Palliative Care Package

Yes supernan.
We had this # a few months ago with someone who wanted to be cared for at home.
The doctor prescribed 'just in case' drugs which we collected from the pharmacy, but which we couldn't give ourselves - they could only be administered by the district nurses if they thought they were needed, but it meant they were there at hand and we wouldn't have to get the doctor out to write a specific prescription.
I imagine the list of drugs would be different for each patient depending on what it was thought might be needed.

Yes supernana we were in a similar position to janeainsworth when my mum spent her last weeks at home . The GP prescribed several drugs that may have been needed and the district nurses came in every day to administer and top up the driver. There were others that we could give ourselves but they had to be recorded in the drug register that was provided. I agree that the drugs will differ from patient to patient .

Apparently the GP didn't prescribe the drugs because when she saw the patient she was calm and peaceful and the doctor thought the drugs weren't necessary. I am angry - so angry - that she decided that because the patient is ok now, she'll probably be okay until the end. She wouldn't have made that decision if it was her mother in the bed!

I have received this explanation through the practice manager, but I wonder if I should ask to see the GP face to face to get my upset and anger across. This old lady was absolutely terrified - choking and unable to speak - and even when the paramedics decided to try GTN spray it took another twenty minutes before the symptoms calmed. The old lady died peacefully 36 hours later, but even now I cannot go into her house at night because I can see her frightened face in the bed. I had flashbacks for a while afterwards - it was horrendous and it shouldn't have happened if the GP had done what she was supposed to do.

I contacted the GP surgery to make sure that all the GPs are aware that these drugs should be prescribed, which the practice manager assures me has been done. I don't want that to happen to another of their patients.

To me, the GP was negligent and I don't feel that I'm getting anywhere with this.

No-one, not even a doctor, is clairvoyant. There are a multitude of symptoms that might occur during end of life care and depending on the illness involved. Sad for this poor lady.

Supernana this was obviously a very traumatic event to witness - I'm glad your neighbour had a peaceful death in the end.

As a nurse who regularly does end of life care in patient's homes:

I don't know the rules or guidelines but doctors don't prescribe a package of drugs for every patient 'just in case'. I don't know the official statistics, but not everyone by any means needs the syringe-driver. I've seen a number of cases where the drugs were not needed and are sent to the pharmacy for disposal after the patient dies. No idea of the cost but there is usually, morphine or similiar, plus meds for secretions, nausea, and agitation/hallucinations mixed in the syringe-driver and top-ups of each drug can be given by a nurse when needed.

Even if the drug for secretions, Hyoscine, was on hand I don't know if that would have been any use for a pleural effusion. Maybe the lady needed to have the syringe-driver set up and administered to prevent the build-up of secretions in the days beforehand, but that's a different matter.

I don't think the GP was negligent - she made a clinical judgement, and at the time of the visit the patient was calm and peaceful.

My mum had a syringe driver for the last 2 weeks of her life. When she left hospital no-one expected her to live more than a few days as she was a dialysis patient. The last 2 days of her life were horrible and I can still see her face at night when I cannot sleep. No matter how I try I can't seem to remember her happy, smiling face just the awful one.

gilly For a long time after my mum died I could remember her only as she was after dementia took hold.
Then one night I had a dream in which she was her normal self, saying 'Hello, love' to me.
After that it was as if I had turned a corner and was able to start thinking about her as she really had been.
It has only been a few months since your mum died - it takes time to heal from the sadness which never really goes away, just that you start to be able to remember the good things as well. x

My mum has had 'end of life drugs' on hand in the nursing home since January The staff there have to ring the surgery for permission to use them when the tunecomws

River - I thought that it was standard practice to prescribe whatever drugs might be necessary, but from what you say maybe I got that wrong. I think I'm still upset by what I saw and heard that night - maybe as time passes my emotions will settle down and I might stop blaming the GP so much.

As Gilly and Jane have said, I cannot see the old lady (I looked after her for ten years) as a happy, smiling, mischievous (often cantankerous) person any more - all I can see is a terrified, drowning face. Hopefully that will improve.

Thank you all for your thoughts - maybe you have helped me to put this all into perspective.

It's just after midnight now and although this has just been a short thread, I actually do feel a lot calmer having discussed this with fellow-GNs.

I think I'll find it easier to live with now, having seen other people's views on it.

But I hope I never end up as old and fragile as my friend was.

Thank you all.

I'm glad you feel a bit better supernan. It's very hard to see anyone suffer and to feel helpless to do anything, especially when it's someone we are close to.

Thanks Jane.

Thank you for that jane. I do hope I can turn a corner soon as it is very upsetting. Yes you are right is is very hard to see someone you love suffering when there is nothing you can do except be there for them.

I believe in euthanasia and so maybe I should not be commenting but anyone who honestly believes that the sort of suffering that has been described on here is ok, must be without feeling in my opinion

Has anyone said they think it's ok yoga?
Actually if you want to talk about euthanasia or even assisted dying, personally I think it would be kinder to the OP and anyone else who has been involved in end of life care for a loved one, if you started another thread.

Just a footnote to the conversation - the practice manager rang me yesterday to say that it has been decided that the GPs at the surgery will in future prescribe end-of-life drugs in cases where their patient's death is imminent.

The practice manager told me that her young daughter suffered a pleural effusion before her death, so she fully understood what I was talking about.

I appreciate there is a cost implication in all of this, but quite honestly anybody who thinks the cost is more important than preventing the trauma that my neighbour went through should walk a mile in my her shoes - or in mine.

Thanks for listening.

I'm so glad that you feel better and that something positive is the outcome. A dear friend has just lost her husband and she is wondering when she will start grieving as all she feels now is absolute relief that the last two months of suffering is over for them both.i am interested to know that it takes a few months.

when my friend was dying of bone cancer (at home) the GP refused to allow her a morphine pump because 'it would be addictive'(!!!) She was still taking oromorph orally 24hrs before she died - when he eventually relented. It was horrendous. That man will never be forgiven in my book. Such different care to another friend in another practice. She had a very well managed pump for weeks before she died and was pretty comfortable and able to live an almost normal life until the last couple of days - such a lottery.

Granarchist - have you considered complaining to the GP surgery or to the GMC? Doctors shouldn't be allowed to force people to suffer at the end of life. A call or email to the Practice Manager would be the first point of contact - or maybe this happened too long ago?

I feel better since I contacted the surgery about my friend and got some sort of result - it made me feel that at least I might have made another patient's end a bit easier.