The patient’s point of view

Intrusion

 

intrusion

Two students arrive on the ward, as per the arrangement that has slipped my mind. I see them loitering by the nurses station. They are eager to see and hear signs – that’s all I wanted when I was at their stage. Unprepared, I scan the names on the white boards at the end of each bed bay. There! An elderly patient with florid aortic stenosis, a slow rising pulse, oedema in the lungs and in the skin… but she is frail, she is ‘end stage’. Some days she is bright and talkative, some days she is withdrawn. Today she is in between. Her clinical signs are classic, and it would be a shame if the students did not have the opportunity to examine her.

 

I remember similar encounters from my own training – the first murmur, the first example of bronchial breathing; they stuck in my mind, and advanced my knowledge. So, I am decided… I will ask the patient for permission to be examined by the students. Before doing so I flick through the notes to catch up on any developments. I see the coloured A4 sheet used by the palliative care team. They have been asked to see her for symptom control, and to help arrange her discharge. They came this morning, just two hours ago. And prior to that entry is a short note from the registrar saying that she has spoken to the patient and her middle aged son to explain that there is now nothing more that can be done to optimise her breathing or oedema. She has progressed from ‘end stage’ to ‘end of life’. It is not obvious to the passing observer. She is the same woman.

 

The students are looking at me in expectation. Should I ask her? It will not benefit her. It will probably tire her. It will not be in her best interests. But neither is it positively harmful. And the signs… so precious, educationally. No, I’ll leave it. It’s not fair. I approach the students and explain that in the absence of any other obvious patients we will tour the acute medical unit and find something there. Then I glance back to the patient and watch her. She is sitting out, and looking out across the ward. I reconsider. I approach.

“Mrs ______,” I say (gabble actually), “I wondered… if you wouldn’t mind… please say No if you are too tired… if two students came to ask you some questions and examine your heart?”

She looks around slowly. I think she heard and understood. But I have to ask again. She nods, which I interpret as consent. I beckon the students over, and watch as they perform the examination. I then demonstrate the signs, before getting them to examine again, until they are satisfied that they have heard and absorbed the features of the disease. We leave. It has taken twenty-five minutes, with feedback given along the way. The patient sits passively. It has tired her, as I thought it would. The look in the eyes of the students is priceless. Descriptive words on a page in a book have evolved into physical, memorable reality.

 

They thank the patient and they thank me. Their morning was well spent. My morning was well spent. Her morning was devoted to the education of two students who had nothing to do with her, and the convenience of a doctor, an educator, who offered nothing in the way of medical care. But that’s what happens in hospital. When there are students, or doctors studying for exams, the question will always be asked. Sometimes it feels uncomfortable, and the path of least resistance appears attractive (‘Sorry guys, I don’t want to trouble her today…’). However that path does not lead to the best educational experience – the palpable liver, full of metastases, nystagmus secondary to a disabling cerebellar stroke, the petechial rash due to acute leukaemia.

 

Patients can say No of course, but in my experience they rarely do. The thing that is asked of them sits outside the usual therapeutic transaction. Consent, when asked, relates not to an intervention, but to what amounts to a ‘favour’ – their time, their inconvenience, in exchange for knowing that they have contributed to a general good. Often the reply is not so much a ‘Yes, of course…’ but a ‘Well they’ve got to learn haven’t they!’ That phrase contains an imperative – an expectation. I have very rarely heard a patient say ‘No, no thanks, not today,’ although I have read as much in their look of pained exasperation, or the unfocussed gaze that betrays distraction, by unresolved concerns – questions, prognosis, a scan result, disability, mortality. It is easier when you know the patient, but sometimes a colleague will have tipped you off about a valuable examination before a teaching session. Then you must introduce yourself, explain the purpose of your visit and ask permission all in one go – the fast track. It feels intrusive. It is intrusive. But it is necessary.

 

See also ‘Signs’

 

oOo

 

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Overheard

The medical ward. A concentration of illness, anxiety, uncertainty, need and exemplary patience. Each patient, although concerned primarily for their own welfare, cannot avoid noticing and following momentous events in the lives of others. The architects of the ward designed a semblance of privacy, and the medical staff try to maintain it by pulling (literally) paper-thin curtains around the defined space that belongs to each patient. Sometimes the edges of the curtains do not meet, allowing glimpses of flesh, a trembling hand, a bent back or shuffling feet. These things are only seen if the patient opposite chooses to watch. The skill that one acquires in pressed tube trains or crammed lifts comes into its own – the ability to ignore, to pretend that it is not happening, to avoid eye contact until decency or distance has been regained. Even if the curtains do meet, the air above, below and around them is unrestricted. Sound travels. Only whispered words remain in the immediate vicinity of the patient. Doctors tend to shout rather than whisper. Perhaps it is the fact that a good proportion of their patients are deaf, and many are barely responsive. The habit of communicating declaratively and with painful deliberation, like an ignorant tourist in a tumultuous bus station somewhere in rural China, is sometimes hard to modulate.

 

I sit on the edge of a patient’s bed, while his wife leans forward in the chair alongside. He looks over, eyes tinged with yellow. His liver has failed, and there has been no response to medication. I am here to tell him that this failure to respond means that his chance of survival beyond six months is less than 25%. There is no point using numbers. Instead I say that the time has come to think about going home, but that other parts of his body – like the kidneys, and later the heart – may soon begin to fail in sympathy with the liver. If that happens he may become too weak to move, and will begin to die. Alternatively, a sudden emergency such as bleeding from the gut or overwhelming infection, may hasten his deterioration. We will make sure that there are nurses and carers at hand to help him remain comfortable. He is 42.

