Month: November 2013

The moment: a tale of three doctors

threedoctors‘…in the raw cold of that leaden crisis in the four-and-twenty hours when the vital force of all the noblest and prettiest things that live is at its lowest…’

Charles Dickens, Our Mutual Friend

_____

‘This seraph-band, each waved his hand:

It was a heavenly, sight!

They stood as signals to the land,

Each one a lovely light’

Samuel Taylor Coleridge, The Rime of the Ancient Mariner

oOo

3.45AM A medical ward

Mark Smithson, two years qualified, held the telephone to his ear and spoke urgently, trying hard not to impart his sense of desperation.

“I am really worried about him. His blood pressure is much lower than earlier, I can’t give him more diuretic, but his breathing needs it.”

“From what you’ve told me there’s nothing more to be done at the moment. Isn’t he end stage?”

“I don’t think so, he only had his heart attack four months ago. There’s something about him I don’t understand. Can you come and see him?”

“Look, it’s pretty clear what the problem is. His heart failure is getting worse, perhaps he’s been run a bit dry as well. Give a few boluses of fluid, see how he responds.”

“When will you be free? There’s something about him…”

“Why don’t you let me know how it looks in a couple of hours, and if he is no better I’ll come and see him. It’s a really busy down here. I think you can manage the situation. Are you okay with that?”

“Yes.” But Mark meant No.

He began to put the phone down. He was deeply tired, working the third of five night shifts and not yet adjusted to the nocturnal rhythm. His tongue was thick with cheap, over-concentrated coffee. The battle, one of many, could not be won right now.

He heard a rasping breath by his ear, and looked up. An old man in a hospital gown, a patient whom Mark did not recognize, stood by his side. He placed a cold grey-veined hand on Mark’s wrist and held it.

“Excuse me! Err…sir, do you want go back to your bed?”

“Shhh! They’re sleeping.”

“What are you doing?”

“You can ask me later. This is your moment. I am your moment. I’m here to show you what happens.”

“What happens to what?”

“What happens to you if you put that phone down. Come with me.”

The old man took away his hand and beckoned. Mark stood and followed, completely in his power. Looking back he saw that the phone’s beige handset hovered in the air above the nurses’ station; he had forgotten to replace it. The two of them, one short and bowed, the other tall and young, left the ward (there were no nurses to observe them – where had they gone?) and entered a corridor. A blue light bathed the floor, and Mark looked up to see what had happened to the lighting.

“Look through this door Mark.” A door had appeared in what had previously been an exterior wall.

He peered through a small rectangular aperture, into what should have been the night air; instead he saw a gleaming new department. A patient was being wheeled through an ante room toward what looked like the doors of an operating theatre.

“What is this?”

“Look at the anaesthetist Mark. I give you the gift of lip reading for now.”

“What’s that thing moving over the patient?” A large white disc, the size of a dustbin lid, emitting the same blue light that Mark had already noted, hung from a gantry.

“That’s just a gamma bath. Patients are routinely sterilised in 2029, there’s global antibiotic resistance. You can’t do an operation if there are any microbes on the skin. The surgeon is under her own gamma shower, round the back. It doesn’t seem to cause any damage over a career, that’s what they are told. Can you hear what he’s saying, the anaesthetist?”

Mark focused on the man’s lips and found that he could understand everything. The anaesthetist was chatting to a younger colleague.

“Sounds complicated.”

“Who should I refer her to?”

“I’d suggest Dr Smithson.”

“I’ve heard he’s…”

“He can be a bit difficult sometimes. Once he get’s a bee in his bonnet he jumps up and down if he doesn’t get his own way. It doesn’t make him a lot of friends, but for someone in your patient’s situation I think he’s the one I’d choose. He doesn’t give up, he doesn’t mind causing a few ripples.”

“I heard he was a bit of a nightmare. You can’t run around demanding the whole hospital does what you want. There are other patients, other consultants. I heard he refuses to give up on anybody, even when the writing is on the wall.”

“Perhaps he over-treats sometimes, but the fact is he’s probably the one you’d want looking after your mother, father, whoever…”

Mark felt the cold hand on his shoulder, a finger brushing his neck.

“That’s enough.”

“They were talking about me. They used my surname.”

“So they were. Now come with me, I’ve got something else to show you.”

They walked to the end of the corridor until they came to another door. Mark looked through another small window, and saw that the door was connected to the back of an outpatient clinic room. He saw the back of his own, more aged head. A patient faced his older self, seemingly unaware of the younger doctor observing the consultation.

“So there’s nothing more you can do doctor?”

“I can’t see any other options. I’m sorry.”

“So that’s it. I’ve got to live with this. Or not live, if it gets worse.”

“I’ll write to your GP, explain it all.”

“But she can’t help me. I need you to write to them, get them to agree to fund the nano-stems.”

“It’s not my decision, it’s been agreed that patients with renal failure don’t qualify…heart, brain, liver failure yes, but not kidney, not yet.”

“But since the ban on anti-rejection drugs there’s no hope of a transplant, stems are my only option now. You’re sentencing me to death!”

“Not me. We don’t agree with it, but we can’t overturn that decision. I’m sorry. Things might change, I’ll keep an open appointment on the system…”

“Right. Right. I get it.” The patient left. And now Mark’s point of view followed the patient, he flew through the room and into the waiting area, leaving his older self behind. He saw the patient sit down heavily, heard him sigh sadly. Mark watched him as he typed a message to his partner – ‘No luck.’ A nurse came to ask the patient if he was alright, she seemed to know him.

“Final decision?” she asked.

“Seems like it.”

