End of life plans

Hi all

Difficult subject I know!

I've tried discussing a do not resuscitate order and where my dad would like to pass away with my dad, unsuccessfully! He doesn't want to discuss 

Now I've just had mum in tears because their is currently a discussion on lbc radio about DNR

Mum and I have just decided I will ask my counsellor at the hospice today to come round and discuss these issues with us all together

Any advice please on these subjects greatly received X 

27 Replies

  • I have no advice as need to have this convo myself but send lots of love. Asking the counsellor to come round sounds like a good idea to me xx

  • Thx u x

  • My hubby was the same, would not discuss the future at all.  It was Hospice staff who got him to sign the DNR and complete a booklet, "My Advance Care Plan".  She was a nurse, not a counsellor but she was so kind but also matter of fact. She said it wasn't a good thing to talk about but it was inevitable for all of us so it's better for our loved ones to know what we what. We have had the Advance Care Plan reviewed annually just to make sure he is still ok with it.  I'm sure the hospice will help your dad make the right decisions for him.


  • Thx u 

    I'll google advanced care plan x

  • This is a difficult one. Some people just don't want to discuss end of life, others are comfortable with it.

    Sometimes it's easier for a professional to raise the subject and often it is better to do it over a couple of brief'ish sessions.

    Session one to open the area up and give some information about some of the clinical conditions which might be extant at end of life and how the hospice would always provide good palliative care no matter what. Also to ask whether the person has any beliefs which might guide their decision.

    Session 2 to reinforce the good palliative care and ask if they would like to discuss it and consider their options.

    Finally that the decision can be made or unmade later.

    A professional talking quietly with confidence and with an open manner sometimes makes it easier for folk to go into that area.

    I hope this is helpful.

  • Very helpful thx u x

  •  I have done mine but carer won't sign it as it's a personal document.  Now have to find someone who will. I had just moved up here when diagnosed so know few people.

  • The hospice and I having been trying to get S to talk about this, without any success.  Last time, he was taking part, got him to the doctor, to fill out the forms and he switched off and wouldn't talk. So it got left.  There doesn't need to have these forms completed. Your Dad is going to have to trust you and the medics to right by him. I would get the hospice to deal with it, they might get a better reaction.

    Lots of love


  • Thx heady

    My plan is to get the hospice involved

    Hard isn't it actually isn't everything?!!!! X

  • Yeah!!!

    Lots of love


  • The hospice staff are really good with these tricky topics. My husband found it really helpful to make some of the decisions and record them in an advanced directive of refusal of treatment which was facilitated by a palliative care consultant. It actually

    Gave him and still gives him a sense of control, which PSP takes away.  Good luck do appreciate we are all different so there is not a one size fits all approach. 

  • We also asked at the Hospice. We had three sessions with a counsellor. It was relaxed. We have the Advance Care Plan. They set it all up. 

    Mind you my husband and I always could talk about these things and he was fine. love, Jean x

  • I started. A reply and lost  it so here goes , you might get two replies lol .

    The Parkinsons nurse referred us to the palliative care nurse who then spoke to the go about DNR.  I was quite upset at the time thinking to was talking about imminent end of life . I felt she thought ,that I wasn't accepting it   .

    It's always at the back of my mind but for now the aim is to have a normal , if you can call it normal life, as possible .

    She came to see us twice and after talking to us the second time got the GO to come and I signed the DNR for John with his permission of course .

    Its kept in the front if his care plant older now and I don't even think about it ,

    My worry was that if didn't wake up one day or John became unresponsive , which he often is for a few days , he would end up on a trolley in the hospital corridor !!!!!!

    We Didn't get the booklet NannaB. 

  • I wish I had had the strength to discuss this with M when she could have contributed.  We at least arranged wills and POA at time of diagnosis when M could talk and discuss.  I am on my own now trying to pre arrange funeral plan something M never wanted to discuss but too late now for her to contribute.  She is not dead, far from it I hope, but can no longer speak or communicate.

    The DNR was suggested by hospice over 2yr ago but our GP disagreed it was needed at the time but would discuss and arrange when needed.  In Feb this year, when M was having a difficult time with a chest infection, the GP was here and suggested it may be time for the DNR, she explained the reason for the DNR and how it could help.  M agreed for one to be raised, now she is in a home they have it but will only use if I give say so.  DNR is a process to help near the end to stop any invasive intervention.  It does not mean withdrawal of food, water, or meds and can include increased pain relief.

    Discuss with a health professional you trust, usually a family GP.  Our GP had a specialist palliative care nurse with her to help put in simple terms and very careful to debunk the myths around DNR and end of life pathways.

