Cancer (young people)
What young people think makes a good doctor
'A doctor that knows how to talk to a young person is one that uses easy to understand language and simpler explanations without patronising them’ (Interview 24)
Although it is very difficult for young people who have developed cancer to come to terms with their illness - they can be enormously helped by health professionals who are sympathetic about their fears and anxieties, and who can explain what is going to happen, clearly and easily.
In the interviews, it is interesting that young people rate the communication skills of their doctor just as highly as they do their actual technical ability to treat them. What makes a good doctor is someone that talks directly to them rather than communicating through their parents. It is also important that they treat and respect patients as young adults rather than as children. A good doctor is also someone who is relaxed, friendly and approachable, listens to concerns, is willing to answer questions, and who can put a patient at their ease and provide reassurance.
One young man who was interviewed said that being able to share a joke with his doctor made him feel more supported (Interview 09). Most young people valued both honesty and straight-talking from their doctors about their prognosis, treatments, and the risks involved in the treatment procedures. Vital was the doctor’s ability to do away with medical jargon and explain things in simple terms. The mother of one girl was surprised and pleased to discover that the consultant explained things to her daughter in a much more straightforward way than he had explained it to her. Further, some said that their doctors often explained things to them over and over again in order to make sure that they fully understood what was going to happen. Others much appreciated being given information a bit at a time so that they could take it gradually which helped them come to terms with it all.
He found the consultant's honesty very 'uplifting'.
He found the consultant's honesty very 'uplifting'.
And you know I, I saw the consultant who was going to treat me, I saw him at a different branch of the hospital in London and he was very straight with me, straight in the sense that I said to him 'Am I gonna die?' and he said 'Yes you might but I will do my best to make sure that you don't.' And I'm the sort of person that likes it straight like you know just the facts, not any waffle or anything like that just, just give me the facts.
And I did actually find that very uplifting. That here was someone who was very honest with me and said 'Yeah, yeah I acknowledge that but I'm gonna try my hardest to make sure that it doesn't happen.'
Trusted his doctor because he was always explaining things and telling him if he was going to...
Trusted his doctor because he was always explaining things and telling him if he was going to...
Well all the doctors and nurses I had were great. Especially my consultant at my, at the, the hospital I was like through my transplant and stuff, he was amazing. He was like, I was in the kids unit but he understood that I was a teenager and that I was at the point where I, you just needed to be told like what was going on, what will happen, what could happen and not try and sugar-coat it, and he was good at that, he was quite blunt some of the time, but it worked for us, it was like what we needed to know. And if he said, 'This won't work, you need to do this,' that's what we'd do. So we had, we had total faith in him, like he knew what he was doing and stuff so.
And all my, all my nurses were, were great, I still see them sometimes, like I go back and see them and all the staff like and the nurses that I had at the teenage unit as well, they were amazing, they actually you, you can tell the difference between a teenage unit and a children's unit.
A teenage unit they weren't wearing uniforms and stuff like this, so they would, they don't feel like they, they were nurses, they felt like, because you got to know them as friends, they felt, you felt like they were just friends who knew what they were doing like and they were just giving you medicine and stuff like this. So yeah, the staff were, were great everywhere, every, every hospital I was in they were great.
And the doctor, the consultant that did the transplant you liked him because he was kind of honest and explained things clear?
Yeah, he kind of, he just made you feel safe, he made you feel like he, he was in control, he knew what he was doing and everything that he was doing was in your best interest. And he'd keep you, he'd tell you exactly what was going on, didn't leave you in the dark about anything. If he had asked some, another colleague of his like what 'Would be the best thing to do in this situation?' he would tell you that he's like, he wants to do this and he's found out other people that say that this is a good idea. And he wasn't afraid to like, if he felt that he wanted to change part of the, of, of the medicine say because he thought himself that he'd feel better, find out about it and he wasn't afraid to like ask you whether you did it or not. Saying things like 'This might work, or you might feel better with this,' and stuff, so yeah he was, he, he, he just made you feel a lot safe, a lot safer. And a lot more confident in the stuff that was going on, because there was times when you were taking so many drugs that you're feeling terrible, you're thinking that this is making me feel worse, and aren't these drugs supposed to make me feel better. So you just want to say 'No I don't want to take them, they're making me feel terrible,' and stuff like this, and he'd just reassure you what they are, that's what they're supposed to be doing, you know, they're going to make you feel like crap, but that, that's what the, part of the job.