“I shouldn’t say this…but have you thought going to see someone else. There’s a consultant at St. Jude’s, he’s managed to get stems for a few patients off protocol. He just keeps writing letters until they agree…”

The patient left, thanking her politely, not really taking in the advice. Then the nurse walked up to a colleague, and whispered,

“It’s a shame. They can get them, if they fight for it. He doesn’t care, or can’t be bothered, if you ask me…he doesn’t exactly put himself out does he…”

The scene shrank away as Mark felt himself fly back through the small window into the corridor. His scrawny guide was already walking back to the ward, and Mark hurried to catch up with him. They re-entered the ward. The old man walked resolutely to his bed, leant over stiffly to reach the edge of a sheet, drew the linen back and folded his wasted legs into the uninviting space beneath. He lay back, his eyes closed, but spoke again,

“Those are your futures. Now go back to the phone, but before you hang up think hard. Your registrar is still listening.”

“I don’t understand.”

“You have a choice. What does your patient need, right now?”

“Someone who knows more medicine than me to work out what’s going on.”

“And what’s stopping you insisting on that senior review?”

“I asked didn’t I? And I got some advice. What more can I do?”

“What would you do if it was your father?”

“I’d insist.”

“But not for this patient? Why?”

“I…I don’t want to annoy my registrar, he’s busy.”

“So it’s you you’re worried about. Reputation. Ripples. Goodnight.” He rolled onto his side.

Mark’s hand encircled the static, hovering handset. Time restarted. A nurse walked past briskly, a buzzer sounded, a patient groaned in her sleep and asked for her long dead husband.

“No…wait!” Mark’s voice, stern, assertive.

“What?”

“I need you to come to see him. He is deteriorating quickly, I don’t know what’s wrong with him. Sorry, I’ve tried, but I need to you to see him now. It can’t wait.”

“I…I…told you, I’m stuck here…”

“Shall I call the consultant at home?”

“What?! Christ, you mean it don’t you. OK, OK, I’m coming.”

Mark could only imagine what he was saying under his breath.

When the registrar arrived Mark nodded, embarrassed, and led him straight to the patient. His bed was opposite that of the spectral guide. Mark glanced at it, and saw that it was now empty, in fact it was neatly made in readiness for a new patient. The registrar assessed the cardiac patient, scrutinised the ECG and began to smile.

“Very strange. Normal saturations, but this ECG is different. Right heart strain. He needs a scan urgently, he may have a pulmonary embolism. And if we’re right I’d be tempted to thrombolyse him. Nice one!”

“Well we don’t know yet.”

“It’s likely, he’s been in bed for two weeks with those huge swollen legs.”

“Thank you, for coming.”

“You knew it wasn’t right. That’s the lesson I’d take away from this – believe in your instincts…and persist! But you don’t need to learn that lesson, it seems.”

The registrar left Mark to make the arrangements for the scan. Mark returned to his ailing cardiac patient and looked over once again toward the empty bed. There was somebody in it. A bony hand beckoned him over.

“Good decision Dr Smithson.”

“Thank you.”

“You alright doc?” A nurse looked at him quizzically. “Too many night shifts, talking to yourself?”

“I’m fine. I’m fine.”

Mark thought he could discern a faint blue glow beneath the sheet, but the morning sun soon banished the impression.

oOo

With apologies to Dr Who (The Day of the Doctor) and Dickens’ A Christmas Carol

Click here to see my Amazon author page

Advertisements

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.

+ + +

Click here to see my Amazon author page

Substitutes

You invite the closest relative of a critically ill patient into a private room and discuss what can be done, what can’t be done, what’s realistic, what’s inevitable…and gain a sense of what your patient’s attitude to major medical intervention might have been. You ask a question, ‘What do you think they would want us to do?’ You have entered into the process of eliciting a ‘substituted judgment’ (SJ). What would the patient have wanted if they could speak to you now, right now? If they knew what the pros and the cons were, what the risks and the benefits were, what the burdens and the rewards were, this is what they would ask you to do – Leave well alone, palliate, ‘allow natural death’, or go to the ends of the earth to find a cure, ventilate, dialyse, put tubes in here and tubes in there, do whatever it takes…

SJ seems to make perfect sense. It is the nearest we can get to a conversation with the patient. But what if those who are close to the patient are not, in fact, very close at all? What about patients who have become isolated, or through their lifestyles have spurned or avoided continuing contact? In such situations the opinion of a relative or a friend will be little more than guesswork. How much of their opinion will be based on supposition or reliance on their own values, or on very historical impressions that they may have gained of the patients possible desires? If the validity of that SJ is clearly challengeable, it comes back to the clinicians to start making decisions in their patient’s perceived best interests. Thus the pendulum of power swings back from the patient’s autonomous existence before they entered hospital to a more paternalistic, medical arena. Conscious of this, and in effort to minimise accusations of playing God, doctors are swayed by the slightest clue as revealed by the Next of Kin who attend the hospital when patients are incapacitated by illness. Great weight is placed on their words.

SJ has its critics. Looking back to its legal and philosophical underpinnings in history, it seems to derive from the ‘legal fiction’ created to justify the appropriation of funds from relatives who had been confined to asylums. Louise Harmon of the Touro Law Centre (New York), an evident sceptic, wrote in 1990,

‘substituted judgment…has its origins in the early nineteenth-century law of lunacy. Lord Eldon crafted the legal fiction of “doing that which it is probable the lunatic himself would have done,” permitting equity courts to make gifts of the lunatic’s surplus income to relatives for whom the lunatic owed no duty of support.

