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Caring for someone with a terminal illness

Coming to terms with a terminal prognosis

Waiting for a diagnosis can be very stressful when you know someone is unwell but you don’t know why. Some people had to wait a long time for a diagnosis; others were told a suspected diagnosis while further tests were done before the diagnosis was confirmed. Sometimes doctors’ initial suspicions were wrong, meaning that people were given one or more inaccurate diagnoses before the correct one. Jane was initially relieved that George was not diagnosed with Motor Neurone Disease although later tests showed he did have it. Saba sought a second opinion about her mother’s symptoms, and Mary moved her husband to a private hospital to speed up the diagnostic process. A speech therapist friend suspected Dick’s wife had MND and told her that she should see her doctor. The carer sometimes realised what was wrong or found out the diagnosis before the patient had been formally told. For instance Una had researched her husband’s symptoms on the internet and sneaked a look at his notes on the consultant’s desk to confirm her suspicions.
 

Because of her experience as a medical secretary, Maggie recognised that Donald’s GP was using a...

Because of her experience as a medical secretary, Maggie recognised that Donald’s GP was using a...

Age at interview: 57
Sex: Female
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So the following week he was supposed to see the GP anyway and that morning he was going to work at the bowls club so he drove down and I drove down too. I walked down to meet him afterwards and I got in the car with him and, my husband was the sort of person who could drive anything anywhere. We got in the car. We came out of the bowl’s club, bowl’s club car park and he turned the wrong way, which really threw him. Going round a roundabout, to sort himself out, he nearly hit the gate post. We, eventually, we got to the, we were near the complex where the doctors is and we missed that turning so he turned into the station car park, once again, narrowly missing the entrance. We came back along the road to the mini-roundabout and if I hadn’t shouted he would have hit the person on the left hand side, who fair enough, should have slowed down, but wasn’t giving way. When we got into the car park for the doctors, which is part of the shopping centre next to Halfords there were no spaces so he parked on the zig zags, where which is used for the ambulances and fire engines and I said, “Darling, you can’t park there.” I said, “I tell you what, go in a disabled space and I’ll keep an eye out.” So he pulled into the middle of two disabled spaces and he parked diagonally across them and couldn’t see anything wrong with the way he’d parked.

So went into the doctors and he spoke to her and I explained what had happened and he explained that he was, he didn’t have headaches but he had times when his head didn’t feel right and he just, he just basically didn’t feel himself. And he and I think he was having trouble with distances and things like that.

Anyway, she said that she would refer him to a neurologist. I asked her for a copy of the letter and she said, “No. She was going to do a form. Well, I knew immediately it was the local, it was the cancer form for the local network so I asked her this, using the initials so that Donald wouldn’t twig, and she agreed that’s what it was.

So she, we came home. He immediately fell asleep on the couch in the conservatory and slept for a couple of hours and, in the meantime, I rang my stepdaughter to say, “Look. I think this, think he may have brain tumour.” And I said, “I think perhaps I need to tell him. What do you think?” So we agreed that Donald always liked to know what was going on so when he woke up, I explained, as gently as possible, that this is probably what they were going to test him for and he was all right.
 

 

John felt he had to wait too long for the diagnosis of his son’s Leukaemia.

John felt he had to wait too long for the diagnosis of his son’s Leukaemia.

Age at interview: 57
Sex: Male
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And then, eventually, he got transferred to a regional hospital, where he was treated, and that was the first time, and this so this is this is three and a half weeks after I brought him home and almost a week since he’d been in hospital, we eventually, get told that he’s got leukaemia.

So we, we had that horrible time right at the start. We knew something was wrong. It was obviously serious. He was getting worse. He was very weak by the end, he could hardly stand up on his own, you know, as a as a very fit and active twenty year old. And, and people were kind of skirting around it but they wouldn’t actually say anything, because they didn’t know for certain. And, and so, you know, that wasn’t that wasn’t good and I think certainly, from my point of view, this is because cancer is so rare in young people, it, it takes far too long to diagnose it really and we experienced that.
 

Being told the condition was terminal was usually a harrowing experience and carers felt a wide range of emotions including fear, distress, anger and sadness. Some found the diagnosis was a complete shock that came ‘out of the blue’.
 

Ruth was shocked when her mother was diagnosed with terminal cancer; although she didn’t have a...

Ruth was shocked when her mother was diagnosed with terminal cancer; although she didn’t have a...

