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Very interesting discussion on End of Life care - join us

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  • FireFire Posts: 19,092
    Quoting @ZeroZero1 below


    Advanced Directives (see below for new terms) are very good, but the staff involved need to know they exist - unfortunately in the NHS  records are often not transferred with a patient, though, gradually this is getting better in patches.
    Many nurses don't even know what an advanced directive is (I know I am a retired nurse) and many patients don't get ever get asked (have you?) . I am a retired nurse, I once conducted a campaign to ask all patients on our units about this option but the campaign was unsuccessful - we had no uptake.  I don't know objectively, but I came to the conclusion that for heatlhy adults it's too easy to put these decisions out of your mind. Frankly, I am doing this myself! 

    Any statement by a patient in regard to end of term care is technically an advance directive - you don't need to be a legal eagle. 

    Basically, the NHS should  try to comply with the patients wishes providing they are within the law but.....

    a] Those dealing with the care need to be acutually aware of those wishes (no good if they are filed away somewhere esle) and...

     b] There is a tsunmami of often conflicting beauracracy around these matters. here is a taster of what staff have to consider: 

    https://digital.nhs.uk/binaries/content/.../confidentiality-guide-2013-references.pdf

    Even disclosing the existence of Advanced Directives to relatives is difficult. Not all relatives are sympathetic and supportive (as the stereotype suggests) and not all patients would wish to share this information with all of their family. 

    Rule of thumb is to make your wishes clear, in writing preferably and let the NHS consider the matters and respond.

     
    Advanced Directives are now called Advanced Decisons and Advanced Statements - clarification here; 
    https://www.nhs.uk/conditions/end-of-life-care/advance-statement/


    In the UK there is also Power of Attorney over care, which is best to set up early if you can. This gives relatives more influence over care . The forms are not that daunting (you may not really need a solicitor) and they can give you more sway in the final days 

     https://www.gov.uk/government/publications/make-a-lasting-power-of-attorney

    During my career as a nurse, I have seen many deaths,  personally I object strongly to the religious position that all life should be preserved at all costs. That's all very well until you see the suffering this can involve. The argument that moving from this position could lead to abuse by relatives, is wrong. Though this might happen in rare cases, it is not beyond the wit of human beings to bring in sufficient safeguards. The present position leads to untold non-consential suffering even by persons with no religious convictions.  

    You might not wish to read this next paragraph, it's horriific to imagine, but incommensurately more horrific to endure. 

    I remember a woman with severe dementia (for years) doubly incontinent, unable to move or even feed herself, did not know her own name, with gangrene running up both feet, in extrmeme pain, despite morphine she did nothing but writhe and cry. I was dressing her wounds and her toe dropped off in my hands. I won't give more details but seeing this I fully realised  then that to preserve all life  under all circumstances is flatly wrong. The prayer's of the minister (which I had arranged) were doing her little good.

    I am a humanist, and I know that our national group Humanists UK are running a campaign to change the law on this matter. https://humanism.org.uk/campaigns/public-ethical-issues/assisted-dying/

    I hope the law changes soon

  • DovefromaboveDovefromabove Posts: 88,139
    josusa47 said:

    ... I don't know enough about medicine to know whether a situation can occur in which a dying person could be in such pain that the only effective dose of pain relief would be a fatal overdose. 


    As I understand it, that can be the case ... the  increasing dose of morphine necessary to alleviate the increasing pain of organ failure and starvation will eventually become a fatal dose ... that moment may or may not coincide with the moment when the person would have expired without the morphine but the likelihood is that the morphine may hasten death ... to be honest I don't give a damn whether the morphine or the organ failure killed my mother and I know for sure that Ma didn't either.  She was 93, she had severe Alzheimer's, a bleeding tumor in her colon and her organs were shutting down ... she had a peaceful end ... without the morphine it would have been hell on earth. 

    She was a committed Christian, a lifelong Methodist and I know that she would've thanked her God that he had given her a compassionate and humane GP.  

    Gardening in Central Norfolk on improved gritty moraine over chalk ... free-draining.





  • Hostafan1Hostafan1 Posts: 34,888
    edited July 2018


    She was a committed Christian, a lifelong Methodist and I know that she would've thanked her God that he had given her a compassionate and humane GP.  
    My mother was a committed Christian until just before she died.
    " Why won't God just take me now?" she said over and over until she finally said 
    " No God would have made me endure this"
    Devon.
  • Hostafan1Hostafan1 Posts: 34,888
    Fire said:


    @Hostafan1   " I was in constant pain for 18 months, screaming in agony. I was on morphine for 6 months and still had to crawl on my hands and knees to get up stairs to bed at night."

    Why were they not able to manage your pain better and why were you in a place where you had to crawl upstairs to bed?
    .......


    Answer to the pain issue: I don't know.
    Answer to the stairs issue , I lived in a house with bedroom upstairs. For 3 months I virtually lived upstairs so I could use the loo( upstairs ) without going up and down.
    Hubby used to leave me breakfast / lunch and flasks of boiling water to I'd not have to come down during the day.
    Devon.
  • DovefromaboveDovefromabove Posts: 88,139
    My question would be why the heck did you have to wait 18 months to have your hip op?  :'(

    Because successive governments refuse to be honest with the electorate about the true costs of the NHS.  :#  Why on earth they think the electorate wouldn't be ok with increasing taxes (ring fenced of course) to ensure that the NHS can continue to function as the electorate expects it to is beyond me  :s

    Sorry ... off on a tangent there. 

    Gardening in Central Norfolk on improved gritty moraine over chalk ... free-draining.





  • Hostafan1Hostafan1 Posts: 34,888
    edited July 2018
    The procedure I needed  ( periacetabular osteotomy) was only performed by about 6 surgeons in the whole country at that time.
    I was once told ;
    " If you lived virtually anywhere else, they'd have put you in a wheelchair and given you morphine for the next 20 years then given you a hip replacement" 
    Devon.
  • FireFire Posts: 19,092
    This is off topic, but Hosta, out of interest, as a world traveller, did you ever explore finding a surgeon in another country privately. I have a friend looking at these kind of options.
  • fidgetbonesfidgetbones Posts: 17,617
    Fire, when I put the complaint in, several pages long, three months later I got a reply... This doctor (who refused painkillers)no longer works at this hospital.  We do not know why x happened or why y didn't happen.  Total whitewash. Lessons will be learnt. Ha .
     We took out a power of attorney for mum, after the doctors wouldn't talk to me about what they were or were not going to do to Dad.  (I was not next of kin, mum was. Mum has no medical knowledge, I do. ) All I can say is, if you have elderly relatives, get POA in place, and Wills drawn up.
  • Hostafan1Hostafan1 Posts: 34,888
    Fire said:
    This is off topic, but Hosta, out of interest, as a world traveller, did you ever explore finding a surgeon in another country privately. I have a friend looking at these kind of options.
    I didn't have that sort of money. Back then a hip replacement would have been around £7K, the PO would have cost £16K
    Devon.
  • AnniDAnniD Posts: 12,568
    Both my parents who are in their 80s have LPAs, l also have a copy of their wills. As an only child with a very supportive OH, l have found peace of mind, at least in this respect. His parents on the other hand, we have no idea. The subject has been brought up and dismissed out of hand. None of us know what the future will bring, so trying to make things easier at what can be a very traumatic time makes sense to me.  @fidgetbones , you have my sympathy , that situation was horrendous. 
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