One of the most difficult things in so-called alternative medicine (SCAM) can be having a productive discussion with patients about the subject, particularly if they are deeply pro-SCAM. The task can get more tricky, if a patient is suffering from a serious, potentially life-threatening condition. Arguably, the discussion would become even more difficult, if the SCAM in question is relatively harmless but supported only by scarce and flimsy evidence.
An example might be the case of a cancer patient who is fond of mindfulness cognitive therapy (MBCT), a class-based program designed to prevent relapse or recurrence of major depression. To contemplate such a situation, let’s consider the following hypothetical exchange between a patient (P) and her oncologist (O).
P: I often feel quite low, do you think I need some treatment for depression?
O: That depends on whether you are truly depressed or just a bit under the weather.
P: No, I am not clinically depressed; it’s just that I am worried and sometimes see everything in black.
O: I understand, that’s not an unusual thing in your situation.
P: Someone told me about MBCT, and I wonder what you think about it.
O: Yes, I happen to know about this approach, but I’m not sure it would help you.
P: Are you sure? A few years ago, I had some MBCT; it seemed to work and, at least, it cannot do any harm.
O: Yes, that’s true; MBCT is quite safe.
P: So, why are you against it?
O: I am not against it; I just doubt that it is the best treatment for you.
P: Why?
O: Because there is little evidence for it and even less for someone like you.
P: But I have seen some studies that seem to show it works.
O: I know, there have been trials but they are not very reliable.
P: But the therapy has not been shown to be ineffective, has it?
O: No, but the treatment is not really for your condition.
P: So, you admit that there is some positive evidence but you are still against it because of some technicalities with the science?
O: No, I am telling you that this treatment is not supported by good evidence.
P: And therefore you want me to continue to suffer from low mood? I don’t call that very compassionate!
O: I fully understand your situation, but we ought to find the best treatment for you, not just one that you happen to be fond of.
P: I don’t understand why you are against giving MBCT a try; it’s safe, as you say, and there is some evidence for it. And I have already had a good experience with it. Is that not enough?
O: My role as your doctor is to provide you with advice about which treatments are best in your particular situation. There are options that are much better than MBCT.
P: But if I want to try it?
O: If you want to try MBCT, I cannot prevent you from doing so. I am only trying to tell you about the evidence.
P: Fine, in this case, I will give it a go.
___________________________________________________
Clearly this discussion did not go all that well. It was meant to highlight the tension between the aspirations of a patient and the hope of a responsible clinician to inform his patient about the best available evidence. Often the evidence is not in favour of SCAM. Thus there is a gap that can be difficult to breach. (Instead of using MBCT, I could, of course, have used dozens of other SCAMs like homeopathy, chiropractic, Reiki, etc.)
The pro-SCAM patient thinks that, as she previously has had a good experience with SCAM, it must be fine; at the very minimum, it should be tried again, and she wants her doctor to agree. The responsible clinician thinks that he ought to recommend a therapy that is evidence-based. The patient feels that scientific evidence tells her nothing about her experience. The clinician insists that evidence matters. The patient finds the clinician lacks compassion. The clinician feels that the most compassionate and ethical strategy is to recommend the most effective therapy.
As the discussion goes on, the gap is not closing but seems to be widening.
What can be done about it?
I wish I knew the answer!
Do you?
49 Responses to Discussing with a patient who is fond of SCAM
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Responsible adults having free and informed choice is one way of looking at it. For example, the government of the United Kingdom gave its citizens the choice of whether to leave or remain in EU, and, it seems for now, that like the patient in your story, the citizens choice went against ‘doctors advice’.
Back to your comment regarding homeopathy in this post.
‘Often the evidence is not in favour of SCAM. Thus there is a gap that can be difficult to breach. (Instead of using MBCT, I could, of course, have used dozens of other SCAMs like homeopathy, chiropractic, Reiki, etc.)’
What you are missing Edzard is that if people choose to misunderstand and misuse homeopathy for quackery purposes that is not the fault of homeopathy.
