Month: August 2013

I hear you

I heard all of this yesterday, but I doubt anyone will ever know because I am dying. They didn’t think I was listening, but listening is about all I can do. Perhaps one day there will be a way of reading these final thoughts, some scan, some process. I hope so, because they need to know.

I was reasonably alert when I came into hospital, but as the pneumonia progressed I grew more and more drowsy. When I lapsed into this coma – I suppose that’s how you describe it – they called a doctor to see me. I heard it all.

The nurse rushed away from me – her shoes squeaked into the distance – and called over to a colleague,

“Bed 9 looks awful, her saturations are 78 percent.”
“Put her on a non-rebreather…turn the oxygen right up…” answered the other.
“She’s scoring 9 though, should I put out a call?”
“Yes. No. Let’s take a look at her…”
I heard her feet settle at the end of my bed. She picked up my wrist and called out,
“Bleep the on-call, I think the saturations are under-reading because she’s shut down.”

Fifteen minutes later a doctor arrived.

“How is she?”
“Like we said. Drowsy, shut down. I would have put out an emergency call if I knew you were going to take this long…”
“Sorry, I had three others to see first.”

He was gentle, and spoke to me as he examined me. He summoned his senior because he was worried, and they talked to one another by the bed. It was strange – he must have thought I could hear if he talked to me during the examination, but if he thought I could hear why did he talk about me, in pretty impersonal terms, so close to the bed? The senior one spoke first,

“She’s going off. Type 2 respiratory failure. Is she for escalation or ward based care?”
“It doesn’t say she’s not in the notes.”
“OK, then we should take her to HDU.”
“For non-invasive?”
“Not right away, but for an arterial line, monitoring…”
“Can I do the line.”
“How many have you done?”
“She would be my fifth.”
“How did the other four go?”
“I missed one.”
“Ok, you can do it, she’s got a decent radial artery.”

He paused,
“I’m just thinking…if she should be for…”
“For what?”
“Everything. Let me just look at the x-ray and read the notes again. I mean, the ceiling will be non-invasive ventilation, ITU won’t take her…”
“She’s not that old.”
“It’s not that. It says here that her exercise tolerance is usually 30 yards,” (that’s true, my lungs have been awful for years due to smoking) “…and she was being assessed for home oxygen three months ago. She’s close to end stage. Let’s talk over here.”

They moved away. How very sensitive! They talked quietly at the nurse’s station, I think (I didn’t have the strength to open my eyes) – too quietly for me to hear – but I know they were deciding if I should ‘get everything’ or not. If I should be given a chance to live. Why move away now?

Then I realised what they were doing. They were trying to be decent, observing a social convention. I don’t think they were really taking my possible feelings into account, because if my feelings were really uppermost in their minds they wouldn’t have even started to have the conversation in front of me. I mean, what do I care how many bloody ‘lines’ that doctor has inserted? They forgot themselves, and it suddenly dawned on them that it was not the done thing to speak so frankly in the presence of a dying woman. They glanced at my face, probably, and wondered – oh God, what if she can hear? – and they became uncomfortable. I’ve seen and heard a lot of that here; behaviours that are explained not by the needs of the patients, but by the sensibilities of the doctors and nurses.

Anyway, I’m still here, same bed, same ward. Evidently it wasn’t felt to be in my interests to be carted along the corroder and attached to a machine. My family came in and spoke to me, then to the doctors, and they talked some more in a relatives’ room. They spoke for me. Quite right too. Later on I heard a nurse say they had ‘agreed not for resus.’ Fair enough. If these final moments of reflection come to a sudden stop I don’t want them running in and having a go at me. But I didn’t really need to hear all the explication, the justification, the gloomy prophecy bandied about with indifference. If you read this, medical people, be more careful with what you say in future. It takes very little energy to listen, and the words go in.

*

Comment I do not write this from a position of moral superiority. I have said many of those things, and worse, next to unconscious patients. It is expedient and, dare I say it, sometimes necessary to have clinically brutal conversations with colleagues in close proximity to obtunded, delirious, encephalopathic or comatose patients, especially in emergencies. But it’s worth reflecting that we have very little idea as to how much they can hear. Some will be just starting to deteriorate, and their faculties will be reasonably well preserved. Others will be truly insensible. The safest policy is strict separation from the bedside, but we are unlikely ever to adhere to that. So how does this fantasy help? If nothing else, it reminds us that behind every impassive exterior there is a mind, and that mind might, might, be as alert as yours.

