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Hi there.

Last time I was talking about the new initiative in the UK of providing information for those with cancer in the form of tailored Information Prescriptions. (To read this post click here).

As promised, this time I am going to begin addressing the issues that are raised by this initiative. As with any new way of doing things, there are always advantages and disadvantages. These need to be weighed up and concerns addressed to ensure the best possible results from the new scheme.

So what are the concerns?

First there is the issue of how they will work in an appointment. How will the health professionals find the time to select the relevant pieces of information, when our health services are already stretched to breaking point? If they are sitting and going through information on a computer, will this lessen the human interaction which is vital to feeling confidence in your doctor (you may have experienced this issue in other situations, where sometimes receptionists seem more interested in their computer screen than in you)? Who will have time to go through the information with you to make sure you understand it and what it means for the person with cancer, and the rest of the family?

Secondly there is the issue of what happens next. I believe that although giving information is a good first step, it’s simply not enough. Information has an emotional impact (as you may notice if you have ever read the side effect warnings which come with most prescription drugs). With cancer this is particularly so. Often information is given slowly, to give time for all concerned to get used to it. But if the prognosis is not good (for instance), giving tailored information may reduce the possibility for hope. This in turn can lead to depression, which has been shown to worsen survival chances. So is there a possibility of too much information? These issues may be able to be addressed, but only by trained professionals having the time to spend with individuals exploring their concerns. This needs to happen all the time, not just if someone asks for that help.

Lastly there is the issue of privacy and confidentiality. There are many cases where someone with cancer chooses not to pass on all the information they have to others in the family. (I believe, though I don’t know for sure, that this was the case with my own mother.) But if someone has been handed a highly tailored set of information about their cancer, and a family member asks to read it, where is their option for keeping things to themselves then? It is all there in black and white and you know that what is there reflects how things are. As a family member you may think ‘Fantastic! I don’t want there to be any secrets.’ But do you have a right to that information? Should you have a right to know? This is like opening a can of worms, because there are many reasons why someone may choose to restrict the information they pass on. I’d love to know what you think. Have you experienced such a situation yourself? Let me know in the comments, and next time I’ll look into what the reasons are for this kind of secrecy, the effects it can have, and what should be done to address the issue.

See you then,
Anne

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I’m in the process of writing a booklet for our website. As part of that I’ve been asking people what are the first things they want to know when someone in their family is diagnosed with cancer. One thing I have noticed is how different people are in how much they want to know. I guess it comes down to personality.
Some people seem to want to know every detail about the illness, and treatments. They want to read up on the medical details. I think perhaps this serves two purposes – it gives them something to do, and it makes them feel a little more in control.
There are others, though, who just don’t want that kind of detail. They may want to know whether the person is likely to come through ok, or whether they will die. Or they might not even want to know that. They may just want to be optimistic and hope for the best.
So which approach is right? Or does it even matter? Well, I don’t think there is a ‘right’ approach, and it’s fine to work with your natural personality. But the first, and possibly the hardest, thing to accept is – you are not in control.
If someone else has cancer, they are the only one who has control over that illness – or at least their response to it. You can find out all the technical information you want about the illness, get statistics and projected time-frames. None of that will tell you whether they will get better, or how long they have left.
What you can do is to accept that what will be, will be. If the person who has cancer wants you to research lots of information, or it makes you feel better, by all means do that. Help them as much as you are able, if that’s what they want. Just accept that you are not getting facts about them, only generalisations.
A far better focus, I think, is communication. A good relationship where you can talk about anything and everything will give you much more information about the person – who is after all much more important than the disease.
I would love to hear about your experience and your thoughts. What happened when your friend or family member was diagnosed? How much information did you seek out? Did it help? Please share your thoughts and comments.

Best wishes,
Anne x

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