About twenty years ago the fiction was borrowed from the law of lunacy into the law of informed consent. There it has been used by courts to remove organs from the body of the incompetent, to sterilize him, to force medication on him, to let him wither and die, and virtually fall off the vine.’

Less trenchant critics have analysed the weaknesses of SJ in great detail, and I will summarise these later in the article. But first I will put words into the mouths of some fictional protagonists to demonstrate its frailties in a recognisable context.

oOo

She loves life you see…
A 78 year old woman, Ella Hughes, is rushed into the Emergency Department. She has suffered a heart attack and is in cardiogenic shock – her blood pressure is critically low, she is confused because her brain is not being perfused properly, and other organs are beginning to fail too. Her kidneys have shut down, her oxygen levels are low. The intensive care team have already been called to review her. It is the registrar who first speaks with her husband. Having examined the patient the registrar goes into the room with an air of pessimism. She has seen – has become persuaded – that the patient is probably dying. She introduces herself.

“Hello, I’m Sarah Jones, one of the intensive care doctors. What’s your relationship to Mrs Hughes?”
“I’m her sister.”
“You came into the hospital with her?”
“I was called my her warden. They’ve got my number.”
“So where does she live?”
“Roedean Court it’s called, they’re warden controlled flats, you know, for…”
“Yes.”
“How is she?”
“Very, very ill. She has suffered a very large heart attack. Her heart is failing as we speak. I’m sorry, but I don’t think she can survive…”
“You mean she’s dying?”
“I…I think so.”
“There is nothing you can do?”
“There are always things that can be done, theoretically. But we have to think…”
“What ‘things’? Please, tell me.”
“Well…” She is disquieted. She did not expect this. She thought the relative would understand and accept that Ella was dying. “Well, there are drugs, to keep the blood pressure up…and devices…to strengthen the heart, temporarily…”
“Good. Good. So can she have those. Perhaps she will get better. The heart can recover, can’t it. I had a heart attack too, five years ago…and I’m fine now.”
“It’s not that simple. To do those things would require taking Ella to intensive care, inserting tubes into her, a ventilator I’m sure… we have to be sure that there is reasonabe chance that these things will work, and that she would want us to do those things to her.”
“Oh I’m sure she would.”
“Has she spoken to you about these sort of things…about what she woud want if she was so ill.”
“She has, in the past. She loves life you see. She’d do anything, go through anything, to prolong it. I know she would.”
“I…I’ll need to…”
“I know it’s not up to me, you’re the doctor, but I don’t want you to give up on her. She’s just come in…”
“Okay, I understand. I’ll just go and talk to my consultant…”
“Good, please do. Can I go and see her?”

We’d better do it.
Dr Jones rings her consultant.

“Her sister wants everything.”
“Has the patient said anything?”
“No, she’s barely conscious now.”
“Is she dying, now, in your opinion?”
“Well yes, but that’s inevitable if we don’t support her. The question is should we support her. When I saw her I assume not, she was so sick, but the ED staff have put her on CPAP, started some Dobutamine, she looks better.”
“So you may have made the wrong call. The ED have done the right thing to keep her going. What about the cardiologists, can they cath her? That’s what she needs isn’t it.?”
“No. Too unstable. They think she needs a balloon pump for 24 hours, then review.”
“We’d better do it.”

She hardly sees her!
Ella is transferred to ICU, sedated, ventilated, central lines inserted, haemofiltration catheter, and a balloon via her femoral artery into the aorta. She remains unstable. She remains silent. Sarah Jones is back on the unit 24 hours later. She sees a man enter the unit to visit Ella.

“Hello. Are you one of Ella’s relatives?”
“I’m her husband. Tony Hughes.”
“Oh…I thought…”
“We were divorced many years ago. But when I heard that she was so ill I decided to come in.”
“Her sister rang you?”
“Her sister. What, Dorothy? No, our daughter called me. Has Dorothy been here then?”
“She was with her when Ella came in. She is down as Ella’s nexy of kin actually, so we have been talking to her quite alot.”
Mr Hughes looks uncomfortable and unhappy.
“What’s the matter.”
“Dorothy doesn’t know her at all! She hardly sees her!”

Don’t let anyone keep me going like that
Sarah speaks with the consultant in charge of the unit – not the one who was on call on the day of her admission.

“I spoke to her for twenty minutes, she convinced me that Mrs Hughes would want aggressive treatment. Now I find out she barely knows her sister. Lives three miles away but sees her once a year or something.”
“But it’s all we’ve got to go on isn’t it? It’s the closest we’ve got.”
“I think the husband knows her better.”
“And what does he say?”
“That she’d hate to be as she is now, connected to machine et cetera. He bases that on the fact that the were married when Ella own father died of cancer and Ella said something along the lines of ‘don’t let anyone keep me going like that.’ But this was over a quarter of a century ago.”
“How did the sister get such a different impression?”
“She bases that on the fact that Ella was always so vivacious, energetic and positive. She lives abroad, that’s where she met her husband, and travelled extensively. She was a prominent feminist, a journalist in the seventies, then developed depression.”
“You know all about her.”
“Her husband was very helpful.”

Another day. There is no improvement. The intensivists and the cardiologists discuss her prospects at the end of the bed.

“The echo shows her aortic valve is tight. The angio we did yesterday wasn’t too bad. What she needs is a new aortic valve, a transcatheter aortic valve implantation, a TAVI. It’s not entirely out of the question, if she remains like this and no worse.”
“She’s on multiple organ support. We were coming to the conclusion that this is an unsurvivable situation.”
“Perhaps it is. Perhaps not. What do the family say?”
“There’s a…difference of opinion.”
“Strong either way?”
“Not unreasonably so. Neither relative can tell us with any confidence how far Mrs Hughes would want to go.”
“Well I can make an estimate, say 30-40%, that she will survive. There are other risks of course, like stroke. We’ll leave to option out there. I’m happy to speak to the family myself, if you think that would help. Who is the next of kin?”
“On paper…her sister.”
“And she’s…”
“Pro everything.”

