Living with dying
Pain and pain control for people with a terminal illness
Pain is a problem for many people with terminal illness, although it is certainly not inevitable. Advances in pain control mean that pain can often be relieved. Different painkillers suit different people and to treat the pain most effectively it is sometimes necessary to try several types, under medical supervision.
The perception of pain is affected not only by physical symptoms but also by psychological factors, such as the emotions of fear or anger, by social factors, such as worry about family and finances, and by spiritual belief. Sometimes people worry that their pain might indicate that the disease has spread.
Pain may vary enormously from a dull ache to a severe stabbing pain. The people we talked to had experienced many different types of pain. For example, a man with multiple sclerosis said that at times he felt as if his muscles were being electrocuted.
Describes her stabbing pain.
It's a stabbing pain?
Yes. A stabbing pain.
Describes his experience of excruciating pain.
The excruciating pain I hadn't mentioned that before, but I am now at this moment in my life. I get excruciating pain. I can't really explain. It's as if all my muscles are being electrocuted, that's the best way to explain it, and sometimes when I'm in bed I lay down and I burn as if I'm burning from inside out and yet the feel of my body is cold. Other times I can be perspiring and my lower half of my body is burning.
Some people had more than one type of pain. One woman with breast cancer said that she was plagued with “all sorts of aches and pains”. However, other cancer patients have very little or no pain throughout their illness.
He gets different types of pain including a cramp-like pain when his kidneys go into spasm.
They have helped me identify that I'm trying to cope with two different sorts of pain. One is the, what I call the background pain, but it isn't background pain any more. It's there all the time from both my kidneys and at the base of my spine and in my bladder. And the other is the spasmodic pain where my kidneys go into spasm and the only way I can describe that is have you ever had cramp in the back of your calf, you know when sometimes -
Yeah, well that's what happens in my kidneys
Describes chronic ill health and many aches and pains, but still feels quite good.
But all these other problems I have are. And though I feel very well, lots of things are very difficult for me at the moment and I do get very tired. I had to give up my studies, I'm unable to work which is a mixed blessing, and... but despite all of that actually, I feel quite good at the moment, and I'm feeling quite happy. And I'm involved in lots of different things which I wouldn't have been involved with if I hadn't have had cancer, and I've met a lot of different people, and my life has changed. And not all for the worse. A lot for the better.
Many drugs are used to treat pain, including non-opioids, such as paracetamol and ibruprofen, and opioids, such as codeine and morphine. Other drugs, such as antispasmodics, antidepressants, and corticosteroids can help too.
People often develop their own routines to remind them to take their drugs at regular intervals. One woman, who was helped by a clinical psychologist at a pain management clinic, had learnt the importance of what she called 'planning, pills and patience'. She took different drugs at different times, sometimes as many as 19 tablets a day.
A clinical psychologist helped her to control her pain with various drugs.
All pills have got two sides to them, just like our natures. And you've got to work with those pills and the only way I can see if somebody is in pain which is constant, and I really was, I'd got to the point where I was taking as many as nineteen pain killers a day. I was having to syncopate two different varieties. One was meant to last six hours but after three hours it didn't work. So I introduced a second one and then after three hours I went back to the first one. I had to write it down all the time to make sure I didn't overdose because there's always the danger you're in pain and you think to yourself, well I don't know. 'God I must take something' but the next painkiller has not stepped into action.
And I found pain, I best explained it like a roller coaster. You were fine when you were at the top of the hill and when you were riding down the other side and then at the bottom there was a plateau which is where you should take the next pain killer because otherwise you got halfway up the hill and you couldn't make it and neither could the one pain killer you were going to take next. But get a regime and that's where the planning came in and of course the patience is you've got to still go on taking them. Even if you think I don't like taking all these chemicals, you're only taking them to help yourself. And if you're not prepared to do what they'll offer you in the way of help you don't deserve it.
One woman, who at first denied she was in pain, was admitted to a hospital ward for several days so that her pain could be controlled with morphine.
