Living with dying
How bad news was broken
In other Health Experience Insightscollections people explain how they were told about their diagnosis of cancer, heart failure or other serious illness. Here we discuss how they were told that life would be shorter than expected.
It is not easy to break any bad news and it is particularly hard to tell patients that their disease has come back or that there are no more treatments that might lead to a cure.
Most patients want their doctors to be truthful, caring and compassionate, to speak in simple terms, and to use clear cut language, but doctors still have to decide when and how to tell the patient that they are unlikely to have long to live. Some patients decided to be open about their suspicion that the disease was terminal. A man with testicular cancer describes how he seemed to help his doctors by being open.
A man was open about his poor prognosis and that seemed to help his doctors.
A man was open about his poor prognosis and that seemed to help his doctors.
Now when my doctor turned round to me and said, "Well there's this illness called focal segmental bromular sclerosis," I was trying to work out whether he continued the discussion in English or it was a foreign language. He was fumbling with his notes and embarrassed and I said, "It's terminal isn't it?" so he said, "Yes it is," and there was that instance. I'm taken into hospital a lot because my bladder goes into spasm or I get uncontrollable pain that needs intravenous morphine which I can't do myself, and when the doctors sort of look through the notes and they come in and they say, the first thing I say to them is, "Look I know it's terminal so you don't have to sort of beat about the bush," and the look of relief on their faces when I've told them, it's as though phew, thank God we don't have to go through that. People don't like giving bad news and I believe that they, there is no nice way of saying it, you don’t walk in and say, "You're going to die," no one does that not unless they've got the most incredibly bad bedside manner. But you tell, somebody would want to know, I know I would want to know.
People we talked to recalled both good and bad experiences. For example, a man with multiple sclerosis remembered being told very brusquely that he had an incurable disease, which upset him, but he said that later another doctor sat on the side of the bed and explained everything in detail, and he then felt “much happier”. He says that a gentle and sympathetic approach is needed to break such dramatic news.
He was given the diagnosis very brusquely but felt better when another doctor explained exactly what was wrong.
He was given the diagnosis very brusquely but felt better when another doctor explained exactly what was wrong.
When I was first diagnosed in the hospital, a consultant, who I'm glad to say has now retired, said to me, 'Oh, we've got your diagnosis. I'm sorry, you've got a, an incurable disease and we can't treat it', now that was true but I think the doctor, the ward doctor, came back to me and when he explained it to me in detail and in drawings, I felt much happier.
Can you tell me how you would have been preferred to have been told?
As the doctor did, he sat on the side of the bed, he had a pad of plain paper and a pencil and he drew the spinal column, right, and he showed the scarring as much, as near as he could, my particular scarring.
He explained how messages travelled and he said, 'The trouble is when they hit a scar they're delayed, they go to the next scar and they're delayed a bit further and further and further and further.' If you've only got slight scarring or very little scarring that's when it's, MS. But unfortunately I've got quite severe scarring, and so the messages are delayed quite a bit.
How do you think that information should be given?
Well, I think it should be given in the way that my present consultant has given me other news. He sits you down and he smiles at you and first of all you realise that he's on your side, he's with you and he understands you and he understands you as a person and when he tells you or gives you news, like when he gave me the final diagnosis, it was done in a way that, in fact he held my hand, you know, and he told me first of all, he built up to it, he didn't just blurt it out.
You were talking about how you feel information like that should be given?
Gently, but factually, I mean when, certainly people that like to know the facts and I'm one of them, but if they're going to be pretty dramatic then I think it's only right that they should be given to you in a very sympathetic, that's the word I think, in a sympathetic way and that you realise, as the patient, that the person giving you that information understands that you're going to have to take that, take it on board and, and come to terms with that, which for me has been very difficult because of other reasons, not that, I think it's very important the way that these things are broken.
It doesn't really matter how brave you are or how not brave you are, if you're going to have bad news of any sort, any sort of bad news, I'm sure there must be a way of, of easing it so that you can make it as gentle as you can to the person that's going to have to receive it.
A woman with ovarian cancer was devastated when told that her cancer had recurred. The doctor asked for a Macmillan nurse to be present when he broke the bad news, but she found this distressing because she remembered a time when Macmillan nurses were only brought in “at the last minute”, when death was imminent.
She was very upset when the Macmillan nurse was called into the room.
She was very upset when the Macmillan nurse was called into the room.
Obviously it's all different now, but this was it and he said, 'You've got a tumour there' and he said, 'We're not sure what, if it's the same tumour (or whatever), but it's clinging to (whatever)' he said, 'We're going to take another scan and see' he said 'But the ultrasound shows the liver is clear but we don't know where else it is,' and they painted a very grim picture. I mean I came out of there not... I didn't even think I would get home. I must admit he was charming, he was lovely, but I think it was too patronising because it really... I was so upset. I was just stunned, absolutely. I mean I was stunned last time, learning about cancer.
Doctors need to be honest, but at the same time encouraging and supportive. A woman with cancer of the kidney said that her doctor talked to her about her diagnosis and prognosis for about two hours, and answered all her questions. She liked his approach but she would have liked it even better if he had suggested something positive she could do, such as trying complementary approaches.
She was glad to have honest answers to her questions but would have liked to have some positive suggestions.
She was glad to have honest answers to her questions but would have liked to have some positive suggestions.
Well that was in November and as soon as I started on the treatment, actually, I did improve. But when I went to the hospital where they gave me a thorough going over before I started on the treatment, it was... I asked the chap who was extremely nice, I must say.