I felt like I was responsible
Her sister returns home, and phones a close friend.
“It was strange. I felt like I was responsible. They asked me what they should do. Well, they seemed to need my opinion, and what could I say? It sounded liek they were giving up on her already. I couldn’t let them do that without challenging them. We haven’t been close since we were teenagers, it’s probably my fault, I wasn’t there for her when she developed depression, and she didn’t come to me when she was getting divorced. I’ve always felt guilty about that. But now, if there’s sometying I can do for her I’m going to do it, and if that means fighting her corner while the doctors try to turn away I’m going to do it!”

Her ex-husband phones their daughter.
“Hello Mary. She’s bad. They’re doing their best but it’s a terrible sight. Tubes everywhere, totally sedated. They seem to be unsure about what to do next, whether to send her to London for an operation or let nature take its course. Your aunt seemed to think she’d want to go through anything to last a bit longer, but I’m not at all sure.”
“Is it up to us then?”
“I don’t think so. But if it’s a borderline situation, medically, perhaps what we say will make a difference. They asked your aunt about resuscitation I think, and she said they should give her mouth to mouth and all that! I tried to let them know that I thought that was going too far. I mean, I know I haven’t spoken to your mother for a few years now, but would she really want that?”
“We’ve never really talked about these things.”
“Well we did, when her father was dying. She was very forthright.”
“Then you should tell the doctors.”
“But that was years ago, and a completely different situation. They won’t want to hear all about that.”
“I’ll go in and speak to them. Will this operation they’re talking about work?”
“They’re not sure. It’s risky.”

On the ICU
“Day 4. Are we getting anywhere?”
“Not really. Inotropes are down, but she’s still in multiple organ failure.”
“I think we should pull out. She’s not going to survive this.”
“Her sister won’t be happy.”
“None of us are happy. It’s a sad, terribly sad situation. But if we genuinely believe that all this is becoming futile it’s all rather academic. Nothing is going to make a difference. The TAVI is pie in the sky, I’ve been there before, the chance of her getting accepted and transferred is so small.” Turning to the nurse, “Can you ask the next of kin in this afternoon, I’ll speak with them. It’s a sister isn’t it?”

oOo

The case of Karen Quinlan
The relevance of substituted judgment in medical ethics was first explored properly in law during the case of Karen Quinlan, a 21 year old woman from Pennsylvania who sustained severe brain damage a 15-20 minute respiratory arrest attributed to an accidental overdose of diazepam, dextropropoxyphene (an opioid that used to be an ingredient of Coproxamol in the UK) and alcohol. Karen had been dieting to fit into a party dress, had barely eaten for two days, and weighed 52kg. She ended up in a persistent vegetative state. Her father, a Catholic, argued in that she would not want to remain alive in such a state, and the judge allowed her doctors to disconnect the respirator. She survived, breathing unaided, for another 9 years, and eventually succumbed to pneumonia.

KarenAnnQuinlan

Karen Quinlan, image from Wikipedia

After much discourse, which included reviewing ‘…the reasoning expressed by Pope Pius XII in his “allocutio” (address) to anesthesiologists on November 24, 1957’, the judge wrote:

Our affirmation of Karen’s independent right of choice, however, would ordinarily be based upon her competency to assert it. The sad truth, however, is that she is grossly incompetent and we cannot discern her supposed choice based on the testimony of her previous conversations with friends, where such testimony is without sufficient probative weight.

Nevertheless we have concluded that Karen’s right of privacy [which is taken to mean ‘the right to be left alone’, or not to be subjected to ‘extraordinary means’ to preserve life in this context] may be asserted on her behalf by her guardian under the peculiar circumstances here present.

If a putative decision by Karen to permit this non-cognitive, vegetative existence to terminate by natural forces is regarded as a valuable incident of her right of privacy, as we believe it to be, then it should not be discarded solely on the basis that her condition prevents her conscious exercise of the choice.

The only practical way to prevent destruction of the right is to permit the guardian and family of Karen to render their best judgment, subject to the qualifications hereinafter stated, as to whether she would exercise it in these circumstances.

If their conclusion is in the affirmative this decision should be accepted by a society the overwhelming majority of whose members would, we think, in similar circumstances, exercise such a choice in the same way for themselves or for those closest to them.

It is for this reason that we determine that Karen’s right of privacy may be asserted in her behalf, in this respect, by her guardian and family under the particular circumstances.

It is quite affecting to read this in the original judgment (linked above) – the legal underpinning (in the United States at any rate) for an essential part of daily medical practice!

Inconsistencies and ignorance
Criticisms of substituted judgment are articulated very well in a 2008 paper by Alexia Torke, G. Caleb Alexander and John Lantos, ‘Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making.’ They firstly explain how,

‘The philosophical appeal of this standard is that it supports the patient’s autonomy by leading us to the decision that the patient would have wanted.’

But the essential problems are, according the authors, threefold;

  • Inconsistency: studies show that peoples’ opinions about what they would want change over time,

‘In one study over half of patients who initially said yes to a series of medical procedures changed their minds over two years. Furthermore, mind-changing is not random. Individuals who fill out an advanced directive are less likely to change their wishes than those who do not. Thus, the patients who most need substituted judgment, because they lack a living will, are the ones for whom it is least likely to be accurate.’

