousness. She had previously been recorded (in the very same unit) with sustained ventricular tachycardia at 240 beats per minute for 35 minutes and was already being treated for that condition. She had already had a coronary stent inserted and her cardiac circulation was now “A1”. Her arrhythmia however was not yet fully controlled and she was a clear risk for sudden cardiac arrest.
This is what I think Dr G saw when Ann presented:
Dr G had seen Ann’s ECG which was now normal. The VT had stopped, for the time being at least. She had tested Ann for Troponin and the test was normal. She looked at Ann and saw a fit, healthy and attractive woman. She didn’t like the way that Ann described her symptoms like an experienced clinician (which is exactly what she is of course). She ignored the medical history and completely dismissed what Ann was telling her.
By contrast, this is what she should have seen:
My graphical interpretation may be slightly wide of the mark but probably not very wide. There is no doubt that there was an incorrect reading of the patient and it very nearly cost Ann her life.
Ann’s medical history was ignored and she was treated based on how she appeared and on an over-confident and wholly incorrect opinion instead of based on the evidence presented. Ann wasn’t even placed on a monitor. If you’ve read the other chapters, you will know that she was not seen by a cardiologist, she was not admitted and she was instead discharged the following day (by a gastroenterologist!) only to have a cardiac arrest five hours later.
The super hero delusion: I’m a doctor and I’m never wrong.
Well doctor, you were wrong this time. You couldn’t possibly have been more wrong.
The super hero delusion was also at play when Ann told the doctors and nurses time after time that something was very wrong with the wound site after the first implant. It convinced staff that she was being a drama queen – so much so that they didn’t even bother to check for themselves – so she developed a massive haematoma, she was left in agony and her ventricular lead was displaced so the whole procedure had to be repeated.
The same was true when the staff believed that Ann was refusing to get out of bed after the second implant rather than that she was incapable of doing so. Nobody has pain like that after a simple implant. She must be making it up. I’m so confident that I’m right that I won’t even check her out.
It happened yet again when she told them of the post-operative pain at the out-patient clinics. It couldn’t be that. That doesn’t happen. She’s exaggerating. We know best. We’re the experts. We’re the super heroes.
No focus. No listening. No hearing. No compassion.
Well, my dear doctors, you are not super heroes. All of you are fallible. You make mistakes like the rest of us. And if you admitted to them more often, and occasionally actually allowed yourselves to learn from them, then hospitals would be a very much safer place.
And by the way, it is still not too late to admit the errors in Ann’s case.
In the meantime, please leave the narcissism at home and re-learn the simple art of listening – the simple kindness of giving the patient your undivided attention. If you do, there might be fewer mistakes in the first place.
Treat the Person, not the Condition
In a world of increasing complexity and technology, there is no doubt that medicine has to be divided into an increasing number of specialisms so that doctors can assimilate the vast amount of knowledge they need to treat us safely and effectively.
Unfortunately, specialists like to stay within their specialism. They are comfortable in their comfort zone. And sadly, they no longer seem to see their job not as making the patient well, but rather they see it as curing or treating ONLY the specific conditions within their specialism. The rest is somebody else’s problem.
Which at times is a profoundly stupid approach.
One example of that stupidity which we came across is the widespread use in the electrophysiology world of Amiodarone, a drug that was at least twice put forward as a suitable treatment for Ann (but fortunately not given except when Ann’s life was at immediate risk).
The first problem with Amiodarone is that it works really well, especially for ventricular tachycardias like Ann’s. It is a highly effective anti-arrhythmia drug. It is much easier for doctors to prescribe Amiodarone than spend the time to test and assess the effectiveness of the less harmful alternatives.
Unfortunately, the second problem with Amiodarone is that it has more nasty side effects than you can shake a stick at.
It causes interstitial pneumonitis (a form of pneumonia that can be fatal) and fibrosis of the lungs (irreversible scarring of the lungs). The scarring can occur in as little as a week after treatment starts or take years to develop. It’s a bit of a dice throw. But develop it will.
Amiodarone also causes abnormalities of the thyroid because Amiodarone is structurally similar to thyroxine (a hormone produced by the thyroid gland) and causes both hypothyroidism and hyperthyroidism (slow and overactive thyroid respectively). It also causes micro deposits in the cornea of the eye in 90 per cent of people taking it along with a host of other less common but more serious eye problems. So, your arrhythmia will be much improved but you might not be able to breathe or see very well.