I may as well be delivering this message to the wall because it is less thick than you in this regard.
I have understood your message loud and clear:
GREG IS THE ONLY PERSON ON THE PLANET WHO DOES HOMEOPATHY CORRECTLY
I UNDERSTAND YOUR MESSAGE LOUD AND CLEAR:
100 MILLION USERS OF HOMEOPATHY IN THE WORLD
THOUSANDS OF PRACTITIONERS.
Still going after 200 years.
But Professor Edzard Ernst says that they are all wrong.
Billions of people on the planet believe in God through some or other belief system (religion) but Professor Frank Odds says that they are all deluded. The Universe came from a big bang and over billions of years, cats, dogs, horses, people, insects, plants etc just sprung up out of the dust.
What will the world do if you and Professor Odds does not save them, what will happen to us?
seems to me you have forgotten to take your homeopathic sulphur again.
Greg, three quick things.
First, people, even in large numbers, can be fooled if they want or need to be. Despite “100 MILLION USERS” and “THOUSANDS OF PRACTITIONERS,” homeopathy is just silliness. And harmful because it keeps people from getting the real medical help they deserve.
Second, the vast numbers of people who believe in God make my point. Despite the lack of a scrap of evidence, for reasons known only to them, people want to believe. It is nonsense. I find it interesting that a person’s “God” (mine’s the best!) depends on, for the most part, where they were born.
Third, please don’t ever stop commenting. You are almost troll-like in your approach and, personally, I find it quite hilarious because I’m sure not even you believe what you are saying.
@Greg: I hope you understand how inspirational your posts are. And it’s also important to point out that improper-reasoning, illogical-thinking and logical fallacy are well over 3000 years old….and thanks to folks like you, still going strong.
Well said Greg. 🙂
Thanks Pam
When dopes like Ron Jette pipe in with dribble falling from their lips, it is good to know that there are some SANE people that visit this site.
when have you last managed to post a comment without an insult?
quite honestly, your posts look more and more like those of someone severely deranged.
Greg uttered: “dopes like Ron Jette”
I understand why you lash out, Greg. You seem to have few friends or supporters here and that can easily make you feel like an outcast. I forgive you. Much like I would forgive a young child for exhibiting a distinct lack of emotional control.
When someone simply calls me a name, I can be sure of two things. One, they are clearly immature. Two, they are in possession of a losing argument.
I certainly hope you don’t think you scored any points with the judges on that exchange, Greg. All you’ve done, once again, is make yourself look small.
Some advice? No, you wouldn’t listen, anyway.
Talk soon!
“… and even less for someone like you” is not specific enough in my opinion.
If I were your patient I would expect you to explain what would make me someone for whom there would be even less evidence than there apparently is for other people.
I take your point but I don’t think this is a very good example. The management (and even diagnosis) of depression isn’t really within the area of expertise of an oncologist, although it is important to be alert to possible signs. The ideal course of action would be to refer to a psychology service; often oncology departments have a fast-track link to services which can be hard to access otherwise. Alternatively they could refer the patient back to their GP (family doctor).
I suspect in practice the oncologist wouldn’t know anything about MBCT (I know I don’t) and would be happy to let the patient see somebody she has already seen before on the grounds that:
1. The oncologist believes that the MBCT practitioner should know more about the problem than they do
2. The patient clearly believes in MBCT so will be helped by the strong placebo effect
3. By passing the problem on to someone else it frees up clinic time that can be used more productively with other patients
In my experience a much more common scenario would be for the patient to suggest something like an anti-cancer diet (I’m thiking Bristol rather than Gerson), mistletoe injections, acupuncture, cannabis oil… ). There then follows a war of attrition until the oncologist, having better things to do, lets the patient get on with it.
you can exchange MBCT with an anti-cancer diet in your mind; I used MBCT because of a recent discussion a had.
Alternatively, a hypothetical exchange between a customer (C) and her quack (Q).
C: I often feel quite low, do you think I need some treatment for depression?
Q: Yes, I can help you there.
C: American Express?
