Please ensure you have read the 'ERCP Information' page before continuing, as this will correctly set the context. It is important to note the author, although well researched, is not a doctor. The information will enable you to engage with, and question, those in the medical profession who are involved with ERCP: whether in assessment, referral, vetting, execution, post operative care or clinical audit. Reading and understanding this content (as a medic or a patient) could save lives!
Who is advising you to have ERCP?
When considering ERCP, not all doctors will sit down and carefully review your situation with you: to go over the evidence; explain the pros and cons; assess your attitude to risk. Instead they will have made their mind up beforehand and simply seek to gain your approval for ERCP. Many patients will trust their doctor and take such advice. My partner did just this, but it was a fatally incorrect decision!
When you are referred to a hospital to be investigated for a gastro-intestinal problem you might reasonably assume the consultant you see will be an expert in that field of medicine. DO NOT ASSUME THIS! Some hospitals share out referrals amongst various consultants, some of whom will be specialists in your 'problem area' and some of whom will not be. It will then be just a matter of luck that you get to be seen by someone adequately knowledgeable and experienced with assessments and treatments in that discipline.
Once it becomes clear your ‘problem’ relates to Gastroenterology, I would strongly urge you to ensure that you are seen by a consultant Gastroenterologist BEFORE agreeing to undergo ERCP. ERCP is a risky procedure dependent on a lot of skill (and luck) and you really need the medical necessity for it to be expertly assessed. There will often be reasons for NOT having ERCP as well as for having it. If you feel under pressure to have the procedure, I suggest you step back and get the doctor to also list all the reasons for not having ERCP. I guarantee there will be some such reasons: not least the less than 100% reliability of imaging diagnoses and the risk of life threatening complications. If your consultant tries to avoid providing you with a truly balanced assessment of risks and benefits, and cannot quantify them, he will almost certainly not be following the policy of the Hospital and you will be at risk of making an incorrect assessment of what is best for you.
A good doctor will be genuinely concerned for your welfare (as if you were a member of his family) and speak to you accordingly. If you do not sense this; if there is aloofness; if there is pressure; then I suggest you will be entirely justified in not making an immediate decision; in doing some further research; in seeking a second opinion. I wish we had!!
When wondering how to assess what doctors are telling us (or not telling us!) we need to understand that they are only human and have the same mix of human failings as the rest of us. One also has to understand that doctors are used to the risks; to having patients die. Some will inevitably become hardened and, as a coping strategy, distance themselves from the grief of those affected when things go wrong. Do not seek their advice without realizing that their assessment of risk is unlikely to be the same as your own. Your life, or that of your family, will be affected if things go wrong, his / hers won't. They may not even be aware of your fate: if you become ill after ERCP, you will become the responsibility of a different (surgical) consultant.
Be cautious if your consultant tries to reassure by stating that his / her referral for ERCP will be vetted by the ERCPist before the procedure (Note the ERCPist will often be a Consultant Gastroenterologist). In my view, unless the ERCPist is going to see you in person at least a week before the procedure, his / her review is likely to be only cursory. Only 30% of ERCPists will seek to conduct a proper review with you in person. In my view this should be mandatory! If this is not done the only review one will receive will be on the day of the procedure, when one will already feel committed. Some ERCPists will wait until you are undressed and in your operating gown before seeing you for the first time. You can bet your bottom dollar any 'review' done at this stage will not be designed to filter out patients who might not need ERCP: no surgeon is going to want to account for lots of expensive missed operating slots caused by him having 'put patients off' at the last minute!
Before you have ERCP, consider going to see your GP! Why? To check if the hospital has written to your GP about your treatment, but has not copied you in. This happens a lot! It is another example of doctors feeling only they have responsibility for what happens to you, and that you (the person) can be ignored. I am sorry, but I consider this to be morally wrong! Get your GP to show you all such communications and keep a copy of them. It is possible there is information in such letters that was not told to you in the clinic. Discuss your situation with your GP: but don't be surprised if he/she is cagey: as you will have been referred into another doctor’s care.
