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About Jane's brain tumour journey: Astrocytoma.co.uk

Recording consultations with your doctor should be welcomed

22 May 2014

On the forum of the British Medical Journal website, there is a discussion about the right a patient has or does not have to make recordings of their consultations. It is interesting to read the responses. Interesting and disappointing because too many contributors have a defensive attitude and wonder why a patient would want to record. They suggest patients might use the recordings against them later or want to record them just to catch them out. Surely they can simply take notes as a record of the conversations.  It does not seem to occur to these posters that even note-taking means patients only write down what they THINK they have heard and understood. Just because they write it down does not mean they write down the right thing.
Patients are not adversaries. They are partners in their own treatment. Why the hostility? Do doctors forget that patients might need to listen to their words a couple of times, perhaps with a dictionary at hand, to fully understand what they have been told? (This study demonstrated that patients forget between 40-80% of what they are told and that even the things they do remember is often inaccurate!!)

I do not see why doctors would have an issue with this. It happens so often that, especially in Bad News Conversations, patients only hear half of what is said and forget the rest. This can lead to a lot more problems later when patients might claim they were never told something or where they have misinterpreted what the doctor said. As a nursing student who has extensive experience as a Health Care Assistant in End of Life care, it happens far too often that nurses are asked by patients to repeat and explain what the consultant has just told them.

Doctor says: "This treatment is palliative but we should be able to stop the tumour from growing further."

Patient hears and writes down: Treatment will stop tumour.

For most lay-people, this will read as: this treatment will stop the tumour from growing which means it will kill the tumour which means this treatment might actually rid me of this tumour.

Doctors might think that is a silly thing to conclude and that they were surely VERY clear in not saying the treatment was curative. But how much do we expect patients to know about treatments? Curative? Palliative? Health Care Professionals (HCP) should ALWAYS assume (in a non-patronising way!!) that the patient has not understood what they have said and ask them to repeat in their own words what you have told them. I also think that every consultation should start with a recap from the last one by asking the patient to explain in their own words what they remember form the previous consultation. So that when you build on what you THINK was understood, you don't simply go further down a path of total misunderstanding.
If we care about our patients, surely the worst thing we could do is send them in to a treatment they think will cure them when in fact, they might endure terrible side effects for something that won't?

I simply do not see the problem in people making audio recordings of the conversations. For the life of me, I cannot imagine what it is that you could be saying as a HCP to a patient that you do not wish them to be able to hear again? It is not like medical notes where the communication is aimed at other HCPs. There indeed might be things you would prefer a patient not to see (although you should always be mindful that patients might request to see their notes!).

If your first response is: Why should a patient want to record me talking? Then your focus is not on the patient but on yourself. If a patient wants to record your conversation, it might be because last time you spoke, they did not understand. Or last time you spoke, they had so many questions. Or last time you spoke, there was too much information for them to write down. Or last time you spoke, the news was so bad, they were unable to take it in. In all these cases, it is up to the HCP to improve our communication skills and ensure the patient leaves with a full understanding of what has been discussed.

Remember that in a HCP - Patient relationship, the HCP ALWAYS has the advantage of knowing more. Patients feel this. They know they will only ever know what you tell them. You decide what they get to know so the least you can do is to allow the patient to actually understand the things you let them know. It is up to you to make sure they fully understand. And if it helps a patient to understand you better if they can record the conversation and go over it again at their own leisure, then so be it. Better informed patients leads to better health outcomes.

From personal experience, my wife had a brain tumour and the Neuro Oncologist was going to explain all the treatment options and prognosis and so on. I asked politely if I could record the conversation (just sound) so we could listen again at home afterwards to make sure we were able to take it all in (my wife was no longer of the mental capacity to take things in so it was all down to me to listen and remember). He refused in a less than polite way. The news was terrible and after the words "palliative radiotherapy" we heard nothing else that was said. I tried to take notes but my brain was numb. Over the next few months, the consultant kept saying that things had been discussed in this particular meeting but I had no recollection of it. We thought there might still be chance of a cure. When it was over, the MRI scans revealed there had never really been that chance. I must have misunderstood him when he spoke to us. But I have no way of checking that. I was devastated. This could have been avoided had I recorded the conversation. Then I would have understood and remembered.

I am not saying he was lying. All I am saying is that consultants should be aware of how patients interpret what they say and how a recording can help clarify things. The arrogant refusal of consultants to let patients record conversations shows a lack of patient-centred care. The first thought should not be: they might use it against me. It should be: It might help the patient to understand me better so we can come to a more collaborative treatment.

Why not record the conversation and let both parties have a copy for their records? This safeguards against patient editing the recordings and making false claims.

I hate to say this but could this be an example of the difference between the focus of medical education and nursing education? Between the Medical Model and the Holistic Model? Just throwing it out there....

P.S. Legally, patients are allowed to record their consultations. However, if you can not be open about it to your doctor and need to do it on the sly, you may want to reconsider your relationship with your doctor...
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Charity trips to Fiji? Patronising rubbish.

16 May 2014

In the foyer of the library at University today, I spotted a young lady who was selling cupcakes. Would I buy one. "It's for charity", she added, looking at me hopefully.

Charity? I see. I asked her what she was going to do. "Teach English to children in a village in Fiji and help them build water tanks and paint their school building." No, she wasn't a qualified English teacher, although she did of course have her GCSEs and stuff. Her face fell when I asked her what, then, made her qualified to teach English to other children? She had no answer.