Q: That’ll do nicely.
The problem here is that the practitioner did not offer anything else to the patient. This is the experience of a lot of patients. yes the oncologist can only treat the cancer but the patient needed help with depression and was effectively abandoned. Quackery flourishes out of desperation. In this conversation there should be something along the lines of- ‘what I would like to suggest is’ and the something should be non SCAM
The example here is of a life threatening condition where sadly there may be nothing that could be done for the patient but so often this conversation takes place in a MSK setting. There is so much research saying what doesn’t work
and very little emphasis on what does work. Patients are denied scans because no evidence that they help etc. etc. but nothing is offered in its place. Pain management programs scarcely exists and are uncoordinated . patients leave confused and feeling neglected. I accept that doctors don’t KNOW but until the gap is bridged between what they don’t know and how they can explain why they don’t know then quackery will flourish.
I see nothing wrong with mainstream medicine putting together guideline about SCAM treatments – with example of questions that patients could challenge SCAM with but it seems there is little appetite to do this. A lot of patients can think critically but when they are in pain of distressed they are vulnerable.
what I wanted to convey is that the patient did not want to learn about an evidence-based therapy. the doctor did not have the occasion to mention one.
Yes I know which is why I extended the example. I just wanted to make the point that we are sort of encouraging SCAM by poor communication. The patient might have better responded if something else was mentioned.
As soon as the patient said ” And therefore you want me to continue to suffer from low mood? I don’t call that very compassionate!” the conversation moved from scientific and critical thinking and became an emotional almost personal discourse.
I only make this point because I am in the same ( MSK) position . I am constantly faced with “this won’t help” and “we don’t do that any more” but rarely given anything positive. the critical thinker in me understands but then I go home to friends and family who suggest SCAM and my defences are poor because I have not been offered anything and the pressure to ‘try’ is very great.
Unfortunately friends and family all want to help so they suggest the first thing they can think of. Generally the less people know about something the stronger their views on it, so it is very easy to feel pressured to accept all kinds of things (not just in relation to medical problems). Sometimes the friends / relatives even take offence when their suggestions are turned down. I had the same thing myself when my cancer was first diagnosed, with two offers of cannabis oil and one of details of a specialist offering mistletoe (whom I had come across previously and knew to be a charlatan), as well as various strange diets.
Coming from the other side as an oncologist it is difficult to turn people away when they have a problem you can’t solve and it makes you feel that you have let them down. On the other hand suggesting something when you know there is no reason for it to work is dishonest, although possibly justified as a way of harvesting the placebo effect.
Another commonly-used strategy is to refer to another specialist, and in fact it is surprising how often they will have effective treatment (as an example, for years I had a few patients with intractable bowel problems following pelvic radiotherapy until I found a gastroenterologist who took an interest in this sort of thing and was able to work miracles using a rational, systematic approach based on the kinds of things that most gastroenterologists know and most oncologists don’t).
Finally, I have found that even if you don’t have a solution to a problem, a lot of patients find it helpful at least to be able to understand what is going on, so I used to spend a lot of time in my clinics explaining things.
I was a bit dismayed once to see a sign in the waiting room which had clearly been prepared in advance saying “Dr Money-Kyrle’s clinic is over-running today: Waiting time 2 hours”
Dr Julian ‘unfortunately friends and family want to help so they suggest the first thing they can think of’’
I think that is true, but you are referring to CAM recommendations and we know that this blog is about denigrating it to the point that any CAM supporters’ comments are chased to the hills.
But for the case of clarity, dishonesty is not the remit of all CAM supporters/practitioners: very sadly I have three friends with terminal illnesses. Your assumptions mean that I have discussed with them complementary therapies, and indeed dismissed conventional medicine.
In all these sad cases conventional medicine has nothing further to offer or they are on last chance treatment. I have not suggested anything complementary may help them ( and that may be a failing on my part, I am not sure) because like you they don’t believe in anything but the conventional route. That has to be honoured, I think(still questioning it, being honest with you) .
It would be a different situation if they had asked me: they haven’t, and I respect boundaries.