Age at interview: 60
Sex: Female
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Because I had an iffy relationship with my mum, not very close and when she was eighty she had this birthday party, first one she’s ever had. And a week later went into hospital and when she came out, they hadn’t done the operation and I was with her and the Macmillan, not the Macmillan unit. I was with her at the hospital when they told her that she would die of it. It was terminal cancer. I was as shocked as my mum. Well I say that, I probably wasn’t as shocked as my mum.

But she was very shaken, very quiet and I thought, “Don’t want to deal with this.” Anyway, we went to my sister’s and I had to tell my sister, which was the hardest thing because we’re both crying, but it was shock more than anything because neither of us were that close to her, although she was an okay mum but circumstances.

So but we thought it was in the future so we all got used to it and my mum lived alone and has lots of friends. She’s quite social. She had lots of friends and she seemed all okay with it. She was pretty stoic, but I felt the need to see her every day and my sister didn’t, as a matter of, my sister’s got a disability. So I went to see her, called in there every day and it wasn’t a chore because she’s quite a positive person but, obviously, she was brave and, except in the night time when she was on her own.
 

For others the diagnosis was expected and explained the symptoms. Where the patient was elderly a terminal prognosis was easier to accept. Theadora said she took her cue from her sick mother and remained calm. The diagnosis also brought a sense of relief to carers who had been frustrated by the lack of a definite diagnosis or who had been searching the internet to find out what was wrong. Most carers received the news during a medical consultation; a nurse was sometimes present. David (Interview 35) said, “I think it was delivered in quite the right way; it was fairly straight forward really”. Not everyone was happy with the way the diagnosis was delivered. While some consultants were very direct and matter of fact, others used unclear language or left carers and patients unsure of the implications of the diagnosis. English was not Saba’s mother’s first language, which may explain perceived difficulties in how best to deliver the diagnosis to her.
 

Saba was angry because she felt the consultant had expected her to break the news to her mother,...

Saba was angry because she felt the consultant had expected her to break the news to her mother,...

Age at interview: 45
Sex: Female
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And they rang me and sort of said, “This is the situation, it has been diagnosed as cancer, as we had feared, metastases, we need to obviously let you know”. And I said, “Well what are you saying, do I, are you going to tell my mother?” They said, “Well it’s up to you.” But I felt that they were pushing the ball in my court, which I thought was quite unprofessional because I just thought it’s about my mother and it’s about you. I’m her daughter but it’s not for me to... how do I break the news to Mother? I can’t tell her these things, you know, I’m not professionally geared up.

So I literally had to sort of say to them, “What are asking me to do here? Are you at any stage going to call my mother in, I’m expecting you to break the news to her. All I can do is be there to support her and I don’t feel… I know nothing about the situation that I can even break the news to her before we come to see you”. They just said to me, “Well it’s up to you how you want to deal with it”. So anyway I said, “I think it’s for you to tell her because there’ll be questions that she may ask”.

So I took… we went to see the consultant with my mum. And they just, just sort of said to my mother, “We’ve had the results back from your cancer… I’m afraid, you know, you have cancer, and it will be passed on in the next two weeks… we’re passing it on to an oncologist and we’re going to ask you to just go… we need you to go and do a blood test now and we’ll get back to you”. And I was shocked at, you know, I thought they would have somebody there, you know, somebody, a Macmillan nurse or somebody there when they told her the news to sort of help to sort of counsel her at this stage. But my mother I think was just shocked because she just went and said, “Oh okay”. Obviously she, there’s a language barrier. She could speak English but I don’t she felt confident when it comes to an emotional matter.

And, you know, I didn’t really know what to say to her. What do you say? So I, I was really angry with the consultant at how they’d handled it, that it was done in a very sort of cool way. And I can understand from their perspective, on a professional level that’s the only way they could deal with it. But here you’re talking about, you know, a disease, that affects not just you on physical level, emotional level and all the sort of people around you, and it was a great unknown. At no point did they tell her that her cancer was terminal. At no point did they sort of say, “This is the situation”. She didn’t ask any questions because she didn’t know what to ask at that stage. And I think she was just absorbing the shock, the shock of it.
 

 

Simon had mixed feelings about the way the consultant delivered his wife’s terminal diagnosis but...

Simon had mixed feelings about the way the consultant delivered his wife’s terminal diagnosis but...

Age at interview: 39
Sex: Male
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How was that? How was that consultation managed?
 
Well it was, looking back it, it was, it was managed probably as well as it can be. Because I understand about, more now about what they have to do, they cannot pull any punches I think, I mean you know so I understand now but at the time it feels like it’s managed badly because, well I’m still very mixed. I think that if someone is going to die, and that’s a foregone conclusion and the consultant knows that they are going to die, and there’s nothing you can do about that, in a way I don’t see any harm in pulling the punch slightly to start with. You know on the basis that if you, if you give the news at least gradually to an extent you just soften the blow. I mean in a way I don’t see the harm in that.
 