She was admitted to a ward for several days so that a morphine dose schedule could be worked out...
So with this regime of morphine comes a lot of mental pictures because people immediately think 'right, you're on morphine you must be getting nearer to the end', I mean, although it's just being used as a pain control it's obvious from the nurses reaction that that's how they are treating me. But the only way I can treat it is by saying 'okay I'll let the morphine do the job that it's got to do, but my job is different, my job is trying to leave memories for the rest of the family'.
A man with oesophageal cancer described the excellent pain control he had had when he was in hospital for surgery. He was confident that when he reached the last stages of his illness any pain would also be well controlled.
He is confident that when he reaches the last stage of his illness he will get enough morphine to...
When it came to the operation I had the epidural. I went out very quickly and didn't know anything about it until I woke up in the Intensive Care Unit. After the operation, the epidural was left in so I was being fed morphine. Accidentally it came out and one evening I was in pain for several hours, nothing too bad but I was in pain, and eventually they gave me a self administered morphine infuser which went into my arm and I had a pump, I expect you've heard of this before?
You can't overdose or anything but I could give myself a shot of morphine when I wanted it. They were willing to give me analgesics, paracetamol, Tramadol, whatever, whenever I felt I needed it. If I was in pain I would ask for it. They kept a very careful record of course of what I was having to make sure I didn't overdose, and generally speaking they gave me what I wanted to control the pain. So I would say my general experience has been that the pain control has been excellent. I wouldn't worry about pain if I had to go through it again, it's been very good.
And what do you think about the future, you feel quite confident then about the pain?
I do, because during the last stages when you know, there will discomfort and pain around, I'm sure they'll give me enough morphine or whatever it is to control the pain. If I ask for it I'll get it. I like to think that and I do believe that will happen. I should say that if I find there is some resistance, I mean I'm not asking anybody to overdose me or anything, but if I find that they're not controlling the pain to my satisfaction, well then I will be aggressive about it and push them. I'm not reluctant to do that.
Pain relief clinics may also be able to offer nerve blocks for pain relief and other treatments for pain also include radiotherapy (for cancer and bone pain), physiotherapy, and occupational therapy. Alternative therapies such as acupuncture and complementary therapies such as relaxation, massage, counselling and visualisation may help too. Surgical collars, slings, corsets, walking aids, wheel chairs, hoists, and surgery may also be used to reduce pain.
She uses visualisation to try to control the pain.
And you're finding that helpful?
I do that all the time, constantly do that, especially at night. Night-time I climb walls.
Because of the pain at night, you mean?
Yes. I've got quite an interesting bits of wallpaper missing from the back of wall where at night I grab on to back of the bed sometimes, when I'm in so much pain and I'm crying. And I just catch the thing and then I rip to try and get rid of it.
That's very hard for me to imagine, you know.
It's something you have to come to terms with. It's something you have to accept is part and parcel. We have drugs, MST and stuff like that which is slow release morphine. But at the same time I don't want to be drugged up to the eyeballs. I want to be in control. And if I can try and be in control of the pain... sometimes you're too tired to control it.
One woman was grateful for the advice about pain that she received from a nurse at the local hospice. The nurse suggested alternative medication and she recommended a TENS (transcutaneous electric nerve stimulation) machine, which could be hired from the local pharmacy.
During the past 10 years there have been major improvements in the treatment of pain for those with cancer, but limited research on the assessment and management of pain for those with other diseases. A woman with chronic obstructive lung disease said she would like to have had access to good pain control, either in a hospice or a pain control clinic, but could get neither locally.
She regrets that there isn't a pain management clinic for those with lung disease in her area.
Yes, pain management, which I don't now. When I've been helping with the research the person who's doing it is a palliative nurse and he's looked at my medication and just... so he keeps offering his support and has said I should be having Oramorph as well as the MST for the breakthrough pain. But because I'm not under a pain clinic it doesn't happen.
And you can't get it through your GP?
