Finding information when you have a terminal illness

Uncertainty is common in medicine. People who have a serious illness sometimes wonder why they are not told how long they have to live, but others know that doctors cannot predict what will happen. Some people we talked to said they did not want to know specifically how long they had left to live.

He doesn’t want to know exactly how many years he has left to live.

Age at interview 66

Gender Male

Age at diagnosis 66

View profile

Well I haven’t asked them specifically how many years I could expect and I’m not ducking that question but, do you know, I believe in adopting a very positive approach to the whole thing. And I don’t really need to be told that it’s one or two years. I don’t think I would welcome that, you know. To know that, at the most, it may be five years downstream doesn’t bother me a great deal but on the other hand, when I say it doesn’t bother me I mean it does, theres no doubt about that. We all want to go on living as long as possible, but I can accept that, and I believe my family can but I’m not too sure I want to be told that it’s a year away;

As Im saying this to you I’m not too certain actually whether it would bother me or not. I just haven’t asked him, you know. I recognise the time will come when somebody will be saying to me, ‘ Well we can’t really do anything for you now’, and I’ll have to start thinking about ‘Well am I going to stay at home or am I going to go into a hospice?’ well when that time comes I’m pretty confident I can deal with that and cope with it okay. But I guess what it comes down to is I don’t want to talk in those terms until I’ve got to.

Embed Print Transcript

Apart from the prognosis, patients have many other information needs and use a wide range of information sources, including books, leaflets and newspapers, support groups, telephone help lines, cancer information centres, lectures, other patients, the local hospice, national associations concerned with a particular illness, and charities (see resources for more information).

John Diamond’s book ‘Because Cowards get cancer too’ helped and inspired her.

Age at interview 51

Gender Female

Age at diagnosis 49

View profile

What about other information that you think people in your situation will need?

I think finding out a lot about the disease… I did do a lot of reading up about cancer and breast cancer last year. And also one thing I did find very useful was John Diamond’s book. I can’t think what that was called now but it was excellent because he writes it from personal experience about the shock that we were talking about before and what it’s like, having cancer and it spoke a lot to me.

What kind of questions did you have in mind then?

Um, specifically for that book do you mean?

That made you read that.

Well what it was going to be like and I still wonder because I don’t know because every case is different and it depends where the cancer ends up growing, how it affects you and you can’t tell. But it was an experience that I know sometime I’m going to go through and it was quite, in the early days, sort of the beginning of last year that I read that book that I found it very helpful because he carried on living and writing his column and even though it was to do with the cancer, which… you are very involved with your cancer – it is a major part of your life after all;;

Embed Print Transcript

She questions health professionals and patients about their opinions on treatments.

Age at interview 50

Gender Female

Age at diagnosis 42

View profile

I am a great believer in asking questions and I will ask the same question of different people – the same question, to see, you know, what different peoples opinions are. ‘Cos a lot of the time, things like you know, treatments for breast cancer or, the other things, a lot of it is scientifically proven and all that, but a lot of it is ‘this worked for me, that sort of thing;

And I think, different doctors and health professionals have had different experiences, they’ve all got something different to offer. But I do ask a lot of questions, I’ve always asked questions. I ask other patients questions as well, because again, sometimes they have got information that the doctors haven’t got, like side effects.

Embed Print Transcript

He and his doctor learnt a lot from information from the national association for multiple…

Age at interview 70

Gender Male

Age at diagnosis 68

View profile

The most information I had was from the National Association of MS [Multiple Sclerosis] in London. They, I rang them up, you know, you can ring them up anytime day or night, and I rang up and they put me through to their person who gives us this information and they sent me a pile like that, full of information;

A lot of it way over my head because I’m not a doctor, I’m not even a nurse but I mean I was responsible for nursing. As I say a pile like that, and also a book which I gave to my doctor, describing MS… and I got that book through the National Society, it wasn’t very expensive. I read it and I thought. And I learned an awful lot from it;

I then passed it on to my doctor who grabbed it quickly and said, ‘Oh this is interesting. And he spent all of that night reading it and I asked him, a long time ago now, and I said. “Did you get anything from that book?” ‘Oh yes. He said, ‘I know more about MS now than I ever knew before, because it broke it down into layman’s language”;

So I think information is vital because the more information you get and the more knowledge you have as a patient, the more you know that you don’t have to be frightened of it. You don’t have to be frightened of it.

Embed Print Transcript

Many people we talked to were keen to know as much as possible about their illness and the treatment options, to contact other patients, and to identify ‘sensible questions’ to ask their doctors. Several recommended preparing a list of questions before an appointment and taking a partner or friend to help them remember and interpret what the doctor had to say.

Although many excellent leaflets and booklets exist, people sometimes said that the stock had run out and they left the clinic empty-handed. Some people complained that their doctors had not given them enough information, or did not allow enough time. A man with a brain tumour thought that his doctors ought to have spent more time explaining what was wrong, and a man with prostate cancer said that he had to fight to get information, particularly about his prognosis.

He wishes the doctors had spent more time explaining what was wrong.