Note: Hospitals usually write to your GP (and copy you in ideally) after each outpatient clinic appointment. If you don't receive any such communication, check with your GP practice and / or the medical secretary at the Hospital. I suggest you do need to read all such communications and you SHOULD be concerned if you read anything different to what you were told in clinic. Take this as a warning sign! It could be your commitment to proceed was obtained on the basis of 'dubious' advice that is then 'rephrased' in a way that provides a 'get out of jail free' card in the event of something going wrong down the line. Remember, written evidence like this will always trump anything you later claim was said in the clinic.
Know the risks
I urge patients to realize that ERCP carries risks of serious complications, which are well known and quantifiable. You should only be having ERCP because you have a proven (or as good as) medical condition that is also a serious risk to your health. Hence the decision to proceed with ERCP can be a very difficult one: dependent on the relative risks (and benefits) of proceeding or not proceeding.
The most common reason for ERCP is the presence of one or more common bile duct (CBD) stones. Advice may be given that these should be removed by ERCP: the reason being that, if they remain, they present a potential future risk of pancreatitis and/or ascending cholangitis and/or liver problems, etc. One will probably be told that ERCP is usually a safe procedure but that if any complication arises one may just need to spend a couple of extra days in hospital.
What I now know is that ERCP itself carries a high risk (often about 1 in 20) of causing pancreatitis: which (as above) can be very serious and potentially fatal. This is a well-known complication of ERCP, but not one your referring doctor may wish to dwell one (dare I say because the avoidance of future pancreatitis is one of the main benefits often put forward for having ERCP!). I also now know that in the worst case scenarios, patients who become seriously ill after ERCP can take 3 months to recover, some of which may be spent in an induced coma in ICU. For the unlucky few, like my partner, they will die after the onset of sepsis within a few days of ERCP.
I have read that 64% of ERCP patients will experience some post procedure complication within 30 days of ERCP. Studies have also found long term complication rates of between 5.8% and 24% in 10 year follow-ups. Most will not be serious, but some can have long term potentially life changing consequences. I suggest you read up about sphincterotomies. My assessment is that the sphincter of oddi muscle, controlling bile and pancreatic flow into your duodenum, is unlikely to work again as nature intended afterwards. So whilst the spyhincterotomy hopefully was necessary to restore your immediate health, there could well be long term health implications, potentially requiring further treatments in future. I believe patients often need repeat ERCP procedures.
Might you pass a small stone naturally?
Many experts believe that a significant proportion of the population will at some point in their lives create and pass small gallstones without major symptoms and without always seeking medical help. Some studies estimate that at any one time 15% of Western populations are harboring gallstones, most of whom are unaware of them. With these, there is always a risk of some of them entering the CBD. When they do this may be accompanied with pain and other symptoms; but not necessarily. It is believed most stones will also spontaneously pass through the CBD and out into the duodenum, again potentially (but not necessarily) accompanied by pain and other symptoms. This high incidence of gallstones, relative to the much lower incidence of gallstone treatments, clearly indicates (to me) that the chance of safely passing a small CBD stone may actually be quite high. Hence the idea that most Gastroenterologists appear to have: that all such small stones in the CBD, once identified, should be removed by ERCP, appears open to serious question. I am expertly informed there is no researched clinical evidence to support this practice (if anyone however learns of any, please e-mail me!).
The poor evidence base behind some Doctor's advice
If ERCP itself carries an approximate 1 in 20 chance of causing pancreatitis, and if doctors are routinely advising patients that one of the main benefits of having ERCP is to avoid this very same risk, one would think they would know for certain that the risk of getting pancreatitis from not having ERCP (for suspected CBD stone patients) is greater than 1 in 20. However (as explained above) there is NO such body of evidence! I also have to question whether some doctors referring for ERCP actually know much about any of the ERCP risks: as the audit information that provides this is unlikely to be available outside of the Gastroenterology specialty! The truth is that both options (having ERCP or not) carry a risk of pancreatitis and other complications: but the risks from not having ERCP treatment (for suspected small CBD stones) are unquantified.
