Living with dying

Message to health,social care workers and government

Many people were grateful for the care they had received during their illness and wished to pass on their thanks to all those who had helped them. They also had important messages that they hoped to convey to doctors, nurses, other health and social care workers and government ministers'

She wishes to thank all those who have helped her.

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She wishes to thank all those who have helped her.

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Age at interview: 71

Sex: Female

Age at diagnosis: 71

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Is there anything more that you'd like to add about what you've been through?

No. Only to say thank you to all those that really have helped me and... oh yes I really am so grateful to them. You know, I mean because when I went in like a year ago February, I mean I really thought perhaps that's that, that was the end then I mean I didn't know but I'd never... I mean my mum had a kidney removed you see and of course you see all those years ago she didn't get really over it. I mean she was dead within 5 weeks sort of thing but they never went into detail but there again I was only 15. You see you don't take it in then, do you.

Health professionals

Give patients more time, invite them to ask questions
Don't make assumptions' take time to identify patients' real concerns about their treatment and prognosis
Listen carefully to what patients have to say, they know what is happening in their own bodies

Health professionals should listen to patients.

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Health professionals should listen to patients.

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Age at interview: 50

Sex: Female

Age at diagnosis: 48

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I would say to professionals that they really... I know it's probably been said before, but, listening is one of their most important functions. And listening isn't something you just do with your ears in front of somebody. There's a process called active listening and that involves, you know, asking the right sort of questions, making them open ended so that you're not just saying to the patient, 'Are you feeling a bit better now?'. You're only giving them the option to say, 'Yes' or, 'No'.

There are certain ways of asking questions and you will get more information and you can make better informed decisions. Listening for me, is what I want professionals to do, and I know they're all strapped for time, but it doesn't have to be the consultant, I mean there's lot of other people who could do that listening.

As I say there was this nurse co-ordinator that I dealt with. She's been great. It's a very important new post and she has time to do that listening, go away find out things and come back and yeah, I think that is one of the primarily important things is to listen to your patients and facilitate their responses by asking the right sort of questions. And they can go on courses which actively taught by psychologists.

"Doctors and nurses should recognise that patients in hospital are vulnerable".

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Age at interview: 75

Sex: Female

Age at diagnosis: 74

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Have you got any suggestions about how staff training can improve those things that you've mentioned?

Oh yes. I think they must as I've said, they must be taught that each patient is an individual. They're very vulnerable. They're very sensitive and what they want is kindness. They don't want to hear, 'Oh I'm too busy to bring you a bed pan'. Or, 'Get up and go you'll be alright'. I mean they kept saying, 'You can go to the toilet'. And I said, 'Well look, I can hardly walk, I will wet myself by the time I get there'. Well you shouldn't have to say this. I mean patients know whether they can get out of bed and get to the toilet in time, but to be told, 'Get up and go'. And having to explain, well I'm afraid I can't. They should know this; they should know each patient and their capabilities.

You also put a lot of stress on the importance of being listened to.

Oh yes, yes. They don't listen at all they just tell you what to do, they just dictate really. You're not a person, you have no points of view, you don't seem to have any feelings as far as they're concerned. You've just got cancer and they'll do this and they'll do that and that's it.

So really what you're saying is apart from paying attention to the physical treatment and consequences of that, to look at the person as an individual with emotions and needs.

Absolutely, absolutely. We... although in the old days nurses did, and so did doctors, I mean they'd sit by your bed. I mean, I remember when I had my appendix out when I was a teenager and they sat by the bed and told you what was going to happen and chattered away but now they don't and I've seen, oh masses of doctors during this year's illness and I don't think one of them has sat and talked to me as a person.

Be honest but tender with people who have terminal illness
Don't treat patients as numbers - look at the whole person
Talk to patients in a private, quiet setting
Don't have whispered conversations -patients have a right to know what is happening to them

People feel better if they know what is going on and are included in conversations with...

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Age at interview: 52

Sex: Male

Age at diagnosis: 37

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I feel very strongly that there shouldn't be discussions in huddled corners and mumbles and murmurings. I want to know everything about myself and the contract that I have with my health care providers and the people that treat me and the people that administer to me is that you can treat my body as long as you tell me everything. The minute you start holding information back from me or not telling me anything then you lose the license to treat me. And if everybody worked on that basis, and if there were no, as I said, huddled whispered conversations in corners people would feel a lot better.

