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INSIDE HEALTH 鈥� Zika in UK, Hip arthroscopy, Yellow Card system, Limits of cancer treatment

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Programme 6.

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TX:听 09.08.16听 2100-2130

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PRESENTER:听 MARK PORTER

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PRODUCER:听 FIONA HILL

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Porter

Coming up today:听 Through the keyhole, we visit one of a growing number of centres in the UK pioneering a new approach for a common hip problem.

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If I hadn鈥檛 gone up and moved around for maybe 40 minutes, 45 minutes, as soon as I would go to stand from my chair it would be like slow motion to try and get up, you鈥檇 almost be pushing your hands off the desk to stand up and move away.听 And as you walked away you鈥檇 almost walk away hobbling to get away and to move the legs.

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Porter

And treating cancer - there is an ever growing range of new therapies to choose from, and more people than ever are living with the disease. But just because we can, doesn鈥檛 always means we should.

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The difficulty is that we know for a fact that we鈥檙e all mortal and so how one tempers that therapeutic momentum, for want of a better word, the ability to give more and more, against the fact that all of us most die and therefore the ethics of balancing a good death or a good last six months or year of life I think is really hard.

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Porter

But first the Zika virus, which has had more than its fair share of coverage this year - albeit mostly stemming from cases in countries far from our shores. Not anymore. There have now been over 50 confirmed cases here in the UK, with the latest reported just last week in Scotland. Dr Margaret McCartney is in our Glasgow studio.

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Just to be clear Margaret, these are imported cases where people have picked up the virus abroad, rather than catching it here in the UK?

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McCartney

That鈥檚 completely correct.听 And I think some of the press coverage has been a wee bit misleading in that it鈥檚 kind of saying that there are new Scottish cases of Zika virus.听 These are people who have been to a country which has the infection and have imported it back with them.

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Porter

Has the news in Scotland prompted any concern?

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McCartney

There鈥檚 certainly a lot of chat about it and I think a lot of people are quite concerned, you know, what should I do if and are looking to see which countries are affected.听 But really this is not a virus that鈥檚 indigenous to Europe, this is still a virus that鈥檚 going on in Central and Southern America, in the Caribbean, in Oceania, it鈥檚 not something that鈥檚 indigenous to the UK.听 It can only be spread by human sexual contact, it鈥檚 very, very rare to have human to human transmission otherwise.听 It鈥檚 spread by mosquitoes and those mosquitoes simply cannot survive in the UK.

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Porter

What鈥檚 the situation now globally?

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McCartney

Well I think there鈥檚 still a great deal of concern and there鈥檚 still lots of information available on the websites, the government websites, advising really pregnant women not to make non-essential travel to countries which have the infection ongoing.听 And if women are going to these countries and thinking of becoming pregnant to be very cautious in terms of protecting themselves against mosquito bites and not getting pregnant for at least two months afterwards, six months if they think they may have been infected by the virus at that time.

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Porter

Thank you for now Margaret.听 And there are links to more information on Zika, including travel advice, on the Inside Health page of the Radio 4 website.

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Now I am sure most of you will be familiar with arthritis of the hip, and surgery to replace the joint but I bet you are not so familiar with hip impingement - another common cause of hip pain, and one that is thought to increase the odds of arthritis later in life.

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And what about hip arthroscopy? Keyhole surgery to repair damaged knees has been around for decades, but have you ever heard of anyone having it done on their hips?

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Probably not, but all that could change thanks to a growing awareness of the problems caused by hip impingement and growing evidence that hip arthroscopy is an effective way of treating it.

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NICE endorses this type of surgery on the NHS but advises that it should only be carried out by surgeons with a special interest in hip arthroscopy and they鈥檙e still thin on the ground in the UK. 听Sion Glyn Jones, Professor of Orthopaedic Surgery at the University of Oxford, is one of them. So to learn more about the technique I caught up with him in the Outpatients Department of the Nuffield Orthopaedic Centre.

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Jones

The clinic you鈥檙e in at the moment is the young adult hip clinic and it鈥檚 a slight misnomer in that we cover a broad range of ages but typically people with earlier stage arthritis and hip pain rather than late stage arthritis and hip pain, needing hip replacement.听 And so we typically see patients from both our own region but also commonly from around the country, even from other countries and we have service agreements with Malta and Cyprus and various other parts of the European Union.