Thoughts to have when considering the 'worst case scenarios'
Clearly if patients ignore advice to have ERCP there is a chance they may develop a more serious condition at some future date. They may then require more urgent treatment: which will probably be riskier, with a poorer prognosis, than if they'd had an earlier ERCP. On the other hand, if they elect to have an early ERCP there is a risk it will be unnecessary (or be unsuccessful), but at the same time they will have subjected themselves to some serious known and quantifiable risks. I do not envy anyone faced with this dilemma! There are several considerations I would suggest patients have:
- If you are unlucky and end up dying (or suffering life changing consequences) you will (unless you know you are already seriously ill) almost certainly experience this at an earlier date if you have an elective ERCP. Death will happen (on average) within 9 days of ERCP if the worst happens, and you will probably be in a coma in ICU for most of that time. This will be seen as an unnatural and avoidable death and be very hard to come to terms with for your family.
- If you do not have an elective ERCP when in retrospect that may have been the best option and you later die following an emergency admission, it might be easier for your family to deal with. They will know you were seriously ill and that the treatment was potentially lifesaving. Your death will be seen as a more natural event.
- The best way to resolve the dilemma (to proceed NOW with ERCP or not) is for the patient (and their family) to acquire ALL the evidence (for AND against!); to understand the reliability of that evidence; to seek evidence review / second opinions / further tests if in doubt; to trust their own assessment of how ill they are and what the trend is (getting better / worse).
Use my 'Questions to ask' checklist
In the next section I've done my best to write a comprehensive checklist which potential patients are invited to review before they submit to ERCP. These may give rise to many questions for your doctor! Don't be afraid to ask him / her and challenge any vague responses. It is true many doctors will not like being challenged, but it is more important to protect your life than your doctor's feelings. In addition, the more pressure patients create for safer practices, the more Hospitals will listen!
Ask lots of probing questions!
These days, thanks to the internet, we can all become sufficiently knowledgeable about our medical conditions to be able to discuss them with our doctors on equal terms. If you want, you can take control; ask those difficult questions; obtain and record all the evidence for your proposed procedure (by photographing your test results, imaging reports, etc). Later you can use this data to research your condition; seek second opinions. Not only can you access just about all the medical references your doctor can but you also know your own body, and how you feel, better that anyone else. You also have access to all your medical records if you ask (under the freedom of information act). Crucially you will also be prepared to invest vastly greater time in considering 'your problem' than any Doctor will be able to do. You can even access all your scan images (they are part of your medical records also): they can be supplied on CD for you to view on any Windows computer. There are independent doctors and radiographers you can pay to review your evidence if you are concerned enough to get a truly independent second opinion.
The recognition of futility (when ERCP carries no benefit to the patient)
You may consider that technical skill is the most important skill of the surgeon (ERCPist) operating on you. Actually there is another one, that of recognizing futility. Every surgeon is responsible for not operating on patients unnecessarily (remember the Hippocratic oath?) and so not exposing them to unnecessary risk (do no harm, etc.). It appears some ERCPists will happily operate on virtually anyone who is referred to them for ERCP by any other consultant in the hospital. Further, they will be quite happy to do so without thoroughly assessing the evidence; the patient’s present condition; their attitude to risk. For doctors like this, their main concerns will be to ascertain the patient has read the PIL; has no questions; has signed a consent form. I suggest doctor’s with a greater interest in the technology, rather than in people, are more likely to adopt this approach.
Protect yourself and adhere to the advice above: to see an experienced Gastroenterologist at least a week before your ERCP if you are not an urgent case. In this way, if you decide not to proceed, the Hospital has time to avoid a wasted operating slot.
The pressure to 'Treat'
Doctors are taught to treat; they are paid to treat; Hospitals are funded to treat. They are not so well funded, or meet their contract targets, when they turn 'potentially treatable' patients away. When you are referred to Hospital, you start down a care pathway that will ultimately end in a procedure of some kind, such as ERCP. If you are to avoid unnecessary treatment you will need to jump off that pathway before you get to the end. However, this is not always easy! The problem is that some doctors will not like losing candidates for treatment and there will often be some evidence to justify keeping you on the pathway. If the evidence to treat is not strong enough, the Hospital may always have another investigation it can do to 'be sure'.