Age at interview 32

Gender Male

Age at diagnosis 31

View profile

Well, first of all, being told that I had a small lesion. “It’s nothing. It don’t matter, don’t matter”. Well obviously it does because seven months down the line, I then got told I’ve got terminal cancer;

So that small lesion at the beginning is something and it was something then and I wasn’t being told. Okay, they couldn’t tell me there and then what it was, they had to wait for it to grow; fine, let it grow, and then it was, when I was told I had the cancer, and what tumour I had, which is a very rare adult cancer, when I asked what it was about, I was basically, it was blinkered by the doctor and I had then to then ask my nurse what it was, and who, unfortunately, doesn’t know a great deal because shes new to the area of what’s covered;

So shes trying her best to find out and do her best to know what sort of tumour were dealing with, where the doctor could have really told me straightaway, in that he deals with them. And you know, it’s fairer. I think if they were just to take five more minutes out, just to say, ‘This is what you’ve got. This is what it does, and this is what we expect to happen’; and I think that’s fairer than to just not tell you anything at all;

Embed Print Transcript

A woman who wanted to take an active part in her care said that she was satisfied with the information she found (via the internet), but thought that her medical team should have provided more. She said ‘information is power’.

She says that information is important because it allows her to work with her medical team.

Age at interview 50

Gender Female

Age at diagnosis 48

View profile

I’m working in partnership with a team rather than being passive patient if you like and feeling, feeling that you can only have things done to you, rather than being part of the decision making process and full, fully informed, which we did very much feel when I went and had the liver section.

So it’s all a waiting game, you have to wait again for scan tomorrow and then the results and, you know, it could well be that you get recurrences, that have moved on anyway without knowing, but weve gone, jumped from sort of 3% survival at 5 years up to 40% survival at 5 years, and you know, it’s a it’s taught me that it’s not so much what is said today about your condition, there are things happening all the time, there are developments going on all the time and things change all the time and it’s keeping yourself abreast of those developments and making, making choices based on your information.

Information is power and I mean it can be that, you’re asking yourself to do those sort of things, find out those sort of things at your most vulnerable and most weakest time in your life and a time that you’re sort of absolutely strung out in fear and foreboding but it can help so much I think because you know it does give you a feeling of, of autonomy to some degree and it’s making those choices. I know that’s not possible for everybody and I think that’s what this sort of project is so valuable for, cause it is important to have [laughs].

Embed Print Transcript

Others pointed out that, contrary to some people’s fears, finding more information often stops people from feeling frightened.

The internet was a great source of help. People described finding valuable information about symptoms, treatments, drug trials, complementary therapies, and support groups. After checking an internet site one woman realised that her husband had symptoms of mesothelioma (lung cancer caused by exposure to asbestos). Another identified a surgeon who could perform an operation she needed. One man even looked at a video, on a hospital website, of the procedure he was going to have.

He thinks that the best source of information is the internet.

Age at interview 32

Gender Male

Age at diagnosis 31

View profile

Yes, the internet’s the main source of information I’ve looked on and it gives me so much information out. It is like probably the best place to look anything up because if you can’t find it on there you can guarantee you ain’t going to find it anywhere else. It’s definitely the main source of information, I think.

How can you decide what information is reliable and what might not be that reliable?

Talking to the nurses and that. They generally know who’s reliable, what sources are good and what sources are bad, really. They generally get their information off the internet, a lot of their information. They know that they’ve got the internet and worked on so, and the Cancerbackup is actually run by nurses so they know what they are talking about, really, at the end of the day.

Embed Print Transcript

His wife recalls how she learnt about the symptoms of mesothelioma on the internet.

Age at interview 54

Gender Male

Age at diagnosis 53

View profile

Yes, I’ve been looking at the internet since he went into hospital. They said that they hadn’t found any mesothelioma cells in the fluid that they drained from his chest. So I picked up on that word, well that’s just the kind of person I am, so I put that in on the search engine.

You mean the fluid bit?

No, I put in ‘mesothelioma’ because I’d never heard of it before and I really didn’t even know how to spell it. So when you’re on the search engine it corrects your spelling. It says, ‘Do you mean?’ Doesn’t it?

Yes, that’s right

And so of course it came up and that was when I actually saw all the sort of horrid details about how it was and it actually gave the symptoms. And so when I looked down the symptoms, it said about a croaky voice. It said about backache, things that my husband had had problems with. He had all the symptoms so of course my immediate reaction was that I just felt physically ill and shut it all down, but that was actually on the cancer site, on the BACUP site so it was, was the proper site, yes. And of course then when I went back into hospital and they were asking my husband more questions I was able to say then, ‘Have you mentioned your croaky voice? Have you mentioned your backache?;

Because my husband had been going to the doctor about his backache for a couple of years, and had X-rays, and they couldn’t find anything. And that is one of the symptoms. His croaky voice had been put down to asthma, which we now think was probably part of the mesothelioma, you know, one of the symptoms because it can manifest itself several years before;
An; so my husband had been going to asthma clinic and when I told him to say about his croaky voice they thought it was the steroids in the inhalers that had caused his croaky voice and to use a mouthwash and that. But when you look down the symptoms my husband had, I was able to say, ‘Have you said ?’ this and that. So of course it helps them;