Amiodarone also causes abnormal liver enzymes which can lead to jaundice, liver enlargement and even hepatitis and cirrhosis. After 18 months, it can also cause a blue-grey discoloration of the skin with acute light sensitivity. It can build up in the male testicle and cause inflammation in the epididymis and men on long term Amiodarone can also develop breasts. Long term use can cause damage to the peripheral nervous system affecting sensation, movement and organ function and one study even suggests that it is also linked to cancer.
So, cardiologists or electrophysiologists can prescribe Amiodarone confident that their patient’s arrhythmia will be controlled. They have done their job. The patient is likely to disappear from their list of problems. Box ticked. Bed cleared.
In due course however, there is a very good chance that the patient will become a new case for the departments of pulmonology (lungs), endocrinology (thyroid), ophthalmology (eyes), hepatology (liver), dermatology (skin) and, potentially, oncology (cancer). So instead of using the resources of just one hospital department, that unfortunate patient may move on to using the resources of up to six other departments.
The problem hasn’t been solved, it has been multiplied. But our electrophysiologist doesn’t care. It isn’t his problem any more.
Is that a sensible use of scarce NHS resources? I think not. Is that a satisfactory outcome for the patient? Of course not. His condition has been treated…
But he hasn’t.
Instead, his life has probably been ruined.
Doctors, please treat the patient, not just the condition. Invest a little more effort and maybe a little more time – to protect the precious resources of the NHS from your bad decisions and to preserve some quality of life for the poor patient. Climb out of your specialist silos and engage fully with the patient so you can achieve a holistic result that maximises the patient’s quality of life and doesn’t just tick your specialist box.
Right First Time
There is, I don’t doubt, enormous pressure on clinicians to discharge patients as early as possible to ‘free up’ beds for more inbound patients. I’m equally sure that doctors would blame this on the armies of faceless managers and pen-pushers who appear to run the NHS these days – and they may be quite right to do so.
Nonetheless, it is you the doctors who sign the discharge forms and in Ann’s case, I suspect that all five discharges from Castle Hill were premature or entirely inappropriate. Indeed, it could be argued that she should only have needed to be discharged once had her treatment been carried out right first time.
Ann now has an ICD, takes regular and highly effective anti-arrhythmia medication (Sotolol) and has a single coronary stent in her LAD. Ignoring for now the harm done to her by the many mistakes that were made, she could and probably should have got to that point in a single hospital stay. Even if all of that meant that she would have been there for a month, that would still have been less than half the hospital nights that she actually endured because of the premature discharges and mistakes (she has spent around 65 nights in hospital so far).
Indeed, it is possible that if sufficient time and effort had been invested in finding the right anti-arrhythmia medication at the outset, the ICD implant would never have been necessary at all, saving hundreds of thousands of pounds in expensive medical devices, surgical procedures and everything that went with them not to mention the untold suffering, loss of livelihood and all the rest.
My point is that for whatever reason, the doctors display an unhealthy (and that is a very appropriate word) desire to get the patient out of the door as fast as possible. Whether that is in the patient’s best interests appears not to be a factor in the decision. She’s unlikely to die. If she gets in trouble, she’ll probably end up back here anyway so GET RID OF HER!
And we the patients and patients’ carers say nothing because we don’t want to be in hospital in the first place.
It is nothing short of sheer madness. And it is endemic.
And you, dear doctors, can stop it if you try.
Our experiences over the last two and half years tell us that the failure to listen, arrogance, the lack of holistic medicine and premature discharges must be costing many lives across the world. In particular, the failure to focus, to listen, and to hear is causing serious harm. Ann was lucky is some ways – she is still here. Many are not so fortunate. I read recently that between 9,000 and 20,000 people die in the UK each year as a result of medical error. In the USA, it is the third most common cause of death (after heart disease and cancer) causing over 250,000 unnecessary deaths. ((Research by John Hopkins University – covered in the British Medical Journal; BMJ 2016; 353: i2139))
Enlightened doctors are awake to this. Victor Montori I have already mentioned. Rob Hackett, a senior consultant anaesthetist in Sydney, Australia is another. Rob’s campaign about patient safety is also worth following (http://www.psnetwork.org).
However, so far, too few of you have put your heads above the parapet to stop this madness.
I hope many more of you doctors will join the revolution.
When you do, you will have my undying respect.