 

The younger doctor, who remained standing (there was no room for another chair, and the patient was too ill to come into the relatives room) reads the situation correctly. We have finished. She parts the curtains slowly, respectfully. Not briskly, as we do when the news has been good, when the discharge plan has come as a symbol of recovery or cure. She and I walk back to the notes trolley. We pick up the folder of the next patient. Another man in middle age, another partially destroyed liver. We approach, and I pull the curtain round. His illness is less advanced, but the trend in his blood tests is not encouraging. There are tears in his eyes. He looks up and says,

‘I don’t want to die.’

‘Why do you…?’ But I know why. He has heard everything.

 

 [As usual, the scenario described is based on historical experiences and not a single case]

oOo

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New booklet, 78 pages, £2.99 – recommended for trainees, consultants, nurses involved in the acute medical care. Click picture to explore

 

Glide

glide4

A now traditional Christmas Carol-esque cautionary tale for busy doctors, which also owes something to another, less esteemed cultural influence…

oOo

Jim, a thirty-something medical registrar, stared out of an eighth floor window into the lifting darkness. With dawn came the prospect of home, and the end of his fourth night on call. He thought about going to the pub on his way back, but decided against it. Beer, at 9.30AM! What a mess.

A patient called out to him. Jim averted his gaze, the time-worn method of avoiding engagement with those who might distract him from more urgent tasks. But he was doing nothing, just staring at the city’s transition below, so he answered.

“Can I help you Sir?”

“Here, here.” growled the old man. Jim liked the look of him; there was humour in his eyes, a spark of cynicism.

“Yes?”

“Come here lad. I’ve got something to tell you.”

“Go ahead. I might get bleeped away though.”

“No, you won’t.” The tone was oddly prophetic. With a thin arm he directed Jim to make himself comfortable on the bed. Then he began…

I was a doctor you know? I was. I don’t tell people when I come into hospital… at 85 I know very little that would help, medically. But I know how people should be treated. I’ve been studying you… Jim, isn’t it. You’re at the top of your game aren’t you. Slick. I’ve seen you field questions, referrals, crises. You know a hell of a lot, and you think clearly. You’re fast too. I was fast. I could get round a huge ward of patients in a couple of hours, I could see twenty-five in a clinic. At your age. Then… I changed. I slowed down. I annoyed those in charge of the hospital, I caused a backlog, but I had to, you see. Want to hear why?”

“Yes.”

“I was doing a ward round. A man grabbed my hand, a bony hand it was – just as I grabbed your attention a moment ago. He pulled me down so that his mouth was at my ear, and he said – young man, you’re gliding, you’re gliding. Like you Jim. You glide. You’re fast and you’re smooth but you never touch down. What did he mean? He meant… I wasn’t connecting, wasn’t engaging. I wasn’t leaving anything behind. I was fast yes, I made the right decisions, mainly, but after I had left the patients they could barely recall the interaction. Do you remember seeing me yesterday Jim? Vaguely? You were in and out in a flash, focussed entirely on the medical facts. I was impressed, you made the right diagnosis and changed my treatment for the better, but I wanted to talk to you… about something else. I started, but you were already turning away. Teflon. Smooth. You didn’t realise I had something to say, because you were not open to the possibility of anything obstructing your serene progress through the ward. Leaving nothing behind…”

“How can you leave something behind with every patient? You’d be eaten away.”

“Nice image! Like piranhas eh? No, no. It’s exhausting, it has to be. If it’s not exhausting you’re not doing it right. It’s called empathy, and it costs, in the short term. And to do it you have slow to down, and touch the ground.”

Jim nodded, not exactly in agreement, but too stunned to object.

“Anyway, just a little bit of feedback! Off you go Jim. Get home.”

Jim stood up, ashen faced. He murmured his thanks and walked away. When he arrived at the nurses’ station he turned to look at the old man, the gnarled old physician with bright eyes. The bed was empty.

“Talking to yourself were you? Bit tired?” asked a nurse.

“Possibly. Possibly.”

And he walked home, slowly.

oOo

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Consultant outcome data – GP skit

Terence needs a bowel resection for cancer. This was found at colonoscopy as part of his company’s health insurance policy . His GP has referred him to Miss Emma Thomas, a colorectal surgeon at the local Trust. Terence has looked her up on the new NHS England ‘Consultant outcome data’ website. He has some concerns.

 

In the GP surgery 

Terence: “I looked her up. I’ve got some questions.”

GP: “Go ahead.”

“Right. I looked her up by name, and it said that her mortality rate was ‘OK’ – which I assume means acceptable, safe…”

transpidity base

“Good.”

“But when I clicked on the ‘source data’ it showed all the surgeons in the hospital, and Miss Thomas’s adjusted 90 day mortality rate (I think I understand that) was 8 or something… whereas some of the others were much lower, between 1 and 3. It made me think, I want to have my operation done by one of those.”

transpidity colleagues

“Right. Right. Well…”

“So can you re-refer me? I haven’t actually seen her yet.”

“It’s not that easy actually.”

“It is my choice isn’t it.”

“It is. Certainly. But let me explain… this data is helpful, but I think it’s the outliers you really have to look out for. And Miss Thomas is certainly not an outlier. She’s very good. And very nice to her patients.”

“But she’s had 4 deaths, based on 70 operations… while the best one in that group has had only 2, out of 90! I don’t want to be number 5. It’s obvious.”

“It may be that her colleagues have operated on less sick patients.”

“It’s adjusted isn’t it?”