Okay. And you felt that you were treated like a teenager?
Yeah, well I thought I was, they, they started talking to me rather that my parents, like a lot of the time my parents would answer for me, but they, as well as telling my parents, they were telling me what was going on. And like so that I would have to make some of the decisions as well. So it made you like because you were growing, you're growing up at that time, I was, I was like just getting freedom and stuff like from the age that I was and becoming a young, young adult they, they were giving me that privilege and stuff. They were giving me the benefit of like talking to me rather than going through to my parents and stuff like that.
Not surprisingly, not all the young people we interviewed had entirely positive experiences. A few complained that their consultants had been insensitive or even patronising. One said that they felt that their doctor was just treating their illness but not them as a person. A few felt unhappy with their consultants and asked to be treated by someone else. One said that their first consultant found it difficult to 'share’ the care of their patients with other colleagues who needed to be involved. Another was horrified to find out, only three hours before his operation, that he was going to have one of his testicles removed.
Compares her first consultant to the second one, who seemed to have more experience in treating...
Compares her first consultant to the second one, who seemed to have more experience in treating...
I remember sort of feeling frustrated with my adult consultant, because I never thought he really listened to me. He always- whenever he wanted to talk to me, or about the treatment, he always talked to my Mum, or he took my Mum outside, or he talked to my Dad. He never talked to me. It was always, you know, "How is she?" or - it was so - I don't know. I guess I wasn't really hearing him when he was saying that because I just, I didn't kind of believe him and I didn't want to believe that they weren't going to do anything else 'cause - I don't know, it was just, just - It was quite scary hearing him say that, but my Mum- I don't think my Mum was going to let him do that, so I kind of trusted my Mum not to let it happen.
So your mum sort of found'?
Yeah, my mum, yeah, she went and she sorted it out, as mum's do [laughs].
The consultant that I eventually got, Dr was just the most amazing doctor I've ever had. He, he sat me down and he explained everything. And he didn't brush off any fears, he - I think, because he had so much experience with people of my age, he could understand what people were scared of and he explained that like, you know, if the chemotherapy hadn't sort of killed off all my, my being able to have a child and all that, this radiotherapy probably would, because it was that area. So he explained all the side-effects. He explained what could happen, what might happen. And he said, you know, if I ever have any problems his door was open. I could just go and see him and he'd sort out what he could.
Recalls that he expected only to have the lump removed from his testicle and was shocked to be...
Recalls that he expected only to have the lump removed from his testicle and was shocked to be...
The doctor came round, marked on my left thigh what testicle it was you know that they were going to be operating on. Then a consultant came in, he said that did I know what the operation entailed? I said, "Yes removing the lump." He said, "A radical orchidectomy," I said, "No removing the lump," he said "Yeah." My girlfriend commented on the look on my face, when he used radical I knew that it wasn't probably just going to be removing the lump. So then my doctor came round with a consent form and said, “Did I have any questions before I signed it?” I said "Yeah one big question that's burning inside me what are you actually going to do?" He said, "We're removing the testicle." And I just looked at him in amazement. And I remembered back to the Monday that I was told that I was going to have the operation and I remember his exact words "We are going to remove the lump." At no point did he say that we are going to remove the testicle. So I sat there in amazement. I signed the form. I wasn't going to go back. I knew that it was the best thing for me. He said that operating on a testicle with a lump on it, if it was cancerous that would encourage the cancer to spread. So I then went on to ask him if it was cancer what would then be the procedure. He said that I'd be asked back in for a CT scan and then obviously further treatment if required. So again I just, it all came to me, it was three hours till the operation and they tell me this. It was not good timing.
Many young people found that their doctors and nurses provided all the information they needed and were always happy to answer their questions. Others thought that their consultant’s approach was to try and not unnecessarily overload them with information. But this wasn’t always the case and, one young person (Interview 22) said that her doctor seemed so incredibly busy, that she was put off asking the questions that were important to her but which the doctor might think were minor. A few young people thought that obtaining information that they wanted about their cancer had been difficult because their particular case was very unusual and therefore their doctor had not dealt with it before.