Advertisements

A new way of saying goodbye?

Shortly after I joined Twitter he replied to something I wrote, and retweeted it. It was a thrill. His follow-up comments were insightful, incisive and justified. The exchange drew in some more established Tweeps, a few of them followed me, and I felt that I had truly joined the conversation. We followed each other. Thereafter we had the odd interaction, not many, but I tended to agree with him, and he with me. Once, when I felt demoralised after receiving some personal criticism during a controversial debate, he supported my point of view. Coming from him it felt important, and it cheered me up.

Months later I read a Tweet reporting that he had died. I was shocked because he had Tweeted just a few days before. Quite a few commented on his passing. I wrote something, although, never having known him, it was necessarily shallow. I didn’t include his ID…that felt too direct. The brief eulogy was based on the impression I had formed over a matter of months, based on fifteen, perhaps twenty micro-posts. But I was not indifferent, and had to say something.

Then I noticed that an automated daily round up of topics that had interested him was still being generated and posted in his Twitter account. His avatar kept popping into my timeline. Every time it appeared I felt a pang of grief. Then I saw that others who had been referenced in his updates were replying, thanking him for the mentions.

A week later, still haunted by these strange, autonomous updates, I tapped his avatar, took a last look at the hand-drawn likeness, and touched Unfollow. It felt like a disloyal act. Our peculiar, virtual relationship was over.

I have subsequently learned that he was a keen proponent of social media, and a very generous man. I hope Twitter will bring me into contact with even more people like him…(it already has). I suppose an inevitable part of broadening your social and professional circle is that death will touch you more often. It’s not yet clear to me how you respond to the death of a person whose thoughts you are accustomed to reading, but whom you have never actually known. Perhaps, just as Twitter provides a new way of knowing people, it demands a new way of saying goodbye.

Too close: from empathy to over-identification

I know what to do. Make sure I know exactly what the diagnosis is, speak confidently about the possible treatments, have an onward plan prepared to allow some positive focus, a constructive approach. He’s bound to ask about prognosis but I’ll have to deflect that…it’s too early to get into numbers. He’s going to need to see an oncologist. This is just the first hurdle – breaking the bad news. He has an inkling, I know, but we haven’t talked about it openly. I know how to do this.

There will be a quiet, private room. There will be two seats, for him and his wife. I’m going to switch off my phone. The diary is clear for an hour, we can talk for as long as necessary. I’ve done it before, I’ve seen worse. It’s not exactly routine but it’s part of the job.

He’s not much older than me. He shouldn’t have something this serious. I think he’s got young children. Last time I saw him he was on his own, on the ward. We drew some fluid and sent it off for analysis. This is a follow up appointment, arranged urgently after the report landed on my desk. I did mention some possibilities at the time, as I was suspicious even at that early stage. I’ve no idea if he shared his fears with his wife or partner. She’s coming with him though.

What does he need from me? He’s a fairly matter of fact man, he just wants to get to the facts. And that’s how I’m going to be. I’ve got the facts, but I haven’t got the whole story. I can’t tell him how long he’s got. But I can provide a clear interpretation of the facts that I do have. I’ve done it many times.

That I’m thinking so much about this means something. I tell people every week that they have potentially lethal diseases, but this one is bugging me. I think it’s because he and I are similar. We’re at similar stages in our different careers, we both have young families. Am I nervous because I fear for myself when I see him? Am I worried that his misfortune will contaminate me? What is going on if my response to his illness is concern for my own future? If bad luck was contagious I’d be dead by now.

It’s different with the elderly; serious illness is an almost inevitable part of aging. And they tend to take it with little expressed emotion. What was it I read the other day? ‘He had reached an age where death no longer has the quality of ghastly surprise…’ The Great Gatsby. A book about young people. This man is being halted in his prime. I find myself thinking about how I would react if it was me. I’m thinking about it too much, that’s the problem.

I am walking to the clinic. It’s pretty quiet in the department as I arranged to use a room over the lunch hour. They haven’t arrived yet. I go through the notes, but there is no new information. A nurse opens the door and tells me he has arrived. He enters with his partner, they take their seats.