“It is, you’re right. But those deaths, they are within the expected, or acceptable range.”

“Not to the ones who died, surely.”

“No. Sadly though, some deaths must be expected in patients with serious bowel problems. Sometimes they come to hospital as emergencies in a terrible state, with infections or obstruction, and they can be very frail…”

“So you think Miss Thomas has had more than her fair share of those?”

“I can’t say…”

“Or just a bad run of luck?”

“Well… who knows?”

“If you don’t mind I’d rather not be operated on by her until that run of luck has run its course.”

“Terence, this data.. I’m not sure if it’s really designed for such detailed scrutiny. The basic fact is, all the colorectal surgeons in that hospital are good…”

“Some are better than others though…”

“The more experienced ones, possibly…”

“Is Miss Thomas new then?”

“She is the newest, but she’s been there for 18 months.”

“Still on her learning curve? So you are asking me to agree to being put on that learning curve?”

“No. She’s fully qualified.”

“The older ones must be better. It makes sense.”

“They are a team, they collaborate, advise each other. You will be cared for by the whole department. The hospital as a whole does very well when you look at the graph of all the Trusts in the area. You saw that?”

transpidity trust

“I did. It takes you to a secondary website, coloproc- something.”

“Exactly. Your ‘outcome’ will depend more on how the unit is run as a whole than your individual surgeon’s skill…”

“Really? You mean that?”

“I do. This isn’t eyewash.”

“But doctor… who would you want to do your operation? Or one of your parents?”

“I understand completely what you are saying Terence. I would instinctively go for the one with the lowest number, of course, but as a doctor, as someone who worked in surgical units as a trainee, I know that it’s often more about the general quality of care you receive. There are surgeons who are technically questionable, but there are lots of systems in place to identify those… and as I said, if one was an outlier on this website I would steer clear. But the mortality limit has been set for a reason here, and if your surgeon is below that limit then you should be confident that your treatment will be acceptable.”

“If not the best?”

“We can’t all have the best all the time.”

“Just average then?”

“Average is good, sometimes. Acceptable is… acceptable.”

“Average is average, surely. And below average is… ‘OK’”

“It’s…”

“It’s what I must settle for.”

“I really…”

“I know. I’ve taken up enough of your time. Thank you.”

 

 

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Glances

I’m sure this, or a variation on it, has happened…

What a shambolic display of medical mores.

Two days after being admitted with liver pain I went for a scan, returned to the ward, and waited for a doctor to come and tell me the result. I put down my book and saw the (most) junior doctor look something up on the ward computer. I’m sure it was my result. She glanced anxiously in my direction. Bad sign. Then she picked up the phone and called her registrar (I presume). She nodded to whatever she was being told. The decision, I guessed, was wait for the big guns to deliver the bad news bombshell. Then her immediate senior walked onto the ward – I had seen him in the morning, he was an SHO I think. Now he looked at the result, bending forward to look closely at the words or the images, and shook his head slowly! He did not know that I was watching him; I was in a bay diagonally across from the nurses’ station, near a window, and the line of sight was not obvious. Sadly, though, I was watching. What else was there for me to do, apart from immerse myself in the latest Le Carré? Then the registrar joined them. I knew she was ‘on-call’, and as they showed her the scan on the monitor a crash call came through… so she left the ward just as smartly. The other two began to leave, but the SHO couldn’t help glancing in my direction as they passed the end of bay. I got out of bed fairly smartly and hurried after them,

​“Have you got the result of the scan?” I asked. Another glance – this time exchanged between the two of them. Natural I know, but so… obvious.

​“We’re…” then the SHO paused.

​“Yes?”

​“I really wanted my registrar or consultant to…”

​“To tell me?”

​“Yes.”

​“Oh.” What could I say? It was clearly very bad news. But neither the most junior, nor the second most junior member of the team felt able to tell me what was going on.

​“When can they come up to the ward?” I asked.

​“Our registrar has just been called away on an emergency,” the House Officer explained.

​“Yes, I saw that,” I wasn’t giving up now, “And the consultant?”

​“He’s doing a ward round tomorrow morning. He’s off-site now.”

​“What does off-site mean?”

​“Not here. In a clinic in another hospital.”

​“So tomorrow then?”

​“Yes. Is that alright?”

​“I suppose so.” But it wasn’t. I spent the night worrying, not sleeping, turning, anticipating the worst. And when it came, the following day, I was almost grateful to be given the details. I had many questions, and I’m sure the juniors would not have been able to answer them.

Now, over half way through my treatment, I look back and realise that it made no difference, the delay – but it was awful nevertheless. It was awful because they knew something about me but I could not find out what it was. It was secret knowledge, just for those with privileges. I could tell it was bad news, because I am not stupid, I picked up the signals, but they…they were not adequately skilled to tell me straight away. They needed to send it up the hierarchy. You know, I’d rather have been told in an unskilled way than be left worrying about it for twelve hours. I think. Or I’d rather not know the result was back, ready to be delivered. I’d rather have been like my poor, elderly neighbours on the ward, barely alert, lacking perspicacity, passive agents in the medical machine. A machine in which we are supposed to occupy a central position, but which, at the end of the day, works in its own, measured, imperturbable way.

oOo

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The patient as riddle

LOTRriddle

‘Speak friend and enter’ – riddle on Westgate of Moria (Fellowship of the Ring)

Recently a patient said to me, ‘Thank you for taking an interest.’ This compliment reveals a whole world of problems. It says, in ascending order of alarm –

  • Up until now no-one has been interested
  • I’ve been looking for someone to invest their time and attention in my problem
  • …because until someone takes an interest in you, things don’t get done
  • …and if you don’t manage to find a doctor who is interested in you, you’re on your own
  • Will anybody actually engage in my problem if I’m not interesting?

