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You’re listening to the Cornwall Cancer Cafe podcast. With me, Matthew. And me, Emma. Thanks
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to the National Lottery Community Fund for supporting this podcast. So we’re back in
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Hematology at the Royal Cornwall Hospital, Trilisk, with Dr. Dave Tucker. And we’ve been
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speaking previously about all sorts of things, such as how a consultant supports a patient. And
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we’ve been talking about new tech and new developments. But this week we have a different
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topic. It’s sort of related in that we’ve talked about a whole lot of developments and trials and
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all sorts of things going on. But my question is more about what the patient needs to know.
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Did you want to know everything, Emma? I did want to know everything. I was very
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I wanted to learn as much as possible about it. Was that for your own benefit or were you
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genuinely actually interested? It was a bit of both, actually. But also I know that my
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grandparents, for example, didn’t want to know anything. When my granddad was diagnosed,
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they absolutely did not want to know. And they just wanted to, you know, get on with it.
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Whereas I was more interested in the nuts and bolts of things. And what does this mean?
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What does that mean? How would this work? How would that work? When? How long? I wanted
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some guidelines, I suppose. I wanted a timeline, I think. So, yeah, I was very curious.
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In my case, I think I there was a certain amount of interest in certain things and I wanted to
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know. But there was a limit to that. And I think to us when it got to certain points in
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my treatment, I actually didn’t want to know. I just wanted to just get on with it, do it.
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And, you know, I just trusted the team. But you were poorly, weren’t you? You felt
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unwell in your treatment. I felt very unwell. You felt very unwell, whereas I didn’t. Mine’s a
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skin cancer, it’s a melanoma. So I wasn’t feeling unwell. I was just feeling very,
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very frightened. OK, so let’s put this to Dr David Tucker now about does a patient
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have to know everything? That’s a really good question. So no is the answer in the short answer.
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The longer answer, I suppose, is that when we’re trained as doctors to discuss care with
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patients, there are three broad models that we’re trained on. There’s one called the
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paternalistic approach, which is where you the old fashioned approach, I suppose nowadays,
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where you would this is what you’re going to get. This is what’s good for you. That’s the
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decision I’ve made. And that’s the end of the discussion. That’s the paternalistic approach.
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We don’t use that so much anymore. Some people still want just for us to make a decision,
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and that’s OK. But we have to at least give them the opportunity to know as much as they
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need to know. Then there is on the other end of the scale is what’s called the sort of
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approach, which is these are the options. These are the pros and cons of each one.
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Go away, have a look at it and have a think and tell me which one you want.
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And that’s at the other end of the scale. We sometimes do use that. But the more kind
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of common approach is a shared informed approach where we give you as much information as we
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have and we think that you want. But there’s a discussion between the doctor and the patient,
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and often the patient will say, well, in your experience, what do you think
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is the best thing for me? And we make a decision based together so that we’re both
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working from the same sort of decision. So the shared approach is what we use most these
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days. But that doesn’t necessarily mean that the patient has to know everything.
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And what they do have to have is the opportunity to have as much information as they want
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before we make a decision. That leads us to another big issue, which is consent, which is
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where you say, well, we definitely do need to gain consent from patients before we do anything
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for them or with them. And that’s what we call informed consent, which is where
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the patient has enough information to make a decision at that particular moment in time.
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It doesn’t mean that they have to know or remember everything every time. But at that
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moment, do we think that they have enough information and can weigh up that information
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at that moment to make a decision? And so that’s another question.
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So with all the amount that we’ve talked about, all the developments and it’s a very
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scientific area, which is, I mean, very interesting. But in many ways, you can’t
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expect a patient to really understand everything that’s going on. And I suppose with a lot of
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this, understanding it is what true informed consent is. And so it’s a lot of training.
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Yeah, I was also thinking, especially when you’re first diagnosed, it might be the first
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time you’ve heard of whatever cancer you’re being diagnosed with. So even if you’re the
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sort of person that’s going to go away and learn about it, because you don’t know what it
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is yet, you can’t do any learning. So you really have to rely on your consultant to come
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to you and say, this is your diagnosis and this is what we think is going to be best for
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you. And the consultant has to almost be a teacher on certain elements of what’s going on.