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Porter

What sort of procedures are you using it for?

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Jones

The majority of the time we would use it for two main pathologies and they鈥檙e kind of interlinked.听 The first is a condition known as a labral tear, which is a rubbery piece of cartilage that goes round the rim of the socket of the hip and that can sometimes become detached.听 And we can treat that, usually by repairing it or removing it and in some cases people are now reconstructing it.听 The other type of pathology we would be treating in the hip is a condition known as Femoro-Acetabular Impingement, rather long winded name I鈥檓 afraid but it鈥檚 a condition where there is an abnormal bump on the front of the hip joint or a deep socket that causes bits of bone to bang together in different positions, particularly when people are squatting or sitting.听 And in those conditions we can then reshape the hip using keyhole surgery to reduce the chance of those bits of bone hitting together.听 But those two conditions are quite interlinked, so a Femoro-Acetabular Impingement can give you a labral tear and quite often does.听 But in other circumstances labral tears can be due to trauma or even just the body wearing out with age.

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Porter

I don鈥檛 want to date myself but when I was at medical school and working in hospital I never heard those terms and yet I hear them a lot now.听 What鈥檚 changed?

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Jones

Well I suppose it鈥檚 an awareness of the condition and an understanding that the pathology exists.听 And I suppose in the past people would have presented quite often to surgeons and their general practitioners with groin pain and may have been told they had a strain or maybe a small hernia and now we understand that a lot of those patients had problems inside the hip joint that wouldn鈥檛 necessarily have shown up on x-ray.

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Porter

So what鈥檚 the classic story, how are these patients presenting?

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Jones

So the classic story is usually someone in their twenties or thirties that presents with intermittent groin pain, initially the pain is often what we call positional 鈥� that is you put your hip in a certain position, typically bending the hip up or dropping the knee out at the same time, and that will give you reproducible groin pain.听 Over time you can have other sets of muscle dysfunction associated with that, that can lead to more generalised pain.听 But in the early part of the presentation of the condition it鈥檚 often very focused in the groin, sometimes the buttock.

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Porter

Professor Glyn Jones lets me sit in on his next consultation.听 Amanda has already had an arthroscopy on her left hip and has now come back to clinic with problems on the other side.

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Jones

Nice to see you and thanks very much for coming up to see us today.听 Obviously you鈥檝e had the left side done, you had an operation 鈥� a keyhole on that a while back.听 So just quickly remind me how the left one鈥檚 been going and how the right one鈥檚 been doing.

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Amanda

Well the left one you did for me in September and since then has been absolutely perfect and I wished I鈥檇 had it done five years previously when they first decided it.

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Jones

So just remind me how long it was going on in the left side before you ended up with the diagnosis and before you ended up coming to see me.

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Amanda

I suspect I probably suffered for about three years and then I waited five years with no funding to have it done and then I was referred to you.

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Jones

So that鈥檚 about eight years really from when you had the start of the pain.听 So you had quite a bit of pain I seem to recall when you first came to me.听 And in terms of how that compares with the right side now, is the right side at an earlier stage 鈥� a bit less painful than the left side was?

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Amanda

I would say at an earlier stage but I would say I have the pain, I have the limitation in terms of movement.

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Porter

Amanda has been affected by the pain in her left hip for years and it鈥檚 intruded on almost every aspect of her life.

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Amanda

If I was sitting at work and I鈥檇 been working away at my computer at the desk, if I hadn鈥檛 got up and moved around for maybe 40 minutes, 45 minutes, as soon as I would go to stand from my chair it would like slow motion to try and get up, you鈥檇 almost be pushing your hands off the desk to stand up and move away and as you walked away you鈥檇 almost walk away hobbling to get away and to move the legs.

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Porter

And that was because the hip was painful?

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Amanda

Painful and very stiff and very sore, I鈥檇 describe it as a constant soreness.

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Porter

And where were you actually feeling it?

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Amanda

Everywhere from my hip all the way down to I would say my calf, my ankle, it was extremely wearing, it would wear you down.

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Porter

So what treatment were you offered?

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Amanda

None.听 There was no money available, full stop, the only money available was to have a full hip replacement and the surgeon鈥檚 hands were tied.