So what role does interest play in the patient-doctor relationship?

Sparks

A patient enters the clinic room. Another referral, another challenge. But the referral letter includes some tantalising pieces of information, and the patient describes how an unusual symptom developed three weeks after returning from, say, Bolivia. Sparks of interest meet the kindling of barely remembered lectures on tropical disease; you search your memory, plan some investigations. After clinic you make a special effort to expedite a scan or ensure that a special blood test is sent away to another lab. The game is afoot. The game? Is this really a game?

Doctors are problem solvers. There are many problems to solve in medicine, and until you qualify those problems are generally intellectual – a combination of pattern recognition when presented with pathology, and cross referencing disparate physical symptoms or signs with the huge database of information that has been created during your medical education. At his or her purest, the useful doctor is an inspired search engine, able to discard irrelevant diagnoses and focus on the probable, before seeking confirmatory data to back up the initial hunch. In training the focus is knowledge and its application. How many doctors reading this, as students,  left a ward full of ill patients in a huff, muttering, ‘No signs, no signs!’?

But the first day on the wards presents very different problems to solve, such as how to prioritise an unmanageable list of jobs, how to persuade a radiologist to perform a CT scan in the desired time frame, how to placate the nurse who needs you to re-write a drug chart while you run off to an emergency. A job that seemed cerebral becomes predominantly organisational, and this can make some young doctors downhearted. Then, if you persevere, learn how the system works and become more senior, the opportunity to make diagnoses and test hypotheses yourself comes around. You admit patients, see, hear and feel the signs that you once read about in books, and start to believe in medicine again! You begin to see ‘interesting cases’.

The high priests

What advantage do ‘interesting cases’ have? By virtue of the clinical features that these patients report or display, they generate energy. They stimulate conversations, the swapping of ideas, the easing open of dusty books (or more, likely, tapping into PubMed), the seeking of multiple opinions…the chase is on to get the right answer and find the right treatment. While such focus is commendable, if not vital in some urgent cases, the price may come when doctors get carried away in the search for jigsaw pieces that fit the puzzle and lose sight of the person before them.

In ‘5 patients’ (available to read for free here) the late Michael Crichton wrote about the game that can play out when a student or trainee and their supervisor spar over the meaning of various clues, and presented an impenetrable piece of dialogue as an example:

Student: “The patient has kidney disease consistent with glomerulonephritis.”

Visit (by which he means a resident or attending, I think-PB): “Was there a recent history of infection?”

Student: “Anti-streptolysin liters were low.”

Visit: “Was there a facial rash?”

Student: “LE prep and anti-nuclear antibodies were negative.”

Visit: “Were there eyeground changes?”

Student: “Glucose-tolerance test was normal.”

Visit: “Did you consider rectal biopsy?”

Student: “The tongue was not enlarged.”

The conversation ‘jumps from mountain top to mountain top’ as both parties demonstrate that they know what the other is referring to without saying what they mean explicitly. They are caught up in a trail of clues and deductions; if the patient were listening (as is often the case on ward rounds or teaching clinics), they would be bewildered. But patients do tend to tolerate such jargon heavy, exclusive exchanges, recognising that they are relevant to their own condition even if they are beyond their understand. In such scenarios paternalism, even sacerdotalism (whereby doctors act as mediators between humans and the unknowable mysteries of the body) rise again.

house white board     The whiteboard

A seductive game

As non-patients, we enjoy such games. Hence the popularity of TV shows like ER (created by Crichton) and House, where the plot is driven by a race against time to understand the relevance of various medical clues. Despite the human interest, the success of these shows depends on the writers’ ability to find a good medical topic, be it radiation sickness or the clichéd ‘lupus’, and set up a sense of jeopardy. The famous whiteboard, on which House’s photogenic team record their ideas, illustrates how medicine must, when pared down to its essentials, focus on the facts. The working title for House was ‘Chasing zebras, circling the drain’, zebras being rare conditions. House was itself inspired by the work of a New Yorker journalist, Berton Roueche, who wrote up real life cases of medical detection from 1940s until his death from suicide by shotgun in the 1990s. Eleven Blue Men (1953) presents 11 such cases, and is for sale in hardback on Amazon at £143! There is no doubt about it, doctors and non-doctors alike are fascinated by zebras.

biggerthanlifeposter

The film Bigger Than Life, starring James Mason as a patient with polyarteritis nodosa who becomes addicted to cortisone, is based on Berton Roueche’s work.

It and Thou

Back in the real world the physician Jeffrey Ennis explored this progression from the factual to the holistic explored by reflecting on his own experiences. He presented to hospital with neurological symptoms such as shoulder pain and tongue numbness, which were eventually diagnosed as due to Guillain-Barre syndrome. He contrasted the attitude of the emergency physician, which he found ‘insensitive and depersonalizing’ with that of the neurologist, who was ‘comforting’. Ennis then invoked the philosopher Martin Buber’s categories of ‘I-It’ and ‘I-Thou’ relationships, and concluded his piece with this:

‘The physician-patient relationship is the vehicle through which such care is provided. In an I-It relationship, the patient and the problem are objectified, allowing the physician to collect and analyze data about the patient’s problem in an effort to offer a solution. Taken to an extreme, an I-It relationship can be dehumanizing.

