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Palliative Care - Pain Relief -Advice

WendyS66
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My 86 year old mum has been in a care/nursing home for past 8 months.

She has undiagnosed bowel cancer - stool sample and symptomatic - 3.5 stone weight loss, bedbound,loss of appetite, asleep or sleepy most of the day, now jaundiced - skin and eyes yellow, likely spread to liver She is now on Fast Track funding. To complicate matters she also has dementia. She is not good at communicating her needs and pain to the carers. My sister and I visit every day and for past 2 weeks one of us is with her from midday till at least 6pm

It has become apparent to us that she is now in pain. In the past, when she was dementia and cancer free, she had a  very high pain threshold and never took any form of painkiller!!

The care home started her on oral paracetamol solution( she is also struggling to drink fluids and these have be to thickened) over the past 3 days,  it has become apparent to us, by observing her face, her agitation and by our direct questioning that she is in pain and the paracetamol does not touch this pain

The care home have administered morphine via injection at the lowest dosage.We were under impression that this would be given regularly, throughout day and night however it would seem that they have been administering on a PRN basis. When we left her last night we were under impression that morphine would be given on a regular 2/4hr hour basis. However when I arrived today around midday it became quite apparent to me that she was in pain - as she was agitated and when I asked her, she said she was in pain. The senior carer on duty stated that she had not had morphine since last night but had been given paracetamol! 

After some slightly straight talking conversations, the carer in question arranged for the nurse on duty to access mums “just in case” pack and consequently another dose of morphine was administered. Since then one more higher dose has been administered, with another, we are assured being given around 9pm tonight (29th Jan)

My question is regarding pain relief management - would it not be simpler and kinder to set up a syringe driver, to ensure that my mum is pain free all the time? Giving her a low but steady infusion of morphine`? The care home state that she has to have more morphine via injection so that they can find the appropriate maintenance dose ? Surely a driver can work in the same way, starting at low dose and tweaking it upward incrementally until the desired result is obtained. My fear is that without a driver, the morphine will only be administered on a PRN basis, and then only, if the carer asks mum about pain and and/or they notice that she is grimacing or is agitated.

By contrast my deceased mother in law who was in hospital with terminal breast cancer and confirmed secondaries in lung and brain, was given morphine at the first complaint of pain, without any questioning via driver

Is the care home out of their depth???

  • Hello and thanks for your post,

    I am sorry to hear about your mum. I can understand how distressing it can be if you see a loved one in pain.

    I would talk to the nurse in charge about the possibility of having a syringe driver. It may be that the home does not have one available or it may be that the nurses are not trained to use one. It does vary from home to home as to what help is available.

    Marie Curie has produced some information on syringe drivers which you can see here

    If she was suitable for a syringe driver I wonder whether a palliative/Macmillan nurse could come in and advise.

    Do discuss this with the home. She may be visited by her GP so you could also discuss her care with them.

    I do hope that the home can make her as comfortable as possible.

    If you would like to talk any of this through with one of the nurses on the helpline then do give us a ring. Our number is freephone 0808 800 4040 and we are here Monday to Friday 9 am to 5 pm.

    Take care and do look after yourself as well.

    Catherine

  • Offline in reply to CRUK Nurse Catherine

    Hi Catherine 

    Thank you so much for advice

    We still don’t have a syringe driver up. When we went this morning they had not administered any pain relief since yesterday evening !!! (Monday)  

    Spoke to a nurse and he came and gave her a dose, stating that he didn’t realise we wanted that ! My sister spoke to care home manager and she has stated that doctor needs to approve driver. So they apparently  emailed  doctor surgery. Mum had a further dose this afternoon. My sister been with her all evening, to see if she gets pain and consequently she will ask for another dose as it still PRN. This is really all so unnecessary and quite frankly unbearable for us. 

    In addition to her likely secondary liver cancer, she also has a really swollen right arm and really puffy hand. This in very contrast to the really left hand.   They think that maybe it’s heart failure, but just don’t seem that bothered  

    I feel so let down by what I perceive as lack of proper care and appropriate knowledge within the care home, which I might add is part of an expense national care home group  We would love for her to be in a hospice now, getting appropriate expert palliative care but aside from probable waiting list, we think the move of around 10 miles and trauma involved will likely cause her massive distress and possible earlier death  

    I will be chasing  doctor direct myself first thing tomorrow and be with my mum from morning onward, to represent and advocate for more pain relief if needs be. 

    i will also see if I can get a specialist palliative nurse to come in too. 

    I will definitely give your helpline a call tomorrow 

    Once again many thanks 

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