  • Inaccuracy; relatives are not good at understanding what patients ‘would have wanted’

‘A recent meta-analysis of surrogate predictions found that surrogates are correct about 68% of the time’

  • Patient preference; patients may not actually want their presumed former opinions to be a major factor in decision making at such times

‘…there has been extensive research examining whether patients really want their prior wishes to be the sole basis for decisions made on their behalf. This research reveals that the majority of patients prefer that family members or physicians have input into the decisions. In these studies, as in the ones examining the stability of patients’ preferences, the patients who were most likely to want their wishes to prevail were the ones who more often wrote advanced directives.’

There are other concerns, such as the subconscious tendency of relatives to ‘project’ their own beliefs. And what of the overwhelming nature of the task that is presented to relatives? The rules of this strange, imaginary exercise are unknown. As Linus Brostrom writes about this problem of ‘underdetermination’ (in his thesis ‘The Substituted Judgment standard: studies on the ethics of surrogate decision making’),

All it assumes about it is that the patient is “competent”. But, first, it does not clarify how competent the patient should be imagined to be. And second, neither does it clarify any other aspect of the patient’s hypothesized condition, such as the patient’s (hypothetical) beliefs, values, commitments, emotions, mood, or the external circumstances surrounding the decision. Depending on how the scenario is described in these regards, this could presumably have consequences for what the patient would have decided.

Confused? Imagine being asked to make sense of it in the ED.

The Mental Capacity Act – why worry?
Keen students of the UK’s Mental Capacity Act will know that decisions made by medical staff, or the courts should it come to that, do not depend on SJ. So why the worry? Although a rigorous and subtle approach to determining the patient’s ‘best interests’ is required, I am sure most clinicians will recognise the process of trying to work out what the patient ‘would have wanted’. It comes naturally as part of caring for a patient, as an exercise in re-creating them as whole, competent, communicating persona. What is more, legal authorities do tend to accept that act of exploring what a patient felt about certain circumstances (eg. terminal illness, or resuscitation) overlaps, to some extent, with SJ. For where do we find that evidence of prior thoughts and feelings but in those closest to the patient?

Antal Szerletics writes in a useful review, ‘Best interests decision-making under the Mental Capacity Act’,

‘The Court also makes it clear that the English notion of objective best interests cannot be equated with the substituted judgment approach as adopted in the United States but the views and the personality of P will necessarily form part of the best interests assessment.’

The author then reproduces part of a judgement, concerning a patient, P:

  • P’s wishes and feelings will always be a significant factor to which the court must pay close regard.
  • Secondly, the weight to be attached to P’s wishes and feelings will always be case-specific and fact-specific. In some cases, in some situations, they may carry much, even, on occasions, preponderant, weight. In other cases, in other situations, and even where the circumstances may have some superficial similarity, they may carry very little weight. One cannot, as it were, attribute any particular a priori weight or importance to P’s wishes and feelings; it all depends, it must depend, upon the individual circumstances of the particular case.

It sounds very much like to SJ to me, as a non-lawyer.

Life Story
Alexander Torke and colleagues propose an alternative: referring to and using the patient’s ‘life story’. Thus,

‘Surrogates consider the life story of the patient and make decisions that seem consistent in light of the patient’s previous choices and experiences. A narrative approach acknowledges that when individuals lose decision making capacity, they can no longer control their health care decisions. This loss of control, however, does not mean a loss of individuality or dignity. Such basic aspects of a human being can be carried on by loved ones who make decisions for the individual that are consistent with his or her own life choices. By such an approach, surrogates do not try to predict the actual choices that an incapacitated loved one would have made, as they would under substituted judgment. Instead, they make decisions that consider the individual’s interests and values in the context of their current situation.’

This simple approach is very appealing, and, I would argue, perfectly natural. I would imagine that most relatives, when asked what they think the patient would want, actually go through a similar thought process anyway. To do this requires knowledge and imagination – it is a form of extrapolation, such that the result in based in reality but can stand unsupported without true evidence. Guesswork perhaps, but inspired by proximity and emotional insight, and facilitated by a sensitive health care professional who can supply a medically accurate context.

This approach has been accepted by the American Medical Association, which writes,

‘…much empirical research indicates a low correlation between proxies’ decisions and what patients would have decided in hypothetical situations. Because there is no direct deductive relationship between values and a particular choice, or between previous decisions and current positions, the surrogate is often left to make an approximation of what the patient would have wanted. At best, substitute decision making requires great imaginative effort to process a patient’s web of values, preferences, and medical judgments.

Rather than attempt to predict what the patient would say about treatment preferences, the patient’s life story is considered, and a particular option is evaluated in terms of its “fit” with the elements of the patient’s life story. This narrative model rests on the idea that individuals create an identity for themselves through their life story and it is through this narrative that persons conceptualize themselves. Thus, the physician and the surrogate have a prima facie moral obligation to continue the story in a manner that is meaningful and consistent with the patient’s self-conception. It is possible that more than one choice is compatible with the patient’s self-conception.’