 At the other end of the spectrum of human interaction is the I-Thou relationship, where the physician experiences the patient as an emotional being. This allows the clinician to empathize with the individual’s situation and to offier psychological support. Taken to an extreme an I-Thou relationship can result in the clinician becoming confluent with the patient’s emotional state. As a result of this, the physician becomes psychologically paralyzed and is unable to offer objective clinical assistance to the patient.’

Buber Martin Buber, philosopher

There is clearly a place for both, but they lie on a spectrum. In my mind the balance tips towards the I-It in emergency situations, where the jeopardy is greatest and the unknowns are numerous. Then, having achieved a degree of safety and stability, the doctor can move towards the I-Thou end of the spectrum. This approach might seem reasonable, but…it fails. It fails because patients are at their most distressed and vulnerable during that early period of uncertainty, and it is at this time that they need to see human qualities and a willingness to empathise. Traditionally, nurses have been better at recognising psychological distress in emergency situations, and have been able to compensate for doctors’ tunnelled medical vision. However, as doctors, the ability to retain an awareness of the whole patient rather than the just the relevant physical features can soften a potentially petrifying experience. Away from severe emergencies, the ability to keep an eye on the Thou without letting the clues in the It slip through unnoticed remains an important medical skill. Melding the two – forensic analysis and human warmth, always was a tall order.

The essence of satisfaction

Most conditions and presentations are easily recognisable and do not excite a fascinated reaction or the doctor to go to the textbooks. It is not acceptable for this majority to perceive themselves as boring in the eyes of their doctors. To each patient their own ailment is of paramount interest, and the doctor who fails to reflect a sense of uniqueness will come across badly. But for those doctors who derive genuine professional pleasure only from the interesting patients, a career in which the majority are not interesting may prove challenging. How to resolve this?

My advice would be – do your best to work in a field that you find interesting and enjoy the ‘game’ when you are required to play it. However, no specialty or department that I know of is exclusively populated by patients who succeed in creating those intellectual sparks. If it doesn’t come naturally, it behoves doctors to develop ways of deriving interest from patients in a way that does not rely solely on their medical condition. The rewards of making the right diagnosis are fleeting, because once made the process of arriving at it becomes irrelevant. It is treatment and management, which may be long term for chronic conditions (such as lupus, for example!), or barely effective in others, that really matters. Moreover, it is the patient’s wellbeing as a whole person, not a collection of affected organs, that is the true measure success. If we as doctors are not ‘interested’ in that, ultimate satisfaction will be denied.

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Signs

Another brief exercise in wondering what it’s like for patients who meet our kind in certain situations.

The other day a junior colleague described to me, over lunch, a patient who had been admitted with unusual and florid signs, due to a disease that is not commonly seen. I clapped my hands and said, ‘Excellent!’ And then I heard myself, and was embarrassed. The signs indicated advanced disease, but the prospect of seeing them excited me as a clinician. In that staff canteen, far away from the patient, I could show my appreciation for signs that made the patient a sure source of learning for our trainees, and a jolt to the enthusiasm that once motivated my own nervous forays onto the wards as a third year student.

oOo

(From a hospital diary)

I had an inkling, but when I saw him coming I smiled, as I do to any who approach my bed. His eyes darted from my face to my hands (where the rash is) to my abdomen, which was completely hidden beneath the sheet anyway. He must have been told about me. I had overheard a small gaggle of students discussing an imminent teaching session which was due to begin at 11. And time was now pressing, for it was ten to 11. He introduced himself, asked me how I was, and came straight out with it –
“I wondered if you’d mind if I bought a few students along to ask you some questions and…examine you.” I said nothing. It’s happened before. But he was determined. “Just a handful. Is that OK?” It was clearly important to him.

I would rather not have. I mean, what was in it for me? It wasn’t the fear of being made uncomfortable, but I was quite happy reading my book, temporarily escaping my dismal fate. The pleasure of ‘being taught on’, if there was one, would be in observing the revelatory expressions on the students’ faces as they felt organs they had not felt before, or as they recognised lesions that they had only read about in books. But really, I have my own worries, and the education of our future doctors is not one of them.

“It’s alright.” I said, though it wasn’t. I had a duty to be helpful, and he had a duty to press me, for the sake of his students. I suppose.

 

30 minutes later.

They were very nice, each one of them. And the consultant tried to make sure they didn’t hurt me, though one of them did by pressing on my liver like a novice baker kneading dough. Just one thing though: one of the young woman stood up from bending over to get a close look at the rash, and said,

“It’s not classic.”

Well, sorry! I’ll try to develop it, rub it up into a proper horror! My feedback to you – never, say anything negative about another person’s body, even if it is diseased. Isn’t that a basic social skill? But otherwise, no complaints, except for the fact that for all the sense of reward and betterment in the young faces, the fact remains that the ‘learning points’ would not be there unless I was ill. And I am very ill.

 

A day later.

A new admission, into the bed next door. She looks interesting, but sick – bright yellow all over. The teaching doctor came along a couple of hours ago. He glanced at me as he passed, nodded and smiled. No words. He doesn’t need me now. And he approached my new neighbour, and said, after the pleasantries,

“I wondered if you’d mind if I bought a few students along to ask you some questions and…examine you. Just a handful. Is that OK?”

The cheek.