This blog is full of denigrative accusations towards CAM supporters: the truth is very different. However, one knows the assumptive culture will continue.
“… sad cases conventional medicine has nothing further to offer…”
I hear this often, but it’s a myth.
conventional medicine often cannot offer a cure but it always has something effective to offer in terms of supportive and palliative care (not something one can say about SCAM).
do you know the difference between ‘denigrative accusations’ and criticism?
Keeping in mind patients end up doing exactly what they want regardless of what we say to them I find the less we confront the greater the chances for us to influence.
Dismissing the patient’s wishes because we “know better” is the certain way to push them away.
When I am asked if Reflexology can grow hair, I tell patients I don’t think so and I don’t think I would go for such an option myself. I don’t dismiss Reflexology or quote research to them… if the patient trusts you that should be enough.
in real medicine, we are being told to abandon this type of paternalism
Prof Ernst – ‘sad cases conventional medicine has nothing further to offer….’ yes it is true in these cases, sadly, but that is not to say palliative care/drugs are not in place: they are. I didn’t realise when I commented that I had to qualify this. We were talking about conventional
Medicine and in these cases, unfortunately, there are no cures – fact.
You may be the medical experts but I have supported and been at the bedside of many patients at end of life, in a previous role. I have seen first hand numerous times the wonderful medical teams that work with patients in these sad circumstances.
I have no reason to criticise medical professionals. If you think that was my implication, you are wrong.
just to be clear: palliative/supportive care is conventional healthcare.
Prof Ernst – why do you feel the need to point out the obvious: palliative/supportive care is conventional medicine?
I stated that palliative care/drugs are set in place for my friends who have been told there are no cures, sadly.
Who are you attempting to convince : realistically not me: I had already stated my friends are not interested in CAM. Early nights all round I feel : this blog may make more sense tomorrow.
I stated ‘to be clear’ – is that not clear?
Doctors have to earn trust. patients rarely see the same clinician twice for any treatment so trust is not easy to foster. medics can’t have it both ways. They expect to patient to research and own their own health issues so this has to come with support and good information from the doctors. It is not a question of doing exactly what they want. I would suspect every patient who pays for SCAM treatment wishes that they did not have to!
I hope you are not a real doctor or if so just having a bad day!
no he’s a chiro who has surprised us repeatedly with his views
And if asked: “faux-doctor G, are there any valid-and-reliable tests to determine a vertebral-segment that needs to be manipulated, ‘Activated or dropped-on’?”….are you quick to also point out you have no research to quote, but you’re going to charge them for whatever you do anyway? Knowing the gullible rarely need or rely on “facts” or “research”…very much like a chiroquacker, homeopath or reflexologist.
In real clinical setting with real patients we find that approach very useful and not at all paternalistic
The patient’s due clarification allows him to exercise his autonomy consciously. What it is up to the doctor is to clarify properly and give the patient the condition to decide.
Why is it so hard for a doctor ( a proper doctor) to actually come out and say that the SCAM the patient wants to use is actually RUBBISH- is it a ‘legal’ thing?
I have learnt such a lot in my experience about natural progression, regression to the mean, and placebo- we don’t actually hear this from the doctor? It would be good if we did?
“Why is it so hard for a doctor ( a proper doctor) to actually come out and say that the SCAM the patient wants to use is actually RUBBISH- is it a ‘legal’ thing?”
No, it’s not a legal thing at all.
I can’t really speak for anybody else; doctors are all human and despite mandatory training they still differ markedly in their communication skills. I have a tendency towards Asperger’s syndrome and so I don’t always pick up on the non-verbal cues that other people sense instinctively. Instead I have had to learn to read them in the same way that I can read the signs of liver disease or whatever. Rather than make assumptions I have to ask the patient outright about their hopes and fears and what they understand about their condition. I try to be as straightforward as I can. I have found that a good way of giving bad news is to ask the patient their suspicions and then to confirm them. I have also found that if somebody is not ready to receive bad news they will not hear it even if it is spelled out.