What did the consultant say then?
 
She said that, you know you go into a little clinical room, on, off a corridor, and sit down and she took a nurse with her. She in fact took two nurses with her this time, you know so by this stage I know that if someone takes a nurse with them it’s serious.
 
And she said, very matter of factly, she said, “Well you know,” along the lines of, you, it is cancer and it is malignant, and she said, it’s in your pancreas and we can’t operate. I think fairly early on she said, “We can’t remove it.” And then you know so you know, I then said, “Well, okay so you can’t remove it, but,” and she said, “Well we can give you chemotherapy to contain it.” So I then said, “Okay well, so you can contain it then indefinitely?” Because it, you know, you just, I think you go into shock and you clutch at straws, and she said, “There is only so long that you can contain it for you know, it will develop but we, but we can’t get rid of it.”
 
And I think I then was carrying on with, “Okay, well we’ll contain it then.” So she, I think she knew then that the message wasn’t getting through. But the way the, then she just, she then just said, I think it was along the lines of, you know, “You’re looking at, you know, another two years, and basically you need,” she said, “Basically you need to make provision for your children now.”
 
So that was quite shocking.
 
And that, it was that phrase, just stuck with me all, you know even, even now I just think, it was sort of too, she wanted, she was using a shock factor to make the point. And I was, I’m very mixed, I’m very mixed because you know she would’ve known that we’re, that as soon as she told us the news you go into shock. I mean you go into a deep shock where you’re not really thinking straight. And maybe they’re trained to, you know maybe, I don’t know, but then you, maybe they use shock to sort of shock you out of it. You know the equivalent of slapping someone’s face. Where she you know, and she knew that mentioning the children would make it real.
 
The other thing I do remember is that she actually sort of almost welled up at one point. And I was so glad actually, that obviously that sounds horrible, I don’t mean that I’m glad that she was upset, it’s just that that level of humanity you need because it’s so clinical.
 
And they’re so well practised in delivering the news, that when she sort of slightly welled up because she’s, she had young children, in fact she was pregnant when she gave us the news so she must’ve felt for Karen. They were probably of similar age so she must have felt for Karen qui
 

David had not realised how serious his wife’s illness was before the diagnosis. The doctor told...

David had not realised how serious his wife’s illness was before the diagnosis. The doctor told...

Age at interview: 43
Sex: Male
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I think probably Fiona was a bit stronger that I was at that point. I found that very difficult. I don’t know if that’s because perhaps she had a, a bit more of an inkling that there was something fairly major going on inside. And whether or not I felt, well I just didn’t realise how major that might have been. I found that difficult. But, I remember at the time being very upset.

I’m sure. How was the news delivered?


Fairly matter of fact. The consultant for her liver, was the person who passed the information to us. And I think it was delivered in, in quite the right way. It was fairly straight forward really. We went to a room to discuss what the findings were. And didn’t beat around the bush, went fairly quickly to what it was. Mentioned words, which needed clarification like a growth, you’re not quite sure what that means. And then palliative care came up and that was a word I didn’t understand.

When you said he explained what the growth meant, what did he say?

I… well I think at that point they hadn’t actually diagnosed what it was in terms of a cancer. But I think cancer was what he was telling us. And but… the precise type of cancer source and all of those things, they still needed to do tests on. But in a very short time, we were talking to the doctor, we were put into the picture that we were in a very bad position.
 

 

Lesley’s husband David was diagnosed with a rare cancer and the doctors could not tell them much...

Lesley’s husband David was diagnosed with a rare cancer and the doctors could not tell them much...

Age at interview: 66
Sex: Female
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We weren’t offered any treatment options because nobody quite knew, until all the tests were done, what that was going to bring. So it was about a month and a half of puzzlement and, and everything was unclear and I’m a very, I have to know person, so that I can deal. If I don’t know I freak and I didn’t know. So there was quite a bit of freaking on my part going on and, at the same time, trying to realise that I wasn’t helping the situation, David or anything else.

It was very difficult because as a disease itself, if it had been a solid tumour somewhere you can visualise excising it and dealing with it and, in apostrophes, curing it but to be told that what David had was treatable but not curable you you’ve got this long distant future in front of you, which is grossly unknown, and I don’t deal well with the unknown. I deal with knowing what I’m doing, where I’m going. I don’t deal well if things are unknown and I found me a bit crumbly really because it wasn’t obvious what was going to happen or how we were going to deal with what was going to happen, both medically and domestically, how that was going to pan out either. And, particularly, with the state we found ourselves in, in the house as well, which hadn’t even been started let alone finished. All of that just fell into a big hole and I couldn’t work out what was going to happen first or how it was going to happen and that was confusing in the extreme.