The reliability of ultrasound image reporting
You may be told an ultrasound scan has identified a stone, or calculus in your CBD. Studies however show considerable variability in the reliability of such a diagnosis, and even more so in its predictive value for actually finding a CBD stone on any subsequent ERCP. This report:
http://www.bsg.org.uk/attachments/127_cbds_08.pdf
indicates that for patients who have gallstones in their gallbladder, but no CBD dilation or raised LFT results, the chances of a CBD stone being found during ERCP will be between 19% (for those aged under 55 years) and 38% (over 55). For patients who do not show any stones in their gallbladder and who do not have raised LFTs or any CBD dilation, the same report implies a less than 5% chance of CBD stones being found on ERCP. If ERCP is being performed on patients based only on imaging evidence, the implication is many patients could be being operated on unnecessarily.
One would imagine that ERCPists would seek to record, in their audit databases, sufficient information to enable them to later identify all patients who were operated on unnecessarily: e.g. when no CBD stone was found. Every such incident means a patient having subjected themselves to a high level of unnecessary risk. Good doctors would seek to minimize such incidents by doing audit reviews and following up the reasons for the unnecessary ERCP. It could be for example that a certain sonographer / radiographer is routinely misdiagnosing CBD stones. An audit review could identify this and, once the cause is identified, retraining could be done and/or vetting procedures changed. It may surprise you to learn that my research has identified that not all hospitals record such incidents of ‘no stone found’ and so can never learn from an audit review in order to improve their practice!
The reliability of MRCP image reporting
We all know people look different to each other on the outside. The same applies on the inside. Variations in internal geometry, particularly of blood vessels, is quite common. Be aware that blood vessels, or air voids, in cross section can give a similar (black/dark) appearance to CBD stones on an MRCP scan (the definitive diagnostic tool for CBD stones). So, for example, if you happen to have an unusually positioned blood vessel running close to your CBD you could suffer a misdiagnosis.
The radiographer analyzing your MRCP images may only allow 5 to 10 minutes to do a review (and write-up) and will be looking for evidence of a CBD stone across over 100 images. He will (in all probability) be doing so in the knowledge that there was evidence of a CBD stone on an earlier ultrasound scan. The ultrasound scan may not have been done in the same Hospital (as many of these are now done in community health centres) so the images may not be available to cross-check with. Hence, when writing the report, the radiographer will be primed to interpret 'anything unusual' as a CBD stone with no ability to cross-check between imaging modalities.
One should also note that MRCP scans result in a set of 2D image 'slices' through the body taken (commonly) 5mm apart and without any depth to the picture. These are not easy to interpret! A small CBD stone (<= 5 mm) will only appear (if at all) in cross-section on one 'slice' in one plane. These images are not high resolution like one might expect. Those our hospital exported as JPG files for the inquest were only 40KB each in size (think first generation phone camera quality!). If you are a radiographer and you know such images should be of higher quality than this, please e-mail me!
For small (<5 mm) stones therefore, I consider an MRCP diagnosis can never be 100% conclusive and should never be the sole reason for undergoing ERCP. Not all radiologists are likely to interpret in the same way: a diagnosis is really only an opinion, not a certainty.
As regards radiology reporting, there can be some perplexing differences between the narratives and the conclusions. Some conclusions appear to be an expression of clinical judgement: but radiographers / sonographers will not generally have access to the full patient record, so will not know all the symptoms. Report conclusions can appear to be based on a simple assumption: "I've been told to look for a CBD stone, I've seen something, therefore it's likely to be a CBD stone". Even when authors know there could be another explanation to the one they report, they will often not advise of that in their report: on the basis that it is not suspected and / or it is not as likely. I consider this to be extremely dangerous medical practice. If I had my way I would ban radiographers and sonographers from writing any conclusions: they should just write the narrative. I would also insist they write in their narrative, what other possibilities the images might be showing, and which of these they have investigated and ruled out. At least this way the consultant who is responsible for the patient will have to read the report carefully and will understand the alternatives. This in turn will help them avoid jumping to conclusions.