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Porter

So they were offering you at that stage to do nothing other than physiotherapy or a full hip replacement?

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Amanda

At the time with that surgeon and within that hospital environment and that hospital trust they didn鈥檛 have the money to fund the hip impingement, so you had to wait until you were at the point that you needed the full hip and there was nothing the surgeon could do, his hands were tied.

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Porter

Seems a bit daft that, doesn鈥檛 it鈥�

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Amanda

Totally.

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Porter

鈥� that you have to wait until it鈥檚 bad enough for a full replacement.

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Amanda

I think it鈥檚 crazy, I mean I鈥檓 46 years of age, to think that I would have to wait on my full hip and to have to have that degeneration in my quality of life and everything that I did, it would have limited my job, it would have limited the capacity of what I could do.

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Porter

Who gets these problems?

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Jones

Well it鈥檚 interesting, it鈥檚 quite a broad spectrum of people actually.听 Most of the time you鈥檙e talking about people in their twenties, thirties and forties but we do see people with labral tears in their seventies.听 And of course the older you get the more likely you are to have some arthritis creeping in.听 And we know that the more arthritis there is in your hip the less well you鈥檙e going to do with keyhole.

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Porter

So what was happening to these people before we realised how significant the condition was?听 I mean if you leave this what happens to the hip other than daily pain?

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Jones

To answer the first part of your question:听 Many of these patients are treated very well with physiotherapy and have very good levels of function and are able to return to sport and exercise.听 Subsequently we have now understood the condition a bit more and there are a group of patients who don鈥檛 progress after physiotherapy and in those they would then expect to see them in an orthopaedic clinic to discuss the options for things like surgery.听

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Porter

You eventually got your arthroscopy, what was it like afterwards, how did you feel immediately after the surgery?

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Amanda

Astonishingly good, even though I鈥檇 been through surgery.听 I came in in the morning, had the surgery during the day and I was discharged the following day on crutches.听 The pain that I had been suffering for solidly five years for sure in the left leg had instantly gone.

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Porter

So you knew you were better?

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Amanda

Yeah.

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Porter

What do you tell your patients about likely outcomes?

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Jones

We know from a wealth of data there are hundreds of papers now on keyhole surgery of the hip and we know that about 70-80% of people who have keyhole surgery will see improvement.听 About 30% do not and within those a proportion of those get worse.听 And the majority of those who get worse will tend to be patients with arthritis.听 And so the data is not conclusive by any means at the moment and things are still evolving because it鈥檚 a relatively new area but the community has taken great care and responsibility to set up what we call randomised trials to try and test the hip arthroscopy against the next best treatment we have which is physiotherapy.听 And there are two ongoing in the UK at the moment, there is another two or three ongoing around the world so we will have more information on both outcome and who specifically we should select for surgery in greater detail over the next five years or so.

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You realise that with the left one when we did the surgery there was a bit of arthritis there but we repaired the labral and we took the bump away which we think was the cause of that arthritis and we also needed to do some regenerative procedure, known as micro fracture, to try and get the cartilage to grow back.听 And it would seem, at the moment, successful so far.听 Hopefully on the right hand side we will have caught things a bit earlier so hopefully we will find less damage on the right hand side but just need therefore to be treating the bump at the front of the hip joint but also the tear in the cartilage as well.

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So Amanda 鈥� well thanks very much for coming all the way to see us today and I look forward to seeing you in two weeks鈥� time for your surgery.

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Amanda

Yeah, can鈥檛 wait.听 That鈥檚 a random thing to say but you know 鈥� for having surgery 鈥� but I can鈥檛 wait.听 Thank you.

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Jones

Thank you.

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Porter

Amanda and Professor Sion Glyn Jones talking to me at the Nuffield Orthopaedic Centre in Oxford.听 And there are some useful links on arthroscopy for hip impingement on our website. Where you will also find details of how to get in touch.

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Millie Kieve tweeted to ask me why we didn鈥檛 plug the yellow card system for reporting side effects in last week鈥檚 item on statins. Perhaps if more patients reported problems, they might be taken more seriously.

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Well Margaret McCartney is still in our Glasgow studio.

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Margaret, perhaps you could start by explaining what the yellow card system is.

