A-Z

Caring for someone with a terminal illness

Finding information

Most of the people we interviewed knew little or nothing about the disease or what would be needed in terms of caring. Carers wanted information at different stages of the illness, about the illness itself and what to expect, and about what help might be available to them. While some felt they had been given sufficient information, many felt they needed more and sought it out for themselves from a variety of sources. (see ‘Hearing the diagnosis and coming to terms with the prognosis’).Where it took a long time to get a diagnosis, this ‘not knowing’ could be quite frightening and some carers looked for information to try to understand what was happening. Some searched the internet or medical books, others asked advice of health professionals they worked with or knew socially.

 

Jane had already worked out that the diagnosis was motor neurone disease from information she...

Jane had already worked out that the diagnosis was motor neurone disease from information she...

Age at interview: 44
Sex: Female
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I knew that you don’t get, you know, I’ve worked in the NHS since I was nineteen, you don’t get called back lightly the following day by the consultant, who’s had a cancellation. So, so when we were called back I knew it was really serious and, at that point, we had a quite a long consultation with him and he told us that he’d got neurodegenerative disease and I said to him, “Is it motor neurone disease?” And he said, “No, it’s not.” Despite the fact that he was taking blood for something called a SOD1 test, which is a gene which is related to motor neurone disease, which I didn’t realise at the time and I skipped across the car park to get the car thinking, “Okay. I can cope with anything as long as it’s not motor neurone disease, I can cope with it.”

And then I realised that he’d had blood taken for a SOD1 test and I looked SOD1 up on the internet, as anybody would, and it said it’s a gene related to motor neurone disease, so at that point, I realised that actually he had lied to us and I think for, you know, because he was trying to protect us, but he hadn’t told us the truth. And so at that point, I realised that actually, that was a possibility of what we were looking, and, and so we then had to wait four months from that initial appointment until the end of November to be seen again, at which point George was really quite disabled and needed a wheelchair to get from the car to the, to get from the car into the appointment because it was too far for him to walk because he was getting quite tired. And we knew it was something really serious and, actually, I knew that he’d got motor neurone disease. I’d diagnosed it from the internet. I’d been on the motor neurone disease association website and knew the type of motor neurone disease that he had and I’d got into my sister’s car, who’s also a nurse, I got into her car one day in October and said, “I know what George has, I know what George has got.” And she said, “So do I.” And we’d both, independently, diagnosed the same thing.
 


At the time of diagnosis some patients and carers were given leaflets about the condition while others were not. Some hadn’t understood all the terminology used by the doctors so looked up words on the internet.
 

Saba did not fully understand her mother’s diagnosis until she looked up certain medical words on...

Saba did not fully understand her mother’s diagnosis until she looked up certain medical words on...

Age at interview: 45
Sex: Female
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At that time I had absolutely no exposure to cancer. Knew nothing about the implications of cancer, you know, things you hear, hear about, so it’s a shock when you’re sort of faced with it. Had no information. Went on the Internet to find out exactly what metastases were. I just saw the word ‘primary’ and just automatically assumed well maybe these are the early stages of cancer, because I’d seen, you know, you sort of zone in on certain words, and heard of many cases, you know, where people had been diagnosed with cancer at an early stage and with all the technology and all the medicine at this stage, you know, I wasn’t … I felt quite positive.

I had a look at it on the internet and I had, I had a friend who had a friend of a friend, who was an oncologist and I’d sort of called her. But when I look at it on the internet I just saw ‘metastases’ and realised that actually we’re talking about final stages of cancer. That when the cells metastases, they go through blood stream and end up basically in the liver. And at that time it’s like you just don’t want to accept that. How, how did we get from there to here so quickly with nothing in between and no consultation?
 


Once the diagnosis was established some felt they had sufficient information from their hospital doctors or their GP and did not look for more. Carers often picked up information when they attended hospital or GP appointments with the patient. While some felt included in the consultation and were happy to ask questions, others felt they were bystanders and there was no time for them to ask questions. Several carers felt they did not have sufficient knowledge to know what questions to ask.
 