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Exactly. And I think that’s where being a specialist, the skills of one of the skills
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of being a specialist is to know how to relatively quickly bring someone up to speed
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with in a way that they can understand with what’s going on for them. One of the questions
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that I ask is, what’s your background? Because if you’re talking to a mechanic,
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for example, you can use very mechanical language and that will, and you can use all
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examples and analogies that will work for them. If you’re talking to a statistician
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or someone like that, you’ll want to use things differently or speak to them differently.
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We talk about neuro-linguistic programming here.
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So we’re trained to, one of the things we’re taught is find out what your patient’s
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background is and then you can use the sort of, you can use language which is appropriate
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and terminology which is appropriate. As you all know, in medicine, we speak in a totally
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different language most of the time and we use all sorts of initials and acronyms and words,
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which is completely foreign to most people. Let’s get from you the longest drug name
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you use regularly.
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There’s so many. I mean, even a drug like vitamin B12, vitamin B12, which people have,
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that’s called hydroxycobalamin or something like that. So most people don’t, I’ll have
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to think about a really long one for you, but we do use all sorts of abbreviations and
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and we have to. So we don’t get tongue-tied as well.
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There are some acronyms to describe patients, aren’t there?
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Maybe we shouldn’t go there.
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Don’t go there.
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But we know you can Google them.
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There are also acronyms to describe doctors.
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Okay, give me some of those.
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No, that’s not fair.
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But it’s not just the drugs, it’s the tests, it’s the body, it’s the diseases. A lot of
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those have got incomprehensible names which are often historical and are changing as we know
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more about them. Older diseases are often changed. For example, Hodgkin’s lymphoma
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used to be called Hodgkin disease because we didn’t know it was a lymphoma and now
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we know more about the cells and that it’s a lymphoma type. So things are changing all
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the time and we have to be able to deliver that to the patient in a way that they can
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understand. Be happy that they understand enough to make a decision and sometimes that
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is really difficult as you know. A lot of these things are moving so fast that we don’t
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always have everything at our fingertips and we often have to say we’ll go away
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and review things and come back, especially if patients want. We try to keep ourselves as
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up to date as possible but sometimes things change on a weekly basis and we have to be
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able to adapt to that. You’re listening to the Cornwall Cancer Cafe podcast with me,
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Matthew and Emma and we’re talking to Dr David Tucker in his office in hematology at the Royal
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Cornwall Hospital. Emma, after a very interesting conversation already, you’ve got a point to
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or a question to ask. Yeah, I have got a question to ask and it links with another podcast we’ve
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done with Dr Becky Hodgkins. Not Hodgkins, Hopkins. We’ve been talking about Hodgkins so
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much. That’s why. Anyway, Dr Becky, so we talked to her about having the carer with you,
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the second person with you. So we’ve just been talking with Dr Dave Tucker about talking
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to the patient and getting informed consent from the patient and what do you tell the patient?
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But obviously the patient will quite often bring family or friends with them. So how do you,
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when you see that the patient’s full up with information but the family and friends are still
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there, do you stop at that point because the patient is the person, the important person,
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or do you tend to give a little bit more so that the family and friends can take that in
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and they can take it away with them? Yeah. We, the first, our first concern obviously is for the
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patient. So we have to know that they are happy for us to discuss with their family and friends.