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Hitch’s Gift

Christopher Hitchens, the writer, journalist and polemicist, died in December 2011. He was taken ill on the morning of the day on which he was due to appear on The Daily Show with Jon Stewart, to promote a new book. The severe chest pain that he thought was due to a heart attack was in fact a manifestation of oesophageal cancer. He was soon told that the disease was metastatic, and he began to write about his thoughts and experiences. These writings were collected into a book called Mortality. I picked it up the other day and read it in an hour – it is highly recommend. He describes what happens when you are taken ‘from the country of the well across the stark frontier that marks off the land of malady.’ As an ardent and argumentative atheist he takes a good pop at religion, but in this article I would like to highlight the paragraphs that made me think twice as a clinician. There are numerous observations that will stick with me as I meet other terminally ill patients, and I think all healthcare providers would benefit from reading them – from phlebotomists to ‘proton doctors’. I have organised some of them into categories of my own making.

On arriving in the land of malady, or ‘Tumorville’

The new land is quite welcoming in its way. Everybody smiles encouraging and there appears to be absolutely no racism

The country has a language – a lingua franca that manages to be both dull and difficult and that contains names like Ondansetron for anti-nausea medication.

In her famous essay on Hollywood, Pauline Kael described it as a place where you could die of encouragement. That may still be true of Tinseltown; in Tumortown you sometimes feel that you may expire from sheer advice.

Like so many of life’s varieties of experience, the novelty of a diagnosis of malignant cancer has a tendency to wear off.

 

On being terminally ill

…I am badly oppressed by the gnawing sense of waste.

To the dumb question “why me?” the cosmos barely bothers to return the reply “why not?”

The absorbing fact about being mortally sick is that you spend a good deal of time preparing yourself to die with some modicum of stoicism (and provision for loved ones), while being simultaneously and highly interested in the business of survival.

 

On cancer treatment and ‘the battle’

It also involves confronting one of the most appealing clichés in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer.

The oncology bargain is that in return for at least the chance of a few more useful years you agree to submit to chemotherapy and then, if you’re lucky with that, to radiation or even surgery. So here’s the wager: You stick around for a bit, but in return we are going to do going to need some things from you. These may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head.

Brave? Hah! Save it for a fight you can run away from.

Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a large transparent bag of poison and plug it in your arm, and you either read or you don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.

 

On the etiquette of illness

In truth, if you can’t bring me news about that [his particular tumour] and that alone, and about what happens when lymph nodes and lung may be involved, I’m not all that interested or all that knowledgeable. One develops a kind of elitism about the uniqueness of one’s own personal disorder.

As it happened he was exactly right to ask, but it had been precisely that which had been bothering me, and I was unreasonably shocked by his bluntness. I’ll do the facing of hard facts, thanks. Don’t you be doing it too.

But again there was the unreasonable urge to have a kind of monopoly on, or sort of veto over, what was actually sayable. Cancer victimhood contains a permanent temptation to be self-centred and even solipsistic.

 

On carrying on

And timing is everything: the exquisite moment when one can break in and cap a story, or turn a line for a laugh, or ridicule an opponent. I lived for moments like that. Now if I want to enter a conversation, I have to attract attention in some other way, and live with the awful fact that people are then listening “sympathetically.”

My chief consolation in this year of living dyingly has been the presence of friends.

I can’t eat or drink for pleasure anymore…

Before I was diagnosed with oesophageal cancer a year and a half ago, I rather jauntily told the readers of my memoirs that when faced with extinction I wanted to be fully conscious and awake, in order to “do” death in the active and not the passive sense. And I do, still, try to nurture that little flame of curiosity and defiance…

 

On the burden of treatment

Towards the end of his long life [the late Professor Sidney Hook] became seriously ill and began to reflect on the paradox that [ ] he was able to avail himself of a historically unprecedented level of care, while at the same time being exposed to a degree of suffering previous generations might not have been able to afford.

…he used a potent phrase to describe the position of others who suffer like this, referring to them as lying on “mattress graves”…

So we are left with something quite unusual in the annals of unsentimental approaches to extinction: not the wish to die with dignity by the desire to have died.

I wondered if things looked as red and inflamed within as they did without. And then I had an unprompted rogue thought: If I have been told about all this in advance, would I have opted for the treatment? There were several moment as I bucked and writhed and gasped and cursed when I seriously doubt it stop

 

On Pain

It’s probably a merciful thing the pain is impossible to describe from memory. It’s also impossible to warn against.

But mercifully, too, I can’t summon the memory of how I felt during those lacerating days and nights.

To shrink at the thought that I am only a wrinkle or twist away from severe fear or “distress” (a word quite high on the euphemism scale.)

 

On blood tests

For years I found it absurdly easy to undergo routine blood tests. I would walk in, sit down, endure a brief squeeze from a tourniquet…

…one had to stop pretending that the business was effectively painless. It doesn’t hurt that much having the needle inserted for a second time. No, what hurts is having it moved to and fro, in the hope that it can properly penetrate the vein and release the needful fluid.

Please believe me when I say that one quickly comes to sympathise with the technicians. They are proud of their work, and do not enjoy imposing “discomfort”. Indeed, they were regularly and with relief give place to another volunteer or submit to another’s expertise.

It can’t have been much less than two hours until, having tried and failed with both arms, I was lying between two bed pads that were liberally laced with dried or clotting blood. The upset of the nurse was palpable…when the technician would offer to stop, I would urge her to go on and assure her that I sympathised.

christopher_hitchens_painting

Painting from the website Paintings on the Side by Cara & Louie

oOo

 

Autonomy and necessity: 10 scenes

autonomynecessity

Scene 1 – Café

Am I happy with the care I received? Nothing turned out as I had foreseen, little was done to me that I actually wanted. Choices…don’t make me laugh. The only choice that would have made any difference would have been the choice not to have this illness. And who has that choice?