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McCartney

Yeah, we have talked about the yellow card system before on Inside Health and I鈥檓 a big fan of it.听 Essentially it鈥檚 a mechanism to report suspected drug side effects to the medicines and healthcare regulatory authority and it used to be that only doctors could do it with a bit of yellow cardboard that was literally pasted into the back of the British National Formulary, which is the big drugs book that we all use and refer to to get information about prescribable drugs.听 And you had to rip that yellow card out, fill in the details and post it to the MHRA and I was always very proud of myself for doing this, I considered myself quite diligent in doing this.听 But it鈥檚 so much easier now, you can do it online, you can do it from app and really importantly it鈥檚 not just health professionals that can fill these in, it is anybody, so you can decide to fill in a report yourself and I would encourage you to do so.

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Porter

Does patient reporting help 鈥� do we have any evidence of the impact of patient reporting?

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McCartney

That鈥檚 a good question and lots of people I think are a bit concerned that perhaps we鈥檙e not using this information well enough.听 But any information is only as good as it is.听 So if you鈥檝e got lots of people that are engaged in sending in high quality reports and information about drugs then that鈥檚 obviously much better than a system where very few people are sending it in.听 Of course we still do need really big randomised control trials going on in looking really hard for unexpected side effects, so that still needs to go on.听 But what the yellow card is really useful for is for the far rarer really unexpected side effects that perhaps would have been missed in small trials.听 If you鈥檝e got a side effect that only turns up in one in 10,000 people you have to have trials that big to start to find the potential side effects.听 And of course once that drug has been used by thousands more or more millions of people then you can really start to pick up much rarer side effects in quantity.听 So I would encourage people to fill it in, get the app or go to the website, if you just Google Yellow Card you will find it because the information is looked at and it is incorporated into making decisions about what side effects are listed in these drugs in future.

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Porter

Obviously severe side effects are important but do the authorities particularly want to hear about newer drugs too?

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McCartney

Yeah, so there鈥檚 a special system where drugs that are more recently on the market are kind of prioritised within that system to get really thoroughly looked at and doctors are extra encouraged to report side effects from them.

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Porter

Another listener contacted the 91热爆 to complain that the Chair of the British Medical Association was not the right person to present Inside Health as his interests were too conflicted to be impartial.

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Well I am sure that would be the case. Fortunately I am nothing to do with the BMA. That is another Dr Mark Porter. Confusing I know, but not as confusing as the time I once interviewed him here on Inside Health. Dr Mark Porter talking to Dr Mark Porter.

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I wonder if the comedian and broadcaster Dr Phil Hammond gets confused with the Chancellor and receives complaints that he is not ideally placed to draw up the nation鈥檚 budget.

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And I mention Phil, Margaret, because a little bird tells me you鈥檙e moonlighting with him at the Edinburgh Fringe.

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McCartney

It鈥檚 a bit crazy but yes that鈥檚 what I鈥檓 doing.听 So every night until the 27th of this month I鈥檓 doing a little guest spot on Dr Phil鈥檚 comedy show.听 He鈥檚 doing the funny stuff and I鈥檓 doing statistics and evidence based policy making.

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Porter

Well I wish you luck in your new found career as a stooge Margaret.听 Those Edinburgh audiences can be tough.

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Now at Inside Health we often concentrate on hard, quantifiable measures like data from randomised controlled clinical trials. But medicine has a softer side too, particularly when it comes to treating complex conditions like cancer.

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More people than ever in the UK are now surviving - or living with - cancer thanks to recent advances in treatment. But choosing the best approach can be difficult.

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Advising someone with an early bowel cancer to have surgery, where cure rates approach 100%, is much easier than choosing the best treatment to extend the life of someone with incurable lung cancer. Or recommending aggressive chemotherapy for a hard to treat tumour where there is only a slim chance of a cure. Just because we can doesn鈥檛 mean we should. A quandary compounded by the speed of development in the cancer field.

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Sam Guglani is consultant oncologist at Cheltenham General Hospital where I refer many of my patients with cancer.