I continued to ask questions about what she would be doing there. After all, she was asking for my money to support her work. I would be happy to give her cash if I agreed with what she was going to do. She said she would be building water tanks so the village had clean water. No, the money raised for not for her because she had already paid for her ticket. The money she was raising was going to the charity.

I suddenly felt really annoyed with her lack of honesty. Because the bottom of her fundraising paper had an official message from the organiser of the whole thing, Volunteer Eco Students Abroad (VESA). It said that the money the volunteer was raising was NOT going to the charity but would be used by the volunteer to fund the cost of their program. I asked the girl again what the money was for. She said the whole thing costs £1200 + flights. She had paid for her flight and was fundraising for the £1200. I countered therefore that the money was not going to charity but it was going to her own pocket to help her pay for this trip. Again, she got flustered. The money was needed by the charity in advance so they could buy equipment to help them teach and build water tanks and so on.

Having sufficiently upset her, I bought a cupcake. Not because I support her 'charity work', but because I felt sorry for her. She was clearly upset by my questioning.

But why should she be upset? Shouldn't people think about what it is they are going to do on these trips? How patronising is it to think that a young person with no experience is not good enough to teach kids in the West, but perfectly fine to teach kids in poor countries? Furthermore, after she is done teaching for a week and leaves, who will continue teaching these children? A real teacher? In which case she was never needed there. Or yet another young person on a very expensive trip who is looking to feel good about themselves by helping 'poor people'? How does that in any way secure a quality education for the children there? Not to mention the question if learning English is the most important thing for children in a very remote village. Some of these village are so remote that they are only reachable by kayak so not much chance of them needing English, other than to be able to speak to those lovely gullible White People who come to have an Authentic Experience.....Building classrooms is very nice. But I feel uneasy about pictures of children sitting at desks that carry the name of the charity organisation. God forbid they ever forget how they got so lucky to even have these desks. Surely the point of charity is that you do it with no strings attached. Not even the requirement to let everyone else know that it was YOU who was so incredibly generous? It was all very annoying that the girl was clearly unprepared for anyone questioning her thoughts behind the whole thing. So convinced was she that surely all charity is good.

But most importantly, she failed to mention (in fact she blatantly lied about it), that the trip would be 5 days of 'charity work' and then 7 days of sailing around the Pacific coral reefs, learning to scuba dive and lie on pristine white beaches. I am quite sure THAT is what the £1200 is for. Not to buy materials for a water tank in a remote village in Fiji.

Now I don't mind being asked to pay for someone's holiday. I think it is quite daring to do that. But at least have the decency to be honest about it.
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International Nurses' Day 2014 (and a drag queen at Eurovision)

12 May 2014

Congratulations to me. Today is International Nurses' Day. A day to celebrate all the good things nurses do. And since I am nearly a nurse, i am going to pat myself on the back already.

I am currently stressed out of my little skull trying to produce a 5000-word literature review on a public health topic. My topic has gone through various incarnations:

1) Are lesbians at increased risk of breast cancer and should they be more aware of this?
2) What are attitudes towards sexually transmitted infections among women who have sex with women and how can this group be reached with public health campaigns
3) Sexually transmitted diseases: women's risk perceptions and how this leads to behaviour modification.

Currently I am settling for "Sexually Transmitted Infections in the over-45s: why are they on the rise and why does the Safe Sex message not reach this group."

Hopefully I can write something that can at least be handed in before the deadline. I am at that time of the year where I am less and less interested in the quality of the work and more and more in just passing the year. This saddens me but I realise this is normal in any student and I guess nursing students are no different. Since March, I have been working full time at my placement. It finishes the first week of June. That same week we are due a 5000-word literature review and a group health care debate about assisted dying (in the style of the Cambridge Debating Society). 10 days later, we are due to hand in a 2000-word care plan. Not sure why this all had to be done at the same time as working full time at placement but it certainly is stressful. Apparently it is related to the structure of the academic year and the fact that a nursing degree is 45 weeks per year whereas most other degrees are only 32 weeks and we have to fit in with the regular examination board's time tables.

Oh well, it focuses the mind I guess. Never to early to get used to the stress we will be under once we actually qualify ;-)

On the positive side, today  got news that I have been selected to be a Care Maker! What is a Care Maker I hear you ask. Well, let me explain. As part of the drive to improve patient care, the NHS and universities are pushing hard to make sure all health care professionals adhere to The 6Cs in patient care. These are:


In order to push these values forward, a few thousand 6C Ambassadors have been recruited. These Care Makers will attend conferences and spread the message about the 6Cs. They will, hopefully, demonstrate to other people how easy it is to implement these core values of good care in every day practice. For more information about the Care Makers and the 6Cs, have a look at the Care Makers website. I am proud to have been chosen as a Care Maker (and happy that I shall get a nice new hoody and a t-shirt. Free clothes are always good for a student!).

And on a totally unrelated note.....can I just say how AWESOME this year's Eurovision Song Contest was. As a Dutch lady, I am of course very proud of the fantastic Common Linnets with their gorgeous country song Calm after the Storm. I am currently listening to their entire album and it is bloody amazing. Americana from Holland that can compete with anything Nashville can churn out.

Oh yeah, and there was also someone with a beard I think. Can't remember what that was all about. Something with a Bond-theme song or something.

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