1. whendoesitend

    whendoesitend Registered User

    Mar 15, 2012
    Hello all,

    Does anyone else have any experience of anticipatory/just in case medications being prescribed but not actually present for end of life care?

    My grandfathers doctor was never brilliant, he had to regularly be essentially forced by management of the home to come out when needed and often point blank refused. As annoyed as we were by this we did accept that it is unfortunate but it is extremely common for doctors to be like this with care homes and once over a certain age it is very difficult. The care home told us multiple times that his doctor wasn't the only one like it - infact they didn't have any doctor on their books for the residents that was different. We also have first hand experience as he used to be our doctor and a medical condition that I had had for 10+ years without any success of solving from him was solved within 3 weeks of moving. He also told me that my allergy to pollen was down to my weight and losing a few pounds would help it.

    The unfortunate thing was that Grandad knew him/trusted him and he was a 'familiar face' so when he had capacity he refused point blank to change doctors and we respected his views.

    The anticipatory medication was prescribed for my grandad on Monday morning as he hadn't really recovered from 3 days worth of haloperidol that the doctor had given him after he'd become aggressive. The haloperidol really hastened the end and clearly wasn't suitable. The staff were horrified at the change. (The care home told me they just wanted further mental health support put into place but the doctor overruled and prescribed the haloperidol that just turned him into a zombie and stopped him eating/drinking/being able to communicate even slightly and more) We were assured it was put into place and that it would be ready when things progressed.

    Admittedly things progressed quicker than we thought they would as I was called 11pm Monday night because his skin had mottled and he was cold to the touch and was panting like breathing. When I arrived half an hour later he was really obviously distressed and in agony though unconscious. He had been given oramorph but they told me that his anticipatory medication wasn't available. I asked for Rapid Response to be called as he clearly wasn't comfortable and was crying in his sleep/unconcious state and grimacing and they said that they couldn't do anything as it wasn't there - but did authorise a dose of oramorph every hour to keep him comfortable. Thankfully after the rest of the hour had passed (after the first dose) - and a further half hour ish (after the second dose) he finally calmed somewhat and remained 'asleep' until he passed at 3.40am. (much more suddenly than we all expected).

    We are in two minds as to whether or not to make a complaint about this as it was horrific to witness (especially as it was clear from the mottled skin/breathing/fingertips going blue) that the man was dying and heartbreaking to think of what he was thinking/feeling at that time too given he was literally crying. We don't want it to happen to anyone else!

    However my sister in law is a GP approx 60 miles away from where we live and she said that sadly it isn't unheard of for it to happen like that and given that it was so quick after being deemed end of life care it was always likely that the medication wouldn't be there (but there was a good few working hours of the doctor/pharmacy day left and it was emergency meds!) She agrees that it was wrong and horrendous for him to die like that - but says she isn't surprised that it did.

    Has this happened to anyone else? Is it more common than we'd like to think?

    Thank you :)
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello @whendoesitend

    It sounds as if you have had a really traumatic experience witnessing your grandfather`s final days and it`s quite upsetting to hear your GP sister in law believes it is not uncommon.

    The worst that happened to me was having to wait for two hours until the district nurses were available to put a syringe driver in place and that was upsetting enough because it was obvious my husband was in pain.

    Whether or not you put in a formal complaint depends on your strength and the admissible evidence you have of neglect.

    Personally I would let your grandfather rest in peace and allow yourself peace to grieve too.
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    You can raise this with the care home, & you can contact the CQC & let them know how distressing this was.

    it is negligent to not meet care needs & the Doctor had a duty of care.
    If you feel that you need to voice your concerns then you must do that.
    You won’t always be aware of any resolutions but will know you always did your best for your family member.

    Grieving is a personal journey & if you need resolution on this matter to enable you to grieve then that is the right process for you.

    Calling out in dementia is a common experience for families to witness with certain forms of dementia. My own Grandad screamed til the sedatives gave him peace for a brief time before he passed. It’s to do with complex issues with the area of the brain that controls communication. Like faulty wiring , sparking away.

    My own daughter has found it hard to accept her Grandad is dying & as this is the first time she’s been closely involved in the care of a terminally ill person it’s a new experience. I can understand how you feel, but talk to your relative that’s a GP after the funeral, if they felt needs were not being met then they would have the knowledge to help.

    Sometimes no medication in the world can stop the inevitable, & sadly dying is a process as individual as each person.

    years ago from a young age you saw death regularly. It’s uncommon now to experience & not always the peaceful passing we had expected to experience.

    Grieve for your Grandad & don’t let these harsh distressing last moments be the defining memory of someone you clearly adored & adored you

  4. whendoesitend

    whendoesitend Registered User

    Mar 15, 2012
    Thank you very much, I genuinley don't know what I'm going to do just yet. My brain is too fried.

    Than you for your help :)
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    you are allowed to feel fried! It’s a lot of people’s go to daily setting on the forum.

    Try & take some time going through pictures of your Grandad in healthier times
    - x
  6. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    I am glad that my own mum died in hospital & that I could ask for extra medication that was given when she appeared to need it - your experience does sound horrendous & I’m so sorry you had to go through that.
    Hopefully your grandad although crying out was not aware that he was distressed but of course it is distressing & traumatic for you & I’m personally horrified that a dr could just disregard a request for end of life meds. I do hope you find some resolution xx
  7. Karen22

    Karen22 Registered User

    Nov 3, 2012
    My dad had anticipatory medication put down on his notes about this time last year by a nurse in the nursing home he was then in but, when it came to his end, they weren't used and the hospital where he was in May really ****** up his final days. I am left with this trauma with which to come to terms. I have been told that there is no reason for anyone to die in distress but I feel this is far from the norm. I believe that the hospital where my dad died was responsible for his demise as it was a bank holiday weekend and so only a few junior doctors were around who hadn't seen dad previously. He and I were treated appallingly.
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    CH seem reluctant to give oromorph as prescribed. Maybe it’s litigation that worries them. EOL is mainly sleeping & being kept pain free is a Essential part of that process.
  9. minet48

    minet48 Registered User

    May 23, 2014
    My sincere sympathy whendoesitend. I was so sorry to read about the passing of your Grandad. It may be wise to wait until the initial shock of the trauma of it all has subsided and to discuss it as a family before making a decision that hopefully all are at peace about. I don't think there is a right decision except the decision that is right for you. You have been through such a hard experience and the ultimate unfairness would be to feel under pressure either way. If you do decide to go ahead with a complaint I would hope that notice would be taken - especially with a GP in the family. Too often relatives are blinded with science. I know I have been in other circumstances. I really wish you well.

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