I have occasionally watched my colleagues explaining things to patients. Most enlightening was a three-day advanced communication skills course, involving role-play with professional actors. I was appalled at the approaches most of the other doctors took (some of whom had been consultants for 10 years or more), which included a lot of irrelevant detail, technical jargon that wouldn’t mean anything to a non-medic, failing to establish the patient’s level of understanding or education, failing to stop every now and then to establish how much had been taken in. Actually most of that can be summed up by failure to listen.
When my own patients have suggested seeking alternative routes, my response has generally depended on what the treatment is, and also on the patient. If they were looking at something that I thought was harmful (Gerson diet, other strange diets, clinics abroad offering dendritic cell therapy, blue scorpion venom, laertrile, traditional Chinese medicine, nutritionists (in the UK the proper ones are called dieticians)…) then I will say so. If they were proposing to see a known charlatan I would say so, too (I won’t give any examples here as I no longer have professional indemnity and don’t want to find myself on the wrong end of a lawsuit).
On the other hand, there are other treatments that are mostly harmless (aromatherapy, music therapy, art therapy) which can be relaxing and help the patient feel good about themselves. Let’s face it, most patients undergoing cancer treatment can find it a pretty awful process, not least because your whole life ends up revolving around hospital appointments, and a lot of people appreciate something that distracts from that. Probably the worst thing about a cancer diagnosis is the feeling of loss of control, and anything that gives back some sense of control to the patient has the potential to be helpful.
Then there are things like acupuncture, for which there is no convincing evidence nor any sound theory as to why it should work. However, by its nature it offers a very strong placebo effect, probably stronger than anything I had available to offer.
I would try to guide them away from anybody who might discourage them to continue with conventional treatment, such as homeopaths and chiropractors. Indeed, although chiropractic isn’t as widespread in the UK as elsewhere, I have nevertheless seen too many people who have been treated for back pain for months until something catastrophic happened (such as spinal cord compression) and the tumours in their spine were diagnosed (do chiropractors ever look at the x-rays of which they are so fond?).
We were fortunate enough in my cancer centre to be able to work closely with a cancer help and information centre located in the same hospital but run as an independent charity. Anybody could drop in for a chat, and there was information about all kinds of things such as travel insurance and how to claim benefits. They offered access to social workers, counsellors, music and art therapists, acupuncture etc. One great advantage of working with them was that at least we all knew what was going on. For instance, when one of the counsellors started advising people to stop their chemotherapy we heard about it pretty quickly and were able to do something about it.
Actually I’m not very convinced about the value of most counsellors, but that is a different subject.
I know there are those (such as Edzard) who feel that it is wrong to allow or potentially to encourage people to seek these sorts of treatment, even if you are in a position to supervise what they are doing. However, while the ideal might be to re-educate cancer patients who have never been trained in critical thinking, in practice, with everything else they are going through, in many cases with the end of their life looming, is this really possible? Is it even kind to try?
Over the course of my career as an oncologist I have only had three patients whom I have felt were really able to grasp exactly what was going on with them. One was the England rugby captain, Andy Ripley (he mentions seeing me in his book so I don’t think I am betraying any confidences here – I only saw him after he was first diagnosed and I referred him to another centre which had treatment facilities that we didn’t and which are thought would be appropriate for him). One was a well-known politician. The third was a cleaning lady. It was so refreshing to be able to discuss their cancer with them and to feel that we were talking about the same thing.
“I have learnt such a lot in my experience about natural progression, regression to the mean, and placebo- we don’t actually hear this from the doctor? It would be good if we did?”
I think it is absolutely essential, at least in most cases, to explain what will happen with no treatment, what difference treatment is likely to make, and what it will involve, as well as what the alternatives might be (I am talking about surgery vs. radiotherapy here, for instance, not chemo vs. snake oil).
However, regression to the mean is actually quite a complex concept which requires some training in maths, and the ability to think mathematically, in order to understand it properly. I am willing to be that if I asked a number of doctors to explain it to me, a lot of them wouldn’t be able to. Indeed, I rather fear that many of them wouldn’t be able to tell me the correct meaning of a p<0.05, or how to interpret the results of a test that was 98% reliable.