So, it seems the principle of SJ, on which we rely to guide our decisions, is flawed. Should we be worried. I don’t think so. Why? Because I don’t think we do rely on SJ. How many of us have asked a relative or loved one to actually make a decision? Few, I would say. The way we deal with such situations is to talk, to feel our way into the mind of the patient through the Next of Kin, to gain a sense of what they would be happy with and how much suffering, risk or chance they might accept in proportion to the possible gains. I think that most of us talk, converse, share, learn and, finally, approach consensus by tactfully and empathetically filling the gap in the ‘life story’ that is described to us. Having read the research, criticisms, studies and articles, I fail to recognise in my own practice, or that of my past trainers or current colleagues, the exercise of pure SJ. The good doctors begin to write that life story in their head as soon as they meet the relatives. It is an art and a skill that those who meet hundreds of patients per year develop naturally.

oOo

The final thoughts of Ella Hughes
“What did I really want? I can think it, but I can’t tell you, not from where I lie. Suffice to say, it has hurt. I have suffered. For a while I thought it might be worth it. I caught a few words from the heart doctor…he was talking about some operation. I was hopeful. Then it all went silent. No more talk about a new valve. And that was my last chance, I think. Now I am going downhill. I believe they have given up. I don’t mind, because I know I am dying. It was obvious to me from the moment I collapsed. But I wish they could have made up their minds earlier, and not prevaricated. If there was nothing that could be done, fine…don’t do it. But they talked to my sister. My sister! At least Tony knew me for what I am – a pragmatist. He would have told them the truth about me. Do only what is useful, don’t do anything just for the sake of it, for some idealistic ‘life at all costs’ ideology. I don’t suppose they do that anyway nowadays…but he’ll have told them. That’s been the story of my whole life..pragmatic, no frills, no waste, no fuss…’

(I am very grateful to Katherine Sleeman, palliative care registrar and clinical lecturer at Kings College London (Twitter @kesleeman) who made some very helpful comments regarding the difference between US and UK law when this post was first published.)

cover to tweet

Click here to explore e-book

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

 

Blaming patients: a very human temptation

Being human, doctors sometimes blame others when things go wrong. Because they spend most of their time interacting with patients, there is a temptation to blame them. The purist might argue that a patient can never be responsible for suboptimal care, medical error or lifestyle associated disease, but the issue is complicated and deserving of examination. The word blame not only implies fault, indicating that harm is directly related to a person’s actions or omissions, but that they are not deserving of sympathy. If we accept that sympathy is a necessary precursor to empathy, through the stirring of compassion and the will to do the emotional work that is required, its absence could compound a patient’s sense of isolation and vulnerability. Responsibility is a more subtle term, but its effect is the same – the shifting expectation away from the doctor and towards the patient. But patients do have to take some responsibility for their condition and their care. Where does the balance lie?

In this article I will explore various situations in which doctors might find themselves blaming patients. These move from the immediacy of the clinical interface to societal attitudes to lifestyle and ‘deservingness’.

1. Passivity or fear?

Imagine this scenario. A 34 year old man, working, busy, sees a specialist complaining of weight loss and night sweats. A CT scan is organised, and the patient waits for the follow up appointment. It never comes. He waits, and waits… losing weight, feeling ill. Six weeks later he goes back to his GP who makes contact with the specialist, leaving a message with his secretary. Three days later the patient is called at home by the secretary who offers him an appointment next day. The young patient attends, and is informed that the scan shows large volume lymphadenopathy which must represent lymphoma. He needs an urgent excision biopsy and chemotherapy. The tumour is extensive, and six weeks more advanced than it needed to be before commencing treatment. The patient asks what happened. The specialist apologises profusely – the system usually flags up abnormal scans, he can’t explain why this one slipped through. But sitting there, looking at the pale, thin young man, the specialist thinks to himself,

‘But why, for heaven’s sake, didn’t you chase it up?’

Was the patient remiss here? Yes, the system let him down, but would he have left it six weeks before getting back in touch with the manufacturer of a new television after it had been reported as faulty. Why not call the hospital? Why not call the consultant’s office and make a fuss?

Or consider this: a 54 year old female with cirrhosis and ascites (fluid collecting in the abdomen) is prescribed strong diuretics or water tablets. Three weeks after starting the treatment she comes to the clinic for a review and routine blood tests to ensure that her kidneys are not being ‘squeezed’. She looks unwell to the consultant, nauseated, her eye sockets sunken. There is not an ounce of excess fluid on her body. The consultant hands her a request form and emphasises that is vital that she go straight to the phlebotomy room for her blood test, and that he will contact her the next day to advise on the dose of diuretics. He explains that he may even need to stop them if the kidneys are being damaged. She has the blood tests. That night the consultant, who happens to be on call, is called in to an emergency. It takes all night to sort out, and he works through the day until it is time to go home. It is Friday evening. Suddenly, on Sunday morning, he remembers the blood test. He calls the hospital and gets the house office on duty to check the results system.

‘Funny,’ says the junior doctor, ‘It says she’s actually an in-patient.’

‘What ward?’

‘Intensive care…’

The consultant calls ICU. His patient was admitted that morning, in advanced renal failure. She is now on dialysis – hopefully a temporary measure. As he breaks the connection the consultant scrolls through the reminders and alerts on his mobile phone; yes, there it is, reminding him to check those results at midday on the Friday. Why didn’t he hear it? Who knows? His system, his fail-safe…failed. He sits down, at home, curses himself, but reflects – ‘Why the hell didn’t the lab call me on Friday…and why didn’t she call my office…I told her those results were vital, they were needed to change her dose…but she waited, and waited, getting sicker and sicker…’

Was she to blame? Wouldn’t it be reasonable to have expected her to be interested, curious, worried? The consultant said he would get back to her, but he didn’t. Wasn’t that a sign that he had forgotten? And if he had forgotten, wouldn’t it have been prudent to remind him? Why the passivity?

The question of passivity opens up a deep box of psychology and potential explanations – the traditions of paternalism which engender an unquestioning acceptance of how the system reviews and communicates results; fear of the monolith, of how the hospital will react to prods and questions; denial, that anything is wrong; superstition, in that actively asking for results will actually alter one’s chances of receiving bad news. These are aspects of a patient’s psychology, and are responses to illness. It may not be reasonable to expect patients to take as much responsibility for their own bodies than they would for something (such as the new television) that cannot threaten their physical wellbeing. Rational thought, logical responses and proactive behaviour may be blunted by the normal response to illness.