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That’s a primary point of ethics. If they are and they’re up to their eyeballs with
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information but they’ve got someone with them, yeah, I mean we can relay that to a member of
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family or a carer. We tend to try to, as we discussed previously, discussing things verbally,
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you only remember a tiny amount of whatever use ever is said. So there’s all sorts of written
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information that we try to give to patients. There are booklets, there is loads of helpful
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stuff on the internet from, that we can signpost people towards. But yeah, if a patient
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may not want or understand everything but they say, well I, but I do want you to tell my family
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or my next of kin, we do sometimes have that conversation with them, yeah, yeah. But it has
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to be at the patient’s request. And is that a signed request? Not necessarily, no. I think
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that’s where the whole issue of consent becomes complicated. There is, I can consent for
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you to take my blood, for example, by holding out my arm and that’s sort of presumed consent for you
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to put the needle in and take the blood. We don’t need signed consent for that but we would
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need signed consent if we were going to start you on a new cancer drug, for example. And
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the amount of informed consent you need is usually proportional to the complexity and the
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of side effects. So if you go for a bone marrow transplant, for example, you’ll come away with a
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long letter of all of the various aspects of that. I found the stem cell transplant letter was
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fairly frightening in itself. Yeah, I mean it’s like a terms and conditions for a mortgage.
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It’s huge. And the further you go down, the more severe. Yeah, and that has to,
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we have to be honest sometimes about really high risk things like that. So if there’s a risk of
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life-threatening illness with it, then we have to make sure the patient knows that.
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There is another issue to consent which is if a patient is unable to consent for themselves,
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they don’t have the capacity, either they’re unconscious or they don’t have the mental
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capacity to consent. We have a different form of consent which goes through several doctors
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making a decision which they think is in the patient’s best interest.
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There are guidelines, aren’t there, that you follow for that on there? Yeah,
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you don’t just make it up as you go along, there are guidelines, aren’t there?
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Can you give a brief run over of some of those guidelines?
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So the GMC, the General Medical Council, has issued specific guidelines on consent
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and what to do if a patient hasn’t got capacity so that you’re making a best interest decision
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for them. And that usually involves having another opinion from another consultant or senior
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doctor to say we both agree that this is in the best interest. And usually, almost always,
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we would involve family or next of kin. So we would never make a decision or very rarely
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make a decision without involving a family. It’s best practice to involve the right people at the
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right time. So we wouldn’t ever want people to think, oh, they’re going to do things to me
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that I don’t want or I don’t agree with. So the other thing is we have to remember
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patients often have advanced directives in medicine and we would do our absolute best
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to make sure that we knew all about that and we wouldn’t make a decision that the patient
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didn’t want us to make. Okay, so that takes us to the next big question of what is your TAC
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once or if a patient says I don’t give consent on perhaps one of the best treatments for them?
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Yeah, so that’s a great question. So our role as a doctor, first and foremost,
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is to do no harm. That’s the Hippocratic oath and respect the patient’s autonomy.
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So that means if a patient has capacity to make a decision, even if you don’t think that
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that decision is the right one, your job is to respect that decision.
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It must be frustrating for you, though, as the consultant knowing that that treatment
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is their best chance. Yes, I mean, it doesn’t happen very often. I’ll say,
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Marty, I don’t remember very many occasions where we’ve had a great treatment and the patient has
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decided not to have that, but it does happen sometimes and patients will sometimes come with
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things that they’ve fixed ideas or things that they don’t want any kind of cancer
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treatment. And sometimes you have to just unpick that. Why is that? So often it might be because
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well, I saw a relative undergo treatment and they had a terrible time and so I don’t want
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anything like that to happen to me. So taking some time and also leaving the door open.
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So if a patient goes away having decided I don’t want that, fine, that’s their decision. But
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can always say, well, if you change your mind, we’ll review things. So it’s about
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often it’s about establishing trust and a relationship and finding out the background
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for those decisions. But at the end of the day, our job is not to force anybody to have
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anything is to respect a patient’s decision and work with them. So sometimes it has
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occasionally happened. I can think of occasions where a patient has really not done not engaged
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with any treatment and it’s been heartbreaking for us because we’ve felt that we could have
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done more. But at the end of the day, we have to it’s been at least we know that we
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that they made that decision and that was there is their body and they made that decision.
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I suppose the other point related to this is that a patient’s condition changes through
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the whole treatment cycle. And there may be a point after giving consent, the patient thinks,
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no, I don’t like this. Stop. Absolutely. So that’s where when we talk about consent,
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consent is not signing a contract. You know, it’s not you know, you are you’ve agreed to do
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this and therefore you must go through with it. There’s always there’s always the chance
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for someone to withdraw their consent for something. So you should always respect that
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this is not a legal document that obliges anybody to do anything. It’s at that time
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I consented to this. I might have changed my mind and withdraw and that happens in clinical
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trials as well. People decide I don’t want to carry on and that’s perfectly fine. We just
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say, okay, we’ll we’ll take you off the trial and we’ll go on to standard of care.