Scene 2 – Clinic (a year earlier)

Will it go away?

It’s a chronic condition…long term. It can get better, or go into remission, sometimes for a very long time, but there will always be the risk that it will come back. And sometimes it can get a lot worse…

In what way?

If the bowel becomes dangerously inflamed it can make you very ill, and the types of medication required to calm it down are correspondingly very strong.

But it doesn’t have to be removed?

Sometimes. Sometimes it does.

What?

Colectomy, removal of the bowel, is sometimes needed. But the way you have been up ‘til now, it doesn’t seem likely that you will be one of those patients. I’m confident we can use medication to keep things under control.

You have to. I cannot have a bag. I cannot.

Scene 3 – Emergency Department

How long have you had colitis?

Three months now. It was all going so well.

Who are you under?

Dr Jackson.

And is he thinking about changing your treatment?

He did, three weeks ago. What are you going to recommend now?

You need a few days in hospital, we need to get the inflammation under control again.

Scene 4 – Ward

Well Susan, the injections have worked! It’s time to get home.

It was close, wasn’t it?

Yes. Another two days and we would have had to recommend surgery.

Scene 5 – Clinic

I’m not right Dr Jackson. I’m never normal any more. I’m losing my hair on this drug…

It’s unusual to lose…

Well I am, OK! And I’ve taken weeks and weeks off work this year…

Susan, you know what we need to talk about don’t you. Let me refer to you to one of my surgical colleagues, Miss Baker, she’s very good, very understanding…

No. I don’t want it! Anything but that.

I have to discuss your case in one of our meetings anyway. We all meet up and look at the x-rays, the blood results. I can’t see you going on like this indefinitely. And there are options, believe me.

I don’t want you taking any decisions without me.

Don’t worry, we won’t.

Scene 6 – Meeting

There’s only one outcome here Paul. She needs to accept that she has to lose her bowel. I’ll have a chat with her. It’s not uncommon…I’d try to put it off for as long as possible if it was me too.

OK, I’ll ring her and tell her the offer is there. It’s up to her.

Better to do it now than in an emergency. I could do it in one stage, laparoscopically. No bag.

Scene 7 – Clinic

So you see Susan, that’s my advice. And that’s the advice of the whole team.

I don’t have a choice.

I wouldn’t look at it like that. Your choices have shifted, to a different level. You no longer have the choice not to have surgery, but the type of surgery you have, and when, is still within your power. I know it doesn’t sound like much, but that’s all we can do…guide you through the options and ensure that you are as fully informed as possible. But we can’t take the disease away.

Scene 8 -Ward (two weeks later)

So has it gone?

Has what gone Susan?

The one stage option? Avoiding the bag?

I’m afraid so. The bowel has deteriorated, we can’t make the pouch safely without giving you some time to improve, with a stoma. I’m sorry.

It’s exactly what I wanted to avoid. My husband… (Susan weeps)

This time next year Susan, it will be over. All healed. Not normal, I accept that, but you’ll feel so much better.

But why can’t Miss Baker do it? I know her, I trust her…

We can’t wait for her to come back from holiday. It’s not exactly an emergency now, but it’s getting that way. The operation has to be done before the weekend. You’ve been on these infusions for a week now, they begin to affect the way the body heals. And for the last two days there has been no sign of improvement in the inflammation. It’s time to remove that colon.

I don’t want an operation.

Susan, you have to consent to it. For it to go ahead you must sign the consent form. Is your husband coming in this afternoon?

Yes.

I’ll come back to the ward then.

To gang up on me you mean…

Scene 9 – Ward, next day

So these are the options Susan. I’m sure Miss Baker ran through some of them with you when you spoke to her in the clinic. I can’t predict what I’ll find when I start the operation, but if it’s not too damaged I can either do this (points to one of the pictures he has drawn), or this…

(Susan looks away) I don’t care anymore. Just do what you have to do. I feel so ill, I can’t decide. It’s up to you.

Scene 1o – Café (present day)

And that’s how it was. All those choices, those shared decisions, in the end I just said – get on with it! You know best! My disease didn’t respect choices, it accelerated, deteriorated, pushed me around, took away my autonomy. Me! Someone who had always, always insisted that she was in control! The irony of it.

And you’ve coped, with the stoma bag?

I cope with everything life throws at me. Of course. Next week I go in for the reversal. And in some ways I am less demanding now… I know they’ll look after me, they’ll do what they have to do. I can’t choose how Miss Baker does the operation, how she stitches…I can’t choose what kind of ward I go into, who I am next to, if the nurses and juniors are nice to me. The choices they talk about are, in my experience, not choices at all. They are theoretical. They are forks in the road that look equivalent from a distance, but when you get there, if you are travelling at speed, you have little or no say about which one you go down. To resist the momentum, in whichever direction it seems to be taking you – and by momentum I mean the opinion of your doctor, of the team – is foolish. It’s unsafe. Better to give in to it, believe what they say, trust them. But that’s just my experience. Don’t take my word for it.

(the case is fictional, the patient’s thoughts are imagined by the author)

Signals: the language of uncertainty

signals
Seeing patients in the emergency department the other day, it struck me that for all my attempts to explain to patients and relatives in clear terms and recognisable words what was going on, there was one area in which communication remained unsatisfactory – prognostic uncertainty. That is, in those situations where I feel that there is a significant risk of further deterioration, and possibly death, but where it is too early to justify a full and frank discussion about ceilings of care or end of life management. After all, we typically review patients just a few hours after they have been admitted to hospital. At this stage the patient has barely had a chance to respond to the treatments that have been instituted. We have no idea what direction things are going to take.