2. Blaming the body if not the person

Writing on the KevinMD website a patient by the name of Warmsocks described how she had been ‘blamed’ for being too sensitive to a painkilling drug, Tramadol. In fact she had not been advised on how to titrate the dose correctly, but this example reminded me of a reaction I have witnessed in other doctors, and have been guilty of myself. That of instantly shifting the blame for an unexpected complication or reaction to an aspect of the patient’s physiology or anatomy. That is not to say the patient is blamed personally. Examples might include ‘anomalous anatomy’, an allergy that had not been previously ‘declared’, or a co-existing condition that had not been revealed during the initial history. The patient is not held responsible, but nor is the doctor. Data was missing, no-one is to blame…not you…and definitely not me!

An example: patients’ responses to intravenous sedation vary widely. If a patient remains inadequately sedated despite receiving the maximum permitted dose, their experience of a procedure may be unpleasant and psychologically harmful. In the field of endoscopy this is a commonly encountered situation. After the procedure an explanation might sound like this –

‘I hope that wasn’t too bad. You didn’t seem very sleepy.’

‘I felt everything. I heard everything.’

‘I’m sorry. But I gave as much as I could.’

‘Why didn’t it work?’

‘Well, people react differently. We don’t know why. Peoples’ metabolism varies, their sensitivity to drugs…’

‘So it was me. A low pain threshold?’

‘No, it was nothing you could influence…’

The doctor’s explanation is partially defensive, for he does not feel entirely culpable for his patient’s poor experience. But in referring to the patient’s metabolism he has handed the ‘blame’ right back into the patient’s lap, to do with it what she will. However impersonal the a word like ‘metabolism’, the patient will go home feeling that the nature of her reaction was down to her. Although the doctor thought that he was being non-pejorative, the take home message may have been entirely personal.

3. Justification after unexpected death

When a patient dies unexpectedly, despite the best efforts of the team, a sense of failure ensues. There is regret, there is sadness, there is self-examination. While reflecting on what went wrong and what might have been done better it is not uncommon for a distancing to occur. This is especially common if members of the team express guilt. A discussion might sound something like this –

‘How are you feeling?’ asks a consultant of her house officer, a day after a middle aged patient dies.

‘I don’t understand why it happened. We diagnosed his infection promptly, gave the right treatment, escalated to intensive care…what did we do wrong?

‘We didn’t do anything wrong. You didn’t do anything wrong. I’d tell you if there was something that could have been done differently.’

‘So why did he die while the patient we had with an identical infection, three weeks ago, survived? And that patient was much older.’

‘There are reasons behind the way patients respond to illness that we don’t fully understand. Some people develop overwhelming sepsis, some just get a mild fever.’

‘So it was something unique to him?’

‘I don’t know. All I know is we gave the same treatment to those two patients and one died and one survived. It wasn’t down to us. So don’t blame yourself…’

So who should she blame? No-one. It’s not a question of fault. But in looking for reasons, for justification, it is natural to seek a focus for the negative reaction that death, failure, causes. This is blame. In the discussion presented here that blame is directed back to the deceased patient, for the idiosyncratic way in which his body responded to the infection. Not a strong form of blame, but a definite transference of responsibility.

4. A step to the right

An internet tour of medical blame will take you down the road of ‘self-inflicted’ disease. That is the group of conditions that can be attributed to lifestyle, choices and an unwillingness to change behaviour.

Dr Peter Attia gave an emotional TED talk on the epiphany that occurred when he developed features of the metabolic syndrome, causing a painful juxtaposition with the lack of empathy, perhaps even a degree of contempt, he had experienced when treating obese patients. He blamed them, and felt less sympathy for them than he did for other apparently more deserving patients. However, not all clinicians will go through such a conversion, and policy makers working at a remove from such patients have begun to build blame into the health care system.

In the US, as described in a blog post by Bob Doherty recently (‘Stop blaming patients for not doing enough to stay healthy’) a philosophy of blame can be manifested by increased health insurance for some groups, or rather sinister sounding ‘health contingent wellness programmes’ which have been objected to by House Democrats. As Bob Doherty says,

‘…many of these things – eating better, exercising more, not smoking, not drinking to excess–may be very difficult or even impossible for some people to achieve because of genetics (family history of alcoholism and other substance abuse), culture and community (the diet your grew up with, the food choices available to you in your community, exposure to crime and violence), stress, literacy, physical and emotional abuse, how you were raised by your parents, the quality of your schools–the list goes on and on.’

In the UK the most vivid example of converting blame to policy comes from Conservative MP and part-time GP Dr Phillip Lee, who in 2012 hit the headlines by suggesting that patients with type 2 diabetes may need to pay for prescriptions – “If you want to have doughnuts for breakfast, fine,’ he said,’ but there is a cost implication down the line,”. The operative word is ‘want’. Do patients want to eat rich food, or smoke, or drink? Yes. Do they want to be obese, get lung cancer or die of cirrhosis? No. There may be a mechanistic line between the lifestyle habit and the disease, but breaking it requires more than admonition or financial penalty. Blame when applied to addiction, be it to food, alcohol or drugs, is a dangerous word.