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So it happens. We you know, we’re humans. We change our minds. That’s fine. We can we can
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work with that. The one word that keeps dropping into my mind is safeguarding as well.
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So that’s part of understanding if someone chooses to say yes or no,
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there might be a safeguarding issue in there as well. Because I suppose
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people to a great degree are vulnerable at that stage. Absolutely. And we have a responsibility
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to try and recognise if we think that there is a safeguarding issue and we have training on that
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and there are teams in the hospital who help us to look after people that we think might be
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vulnerable. So and to represent them or advocate on their behalf like a patient advocate. So
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we have all sorts of people in the team who can help with that.
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Raising awareness and supporting the incredible work of the Made For Life Foundation and Royal
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Cornwall Hospital Trust. Join us on Sunday the 18th of July, 2027 at Pengelly Barn near Truro
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for an unforgettable day of live music, wellness, great people and feel good festival
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vibes. Because cancer touches so many lives and coming together can make a real difference.
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You’re listening to the Cornwall Cancer Cafe podcast. We’re in the office of Dr.
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Dave Tucker at the Royal Cornwall Hospital. Emma and I are talking about things such as
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consent and understanding what’s going on. And one of the thoughts that occurred to me
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just now was when I’d relapsed the first time, I was waiting for biopsies to work out what to
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do. And that was a very confusing and actually quite an anxiety making situation where I could
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cancer getting worse very quickly. And there was a point where I said, right, blow the biopsies.
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Let’s just go for the chemo. And then I was put on the stem cell. But I made the decision
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to just avoid the biopsies because they couldn’t make up their mind relating to
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a trial that was a possibility. Right, yeah. Yeah, no. So anxiety, again, over tests and
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the length of time it takes for tests to happen is a real issue. We try and get tests
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in as quickly as we possibly can. When, particularly with cancers, which we think have
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got rapid, they’re moving rapidly and we don’t want to waste a moment. But even just the
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of a biopsy from the point where it’s taken the needle, it then has to be preserved in formalin,
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for example. Then it has to be embedded in wax paraffin. Sometimes it has to be decalcified,
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which means they have to take away the calcium presence in it that can take some time. And
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then it has to be sectioned, stained and looked at by a histopathologist. And all of
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that can take a few days. And then even then, the biopsy sample might not be adequate. It
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might not be the right area. They might have slightly missed the cancer or they might not
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have enough of it or it might be non-diagnostic. I think in my case, the biopsy,
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the delay was more to do with the fact that the surgeon was worried about where he would
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have to biopsy and the dangerous nature of that. And we still rely on what called tissue
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biopsies, core tissue biopsies a lot of the time, which means that we have to go in
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to sometimes difficult parts of the body to get them. It’s not always accessible,
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but there is work going on on what’s called blood liquid biopsies or circulating
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tumor DNA. But that’s not yet developed in my form, in my specialty, that’s not yet
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developed to the stage where we can make a reliable diagnosis yet in most cancer types.
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It is for some and we sometimes do use the cells, but there is always that anxiety about
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that delay. Some clinical trials, we need the biopsy. We can’t go ahead without it. But as you
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say, in your case, it meant that you went for a different treatment. That was my informed
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decision, wasn’t it? And I have to say that it was really well dealt with and I was so
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pleased just to get on chemotherapy because that then got rid of all the pains very quickly.
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And most of the time, those tests that we do are really helpful, but not always. Sometimes
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they’re ambiguous, the results we get back. Sometimes the results are non-diagnostic.