I think that was probably, even more confounded by the fact that the medical experts, they didn’t know either. So they couldn’t give you any reassurance that if they did that, then that would happen and if they did something else, then that would happen, because they didn’t know either. So that was even more, for me, that was even more confusing and I’m not very patient. I’m not a patient patient. David’s very patient but I’m not a patient patient. And I was getting impatient with them, which is why I spent such a long time on line trying to fathom my way through it myself. So that was immediately, for me, a huge problem because I couldn’t, not being in control, I couldn’t make it better. I couldn’t get anybody else to say that they were going to make it better either and that was very hard, very, very hard indeed all round.
 

The diagnosis could be unexpected, so carers were not always present when the patient was given the news. Mary’s husband was admitted to A&E while she was away in France; she returned to find him in hospital. Julie‘s partner came home from a hospital appointment with his diagnosis of oesophageal cancer and said ‘read this’. It can be difficult to come to terms with a terminal prognosis and carers were often left feeling numb and were faced with telling members of their family and friends.
 

After learning his wife’s diagnosis Simon felt he was burdened with carrying a bomb because he...

After learning his wife’s diagnosis Simon felt he was burdened with carrying a bomb because he...

Age at interview: 39
Sex: Male
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It felt to me like carrying a bomb. It felt to me like carrying a bomb that if I opened my mouth would pull the pin, you know. And it was, you know as though we were, as though I was sort of cradling this news.

Who did you feel you wanted to tell first? Who?

Oh well I didn’t want to tell anyone. I mean I, it was a case of we were going to have to tell, my parents were here, they’d come to look after the children. While we went to the appointment. Or I think it was just my mum actually and, so we knew that we had to tell them. And Karen’s family. But it was a case of have, we had to, you know. We, we didn’t want to tell anyone. Because we knew how, we knew what a shock it was for us. Or this is how I felt at least that it was such a shock that I didn’t want to burden anyone with that.
 

Deciding what to do once a terminal diagnosis has been given can be difficult. Some carers decided not to tell the patient the prognosis. Henry and Jane’s children decided it was important that Jane felt she could recover, and Saba’s family decided if her mum didn’t ask they wouldn’t tell her about the extent of her cancer.
 
When the patient knew of the prognosis the decisions about what to do next were usually shared and the time left was highly valued. Dick and Di went on a holiday they had always dreamed of to Venice, and Anne planned her 50th wedding anniversary party - she felt ‘if we don’t do it now, we never will’. Victoria and Ivan felt they would take one day at a time and used their faith to keep them strong.
 
Being told that the condition was terminal meant that certain treatments (such as a Whipple’s operation for pancreatic cancer) were no longer an option or that there was no treatment available other than palliative care. Palliative care aims to provide relief for symptoms and emotional and spiritual support to patients and carers to enable the patient to live life as fully as possible. Once the prognosis was understood some patients rejected any further treatments aimed at prolonging life, such as chemotherapy or radiotherapy, in favour of symptom control.
 

Although some of the health professionals advocated radiotherapy to try to prolong Donald’s life,...

Although some of the health professionals advocated radiotherapy to try to prolong Donald’s life,...

Age at interview: 57
Sex: Female
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I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said… I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should think positively. He should, he might be able to go home. It wasn’t a bad diagnosis.” And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So then I was talking to Donald and sort of trying to look on the bright side but he wasn’t having any of it and, eventually, we saw the neurologist and he said he’d got the histology back and it was a high grade astrocytoma. When I said, how it had it been missed the first time, he said it presented backwards. Normally, apparently, the core comes first and then the shading, the nucleus round it but Donald had present differently and also, astrocytomas are more prevalent in children. So that was why they’d missed it.

So then we had this case conference, and this conversation about, you know, whether he should be allowed to die or whether it had, and I said, “Look. Donald’s had enough.” I said, “And it’s not because he’s depressed and it’s not because he’s cross and he’s not because he’s given up. I said we’ve always said, right from the very beginning both of us that, if it’s inevitable then let’s get it over with.” So the neurologist then acquiesced that Donald would be left alone and to get palliative care in and he could have what he wanted, which is a quiet and reasonably dignified death.
 