Brian gleans information from accompanying his wife to hospital appointments; at first he felt...

Brian gleans information from accompanying his wife to hospital appointments; at first he felt...

Age at interview: 69
Sex: Male
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So I pick up all the information from the people that that we get at the hospital and they to, tend to give me information now. They used to sort of, at one stage, I thought I was just sitting there as, as a person that was just carrying Linda into the room to speak to them but it’s now got to the point that when they speak to Linda they actually, speak to me as well.

So you’re included.

Yes.

Does that feel better?

It does now but, of course, there’s a lot of the medical talk that I still don’t know or understand and even when Linda gets back she’ll, she’ll have the sheet of paper and she’ll look up some of the words they’re talking about. But they will explain it to her now if she asks them, which is a good thing.

Because, as you know, in the medical world some of the really long words, nobody actually knows what they mean because it’s like a mystery.

Yeah.

So it’s, it’s good in that sense that you do get some feedback now from the doctors and the oncologists and they don’t look upon you now as a sort of irritant being there and making sure that they don’t, you know, do their job correctly. Which I think they’re more relaxed and I think that helps.
 


Many carers felt they had not been given enough information, particularly about what to expect as the illness progressed. They therefore tried to find out more for themselves from a variety of sources. These included GPs or other health professionals who visited the sick person, friends or colleagues who were health professionals, other carers they met through joining support organisations or committees, picking up leaflets at hospital support centres or day centres, or searching the internet. One person attended a talk at the hospital.
 

Victoria couldn’t find any information about how her husband would be affected by his rare cancer...

Victoria couldn’t find any information about how her husband would be affected by his rare cancer...

Age at interview: 71
Sex: Female
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What I’ve been doing all winter has been researching mesothelioma because I was given a leaflet about it or a book booklet with information for people with mesothelioma and their carers but it didn’t give me very much information, it was very minimal and none of the doctors that that we actually did talk to ever told us very much about it. And whether they didn’t want you to know what was going to happen next or whether it was horrific and they didn’t want to tell you, we really don’t know much about what the next stage is. And I have been reading all that I can find and it’s mostly American sites and I’ve been watching videos of doctors giving talks, now I don’t understand a lot of the medical terms but I’m picking them up and I’ve been doing my best to learn as much about it as I can and I do think there is not enough told about it. I mean to say, when I speak to people and tell them my husband’s got mesothelioma they’ve never heard tell of the word. I had never heard tell of the word until the doctor wrote it; I got him to write it down for me. And there’s nothing known about it. None of my friends know anything about it and my family don’t know anything about it. The only one that knew about it was my daughter-in-law and the reason she knew about was because she’s a physio, she works in the Health Service and she knew the word.

And, so it’s difficult to know where to find out anything more about it. The leaflets or the booklets don’t tell you an awful lot, even the mesothelioma site doesn’t tell you an awful lot and there they’re all telling you about treatment and drugs and chemotherapy and radiotherapy. Nobody tells you what to expect if you’re not having any treatment. So that’s why the support from the Marie Curie is very helpful and I do think if I ask there they may tell me you know what to expect next and because I did ask and she did, the nurse did say, well, I said, “What, what do you think is going to happen next?” and this “I know it’s growing” and she said, “Well he will lose weight, you know and his appetite mightn’t be so good” and that is happening. Alright it’s not very fast pace at the minute but you know I just don’t know, you know, will it affect I don’t know whether it’s going to affect his heart, affect his, will his breathing get worse, will he need oxygen? I don’t know anything like that.

And sometimes my husband says “Will I be gasping for breath?” But we don’t know and nobody knows and again I suppose everybody’s different and maybe he’ll not. I don’t know. But that’s, you’re just left in the dark, that’s the way I see it.
 