How are you? It’s an irrelevant question, a needless pleasantry.
Okay. Have you got the results?
Yes. There are abnormal cells in the fluid. Cancer cells.
His partner juts forward. You mean it’s cancer?
Yes.
I look at him. He is sweating. He is no longer receptive to my words.

His phone vibrates. In a matter of fact way, as is his manner, he pulls it out of his jacket pocket to read the text. I think he’s consciously carrying on as normal. I glance at the lighted screen of his phone, and see the image that he has saved to his home screen. Two children. I am rocked by the sudden realisation that he is not going to see them grow up. I stutter. I am very uncomfortable. The professionalism, the experience, the constructive momentum that I hoped would facilitate this consultation, have faded to nothing. I lose my way repeatedly, failing to find a secure path between his need for information and her evolving horror.

10 minutes later they leave. I have laid out the short-term plan, forced it onto the table, and I have avoided the big question about prognosis. But it didn’t go well. I know it didn’t go well. How could it, really? But my ‘performance’ was not right. For a few moments I was swimming in the murky waters of that couple’s emotional pain, and I was not doing my job. Perhaps they noticed. She did, I’m pretty sure.

Empathy is vital in the practise of medicine. It involves understanding a patient’s condition from their perspective. But it lies on a spectrum, with ‘detached concern’ at one end, and over-identification at the other. In this instance I over-identified. Next time I will play it cool. Think less. Feel less. Stay professional.

 

(This fictional episode was inspired by several clinical encounters.)

 

cover to tweet

Click on image to explore e-book, or here for paperback

Precious: a legacy of understaffing in healthcare

I’ve been catching up on Professor Don Berwick, author of the recent NHS safety review. A powerful character, with a powerful, patient centred, emotional approach to healthcare – so emotional in fact that his audiences have shed tears, and readers have cried over his essays. He has said, of the patient-physician dynamic,

“Some say doctors and patients should now be partners in care…not so, I think. In my view, we doctors are not our patients’ partners; we are guests in our patients’ lives.”

The dinosaur in me finds it difficult to swallow that quote whole, and although I see the validity of the aspiration I know that it does not approximate to the truth for many doctors. In an (unsuccessful) consultant interview I was asked, ‘Who is the most important part of the team?’ I paused, thought to myself – ah, I know what you’re getting at! – and said, ‘Well, the patient.’ The questioner marked his paper and nodded; right answer…move on. Did he really believe the answer? Did I really believe my answer? Did he believe that I believed my answer – or was it all political correctness? My cool reaction to Don Berwick’s quote above set me thinking about the reasons why, for some, the doctor rather than the patient remains at the centre of the ‘team’. In this post I will explore the theory that perennial time pressure or overwork, a manifestation of understaffing, shifts the emphasis from one of duty (to the patient, to compassionate care, to perfectionism) to one of exaggerated self-importance on the part of the doctor. If humility is a necessary foundation to compassion, and pride can contribute to medical error, there may be something in it. It’s a subtle psychological trail – bear with me!

My time is precious and you’re lucky to have it

As an SHO I accompanied a consultant on a post-take ward round. He approached a young man who had been admitted as an emergency overnight. The patient was talking on his mobile phone. As my consultant neared the bedside the patient looked up, nodded and carried on talking. The consultant lingered for another 10 seconds, watched as the conversation continued, and turned away, saying, “That was it his chance to see me, and he’s lost it.” The whole team moved on, the patient had no idea what had happened, and he never benefited a consultant level review. I sympathised with my consultant at the time. Now, looking back, I think – hang on, you are only here because patients like him come into hospital. A consultant rejecting patients because they do not show due deference is like a shopkeeper throwing out customers – you are cutting off your own livelihood.

A more quotidien example? A Foundation Year doctor wakes a patient at 3 AM to take blood for a non-urgent but overdue drug level from a patient with difficult veins. The patient complains, verbally or non-verbally, and the nurse requests that the test be deferred to the morning. The FY says, “Look, I was asked to do this when I came on duty at 9 PM, this is the first opportunity I’ve had, this is my window of opportunity…” Once again, the emphasis is on the doctor’s convenience, on access to his expertise, and the patient must submit to his conditions if he wants to receive appropriate care. It’s not the doctor’s fault – he was seeing more urgent cases – but the system is personified in the doctor’s uncompromising expression.