ERCP ostensibly carries a 1 in 250 risk of death in the UK, though I have reason to suspect it might be significantly higher in some hospitals. How much time would you spend reviewing evidence which, if you got it wrong, would expose you to such risk? Probably a lot more than 5 to 10 minutes I wager! In any situation where the only evidence for a CBD stone comes from a radiographer’s report, I would consider it vitally important to get a second opinion. Those extra few minutes from a different pair of eyes can make a life or death difference.
The risks of 'missed diagnosis' and 'over-diagnosis'
Hospitals naturally want to 'exclude' the possibility of a missed diagnosis: as they will be concerned about being sued later if they fail to diagnose a serious condition. Unfortunately, the more tests that are done, the more risk there then is of receiving a 'false positive'. Any two tests indicating the same condition are likely to be taken as reinforcing each other, adding to the pressure to 'treat'.
I can vouch that some doctors, seeing reports of a ‘likely’ CBD stone from both an ultrasound scan and an MRCP scan, would take these as reinforcing each other to create a virtual 100% certainty of a CBD stone diagnosis, even if there were no symptoms. Other doctors faced with the same facts could be more circumspect and for example consider:
The absence of any present symptoms of disease is strongly suggestive of there being no medical problem to treat. An ultrasound done several months earlier is no longer a reliable indicator of the continued presence of a CBD stone, even if there had been one, as the medical signs are that it has passed. Maybe it has a predictive value now of no more than 5%.
The MRCP done more recently, maybe a few weeks ago, is a more reliable indicator of a problem, but with small stones its predictive value (from the literature) is only about 71%. The absence of present symptoms is an indicator that it may have been a false diagnosis or that the stone has passed and that none will be found on ERCP. Hence there are reasons to both proceed and not proceed: and so both options need to be discussed with the patient.
If both pieces of imaging evidence were going to be used to reinforce each other, the two probabilities needed combining in a valid mathematical way (e.g. naïve bayes). If the predictive value of the US was 5% and the MRCP 71%, the combined predictive value is only 11.4%. [The formula is: (0.05x.071) / ((0.05x0.71) + (1.0-0.05)x(1.0-0.71))]. Clearly ignoring the earlier US evidence still leaves the MRCP predictive value at 71% and probably less due to the time delay before ERCP. So either way, it cannot be a 100% certainty!
Beware if you are in the same position: where your evidence for ERCP is limited and only has a certain ‘reliability’. Doctors are not necessarily experts at 'weighing up' evidence and at presenting it to you without bias.
Avoiding unnecessary treatment
If my partner had elected to jump off the care pathway at the point when the MRCP was suggested she would still be alive and well today. She was symptom free at the time of the MRCP referral; the MRCP was only offered as a 'double check'. I suggest patients think carefully at such a decision point! You can always jump back on the care pathway if your symptoms return; but you do need to think about the risk of a possible 'false positive' from any further testing. You should also consider whether the Hospital wants the test in order to ensure it cannot later be held legally liable for a missed diagnosis. Remember: you can always advise: "I appreciate you are offering me this test, but I decline and I accept responsibility for not accepting your advice". If the doctor writes this in your medical notes, then that should cover the Hospital's concerns over liability.
ERCP statistics
My hunch is that the incidence of unnecessary ERCP in the UK is high. As best as I can establish there are over 48,000 ERCP procedures every year in the UK resulting in about 240 deaths. If 15% of procedures are futile (I consider this a conservative guess) this equates to 36 avoidable deaths annually for patients who would not have benefited from ERCP. ERCP futility appears not to be something NHS management nationally seems to think warrants monitoring. I see absolutely no pressure being brought to improve practice.