Many of those who used the internet found useful websites about treatments and support organisations. For some the internet became a regular source of information as the disease progressed and different drugs and treatments were administered. A few carers sought information about clinical trials or complementary therapies that might assist the patient. But others struggled to find out what they wanted to know, in particular about how the disease would affect their friend or relative, saying that the information was not specific enough to their situation. Looking on the internet can be daunting as there is so much information, not all of which is reliable, and some information can be frightening.
 

Lesley and her husband David used the internet to find out what his diagnosis of multiple myeloma...

Lesley and her husband David used the internet to find out what his diagnosis of multiple myeloma...

Age at interview: 66
Sex: Female
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Yes, in two thousand and three, February, we had actually, sold our other house and were about to move in to this house when he was diagnosed with multiple myeloma and he went on his own to see the doctor. So I found out about it second hand really. I didn’t understand it and neither did he, so we went on the web together to look up what it was and what it entailed and what needed to happen. And, in the end, we really had to go to the American site to find out about it properly because the support group wasn’t actually up and running as efficiently as it is now eight years later. And we discovered that luckily, I think, he was what is known as smouldering so there was a lot of angst. There was quite a few tears. There was a total unknown blank future because we were in a new house that needed loads of work doing to it. It was a tumble down shell really and we were, what were we facing? We didn’t know what we were facing. I didn’t know what I was facing. I didn’t know what the prognosis was. 

 

Henry was so shocked to discover the prognosis of his partner’s cancer on the internet that he...

Henry was so shocked to discover the prognosis of his partner’s cancer on the internet that he...

Age at interview: 63
Sex: Male
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We, when we were told that Jane had bowel cancer I knew nothing about bowel cancer at all. I mean I’m, it meant nothing to me. I didn’t know where it was in the range of cancers or anything. And I went on the internet and was absolutely shocked to discover that sort of, there was a sort of fifty per cent chance of dying within the first five years. I just couldn’t believe it. And, I never went on the internet again in connection with the illness. Jane’s eldest son had this, exactly the same experience. He was shocked, because we all thought Jane was, you know, immortal, you know, sort of couldn’t believe that she had anything wrong with her. And so it was a question of how much you want to know.  

 

Peter looked on the internet and found a vast array of information, which he suggests should be...

Peter looked on the internet and found a vast array of information, which he suggests should be...

Age at interview: 62
Sex: Male
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Well the internet’s a Pandora’s box, isn’t it? I mean you could, you could, you could get anything or nothing from it. I mean the, the descriptions that other people put down vary hugely. The association of particular diseases with particular symptoms, I mean this is, this is why you need the professional. This is why the health service is there. I mean the internet’s fine but you could go down so many rabbit holes and you could, you could get false hope or you could, have your hopes dashed by reading things. It’s not specific enough, particularly in this case, which is such a rare case, that it just doesn’t fit. So you can’t, but yes I mean in a sense that one Googles this and Googles that. It’s, the internet’s terrific but it doesn’t tell you very much. I learned a lot more about motor neurone disease, and I learned a lot more about physiology and I learned a lot more about the National Health Service, in the course of eight months. 


People vary in how much information they feel they need, and in our interviews there was sometimes a mismatch between how much the patient wanted to know and the carer’s information needs. While some carers sought out as much information as possible to gain a sense of control over their situation or to help them to cope, others felt that they should be guided by what the patient they were caring for wanted to know; and that it was important to let the patient be in charge of the information. Some patients wanted lots of information and became experts in their condition, whereas others wanted little or no information, which could mean the carer putting their own needs to one side. Dick wanted only the basic information about his wife’s illness in order to maintain their normal relationship and avoid regarding her as a patient. David (Interview 08) helped his mother to care for his sick father, but he felt his parents withheld information to protect him from the full knowledge of his father’s condition. He and others learned things later that they hadn’t known at the time.
 

Jane wanted lots of information to feel in control of her caring situation, whereas her husband...