Most young people found it helpful to have a parent with them when seeing the doctor because parents could then ask the questions that the young people might not have thought to ask themselves. One mother said that she would have liked the doctors to talk to her more so as to advise and reassure her, so that she could then, in turn, reassure her son (Interview 05) (see also ’Finding good information and good information sources’).
Doctors gave him information in straightforward, non-medical terms and he did not feel the need...
Doctors gave him information in straightforward, non-medical terms and he did not feel the need...
And did you have questions for them?
No, not at the time, I was just more keen of just getting back, back at home like sort of thing, back to work and having my life ordinary again [laughs].
Ok but did, you were able to ask questions if you have any?
Yeah, yeah, yeah you were allowed to ask questions all the time and main question was how, how am I progressing? But other than that, I didn't really have many questions.
So that was your main question?
Yeah
Ok, and what about the nurses on the ward?
The, they're, they're always there if you needed them and they're always helpful and what have you.
Ok, so do you feel you could communicate or talk if you have any, if had any problem, talk to either the doctors or the nurses?
Yeah you could talk to the nurses and doctors all day long. I did, I did that but it's a question of I didn't really question on what I'd already knew sort of thing 'cos, like I say they're, they're telling you stuff as it happens sort of thing so you didn't really feel left in the dark that you needed to ask the questions.
Thought her doctors didn't always tell her everything she needed to know because they knew her...
Thought her doctors didn't always tell her everything she needed to know because they knew her...
Yeah I think they're very aware, aware of that these days, sort of really making sure you understand and putting it straightforwardly. I think without having my Mum know so much about everything was an incredible help, I think in some way it was a bit of a hindrance 'cos they wouldn't necessarily go into every detail or because they knew that I, you know, that Mum could explain or that sort of thing, but I think generally the one think I find difficult to communicate with them is the, the kind of hormonal side-effects and, and things like that, and because also with, with Consultants when you see them you're very aware they're incredibly busy people and sometimes the smallest things is actually very important or can be important to you but you sometimes feel a bit like, I can't tell you everything 'cos, 'cos you're so busy and you have to dash off and see a million other patients, so, I think that's one thing that's quite a challenge in communicating yeah.
I've been very lucky 'cos my Consultants are both kind of, on hand and willing to, willing to help out or because I was up at University they'd sort of say, 'Oh just email if there's any trouble or give me a ring at home'. All that kind of thing, so I was very lucky that were both very supportive and were keen to, were keen to help me stay at University and that kind of thing communication wise it can be a bit, a bit challenging.
Yeah?
Just, just 'cos and I think as well, in some respects because I am so young and they might be used to dealing with menopausal women of fifty, I mean it's sort of like they don't necessarily know how to approach it they don't want to embarrass me or and I think sometimes they feel more embarrassed than I do [laughs]. I don't know, I'm sure they don't but you know? I think that, that comes across, but it is quite a challenge sometimes.
His doctors explained about treatment and side-effects in easy-to-understand language and tried...
His doctors explained about treatment and side-effects in easy-to-understand language and tried...
Yeah. First there was a, everything was just gibberish. I didn't know, they gave me a leaflet which explained what leukaemia was but it was off the Internet and it was just using big long words I didn't understand. But then the doctors came and they sat down with me and then they explained what it was and then they brought me other leaflets. And I read them. They were a lot more easy to read.
Did they explain about the treatment, they went into details?
Yeah. They explained everything in detail. What you are going to go through. How long it will take. What you'll be feeling like, side-effects. So they explained quite clearly.
Ok what did they say about side-effects?
You won't have the strength as you normally do to walk about. You will probably feel nausea, sickness, you would just basically won't be feeling yourself.
Did they tell you about hair loss?
Yeah. They told me about my hair loss as well. You lose your hair, hair, you're eyebrows. My eyebrows are starting to come away as well. They were a lot thicker before. I expected to lose them in the last positive chemo because I've had three so far. No, I'm sorry this, this is my third one I'm going through. I had that losing the second but everyone is different. Big lumps, thats what scared me.
So you were scared of the kind of physical effects that the chemo was having on you at that time, at that period. Did you manage to talk to someone about your apprehension, your fears regarding chemotherapy?