Assess for yourself your evidence of need and balance of risk
I would suggest patients assess for themselves their evidence of need for ERCP and reach their own conclusions. Do not think that the patient information leaflet (PIL) will inform adequately of the risks, and where these risks arise: I have not yet seen one that does this. My impression is that the authors seek to present risks in such a way that not too many patients will be 'put off'. They do this, quite probably, in the belief that no patient would be being referred for ERCP who didn't really need it! Hence the aim of the PILs appears more to do with providing reassurance. The mentioning of risks is only done in a minimal manner necessary to avoid any legal comeback (from being misinformed). My contention is that if this assumption about need is wrong, the PILs do not provide adequate information to enable a patient to challenge the appropriateness of ERCP.
Be aware of how the Patient Information Leaflet (PIL) can mislead
You may be told on the PIL that the risk of perforation is 1%. So what? what does that mean? It actually means a life threatening injury: which carries a very high risk of causing sepsis and death within days of ERCP. Do you see Sepsis referred to on your PIL as a risk? I doubt it! You will just see Perforation 1%. The excuse will be that the risk of death is mentioned (4 in 1000, or 1 in 250, or 0.4%) so that covers this risk. In the legal sense it may do, but it doesn't help patients with their understanding of risk. Some may think, well I'm quite young and otherwise healthy, I'll be OK, I won't suffer a heart attack on the operating table. NO! You cannot know in advance what problems may arise due to your internal anatomy, so no matter what age or fitness level you have, a perforation of your duodenum is just as possible as for anyone else; has just the same potential to lead to a fatal / life changing outcome.
Your Hospital's actual complication rates may be different to those on the PIL
If the PIL (Patient Information Leaflet) you are given has your Hospital's letterhead printed on it, don't think this means the information on complication rates relates to your Hospital. In most cases it appears hospitals provide PILS produced by other bodies (such as EIDO: look for their logo on the PIL). I don't yet know where the stats come from for such PILS (they don't advise this on the PIL and I have yet to discover this), but they may well be averages compiled from national, even international, sources. Because they are averages, and because hospital standards can vary widely for ERCP, patients will have a 50/50 chance of the stats for their local Hospital being worse than they are led to expect.
When one signs a consent form, probably just before the procedure, one will find (if it's at all intelligible) that the risks may be different (potentially significantly so) than was initially stated on the PIL. You will probably see 'pancreatitis' and 'perforation' risks mentioned, but you may well not see sepsis and death risks. Personally I consider these practices to be morally corrupt and worthy of being classed as a criminal deception. However, doctors know if your signature is on a consent form and the form states the real level of risks (however disguised) then they are legally covered. Later, if anything goes wrong, most experts will also assume that if the risk is written on the consent form, that this confirms the risk was also fully explained to you verbally beforehand. Beware of what you are signing!
Understand where the risks with ERCP lie
You may well have the ERCP procedure explained to you in the following way: that it has 2 stages: the initial diagnostic stage (pushing a small tube up the CBD to inject dye) which is only followed by the second therapeutic (stone retrieval / stent insertion) stage, once the stone is located. You may well not be told where the risks occur; instead your doctor may be happy to let you assume, from the above ‘simple’ explanation, that the first stage is relatively ‘safe’ and that the second stage, which seems ‘riskier’ only happens if a stone is found. You may well think that the higher risks are then probably justified, as you now have a 100% certain diagnosis.
If you believe this however, you would be wrong! The truth is:
- The process of inserting the dye injection tube (which may require many attempts) can push bacteria from the gut into the pancreatic duct. This is what can lead to pancreatitis (which can be very serious: as mentioned above).
- If the tube cannot be inserted into the CBD the ERCPist may elect to use a needle-knife to cut his way through the duodenum to connect with the CBD in order to effect access through a different route. This is called a 'precut': and I've never seen this mentioned on any PIL!
Understand the use of 'precuts'
Precuts require a high degree of skill and any failure can result in a perforation of the duodenum: which is extremely serious and carries a high risk of sepsis and death. Some ERCPists resort to precuts more often than others (as ERCPists have varying success rates for locating the CBD for tube insertion) and some have significantly worse perforation rates than others (as high as 1 in 3 precuts): but you are unlikely to be able to find any information out about your ERCPist before the procedure. In my experience these performance stats are very closely guarded secrets.