Jane wanted lots of information to feel in control of her caring situation, whereas her husband...

Age at interview: 44
Sex: Female
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The, information was really important to me. I absolutely voraciously needed information, I needed information to be in control. And I think that knowledge to me, knowledge was power and, and as long as I knew what was going on I could be in control of it. George looked, went onto the MND website, took one look at the information and it scared the pants off him and he said, “Jane, I’m not going to, I can’t read this. I don’t need to know.” And relied, I think, on me to, with my nursing background and actually, and I could professionalise it so it kind of made it more comfortable for me. And so I think that was that was his way of dealing with it and it was very interesting to be two of us in a relationship and, actually, one of us to be the one who needed loads and loads and loads of information and the other one not to not to want any information or to want very little information just to know as it happened, kind of things were and actually, yes this is the next step.  

 

John chose not to seek out extra information so that he was never in the position of withholding...

John chose not to seek out extra information so that he was never in the position of withholding...

Age at interview: 57
Sex: Male
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Thereafter, what happened was that we took our lead and the clinicians took their lead from Tim in terms of how much he wanted to know. Now, his view was that he wanted to be very, very clear about the treatment that was right for him, to be absolutely clear about what needed to be done, what he needed to do because he wanted to, you know, to look after himself as much as he could in terms of, you know, taking pills and oral treatment etcetera. But he didn’t want to sort of know all the ins and outs and [Name] and I sort of talked about this on our own early on and we decided that we would respect that. What we didn’t want to do was get into a situation where we knew a lot more than he did and we were then faced with, you know, the dilemma, “Do we tell him?” When he wanted to know, you know, if he was asking questions, then it was absolutely, you know, right, we felt, to talk about it and to find out to get answers. And, you know, doctors were then very helpful but what we didn’t do was, was try and put any pressure on him to want to know more than he wanted to wanted to know.

After he died you know, I got very involved we got very involved in fundraising. I got very involved with Leukaemia Lymphoma Research and I kind of realised afterwards how much we might have known. So, you know, I and there’s a, you know, there’s a real, I wouldn’t have done it any differently, I don’t think, because I, you know, I really felt and feel that the patient has to want to know and it and, it’s and it’s right. And he was twenty years old, you know, he wasn’t a, an eight year old or a ten year old.
 

 

Janet’s partner Chris had not wanted to know the details of her condition, so they were both...

Janet’s partner Chris had not wanted to know the details of her condition, so they were both...

Age at interview: 59
Sex: Female
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I’d like to know if you felt you had enough information at each stage? Did you feel you were informed and in control of what was about to..?

Well, this again was a slightly odd situation because Chris has said to me as soon as she’d been diagnosed and had started the treatment, she’d said to me, “I don’t really want to know very much about the details about my treatment.” And, again, because that was her choice I went along with that. So she was never given very specific details unless she asked for them except, and this was the one real sort of black period, when she was with the, she was under the consultant of the hospital, who was governing her treatment. That the chemotherapy, basically, the choice of chemotherapy, this was not the consultant to do with the surgery. This was the chemo.

We went for an interview with him and he, he said to her, “I understand from the, the staff that you’ve already talked to, that you don’t want to have very many details about your treatment.” And she said, “That’s right.” And he said, “Well, unfortunately, I believe that I can’t give you the correct, my own chosen level of care unless I give you all the information that I have and I’m going to insist that I give you that information.” And she said, “Well, I’m not happy about this.” He said, “Well, look. I insist and I’m going to give you this information.” And he went ahead and told her what her condition was, exactly what the name of her condition, what her likely prognosis was, that the possible treatment and the likely prognosis. And I could see that she wasn’t very comfortable with this and I didn’t break in here because I didn’t feel that it was really my place to say anything but after that interview with the consultant she was really beside herself with, you know, she was in tears.