I took a friend with me which was a good thing to do. She insisted on coming and she wrote down anything because when you, I think I was there for about two hours actually, when you have a long interview like that you can't always remember everything that they've said.
But I did say to him, I'm not sure with hindsight whether this was a good thing or not, but I said, 'I really would like to know what the prognosis is going to be because I have three children and their father's dead already so, you know, I need to get my affairs sorted out". And he said 'Well, could just be just a few months or it could be more. It could be up to two years'. I said, 'Is that the best I can hope for?' He said, 'Well that would be a good outcome'. So that wasn't very cheery news to say the least.
But I think what it would have been good if he'd said, 'But there are lots of things that you can do too, you know, yourself and you can probably, you know, get the best outcome by trying to be positive about it, by keeping yourself healthy. You might want to try relaxation or meditation or and so on'.
If bad news is communicated badly it can cause much distress. A man with mesothelioma (lung cancer caused by exposure to asbestos) describes his shock when he was told that his operation was not expected to cure his disease, but might keep him alive for another year or so. Health professionals must choose words carefully and be aware of what other members of the team have already said to the patient.
He was shocked to hear that major surgery might prolong his life but would not provide a cure.
He was shocked to hear that major surgery might prolong his life but would not provide a cure.
And we talked to him, about, you know, the cure and he said, 'Oh, it's not a cure'. And that was a big shock to us, knowing that I was going to have this radical surgery but still not be cured. And he told me then that without the operation I may live six months to a year.
With the operation it may give me another year and that was a big shock! But we decided, that's myself and my wife, that it was our best chance of survival, you know. Rather than go away knowing I was going to die within six months to a year. We would go away and give it our best shot and our plan is that I'm going to be the first survivor.
People like to manage their emotions in different ways. One woman said that she was glad that she was alone when she received the bad news about her ovarian cancer, but another woman was angry and upset because she was told her diagnosis of multiple myeloma when she was alone in hospital.
She was glad to be alone when given the bad news.
She was glad to be alone when given the bad news.
You know, it must be difficult for people who take others and get bad news. People deal with it in different ways. I mean, now I am amazed that there was so little [information], that's why I got involved with Ovacome and started taking information into hospitals.
And in the Midlands we have brilliant... it covers about a tenth of the country, and all [of] the consultants, the oncologists, the specialist oncology nurses, they all meet together three times a year and I am invited as a patient representative, you know, and that is wonderful that you are there on the inside, you know. Trusted to talk to the people and say what you think without being critical, but just to be involved. Just to be involved, yes.
She was angry and upset that she was told the diagnosis when alone in hospital.
She was angry and upset that she was told the diagnosis when alone in hospital.
He said this to me in the knowledge that I'd lost my husband only a few months before. He said it to me alone in a hospital bed. I was absolutely furious with him. I said, 'You, you know what happened to my husband?' He said, 'Yes'. I said, 'You can't be telling me this'.
What I meant was, he shouldn't have told me when I was by myself... behind curtains, in a ward in the hospital with nobody to talk to and I was desperately upset and immediately rang a friend who came rushing up to the hospital to help me and I was, I was... the thing that concerned me the most was not so much that I was ill with an incurable cancer but how on earth was I going to tell children?
I had an 18year-old daughter, sorry 17 at the time and a 20-year-old son who only a few months earlier had lost their father and were facing the prospect of losing their mother fairly rapidly too because my understanding at that time was that I was very, very ill.
Doctors must also make time and prepare carefully before giving patients bad news. One woman was shocked when a consultant told her that the chemotherapy wasn't working and then discovered that he had had looked at the wrong notes and made a mistake.
She was shocked when the consultant gave her bad news and then said that he had the wrong notes by mistake.
She was shocked when the consultant gave her bad news and then said that he had the wrong notes by mistake.
One consultant I had actually gave me very bad news one day and said, 'The chemo doesn't seem to be working and there's not much more we can do. There is this possibility of this experimental drug but can't get it in the South West" dah de dah. And then he said, 'Oh wait a minute', he said 'I've got the wrong file!'.
And so that's a bit of a shocking interview and he just sort of wrote it off as a little joke and the nursing group had turned white and had to sit down at this point and anyway we got through that and I thought it's time to take charge really here.
And so we started to do a lot of our own research and found out, yes there were other options, there were other things we could do'
Giving bad news to the patient and the family together can avoid difficulties and mistrust. The daughter of a man with motor neurone disease recalled that the worst time for all the family was when family members knew the diagnosis but her father had not yet been told. Taking into account her experience when her mother was also diagnosed with a terminal illness, she concluded that they should all have been told at the same time.
It is very difficult if other family members are told the diagnosis before the patient.
It is very difficult if other family members are told the diagnosis before the patient.
Oh you were told before they were told?
Hmm. On both occasions. It is very, very hard to be with somebody in hospital and know and to say nothing.
How long did that go on?
Well it was probably, with my mother it was four days and a similar amount of time with my father.
So the doctors judged it was better to tell you first?
Yes. Hmm.
Do you think that was the right decision?
I've heard friends of mine say the same thing, no I don't think it's the right decision. And particularly, as with my mother for instance, again a junior doctor was sent to tell her and I was told to come in and be with her when that was going to happen and then he didn't come. And then she grew suspicious, you know 'Why are you sitting with me all day?'
Hmm.
And eventually he came sort of last thing and told her and of course she was very upset but [um] no I don't think that's the right way to do things.
Last reviewed July 2017
Last updated March 2012
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