This sentiment carries over into the outpatient setting. A patient rearranges his day to attend a 3.45 PM appointment only to find that the clinic is running 60 minutes late. He is upset. Behind the door the doctor feels harried and rushed. She has lost control of this one, not through indolence, perhaps because three patients in a row had problems that required more than their allotted 10 or 15 minutes. When the doctor and the delayed patient meet at last, both have a grievance. The patient dare not express his (at least not to the doctor herself) for his wellbeing depends on her inclination to do the best for him, to take the utmost trouble. The pressure of time warps a relationship that is already highly skewed in terms of power and vulnerability.

‘Her time is evidently precious, I’d better not ask that third question I was thinking about…I’m lucky to get any time at all by the look of this clinic…’

And for the doctor, what does the fact that this patient’s autonomy has been limited, compressed by the minute hand, mean? It means the patient is dealt with in 7 minutes…because,

‘…he didn’t have a serious disease, he didn’t need a twenty minute chat, and that’s OK, because, damn it, my time is precious.’

The overrun begins to correct itself, the sky begins to clear, all is well with the world once again. That is, from the doctor’s point of view.

The safety connection – ‘It will have to do’

The obvious link to make between time pressure and safety is that when tasks are performed in a rush, or in a state of fatigue or distraction, important steps can be missed or bodged. I think it’s more subtle than that. When doctors embark on practical procedures or a complicated analyses they are usually pretty focussed. But if that task is one of many that require completion in a set timeframe, and if the doctor’s presence has been eagerly awaited by the patient or ward nurses, I wonder if that sentiment – ‘You’re lucky to have me, I’m needed in another five places right now!’ – can foster a tendency to be satisfied with imperfect process, technique or outcome. No one can find a sterile gown…a nurse asks for 5 minutes to pick one up from theatres; the second drug chart is off the ward – can you wait a few minutes while someone fetches it? – ‘No, I’m in a hurry, I need to be somewhere else, it’ll have to do!It will have to do…the attitude that encourages compromise, the ‘normalisation of deviance’, the acceptance that harm is not only inevitable (which it is), but hardly worth trying to minimise.

The habit of self regard

In the days of 36 hour weekday shifts and 56 hour weekend shifts (9 AM Saturday to 5 or 6 PM Monday, no protected rest – the last time I did that was in 2002/3), the fatigue, clumsiness and emotional lability that built up during successive days and nights encouraged an inwardness, a continuous process of self-analysis and self-regard that made me the centre of each patient-doctor interaction. Sometimes this was appropriate, for example when preparing to insert a central line after 40 hours with just a few snatched moments of sleep on the sofa or the mess snooker table – it was a kind of risk assessment, am I up to this? But that habit, of wondering about how I was, how tired I was, how pressurised I was, has been a hard one to shake. It might have infected generations of doctors who now work in more relaxed circumstances, but who still approach their working day with an attitude of ‘This is how much I’ve got to give, I’m the important one here, take it or leave it.’

Service Starts Here

I was once told that in a United States hospital the staff wore name badges with little flaps which, when lifted, revealed the words ‘Service Starts Here’ printed underneath. When I heard this I laughed. It just didn’t make sense. Service? You call what we do in the middle of the night a service? We’re not hotel concierges, we’re doctors! But now, having read so much about how patients have suffered indignities or harms in NHS hospitals, I think I can see how a diminished sense of service can lead to a diminished sense of respect, for patients. The arguments above might go some way to explaining that. But it has to be recognised that lack of any resource leads to a seller’s market, where those have the expertise or skill that appears to be in such high demand can adopt whatever attitude they like. The patients will always come, they have no real choice in an emergency.

During my career I have witnessed huge improvements in junior doctors’ working hours, and I am hopeful that these will allow the sense of duty or service to thrive in future generations. I fear that for many doctors, whose formative years predated these reforms, the psychological consequences of being forever behind, forever tired, forever in demand, forever desperately needed, will continue to cast patients in the role of supplicants. In order to break down that sentient, and assimilate Berwick’s comment about being mere guests, it is necessary to downplay that sense of significance. As we pass through the lives of others, we need to tread carefully and take great care. They have not come to the hospital to see us, but to get better, and we just happen to be the ones they meet when they get there.