I've heard of so many times when "Well you know he's dying don't you?", "Does he know?", "Oh no, no, no, ssh can't tell him, look at the effect it will have on him." But it will have one hundred and fifty million times worse effect on him when he finally discovers through reading some notes or opening a letter he shouldn't do or hearing from somebody else.

My kids heard that I had cancer in the school playground and from a teacher making an off the cuff remark which she thought was innocent. Everybody has a right to know about what it is happening to them and whether their illness is more serious than they believe. And there's enough information there. There's enough trained people now to talk to children of a relatively young age about what is happening to their parents and their loved ones. And they will cope with it, just give them the opportunity.

Tell patients about the side effects of treatments
Pay more attention to nutrition
Make positive suggestions if possible
Reduce the jargon
Continuity of care is important
Assume patients are aware of what is happening even if they can't communicate

Health professionals must assume that even if patients can't communicate they are aware of what...

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Age at interview: 49

Sex: Female

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So what would your message be to health care professionals and those who run hospitals?

I think you really have to look upon people who can't move or communicate. You must assume that they are aware, even if they don't appear to be. You must assume that they can feel even if you think they can't. And you must treat them as if they were your own new-born child, with as much care. You wouldn't leave your baby in the care of people you didn't know.

So I mean you either tell relatives that they must have a camp bed in the room or stay with their relative all the time because you can't guarantee their safety or... I don't know what you do, just think, 'Have some pity for God's sake'

Offer thorough follow up checks to give patients peace of mind

Continuity of care and thorough follow up checks give patients peace of mind.

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Age at interview: 68

Sex: Female

Age at diagnosis: 57

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There's no continuity of care. Each person as they've come in to see me, until they read my notes have no idea what has happened to me. And now because I am, well, feel that again they are not looking beyond what I am saying that I am feeling well. The last check that I had which was only a month ago, to me, from the checks that I had before, was very cursory. And it makes me feel quite insecure in again a similar thought, sort of thing could be happening. So I am seriously thinking of writing to the consultant that diagnosed the sarcoma which is private and asking if I can see him again because I know that he will do a much more thorough check.

Yes. Now we -

I'm lucky that I have private care. If I didn't I don't quite know what I would say because if I expect the people that have seen me under the National Health Service to spend more time with me than they do I am taking them away from other people who perhaps need them more. It's a difficult situation.

But what you're saying is you think you need that time to be given good care.

Yes. I think, for my own peace of mind because of the prognosis that I've got I feel now because I'm well that the checks are cursory but I can't expect them to do a CT scan every time I go. But its eighteen months since I had one now and I know that that picks up single cancer cells anywhere in your body.

So if you were able to say to a health professional, 'this is what I want for my care now.'

Hmm.

- you would be saying you want these regular check ups perhaps more thorough, more time given and continuity of care?

Yes.

Is that the main things?

That is but then I would feel guilty if... if I was taking time from people who need them more than I do. It's very difficult. You put it on a personal level but when you think about the effect it's going to have on what is going on within the hospital and with other people who need care you think well I'm being very selfish there's nothing wrong with me I'm fine. But for your own peace of mind I feel you need that little bit extra.

Social services should be better organised.
Social care staff need to explain their systems to others (e.g. that patients will need to sign a piece of paper so that agency staff can show they have done the work required)

General

Help is needed to set up support groups
Patients need advice about benefits, wills, living wills and other practical matters

Thinks he should have been given advice about practical matters such as a 'living will'.

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Thinks he should have been given advice about practical matters such as a 'living will'.

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Age at interview: 53

Sex: Male

Age at diagnosis: 50

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Yes. So just to finish off this bit about your views, about your needs and with the care you're getting, is there anything else you want to say about what's been missed in terms of your needs?

I think that people should come up to you say, 'Apart from medical things, have you got everything in order?' like wills and all this sort of stuff. I think this is important so it's not - I don't want to use the wrong word - messy.

So everything is, like it is, accepting things. Like, I've made a will and I've made like a living will so that, hopefully, that helps the doctors make the decision whether to turn off the machines - because, as I say, I'm slowly getting... failing. I know it's got it to be done so I've done it. But it was me instituting it, not them and I think they should have given me some advice.

The government should provide money to help user groups concerned with palliative care to work together
User involvement must not be tokenistic - they need to make a difference
Small changes can make a big difference, e.g. transport to hospitals, drinks being easily accessible in hospital outpatients
More hospices are needed for non-cancer patients (see 'Insufficient hospice care')

Last reviewed March 2012.