The concept of a placebo is rather counter-intuitive, and most people don't appreciate how powerful the placebo effect can be, not even all doctors, I think.
For all of these I think you are requiring the doctor to educate his patient, not just explain something to them. Again this requires an assessment of what the patient already knows and of what they are able to understand. It also takes a lot of time, which is usually not available in a busy oncology clinic.
As usual I have strayed a bit off-topic, but I hope my thoughts on the matter go some way towards answering your questions.
Thank you for your thoughtful reply.
Couple of things:
Chirporactic is common in UK Rather worryingly they are now going to be used by NHS as First Contact Practioioners – presumably because the GP practice either has no real idea oh how Chiro does not abide by current clinical pathways or doesn’t care.
Even within a profession clinicians seem reluctant to ‘call out’ a colleague who is using a non-evidence sham treatment. I am thinking here of physios who see their colleagues using cupping and taping but are reluctant to challenge them?
I am sure I don’t need to tell you that a lot of patients are quite bright- and well educated- I was not expecting the doctor to have to fully educate the patient but just introducing the concept and then pointing the way to decent literature and research sites. Most people have no idea that there is no evidence for so much- like me once they get on a roll… feel I have to do my bit as a patient.
burdle said:
That would be very worrying indeed – can you point to any announcement on this?
Alan,
This is a little off-topic, but how do you make your quotes appear in a box?
Julian
@Julian
See this Wikipedia article. You don’t need to bother with the p and /p elements.
(There used to be an instruction on how to do this as part of the ‘Leave a reply’ fields but it’s no longer there.)
Like this?
Spot on! 🙂
Thanks, Frank! You beat me too it.
Alan Henness – my understanding is, having been told this by some friends, it’s physiotherapists GP’s refer to initially before the specialist. Of course that may not be the full story.
It would be bizarre if chiros were considered more specialist than physiotherapists… in their dreams.
Alan H – this is exactly what is happening. tweet sparked a conversation and I was advised to contact my local RCGP – I think something needs to be done to stop this. GP may have his own budget but it is not HIS money.
see my references in previous post. Physios can’t prevent it ,- I contacted them too
Chiros as FCP Iin UK reference
on twitter below :
Just out of a meeting with a GP practice network where it was agreed they would take on a second #chiropractor as a First Contact Practitioner. Changes to GP funding mean these roles are going to be increasingly available in the #NHS. @royalcolchiro @ChiropracticUK @McTimoneyCA
and https://m.facebook.com/story.php?story_fbid=2237340239850298&id=1529976797253316
The patient should expect professional advice. It is fair to tell the patient, that you know the history and principles of [alternative therapy X]. And that you have looked into the research that has been done (if you have done that). And that you don’t think it will be helpful. This is a way to show that you are taking the patient serious. And that you are open to discuss the issue with the patient without condemning him/her.
If the patient still insists on trying non-dangerous [alternative therapy X], I think it is important to keep the door open. For example by suggesting to see the patient in a few months to see how he/she is doing.
In short – I think it is possible and important to support the patient without endorsing the alternative therapy.
Alan Henness
did you get my references for FCP and chiro ?
Yes, I did, burdle. Thanks for that. It’s pure speculation, extrapolation and wishful thinking by the chiros…
Alan , it isnt. The tweet was from @JfieldPbD wbo was at his GP meeting wbere it was agreed to hiring 1 chiro as FCP – they already had 1 working there. When I challenged – loads of physios on Twitter said that this was expected and some said it was a good thing so long as they adopged MSK pathways which clearly isn’t going to happen or they wouldn’t ne chiros in first place. . JFieldPhD was alerting BLUE wode. I dont think he was in favour. The link was to what chiro are saying but the tweet was not from a chiro. I contacted NEIL LANGRIDGE – physio working on the directive and he advised I speak to RGCP and NHS england but I think it needs exposing.