I can do but he's not a great lover of drugs so I don't like ringing the doctors unless I really need them.
But you come across as a really assertive person.
And I'm surprised that you've not gone to your GP and said, "Look I've got this pain, please...".
I've tired. I have spoken to them. The MST this time went up to maximum for breathing.
You're up to maximum?
Yes, so, well it can go higher but it suppresses my breathing.
As with all medications, pain control must be balanced against side effects. Some people said they did not want to be 'drugged up to the eyeballs' and would rather tolerate some pain. A man who described his pain as intolerable was told that if he were given the drugs needed to control the pain he would not be aware of his surroundings and he would need 24- hour one-to-one care.
Regrets that he can't have adequate pain control without unacceptable side effects which would...
I am no hero. I'm very much a coward in some respects, and I can't cope adequately with the pain because the Macmillan people have explained to me that there is no pain control that they can give me, or anyone can give me, that will effectively take the pain away.
Now there is a trade off and the trade off is that I'm not prepared, at this point in my life, to make myself totally dependent upon other people. I need to have an awareness of my surroundings. I'm chairman of governors of two state schools which takes up my time because when I'm doing things I don't sit and think about me and what's going on inside my body. I love hearing kids read, I've even got my fiancée involved as a school governor as well. The reason being is that I can have more time with her that way. No, she's very good as a governor.
But I can't control the pain effectively. I'm taking massive amounts of morphine to control the background pain and it does sometimes... and I'm using another drug called Buscopan [hyoscine butylbromide] to try and ease the spasm pain when it happens and that's via a tube, just here which you can't see and a syringe. The Buscopan has one of these side effects and it paralyses smooth muscle and it is a simple drug so it will paralyse any smooth muscle, whether it be kidney muscle, intestinal muscle or anything. So there is a danger that I can paralyse my bowel and I won't let that happen because that is not... So the things that I do. The quality of life that I have and that I set for myself is governed by what I'm able to do, what I'm able to tolerate.
I feel sad and angry that at the dawn of the twenty first century they're able to talk on television about taking photographs and soil samples of Mars but they can't give me something that will keep me awake, lucid and to be a useful member of society and kill the pain at the same time.
Others experienced various side effects of painkillers, such as constipation, but managed to overcome these side effects by taking other drugs, such as laxatives. A woman with lung cancer took morphine which made her 'dopey' but altogether her pills made her feel quite 'high'.
The hospice palliative care team has helped him to control pain without serious side effects.
And so it's a question of balancing one against the other and I think we're winning at the moment and as you see I'm able to be up and about and so on.
How did you come to get the right balance for the painkillers.
Well, it's a continuing process. I mean if I find I'm getting a bit constipated, I take a bigger dose of Lactulose which is my principal laxative and I also take Fybogel which is supposed to help a bit too.
And it's a question of balancing the dose against the requirement and that will go on being the case I think.
And have the Palliative Care Team at the hospice helped you sort that out?
Oh yes, that's the thing they're working on.
The morphine makes her feel a bit 'dopey' but it controls the pain.
With morphine. I take 60 [mg] in the morning and 60 [mg] in the evening - tablet form. And if the pain gets really bad in between times I can take liquid morphine and that is keeping it under control. I know it is because one night I forgot to take my pills and when I woke up in the morning, not having had any medication the night before, or during the night, I was in a lot of pain. Yes, it was very difficult to walk.
Does the morphine have any difficult side effects you have to cope with?
I don't know whether it's the morphine or the other drugs but I do feel, with the morphine, I know that's what's making me dopey, sort of drugged. And then the other pills are putting me on a high. Everyone's going around with long sad faces because mother can't walk and she's got spotty skin and I'm all sort of jolly.
Hmm, you're feeling good on them?
The man with multiple sclerosis (mentioned above) said that he was fortunate to attend a hospital which had a team especially set up for people with this illness, and that the consultant successfully managed his pain with morphine, while keeping unwanted effects to a minimum.
Last reviewed July 2017.
Last updated August 2014.