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Sometimes they’re not definitive. So people sometimes don’t appreciate that there are very
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few tests which are absolutely black and white, yes or no. They’re usually gradations
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of certainty and levels of sort of certainty. So those are all things that we have to
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interpret. And they’re open to interpretation. Most blood tests are developed on a range. So
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they look at the natural population, the normal population. They work out a kind of range for
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what’s normal for a certain test. And that’s usually a sort of bell-shaped curve. And then
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there’s an element of every healthy population, which is just outside of that range,
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but that’s normal and we have to remember that. So, yeah, anxiety over results of
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tests is a big issue.
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So Emma, we’re coming to the end of this podcast. And I think it’s time to just get
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some tips on the consent process for the patient. Do you think that’s a good
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thing that would be useful?
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I think listeners would probably find it helpful to have, you know, a short,
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this is what you do, this is what we need, this is why we need it, sort of thing.
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Keep it simple, stupid. I’m not calling you stupid. I’m the stupid one.
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That’s the acronym KISS, isn’t it?
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Yeah. Okay. So let’s get the keep it simple, stupid guide for tips on consent process for
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the patient.
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Okay. So I suppose you could say, try and read all the information. Do you understand
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it? Are there bits that you don’t understand? Then ask the questions. Ask those questions
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and I guess you could say, what would happen, you know, your patient could say, what would
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happen if I don’t go into this, or don’t do this? What are the sort of risks of
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doing it? And what does it entail? How many visits? How much am I going to need to
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come to hospital? And are there any things that, you know, you can always ask the
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consultant or the team, what are the things that they see most commonly with this
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treatment? So you can ask them for their experiences of it. Have you used this
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before? Does it work and what side effects do you see? We’re very happy to
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discuss that because usually the consent process gives a huge list of stuff and it’s
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difficult to know the wood from the trees because you’re sort of thinking, well,
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that might happen. This might happen. But usually we’ve seen enough cases
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using that treatment to have an idea as to what’s common and what’s less common
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in terms of what might happen. And I suppose you don’t need to make a
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decision then and there in the office. And you never have to make a decision
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then and there. We usually try and give people, as long as they need, to
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consent. So as long as it’s needed, usually 24 hours, but we very rarely
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we would never want to rush somebody into making a decision if they’re not
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ready. So take your time. Say, can I go away and think about it and then
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come back with a list of questions if you need to? I suppose it also
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depends at that stage on how anxious, once again, the patient is to get
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something happening to deal with their cancer, because I suppose there
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were occasions with me when it was, no, just get on with it.
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Yeah. And as long as we’ve given you the opportunity to ask questions,
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read the information, then you’ve had that time, then that’s the
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most important thing.
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Emma, what have you learnt from today’s chat?
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Well, one thing I did want to say is, so we’re looking at Dr Tucker
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sat here. You can’t see him, but his body language is he’s absolutely
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open whilst he’s discussing this. He’s sat facing us open and he’s got
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his, he’s opening his arms. So he is being so open and forthcoming.
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And I just want to say thank you. You’re just, you’re absolutely
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fantastic. Thank you.
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And I suppose those people say for companies and they have their
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written on the wall, open, honest and transparent, all these things.
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This is very, that’s very important for consultants, isn’t it?
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Yeah, absolutely. Body language is half the battle.
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And if you, if you’re not open and honest, then I mean, that’s an
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absolute prerequisite to being a doctor.
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You have to be honest and know when you don’t know something and say,
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well, I don’t know that, but I will go away and find out for you.
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And I think that’s, it’s okay to say that to patients, I think.
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So, yeah, thank you for your kind words.
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And it’s been a great to talk to you both.
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Yeah, thank you.
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And thank you very much.
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We will now need to do the bit where I’m not a doctor.
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Are you a doctor?
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I’m not a doctor.
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He’s a doctor though.
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He’s a doctor.
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He’s a doctor.
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We’re not doctors.
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Where we’re not experts, apart from expert patients.
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We’ve already learnt that.
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But there’s also the hug issue.
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Yes, yes, because we always give a big, big hug to everybody.
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Because when you give a hug, you get a hug.
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See, we were teaching Dr. David Tucker something here to join in on this.
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Well, thank you very much once more.
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And we will be back next week.
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Emma and myself.
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See you next week.
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Bye.
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