    Good luck Tim

  • I did this early on in his disease. We went to an elder care attorney to update wills, get information, etc., so the DNR became just one of the routine  documents , not standing out on its own. We BOTH did this at the same time - I have a DNR, too,  so I think it helped diminish the reality to Bob at the time. 

  • I filled out an advanced care plan for my husband last year and with advice, help and understanding, put in a DNR order into the care plan.It is not something that is set in stone and can be changed at any time, which of course it should be.

    DenB x

  • Thx you everyone for your replies

    As always very helpful

    Although a very tricky subject to discuss I appreciate X 

  • DNR is a difficult and very upsetting thing to discuss with loved ones.  My husband is a doctor and has told me that DNR decision can be taken by Doctors.  This takes away the stress and guilt of making such a difficult decision. I don't think I could discuss this with my mother.  

  • We attended a talk by an ambulance crew man recently.  They have just installed a defibrillator in our street.  He left me with the feeling, that it is only any good, for someone, who is fit and healthy, but heart suddenly stops.  I think he was looking at the audience, thinking, most of these should not be revived.  Nobody talks about the damage done by resuscitation, or the very poor quality of life that would be given back, if they managed to save the life.  By (UK) law a crew have to give AR, no matter what state the patient is in.  That's why everyone is so keen to get us to sign DNR's.  I think it's about 2% of people, get back to full fitness.  Seems hardly worth the effort!  Let's face it, if the heart stops, it's for a very good reason!

    On that depressing thought......

    Lots of love


  • I'm with you, Heady.  I think younger people can have a good quality of life  after defibrillation and know people who have survived well.

    But I also think there is a time when we need to hear what the body is telling us. The problem is in distinguishing which is which. A DNR helps them recognise which side you may be on.

    Depressing indeed !! 

    love, Jean x

  • Wow

    That really hit home heady and will make jolly good advice for my dad!

    So thank you, again!

    Only gotta get him to listen n not shut off which he is becoming quite professional in if he doesn't want to talk about something or in fact do something! X

  • Sure your Dad and S aren't the same person?????

    Lots of love


  • Lol

    Just both stubborn buggers I reckon X 

  • We are having these issues at the moment too so I can sympathise. Mum currently has no paperwork on this but we are seeing the neurologist next week and am hoping she will go through a living will/advanced directive with mum. The POA paperwork has been sitting there half done for over a year now, aggravated by my sister suddenly deciding to take an interest at Xmas and slyly taking all the paperwork home with her without my knowing. Then eventually returning it untouched as she realised it's difficult to fill in and as she's bankrupt can't be POA anyway! Although she kept the will and insurance papers.. I digress, here's a link to an article on DNR orders, I saw a good documentary on this issue once too but can't find at moment, I agree with heady, resuscitation is only for the young and strong with freak heart issues. The trauma is not worth the outcome for elderly or terminally ill patients I don't think. But getting loved ones to agree might be different matter. I thought mum wouldn't want peg or resuscitation etc but I think as the prospect of death hits home it's natural to try to cling to life, and she decided yes. She also frequently says she wishes she was dead which is upsetting for her and me but I know she does not mean it. I even said last week after she was having one of these moments if I offered you a pill that would put you to sleep forever tonight would you take it and she said no. Although I know not everyone feels this way. There are two very good but difficult viewing documentaries on these issues I recommend, 'How to die: Simons choice' (a man with MND that wishes to go to dignitas) and 'filming my father in life and death' (a man also with MND that chooses to live for as long as possible). I'm perhaps being overtly morbid but I feel these are compelling viewing for carers of PSP and other such conditions. Anyway I'm waffling on as usual, I can never seem to be succinct ! But best wishes to all xx 


  • Thx u kelly

    I'll watch them

    Agree they try to cling on

    Mad business isn't it? 

    Oh yeah sounds like you have a very naughty sister!! X 

  • One of them is definitely on you tube but the other is a bit more difficult to find unfortunately. Yeah definitely is a mad one, frustrating and upsetting for all concerned. Naughty is one word for her, my word is a bit more after the watershed! Haha X 

  • I'm a bit late replying - sorry. Our hospice started talking to Bugs about this fairly soon after she started attending. It began with the advanced care plan booklet which was completed by a nurse who visited us at home. A couple of weeks later the subject of DNR was raised and the form completed. Then, a couple of weeks ago the Chaplain visited to discuss funeral plans - music, readings, venue etc. Nothing is cast in stone but it is a great help to know what Bugs choices are.

    The hospice team are likely to be the best - no pressure from them and they seem to be able to make all the time necessary whereas GP etc are under so much pressure...

    Best of luck

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