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Guglani

I鈥檝e been working as a consultant oncologist for 10 years and it鈥檚 visible, it鈥檚 palpable, that shift, that gathering of evidence, even over that short period.听 So what I was doing to look after patients with breast cancer a decade ago is profoundly different now.听 The armoury of drugs, for want of a better word, using that common metaphor, is much wider.听 So where previously we might have said look we鈥檝e now tried two or three drugs, chemotherapeutic drugs or otherwise in sequence, there are now further therapeutic options, that is no longer true.听 And that is something that鈥檚 applauded, very much, by society and by health professionals, you often hear the accolade 鈥� exciting new data 鈥� because there are undoubtedly benefits.听 Response rates 鈥� as we call them in medicine 鈥� i.e. if I gave that drug to 10 patients three of those patients would see a shrinkage of their cancer of 30% response rate. Progression free survival, i.e. the tumour stays quieter or in remission for longer.听 And indeed overall survival, increase in length of life, by months, sometimes indeed by longer than that.

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Porter

But is it generally the law of diminishing returns, I mean the more treatment you鈥檙e adding on, the extra layers that you鈥檙e adding in here, I mean a lot of these people are quite ill, are you getting a good return, I mean from the patient鈥檚 point of view, I鈥檓 talking about resources here?

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Guglani

The easy answer to that, the almost caricatured stereotyped answer is no, drugs are bad, look at the terrible side effects that we can cause.听 However, I鈥檇 be lying if I said that was true.听 So in fact if we look particularly in the modern era of personalised or targeted therapies where we鈥檙e really defining the genetic signature of a tumour for instance and being able to target it with drugs that yield higher response rates at lower side effects then that is a good thing.听 The difficulty is 鈥� and this is a real difficulty 鈥� is that we know 鈥� we know for a fact that we鈥檙e all mortal and so how one tempers that therapeutic momentum, for want of a better word, the ability to give more and more, against the fact that all of us must die and therefore the ethics of balancing a good death or a good last six months or year of life against not just the side effects of treatments but all that it means to be visiting hospital every three weeks, having blood tests, having scans, all the fear and anxiety that comes with that, I think is really hard to put on some kind of mathematical scale.

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Porter

Let鈥檚 take cost out of the equation because many of these new treatments are very expensive, they鈥檙e not all freely available and let鈥檚 just talk about what鈥檚 right for the patient.听 No two cancers are the same, no two patients are the same.听 So how do you and the patient decide what level of treatment is appropriate, how do you have this conversation and what sort of factors are influencing that conversation?

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Guglani

Yeah, I think that鈥檚 really an interesting and important question and if we take a very crude description of medical ethics, one of the key things that we鈥檙e encouraged to foster is an individual鈥檚 autonomy, their right to self-determination, to be able to choose what鈥檚 right and wrong for them.听 And arguably to be able to do that well means in some fashion really hearing the person in front of you, empathising with them, identifying with them and getting a sense of what is important for them, what is it that鈥檚 important to you.听 Now these are rarely mutually exclusive but might find themselves on a scale of on the one hand prolonging life at all costs and at the other of really trying to focus on life quality as a primary outcome.听 The difficulty is of course they merge and even with the wish to prolong life at all costs there are limits to what medicines can achieve.听 Now that鈥檚 really hard to communicate because all the time the media is keen to champion and celebrate scientific advance.听 How does one make that decision in the consultation?听 I think the interesting thing is that doctors come to this encounter with as many biases, beliefs, subjective values, fears indeed as a patient.听 I mean Henry March wrote about this really well in his recent book Do No Harm about how much fear there is about if I don鈥檛 do it what if, I might have missed a therapeutic benefit.听 Similarly though I might come to an encounter with a patient and wonder about the pros and cons of chemotherapy for let鈥檚 say someone who has a brain tumour and very present in my mind will be a similar patient who I鈥檝e just given that treatment to who鈥檚 on the ward suffering terribly with side effects or indeed worse, which will outside of the evidence and the P values and the statistics really inform and be present in my views in what I try and communicate there.听 And if I may just very quickly a really interesting thing that we鈥檝e often commented on is let鈥檚 say there are five or six oncologists in the organisation where I work all treating breast cancer and the same patient with exactly the same scan and facts of the case, for want of a better word, arrives at a consultation with all six of us, they will come away with a different sense of what the right thing to do is, based 鈥� one has to assume 鈥� primarily on听 differing people鈥檚 interpretation of the same facts and what they prize and value as good medicine.

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Porter

So what you鈥檙e saying is that there鈥檚 a little bit more to this than science and evidence, there鈥檚 a touch of art?