So I ask myself – should I let the family know that their loved one could deteriorate? Of course..that’s pretty obvious. But if I do that I must also broach the subject of escalation to ICU, or, if that is not to be considered appropriate, end of life care. Do I know enough about them yet to have that discussion? Perhaps I should keep my concerns to myself and wait for the patient to be reviewed again in 24 hours, by which time the trajectory of their illness, whether improving or deteriorating, will be clearer.

Personally, I believe it is more honest to explore uncertainty early on, otherwise the family may go home confident that their relative will improve, and unaware of what may happen should there be a sudden worsening in their condition. But… to introduce the concept of uncertainty and possible deterioration requires great care. Perhaps too much care, for if the language one uses is too subtle and oblique, the message can go astray.

The average ward round in an ED or acute medical unit will require one or several ‘proper’ sit down conversations, ideally in a room or private space, so that the doctor can discuss all eventualities. Such discussions, in my experience, are reserved for situations in which the patient appears to be dying, clearly pre-terminal, or at significant risk of suffering a cardiac arrest from which he or she will not be successfully resuscitated by CPR. The conversation with relatives will serve to explain that the short term prognosis is poor, and that CPR may not be inappropriate. But uncertainty requires a different kind of conversation, one that takes place at a less profound emotional level and does not usually cause the clinician to invoke the full panoply of communication skills. Uncertainty leads to a ‘preparatory’ conversation, and usually takes place at the bedside. The challenge is to balance clarity with mere suggestion, frankness with compassion and the risk of information overload with a comprehensive exploration of possible eventualities. Not only this, the messages conveyed must be understood by all of those present – the patient (often elderly), a spouse and sometimes younger members of the family. They may interpret words and signals very differently.

For example, imagine a man of 86 years who has been admitted with pneumonia. His exercise tolerance is quite poor (a hundred yards, slowly), perhaps due to chronically diseased lungs. He had a major heart attack ten years ago but got over it. The chest x-ray shows a large area of infection, but he is talking and jovial. He has received antibiotics, and requires a modest amount of oxygen.

The conversation, with the patient, his wife and a daughter, may go like this:

Doctor: It looks like a chest infection.
Patient: OK doctor. Is that all?
Doctor: Pneumonia…
Patient (recognising this word as a more grave condition): Oh!
Doctor: That’s we call chest infections. It’s a serious illness. Because your lungs are already a bit scarred it could go on to make you quite ill.
Wife: So it’s serious then?
Doctor: It is, pneumonia is always serious. But it should respond to the antibiotics.
Patient: That’s alright then…
Daughter: What do you mean by ‘serious’ doctor?
Doctor: It could get worse, if the infection spreads.
Daughter: And then what will you do?
Doctor: If his breathing deteriorates, and his oxygen levels fall…that would be a very worrying development.
Daughter: What would happen?
Doctor: Well…sometimes patients need more help with their breathing…
Daughter: A ventilator you mean?
Doctor: Perhaps, but we would need to ask the intensive care doctors to come and see your Dad and tell us what sort of treatments would help…
Wife: He doesn’t seem that unwell at the moment doctor.
Doctor: No, he’s tolerating the infection very well. It’s just I think it’s important that you know that pneumonia is a potentially serious illness, and patients can get worse before they get better…
Daughter: He barely sees his doctor you know. There’s nothing really wrong with him.
Doctor: That is very encouraging, but the x-ray does show some signs of damage from before the infection, and that’s why I’m being a bit cautious…

There are oblique phrases in here, some of which are not entirely honest of we examine the thoughts behind them:
‘quite ill’ – the doctor means ‘critically ill’

‘worrying development’ meaning ‘life threatening deterioration’

‘patients can get worse before they get better…’ meaning, in fact, ‘not all who get worse will get better’

‘It’s just I think it’s important that you know’ meaning ‘I really want you to take this in, I’m really worried’

‘tell us what sort of treatments would help’, meaning ‘I can’t commit to escalation to intensive care and mechanical ventilation, it’s not entirely my decision…but nor do I want to engage on an escalation of care discussion at this moment…’

‘cautious’ meaning ‘I’m very worried about your father, there’s a real possibility that this infection will prove fatal’

So why use these oblique terms? Why not be clear, and say what he is actually thinking? Because the doctor has to be cautious in both directions – not too encouraging or unrealistically positive, but not too gloomy or doom-laden either. For after all, the doctor has only just met the patient and the family, and as I explained above, there is not yet enough evidence to justify an end of life type discussion.

Should the doctor discuss resuscitation? Yes, probably, but his reticence on this issue will be equally understandable. The patient is independent usually, limited yes, but with a good quality of life. And as his daughter says, there is little in the way of formally established or active co-morbidities. He may have well have chronic airways disease, but no one has told him so. There is not enough in the history to convince the consultant that he should be ‘Not For Resuscitation’.

The result of all these deliberations? – neither one thing nor the other. Subtle hints, tangential phrases that may be interpreted by the daughter in one way and the patient or his wife in another. The patient may be transferred to the medical ward reassured that the antibiotics will make him better, the daughter may go home worrying about the consultant’s thinly veiled pessimism, or ‘caution’. And the doctor walks on to the next patient thinking he has sent out enough cautionary signals to cover all the bases. How wrong he might be.

In this article I have tried to show how challenging it is for doctors to adequately explore and communicate uncertainty in acute situations. There is little time, scarce fore-knowledge of the patient or the family, and a degree of defensiveness. The quest for improved communication continues, but here we have an example of how challenging the job can be!