Embed Print Transcript

He uses the internet to find information, especially hospital sites, where he found a video of a…

Age at interview 52

Gender Male

Age at diagnosis 37

View profile

I have a broadband internet connection and I’m very good with computers. I was given, I think it was a compliment, somebody said that I have a computer brain of an eighteen-year-old so I suppose that was a compliment. When I open a computer manual I don’t have to follow the first instruction which says first find a twelve-year-old. So I use the net a hell of a lot and theres a lot of information out there;

I have to, in the next two to three weeks or so have a tube put into my bladder via my belly button which is called a supra-pubic catheter and that will solve some of my bladder problems so I went on the net and I dug up all the things about it and read it so that I know what I’m in for, I know what’s going to happen and how it’s going to happen and I actually saw the procedure in streaming video on the internet so I know what’s involved.

Do you think that’s a good and reliable source of information?

Some of the hospital sites, especially the American ones are very, very good. I don’t go to sites where it’s peoples opinions. I normally go to the hospital site, first you put in the name of what you’re looking for and then you get a whole list of sites and normally I go to the hospital sites and read what the consultants have said or the senior physicians in America have said and go from there;

I don’t go for the opinion sites. I don’t go for the chat groups because basically you don’t know who you’re talking to;
You can be talking to someone that says I am a doctor of eighteen years experience and in fact you’re talking to a seventeen-year-old junkie who’s on a trip, you know.

So you couldn’t really trust…

I don’t trust, I don’t trust chat groups, I don’t trust reading other peoples experiences, I want to read what the hospitals themselves actually put out.

Embed Print Transcript

People were wary of unreliable information, and had developed various tactics to avoid it. One man said that he often ended up throwing books away if they were ‘rubbish’ while others said they used ‘common sense’ to ‘sift out’ reliable information from ‘sensational material’. Some avoided sites run by private doctors or drug companies, compared information from several sources to judge its reliability, discussed the information they found with their doctors and nurses, or asked them to recommend reliable internet sites.

A few people were reluctant to use the internet without guidance because they had previously been scared by what they had found, feared that they would find frightening information, or were worried about the cost of spending time on internet chat rooms. Some organisations such as Maggie centres will help with internet searches and interpretation of the information found. Some felt too ill to use the internet, or had not learned to use computers, although it was pointed out that it is easy to learn if you are shown. Friends and relatives often downloaded information on the person’s behalf – one man described how his wife would ‘filter’ internet information before showing it to him.

Many people were pleased (and sometimes surprised) to discover that doctors seem to be getting better at dealing with questions – a development some attributed to patients becoming more informed. Some were impressed that they could pick up the phone any day and call the hospital for advice.

He suggests that doctors and nurses are now more willing to explain things than they were in the…

Age at interview 66

Gender Male

Age at diagnosis 66

View profile

Yes, well my main sources are from the medical people of course, whether it’s my GP or a consultant that I’ve seen, and before I go and see anybody like that I write down, that’s important to stress that, write down a list of questions and points I want to raise with him and make sure that they answer those questions;

One of the things I’ve found that whoever you’re talking to, whether it’s a GP, a consultant or nurse, they’re very willing to explain things. I think that’s a big change, well we touched on this earlier before we started this interview, that’s a big change that’s come about in recent years. The medical profession realises that it is good, if the person wants it, to be as open as possible.

Embed Print Transcript

Information needs fluctuate in the course of an illness and cannot easily be predicted. One man suggested that there should be a named person who could deal with questions as they arise to ‘keep the information flowing’. He thought this was particularly important for those who can’t use the internet or might not understand the medical terms that inevitably creep in. Since these interviews there has been an increase in the number of specialist nurses available for most health conditions and this helps to provide patients with a valuable link to information and the resources available.

Suggests that there should be a named person who could help obtain information.

Age at interview 66

Gender Male

Age at diagnosis 66

View profile

It’s also helpful to have a mentor or a help person in that you find that so many people are involved in your illness;
Theres the GP, theres the cancer specialist – in my case there is a gastroenterology specialist, theres the district nurse, theres the nutritionist, theres the dietitian, all feeding you information;

If you’re lucky and they approach you, or you know how to go out and contact them, but there are lots of people don’t know how to do that, and so that’s once again why I think this mentor would come in. Somebody who knows about all the contacts and could point a sick person in the right direction if they haven’t already been contacted.

Well unavoidably there are medical terms used in the fact sheets and I’m sure with many people it would be helpful to be able to discuss that with somebody and get more information. Another point about this, I know when you’re seeing a consultant you can ask these questions but they’re very busy people. They’re very specialised and I find they’re very helpful. They are willing to give me their time but I’m conscious of the fact that they are busy;

I don’t like to think I’m wasting their time. I do put my questions, but it doesn’t have to be a specialist, it could be a mentor who could get the information for you, maybe by reading it. They do have medical backgrounds and they could discuss it with you.

Embed Print Transcript