 

cover to tweet

Click icon to explore e-book, or here for paperback

Journeymen: why aren’t doctors more loyal to the NHS?

The NHS is being dismantled, privatised, on that I think most are agreed. There appears to be a groundswell of resistance to this, at least there does if you spend time on Twitter. Here socially engaged, predominantly left wing commentators rally to the cause, but beyond the Twittersphere the story does not seem to attract much attention. The BBC is not interested, the press explore it fitfully. Anger is contained. It looks like a done deal. But what of those who work for the NHS? Surely doctors and nurses are fighting, demonstrating, complaining. I don’t see them. Do they have no loyalty? I’m not out there either. Do I?

The Luminous Bed Test
One way of assessing a person’s attitude to the NHS is to ask, in the manner of a market researcher, how they felt during the Olympic opening ceremony. You would assume that most health care professionals felt proud when those illuminated beds lined up to spell out the letters ‘N H S’ for the whole world to see. For me it was an abstract kind of pride. Perhaps that was because the Health and Social Care Act had already received royal assent, and many had identified it as the beginning of the end. Danny Boyle’s choreography seemed like a cheeky, even subversive attempt to signify national affection for a lost cause. The impression was not helped by the news (released before the Olympics were even over) that Trusts were being encouraged to export ‘the NHS brand’. It was that superficial term that caused me to ask myself – What does the NHS mean to me? To answer that requires an examination of my relationship with the NHS. And, like most employee-employer relationships, it’s complicated.

nhs beds

Aerial view of Olympic opening ceremony

Mixed feelings
Doctors, especially those in training, have not always been treated well by the NHS. Until recently the hours were hellish. Now the hours are better but the team-working ethos has been fragmented. Trainees struggle to find the time to study, and are forever cross-covering each other to free up days for essential courses. Some rotas allow no choice as to when holiday is taken, while others rely on the tradition of ‘internal cover’ by which on-call shifts that are ‘missed’ while on annual leave have to be paid back when the doctor returns. The MTAS debacle (a ‘deeply damaging episode for British medicine’ according to the man who led an independent enquiry into it, and one that I was fortunate to avoid) resulted in doctors leaving the country and the profession. Many complaints could be directed at administrative and academic bodies that are not part of the NHS: Modernising Medical Careers (MMC), Deaneries, the Royal Colleges or Medical Education England (MEE) – but the doctor in training who is struggling to progress cannot be expected to understand the subtle tensions that exist between these bodies, it just feels like the ‘system’ – the health service, the NHS.

Self-sufficiency
Doctors in training flit from employer to employer with great regularity. I think I worked for 9 trusts between qualification and consultancy. This unusual pattern of employment demands two qualities – adaptability and self-sufficiency. Adaptability is crucial, because you have to learn the ropes of a new hospital within days, sometimes hours, if your patients are not to be disadvantaged. Self sufficiency is equally important. The doctor who moves through an ever changing landscape of individual trusts seeks constant reassurance that their trajectory is correct, their educational development satisfactory, their emotional wellbeing monitored. They want to know that someone is keeping an eye on them. The system can meet these demands up to a point, but is designed to identify and assist outliers, the ones who are struggling. The majority will move forward, deal with their own problems and dig into their own resources to work through the crises they are bound to encounter…they will not be feel the warm hand of the ‘system’ at their back. So, when their training is complete and they find themselves reasonably happy with their lot, they will attribute their success to their own persistence and endurance. They will not feel grateful to the NHS for the help and encouragement that it gave. The pride that they feel will be personal.

Where does loyalty lie?
In a consultant interview one of the questions was “Will you work at XXXX, or for XXXX?” It was a good question, because it forced me to express the desire, in advance, to be loyal. I had not worked at the hospital and I did not yet know if it deserved such a commitment. Only a fool would have said, “Oh, well…ask me again in six months and I’ll tell you!” On further reflection the question suggested that there should be automatic loyalty to an employer. I asked myself if I had demonstrated loyalty to my previous Trusts? Had I defended them when they were criticised? Had I made an extra effort at work in order to strengthen their reputation? The answer was no. I had whined and whinged about the conditions as much as my colleagues in the pub after work. I had brimmed with frustration when I couldn’t get away for training days. My loyalty lay with my team, my mentors, perhaps with my department, but not with the institution itself. As the expiry date on my contract approached, as my ID card was automatically deactivated (sometimes a couple of days before I actually left), I recognised that I was another employee passing through. Close colleagues would say goodbye, emotions might run high (the most stressful jobs engender a ‘band of brothers/sisters’ feeling) but the hospital wouldn’t blink an eye. The NHS wouldn’t miss a beat. The day after I and my new friends left, a fresh group entered…and a smooth service was maintained.