I didn't talk to anyone. I just kept, I usually bottle my feelings. I don't really tell other people this is what I am going through. I don't tell my best mates anything like that. It's just the way I am but obviously I, every one needs someone to talk to. I just kept it to myself.
The doctors tried persuading me to come back to the hospital. They tried their best. They gave a lot of effort into it. But I think it was just me who just blocked out. I couldn't see that I had to go through the treatment.
Junior doctors in hospital were sometimes the subject to criticism because of their relative lack of expertise and inexperience at disclosing information to young people and their parents. One mother described how a junior doctor had given misleading information, causing her unnecessary fears and anxiety.
A junior doctor gave a poor prognosis to the mother of a young person with a brain tumour, which was later corrected by the consultant.
A junior doctor gave a poor prognosis to the mother of a young person with a brain tumour, which was later corrected by the consultant.
Yeah, it was very worrying because he just wasn't, he wasn't conscious of what was going on around him, he was like somebody that you see who is very badly brain-damaged and has, has no control over limbs, they're not able to communicate with you. He couldn't even communicate with the usual message of the thumb up or the thumb down you know, not, things weren't so bad. He just couldn't communicate at all and we were very worried. The staff were clearly worried that the light-heartedness had sort of gone. They were monitoring very, very closely, the surgeon, the surgeon and his staff were up at regular intervals over the next 3 days. One junior doctor appeared and said, 'I've seen this before, we call it locked-in syndrome,' and I said, 'You know, does he get better?' He said, 'No, it's often permanent.' And that was one of the worst feelings I have ever had; everything looked very black whereas before, I'm quite a practical person, I'd got my sister, who was a nurse, supporting me [cough] and we were very positive and we had a lot of help from the nurses. But at that point that was the worst scenario that he was actually left badly brain-damaged without any hope. At that point I felt I'd rather, rather he had died than live the rest of his life in the state he was in. But soon after that the consultant came up, well no, the consultant's registrar came up and said, 'No, he shouldn't', this junior doctor should not have said what he did say. She still feels, he was too well, even though he was very, very seriously ill, there was too much that he was able to do that would give him hope, give her hope that this wasn't permanent.
In almost all aspects of care young people found nurses an enormous support and praised their sensitivity, compassion, friendliness and sense of humour. Nurses were also less formal than doctors and hence were more approachable and better at explaining things in a fun and easily understandable way. Part of this was that many nurses were closer to their patient's age so they can talk about ’stuff’ which is pertinent to that age group - for example - about music or school life (Interview 07) (see ’Being in hospital’).
Another important issue was continuity of care. While some young people had seen the same consultant since they were first diagnosed others said that they didn’t always see the same doctor, and that this lack of continuity made it harder to develop good rapport and trust between them and the doctor. While many consultants were described as ’inspiring confidence’, it is not always the case that young people felt able to open up and talk to them about their worries and/or innermost feelings.
His consultant raised the issue of possible long-term emotional effects of experiencing cancer...
His consultant raised the issue of possible long-term emotional effects of experiencing cancer...
They're all. First of all they probably all came out of his questions to me about the. He would talk to me about the kinds of side-effects that people have from having this treatment and whether I was having any problems. And he, he used to ask me if you had any? And I didn't know what he meant at the time. I was about eighteen, nineteen. He asked me if I had any personal, emotional or psychological problems that I felt, not necessarily that came about from the illness just generally because he, from his experience, he's obviously seen how it can affect people who have cancer when they're very young. And at the time I, you know said, 'No it's fine. I, I can get over it fine'.
And then you know over the last few years I've probably, I've probably thought well maybe I have got some problems I should bring them up and mention it to him but again. I, I haven't. And I don't really, I don't really feel like I need to at the moment. But yeah, there are, yeah he, he has he sort of prompted me to talk about things rather than the other way around. But I, I spoke to him about the illness itself and the chances of it coming back and the chances of any form of cancer coming back and things like that. And every time I go there I kind of feel like I'm being educated a little bit more on what happened. Because he's aware that I don't, I was very young and didn't really know anything that was happening. So whenever I go there now, every now and again he'll just expand a bit more what happened and make me realise how serious it was because he. I think he's aware that, you know, I, I was very young at the time and I wasn't really sure what was going on. But yeah we've got a very good relationship with him and I can, I feel I can ask him anything.