Anyone who is told they need ERCP for purely diagnostic purposes, or based only on imaging evidence, really needs to understand the above, question their doctor and get a second opinion. One also has to remember that many of our doctors are trained abroad and /or may be acting in a locum capacity. They may not know what constitutes best UK NHS practice, or best practice in their Hospital.
One final thought: you have the ability to specify on your consent form, and explain to your ERCPist, that you do not want to undergo too many attempts at cannulation of your bile duct and / or to undergo a precut. If you make such an election, this will increase the chances that ERCP will have to be abandoned without any therapeutic result. It will however provide you with control over what happens next. This could involve trying to go to a different hospital and/or requesting a different ERCPist and/or waiting until it is obvious to you (through worsening of your symptoms) that you need a repeat attempt. When you do submit again, it will then be with the expectation you will need these higher risk procedures.
What care has been taken with your assessment of need for ERCP
All prospective ERCP patients need to consider how carefully their doctors have assessed their need for ERCP. Knowing what I know now about the risks with ERCP I am frankly appalled at how casually some patients can be persuaded to agree to have ERCP. I would suggest no-one commit to ERCP just because they feel pressured into making a decision: I can assure you this is one of the most important decisions you will ever make in your life: your life could literally depend on it being the right decision!
Beware of Coercive Tactics
Some doctors may not tell you everything you ought to know when seeking your agreement for ERCP during a consultation. You will later (probably) be sent a more informative PIL shortly before your procedure: for example, with your appointment letter or when you attend for a pre-op assessment. From this you may learn more information.
Receiving the PIL at this later stage however means you will not then have another opportunity, unless you call and insist on this, to discuss with a Gastroenterologist any new concerns you have. As you may already feel committed, you may be unwilling to call the Hospital and take issue. However, I would urge this be done! If you have new concerns, it signifies the explanation given to you before you gave your agreement, was inadequate. This is the Hospital's problem, not yours!
One may also receive, with the appointment letter, a request not to cancel at the last minute as this wastes hospital resources. Hence, should one possibly learn more disquieting facts from the consent form (probably seen only on the day of the procedure) or from the ERCPist (once you’ve been gowned up) you may well feel unable to ‘back out’ at this late stage. However, in this situation I would urge anyone so concerned and who does not consider their ERCP to be urgent, to do just that: ‘back out’. If surgeons have to account for many such cases, one can be certain they will soon up their game and learn to inform adequately beforehand.
If the worst happens
Remember if things go wrong you might regret not asking probing questions along the lines I suggest on the 'checklist' page. Prepare for the worst and (hopefully) sod's law might mean it was unnecessary. However, think about the converse!
If you later need to report what was said during a consultation it will be difficult to recollect accurately and prove any points unless you have evidence. Even more pertinent: it will be impossible if you died! I suggest you ALWAYS take someone with you to your clinic appointments and who can attend with you on the day of your ERCP (to go through the paperwork before you 'gown up'). Later, it may be just your word against a consultant's - and guess whose statement is likely to carry more weight!
I suggest you make your own contemporaneous notes during consultations and even consider recording the session (e.g. with a smartphone): but get agreement first! We all know insurance companies and the like record our telephone calls for monitoring and training purposes. It provides protection to both parties in the event of any dispute over what was said / not said. Nobody intent on an honest interaction should object, so be cautious if it is refused. I wager that no consultant will be tempted to say / not say anything that could potentially be used against him / her in future: so I see this as a valuable enforcer of integrity.
Ideally, anyone undergoing ERCP who has family responsibilities, or a bread-winner role, should have adequate life insurance: which is usually inexpensive. Ideally, they should have income protection insurance also, but this is a lot more expensive. It is a great help also if you have a good level (£100K+) of legal protection cover: usually available with your house insurance for little extra cost.
I intend later to tell the full story of how I uncovered the truth about my partner’s death, as this may help others break through the same wall of silence as I faced.