She was really, really unhappy and the nurse, the Macmillan nurse, gave us a great deal of sort of comfort then and said, you know, “I understand that maybe he overstepped the mark by going against your wishes.” And I still believe that that he was wrong to do this but after this, again you know, I didn’t feel I needed to know the tiny details about her cancer and about what stage it had reached. She was only given enough information to know that that it had started to grow again and that it was affecting the operation of her body.
 


Information about the illness was not the only kind of information that carers wanted. Information about what practical and financial help or support was available to carers and how they could access it was important to many. Some people said they had been told enough about this by their health professionals or a social worker, while others said they had been told nothing or had not been told about a specific kind of help that would have been useful to them. Several asked friends or colleagues for advice; Maggie said she had searched the internet. Sarah suggested that one could never have enough of this kind of information.
 

Savita was sleep deprived through attending to her husband at night; she only found out that...

Savita was sleep deprived through attending to her husband at night; she only found out that...

Age at interview: 60
Sex: Female
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I know enough about the disease, yes, but, as far as the help goes, I was a little bit disappointed that it wasn’t, you know, you have to fight for it. It, it doesn’t get given to you automatically I don’t think. Like, I’ve got night nurses coming now twice a week.

And I didn’t know this, that I could request somebody to come and help me at night. It was only that one of the evening nurses, the twilight nurses, when they come to check the syringe drivers and she said to me she said, “You can request for help at night.” Because I wasn’t sleeping. I was, I had spent, during September October he had spent a lot of time in hospital and I had been staying with him in hospital and there was no, you know, no bed. It was I was sleeping on one of those chairs, hospital chairs, you know that they have, the armchairs that they have and I was sleeping on those chairs. I was very tired and even when he came home he wasn’t well. He was really sick at that time. He was he was very sick and he was getting up a lot at night and I was getting up a lot at night and I, I was very tired. So one of the twilight nurses, she said, “You know, you can ask for help at night.” I didn’t know about this and she said, “Yeah, you need to just request it through your district nurses.” And I felt that they could have done that for me. So if one of the evening nurses hadn’t mentioned it, I wouldn’t have known that this help is available. So that’s when I felt disappointed, you know. They kept saying to me, “Oh, you look tired. Oh, you look…” But they didn’t give me a solution, which they could have done, which I’m sure they knew about, but they didn’t so… so it’s like, you know, the more people you talk to apparently, the more tips and hints you pick up.
 


Some people wanted to know what would happen to the person they were caring for towards the end of their life. Information about this was rarely offered and carers often said that they felt unprepared for the emotional experience and the practicalities. Some carers asked the specialist nurse or palliative care team for advice; Fiona said she found the Marie Curie Cancer Care website, which gives information on this topic. Simon was given a leaflet about this by his GP – he said it was hard reading but that knowing what to expect reduced his fear.

Simon was also recommended a website about how to deal with the children when a parent dies, which he said was the thing he had been most unsure about.
 

Simon found the Winston’s Wish website helped them to talk to the children about their mother’s...

Simon found the Winston’s Wish website helped them to talk to the children about their mother’s...

Age at interview: 39
Sex: Male
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You said that you got help through Winston’s Wish for how to look after and deal with the children, support the children. Would you recommend to other people they got in touch with Winston’s Wish?

Absolutely. Yeah. There, there may be other similar sites but that was one that was recommended to me and it was just the practical advice of what sorts of things can you say to a child. Some of it I sort of knew anyway, the idea of, of not creating metaphors around you know in our case cancer, don’t call it a name. Don’t you know, don’t create metaphors that aren’t true because that will, so all that sort of thing is in there and it, and it, just very useful practical advice. How to deal with children was it, what I used it for because that was the only thing I just was totally unsure of what to do.

It has lots of nice ideas about memory boxes and you know all that sort of thing. So just lovely, I would yeah I would recommend anyone with any kind of bereavement. I recommended it to a friend of mine recently who’s got young children dealing with the death of their grandfather. And he said it was useful.
 



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​Last reviewed December 2017.

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