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Guglani

I suppose I鈥檓 saying that the scientific method and evidence base, P values, confidence intervals will take us so far and have taken us leagues into bettering what we can do.听 But there are other forms of knowledge, that鈥檚 not to in any way diminish the scientific method and all of that but to applaud it but perhaps they鈥檙e finally not sufficient for our encounters with the sick, that we need self-knowledge, not a little humility, ethical reflection 鈥� things that might find their way into a definition of wisdom are important.听 How one fosters that or cultivates it or indeed recruits for it I think is a really difficult thing.听 But we鈥檇 be kidding ourselves, indeed we do kid ourselves every day in medicine by not admitting to the fact that we bring to a clinical encounter our own subjective views, beliefs and hopes.听 And I think a bit of self-knowledge around those will take us a long way into caring better for our patients.

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Porter

The patient will come to your consultation with their own ideas and one of the first things that my patients tend to do is they or their family they Google their condition, they find out what the latest treatment is and they want everything done, understandably.听 Is that a common scenario in the early stages?

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Guglani

People do vary wildly, as they do when they鈥檙e well, with how they receive and then contend with falling ill.听 But I think there is a problem, and others have written about this very well, most recently Atul Gawande, there is a problem I think with how we, as a society, and I count health professionals as part of that society, really authentically encounter and meet the fact of our mortality.听 Unless we鈥檙e suggesting that modern medicine will in the next 50 years or so, 100 years, indefinitely prolong life and that seems unlikely.听 Then we鈥檙e always going to be faced with just that ethical question 鈥� to what extent do we pursue with active intervention if someone has six months or a year to live and at what cost to them.

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Porter

Do many people change their minds as they鈥檙e going along this journey of therapy?

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Guglani

Yeah very much.听 Personally I think that鈥檚 fine. Medicine鈥檚 very bad at contending with uncertainty and that鈥檚 a form of it because what one might say is there may well be benefits here, it鈥檚 important to you to try and fight it, similarly 鈥� and again that metaphor 鈥榝ight it鈥�, the military metaphors creep in 鈥� important for you to fight it but equally there are side effects here.听 It would be a reasonable thing to try this and see how things unfold with a view that if it isn鈥檛 helping or if indeed it鈥檚 causing more harm than good one ought to rethink.听 But you can only do that if you鈥檙e truthful at the outset about what we are setting out to do, i.e. to prolong good quality life.

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Porter

Do you come across many patients who are scared of being perhaps seen to give up鈥�

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Guglani

Yes.

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Porter

鈥� I mean give up in the eyes of other people, they鈥檝e made what might be a very sensible decision but they鈥檙e not having treatment, they鈥檙e under pressure to have that treatment from others or society maybe.

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Guglani

I think the giving up thing鈥檚 interesting and I think the fear of giving up 鈥� what I might just rephrase as a fear of seeming nihilistic happens on both sides.听 So if we think about the very common refrain you鈥檒l hear on the 10 o鈥檆lock news, the UK figures lag behind North America, Europe, the charge there is one of being nihilistic in this country and it鈥檚 a charge that doctors get really uncomfortable about because it鈥檚 seen almost as being counter to good medicine, you know you鈥檙e not being macho enough.听 Never mind the fact that for a good two or three decades here our approach to palliative care and the fact we can deliver that synchronously with active treatment has been second to none.听 But I think that then also mirrors on the other side of the consultation room desk where to be seen not to 鈥渇ight鈥�, in inverted commas, it almost is a non-starter, it鈥檚 not perhaps even almost British which is an interesting thing.听 And it鈥檚 okay to want to live, it鈥檚 a good thing to prize life and to hope to live.听 It would be an odd world where one diminished the value of life, it鈥檚 a centrally valuable important thing.听 But the truth of it is that it will end.

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Porter

Oncologist Sam Guglani from Cheltenham General Hospital in reflective mood and giving us all something to think about.

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This is the last in the current series of Inside Health, we鈥檒l be back for another run in the middle of September and as always are keen to hear your ideas as to what items we should be covering.听 So if you have something you鈥檇 like us to investigate then please do get in touch.听 You can email insidehealth@bbc.co.uk or tweet @drmarkporter.听 Until next time goodbye.

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ENDS