We are loyal to people and to places. The great mobilization of energy by staff and community in Lewisham, south east London, to defend the downgrading of their local hospital, is a case in point. Loyalty is an emotional response, fed by proximity and constancy. Medical trainees are rather like journeymen of old, moving from Trust to Trust, trading their nascent expertise for a salary, and for the training that ensures ongoing growth, then moving on. Such journeymen do not develop loyalty easily.

Tangible and intangible rewards
Hasn’t the NHS rewarded its staff for the demands it has made? Of course it has…senior doctors are well paid, and risk opprobrium when they moan about conditions on salaries that approach or exceed 6 figures. But money is not the issue, because the changes that are being made will not take it away – and of course, doctors working in the private sector will not be excluded from the financial benefits that its expansion may present. There are deeper, more subtle rewards for working as a doctor in the NHS, but they require us to step back and appreciate how amazing our jobs are. It is easy to forget that working within the huge, impersonal structure has allows us to pursue a vocation. It facilitates the practice of skills that we competed to acquire, and provides the protections and guarantees that come with state sponsorship. Although progress through the system feels random and unplanned, it is at least guaranteed to those who pass their exams and maintain standards. Patients trust us with their lives. Why don’t these benefits engender loyalty? They do…but to the job, to the vocation. Not to the administrative structure within which we work. Perhaps we have been spoilt. Perhaps we will only notice how well we have been treated when that structure crumbles. To really appreciate that structure we need to look up and out, beyond the personal to the societal.

A higher level of concern
If the defenders of the NHS are not motivated by personal loyalty, what is it that gets them up in the morning? It must be because they are looking at it not as providers of healthcare but as sociologists. They are concerned about access, equality, disenfranchisement, the creation of two tiers… These concerns require a higher level of understanding. The problem, I feel, is that most of us are not influenced by these socio-political issues. We are relatively apolitical, we go with the flow, we allow changes to wash over us and hope that our lives will not be disturbed too much. Only social campaigners fight for others. The rest of us just get on.

The one thing that most healthcare workers would respond to is a threat to patient safety. No one can see into the future, no one knows if the gradual privatisation of the NHS will adversely affect the care that patients receive. The full NHS risk register was not published, but it is hoped that the very act of reading the warnings it contained allowed preparations to be made to minimise potential harms. Only as mistakes occur will the case against privatisation grow, but by then we will be reacting to downstream events, not reversing the cause. There are signs. Recently, NHS Direct pulled out of the 111 service for financial reasons. We have been reassured that patient care did not and will not suffer, although an undercover reporter said,

Halfway through the training a manager in the call centre admitted to me and the other trainees that on the weekends the service was ‘unsafe’ because they didn’t have enough staff to handle calls.’

Serco, a private contractor for out of hours primary care services in Cornwall,

falsified figures on its performance 252 times, making it look better than it was, so that serious failings in the service only came to light thanks to whistleblowers.

On the other hand we know that many harms were done to patients before the Health and Social Care Act came into being. The Francis report into Mid Staffs has demonstrated that all was not well with the current system. The NHS and safety are not synonymous. So I, as an individual doctor, with a small view, must accept that I am not in a position to know what is right . I am a worker. I see the decisions being made around me and I may feel comfortable or I may feel uncomfortable… but that is as far as it goes. I do not feel particularly sad to see the NHS changed. For the reasons explored above, loyalty to it is not woven into my DNA. But I do worry that the decision to take it apart was made for the wrong reasons. I worry that public representatives with vested interests voted in favour of privatization because they saw the opportunity to make profits. I worry that providers will walk away when promised returns to do not materialise. I worry that patients will be disadvantaged or put at risk… but these objections are hard to define and shrouded in uncertainty. Perhaps my middling, rather anaemic reaction to these changes is a typical one. That might explain the failure of the medical and nursing professions to rise up.

cover to tweet

Click on image for ebook details or here for paperback