Says that seeing the same medical team has help to build up good rapport and trust.
Says that seeing the same medical team has help to build up good rapport and trust.
And then I decided to be based in [place] because I thought it was a long way to keep on going and I'd be seeing registrars instead of Mr [name] who was my doctor. He was kind of like the top doctor and then he had all these registrars so I kind of found that I was seeing different people each time so I thought it would be better to be more local.
Why you found that it affected the communication, the dynamics somehow?
Yeah because it was just, you know if you see a different person each time you're not really quite sure what they know and just your history and you kind of feel like you have to explain yourself all over. And it seems such a long way to see someone that you didn't know and might not know anything about you that we thought, the person who was in charge of my radiotherapy in [place] referred me to someone in [place] just because it would make, if I could see the same person, kind of build up, I don't know a kind of trust between doctor, a kind of rapport, because that was something I found hard, because it was so overwhelming if I didn't see the same person twice, it was just a bit like I wasn't really known, I didn't feel. I mean they were lovely in [place] but there was lots and lots of people that they saw so I just kind of felt more personal.
The communication links have just kind of built up over, over the, I don't know how long I've been with them about three years, two and a half, three years. You know so it's really good, I'm really pleased with my doctors now, just really, I can talk to all of them really well and they know my situation inside-out and so you can go and talk to them. You don't need to give any history, you don't need to give any reasoning behind what you're saying because you know, if you know them it's not this kind of faceless thing. You can say something and they'll remember what you said the last time.
So it is the continuity?
Definitely, which is something that I, I, was important to me and something that I've got now. It's brilliant because it genuinely is really good. My, the surgeon can take my word. If I say I, 'cos I've got very sensitive hands, I can feel glands very easily on my neck and if I say that I can feel it, he'll make an effort to try and find it and I'll have a scan. Or if he's already doing surgery he'll trust my judgement and have a look to see if there is anything there and so that kind of trust and rapport between the two of us I think is really, really productive because you need to have a doctor who doesn't kind of look down on you. Like I'm superior and so I know everything so you can't possibly know what you're talking about, kind of thing. It's very, you know, I can have a conversation with him. With both, with all my doctors, I have several, I can, you know, I can sit and I can talk to them and you know I kind of feel respected for my opinions so that's, that's good.
It was certainly the case that overall the young people we spoke to were full of praise for their doctors - describing them as ’brilliant’, ’wonderful’, or ’amazing’. Many said that they felt forever grateful to them and to all the health professionals who had looked after them, and couldn’t thank them enough. Some people in their twenties had been treated by both paediatric and adult cancer specialists and found them equally good at supporting and helping them. Young people when praising the care that they had received on the NHS said that they doubted that private medicine could do better.
He couldn't find a bad word to say against the NHS.
He couldn't find a bad word to say against the NHS.
Yeah, very much so. Since then I've been going to - or went to the adult side of it, since I've been older, a few years ago. He's great as well. He just tells you exactly what's going on. You know, he's very down to earth, they all are. I think the child consultants do break it down more, kind of explain it in really simple terms, but you do understand it, because when I was older I did know what was going on and you know what's going to happen, and they just explain everything really well, so'
But in your experience most of the health professionals treated you like a teenager? They talk to you?
Yeah, pretty good. Yeah, very good.
So do you think that is important?
Definitely, yeah. It's changed again since I've been going to the adult consultant. He just tells you straight off what's going on. That's good. You go in after your scan, "Right you're fine", Excellent, that's all you want to know.
So now mostly you have scans every three months?
Yeah either a scan or an x-ray every three months.
I'm looking at going away, abroad for longer, I was talking to my adult consultant, and he's so willing to help out, you know, that they'll contact doctors and hospitals in other countries, just so you can get away. They are so helpful. If you ever do have any questions or any queries, you know, just say, and they're as good as they can be. They really do try and help you, so it was great.
Mm, he is quite supportive.
Oh yeah, it couldn't be better. There's no - I couldn't say a bad word against the NHS at all, and you hear people slagging it off all the time, but from my experience it was just great. Even if you are private I can't imagine it would be better. I don't know if everyone gets that but I - you get your own room when you're having chemo, and what more could you want? [Laughs]. So, that's good.
Last reviewed December 2017.
Last updated June 2012.
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