5. Can blame exist without freedom?

Lifestyles driven by addiction and compulsion take us into the area of ‘moral responsibility’. A paper by Rebecca Brown called ‘Moral responsibility for (un) healthy behaviour’ identifies –

‘…a growing trend for ‘responsibilisation’ (often related to ‘personalised healthcare’) which assumes that agents can (and should) be held morally responsible for their health outcome but then challenges ‘one key assumption…that, in determining their own lifestyles, individuals act freely and are morally responsible for engaging in unhealthy behaviours’ and seeks to ‘question the legitimacy of holding agents morally responsible for their (un)healthy lifestyles.’

She describes an approach in which

credit be awarded according to the extent to which agents ‘conscientiously strive’ to do the right thing.

while acknowledging,

that an agent’s capacity to ‘strive’ may be influenced by her upbringing and social circumstances: factors out of her control and not her responsibility.

This reminds me of my own practise in liver medicine. The clearest instance of blame is seen in the arena of alcohol addiction. It is common for a patient to survive a life threatening episode of alcohol induced liver failure, and on discharge the doctor will say,

‘That was very close. If you drink again, even a glass, you will probably die.’

The patient comes back into hospital 6 weeks later, in liver failure. His partner admits that he has been drinking heavily. How much clearer can it be – the patient is to blame, surely! Then comes the question of whether the patient should be offered the chance of organ support on the intensive care unit. Their ‘deservingness’ may be taken into account. The impression of deservingness might rely on the efforts that they have made to give up alcohol. Are they in a programme? Did they take the seriousness of their last scrape with death to heart and throw away the bottles when they got home. Is this the tenth such admission? In asking ourselves these questions we are therefore tempted into ascribing to ourselves the roles of moral judge and jury. But we must be aware that the General Medical Council, in Good Medical Practice, says,

“The investigations or treatment you provide or arrange must be based on the assessment you and the patient make of their needs and priorities, and on your clinical judgement about the likely effectiveness of the treatment options. You must not refuse or delay treatment because you believe that a patient’s actions have contributed to their condition…”

With this in mind, is it ever defensible to cite a patient’s pattern of behaviour, his intractable addiction or compulsion, in denying a particular form of treatment? No. But if that behaviour is felt to make the chance of a successful outcome less likely, or minimal, then it becomes acceptable to deny treatment. If ongoing alcoholism will inevitably lead to recurrent disease, or continued smoking will fur up the newly fashioned coronary vessels…these may well strong enough reasons to justify that harsh calculation.

Rebecca Brown goes on to explore how much behaviour is ‘habitual’ and unconscious, such that ‘A large and sustained psychological effort is needed to intervene in everyday behaviours and alter habits.’ And the success of such efforts may depend on social factor, there being evidence to show that – ‘smokers from the most deprived socioeconomic groups are as likely to attempt to quit smoking (and to seek help in doing so), but are only half as likely to succeed compared with those in the highest socioeconomic groups’.

Lastly she explores the concept of ‘freedom’ to choose, referring to the philosopher and political theorist Philip Pettit’s work ‘A Theory of Freedom: from psychology to the politics of agency’ he suggests a person is fit to be held responsible for their behaviour if:

  • their actions are genuinely free rather than forced (by compulsion)
  • they can identify with the things that they do (for example, a patient may ‘find themselves’ smoking despite making great efforts to give up, almost as though it is another person doing it) and,
  • their actions are theirs and not an action produced under pressure from others – the availability and the prominence of high calorie fast foods in deprived environments where cravings for such foods might be higher, could be interpreted as an example.

6. I am innocent

A study by Alison Chapple and colleagues, ‘Stigma, shame, and blame experienced by patients with lung cancer: qualitative study’ provides insights into how the perception of blame can affect patients. Sometimes we can get it wrong, and the patient was in fact ‘innocent’, as here –

When I went to see an oncologist for further treatments because I’d had an operation and I’d had half of my left lung removed, I asked them what he thought had caused it and he just laughed and said, “That’s obvious, through smoking.” And my wife who was with me at the time, and we’ve been together since we were 14, she just said, “Well he’s never smoked.” So right away what annoyed me as well as that, on my medical records I’m classed as a smoker and every time I ever went for review after that they would ask me, “Are you still smoking?” because that’s down there. And no matter how I told them, I’d say, “Look I don’t want that on there, I never smoked.”

Casting blame, whether overtly by verbally attributing disease to prior actions, or covertly by just thinking that the patient is at fault, is a dangerous game. You might be completely wrong. What is more, even if you are assured that the patient has contributed to their own illness, you have no idea what lies at the source of their behaviour. The question needs to be asked – would you have successfully avoided addiction to alcohol, nicotine or calories if you had grown up in the same environment, with the same pressures, temptations and opportunities? Would you regard yourself as ‘innocent’?

Conclusion

I have tried to show that it is natural for doctors to apportion blame. Even if we conclude that it is not justified we must accept that it will happen. I write this a doctor who as experienced all of the emotional reactions described above – I am not immune!

The dangers of giving in to the temptation of blame in the clinical setting are those of alienating patients, undermining empathy and disrupting the therapeutic relationship. In the wider social or political context the dangers are stigmatisation and the risk of unjust health policies. It seems that this natural, and therefore inescapable response to illness represents an ever-present threat to optimum medical practice. The solution? This must be down to a combination of professionalism, whereby doctors compartmentalise their emotional reactions and the way they behave, and advocacy. But that is not enough. Being a good doctor requires positive emotional work, understanding, liking, sympathising, commiserating and finding, together with the patient, the best route through a difficult situation. Merely tolerating a patient whom one blames for their predicament is not enough. Any sense of blame needs to be suppressed and dissociated entirely from the doctor’s approach to the relationship. Fate has thrown them in your path, as a professional, and if you will not do your utmost to understand them and help them, who will?

 

cover to tweet

Click to explore e-book