The term ‘palliative care’ is not always fully understood by people and the realisation that there are no further potentially curative treatments can be upsetting. The possibility of taking part in clinical trials was investigated by several, as were complementary therapies for symptoms. Although they had been told the condition was terminal, some carers still hoped for a cure or said that the seriousness of the situation only dawned on them slowly over time.
 

Dick and Di investigated, but decided against, using complementary therapies; they continued to...

Dick and Di investigated, but decided against, using complementary therapies; they continued to...

Age at interview: 55
Sex: Male
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It was a really strange sort of six months, you know, because, you know, we were convinced and at the same time we were hoping, you know, and, and it was, we were planning what, what on earth were we going to do and how long might it take you know and the… what we’d read suggesting anything between eighteen months and ten years possibly. So what was going to happen, how would we deal with it?

And I got in touch with a physician who I knew that I used to work with because I used to work in a complementary health clinic, who specialised in life threatening diseases. And he came back to us and made some suggestions.

But I think it was very clear… both to Di and to myself that we didn’t really want to go down that route. We didn’t really want to anxiously fight the whole thing you know. You know, MND the outcome was pretty certain whatever you did. And, I mean, I guess we both held out for the possibility of some unusual cure or, or prolongation of the disease. But we both realised that, you know, that it was terminal.
 

 

Initially Peter thought his friend would get better.

Initially Peter thought his friend would get better.

Age at interview: 69
Sex: Male
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When we look, you look back at [friend’s name]’s illness, initially did you expect, what did you expect to happen after her initial diagnosis?

I expected her to have the chemo, as people do, and improve and progress.

I was going to move back to my place, fifteen mile away and see her at weekends. And she was she was going to go back to work as a receptionist, a wages clerk and continue her old life and I’d have my life and meet up at weekends, be friends and partners.

So did you view caring just as an interlude where you’d be helping her over a difficult time?

Basically, yes. Initially, yes, I suppose. Just wanted her to get better and I can get her better.
And, I was very optimistic and confident.
 

Although many carers still hoped for an improvement, honesty from the medical professionals was highly valued. For Georgina, honesty and openness from the consultants treating her mother’s cancer helped her to feel involved in the treatment decisions. Jane found it frustrating when some of the professionals dealing with George’s care were not totally honest with her. It can be difficult for the consultant to gauge accurately how long a patient has to live, although many wanted to know. Some carers said it was easier to cope if they knew what the life expectancy would be; one said that knowing it could be several years was helpful. Heather asked the consultant outright, ‘How long have we got?’ Sarah realised she was ‘in for the long haul’ when she started caring for her parents who both had Parkinson’s disease. Sometimes the time between diagnosis and death was very short, or shorter than expected, and carers found they had little time to adjust. Others said that it had been difficult to adjust when the ill person had lived for longer than expected due to the availability of new treatments.
 

When things started to go wrong Cassie asked the doctor if her dad was going to die and was...

When things started to go wrong Cassie asked the doctor if her dad was going to die and was...

Age at interview: 26
Sex: Female
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And then he had hundreds of things that went wrong. His lungs kept collapsing. I was, at one point, he was in hospital and he was so ill that I thought he was going to die that day. I took him to hospital and he was being sick constantly. He looked like he was dying and I said to the doctor at the time, “He’s going to die isn’t he?” And the doctor said, “I don’t know.” And it was just the realist thing anybody had said to me because we’d always, we’d constantly been told, “Hold on, hold out hope. You can survive it. You can survive it.” And this doctor said, “I don’t know.” And, although it wasn’t conclusive, it wasn’t giving me an answer, it was real and so, at that point, I spoke to my dad and said, “Do you think you’re going to die?” And he said, “Yeah, I won’t get through this.”


And that was such a difficult question to ask and I was really nervous about asking it and a bit sort of embarrassed and, oh, you know, and when he said, “Yes.” I thought, “Oh, right well, if he thinks he’s going to die then, you know, that’s really it.”
 

 

Over time Jane came to believe that knowing George’s MND was incurable was easier to deal with...

Over time Jane came to believe that knowing George’s MND was incurable was easier to deal with...

Age at interview: 44
Sex: Female
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Interestingly, as we kind of went through the journey I actually, came to the conclusion that in some ways, that was better than having cancer because we knew absolutely what we were facing. We knew that there was no option. That actually, you know, we were facing certain death with no treatment at all. Whereas if he’d had cancer, we’d have been striving constantly for the next treatment and the next treatment and the next treatment no matter how narrow the chances were of a cure, we would still have been striving for, for treatment but, actually, the thing that it gave us was this incredible honesty between us in our communication because we had to be honest because it was, you know, we had to say the things that needed to be said because we knew that there would come a time when we couldn’t say them. 



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