Hi all, my dad has been home for two weeks now, having been fast tracked. It turns out he should have an end of life plan in place, but he hasn't. I spoke to the neuro nurse who informed me it must be done asap as he could need it any time. No one has signed his DNR so it's not suitable for use in community and if ambulance or GP think he should go to hospital, we won't be able to stop them. SO I've arranged for GP to come tomorrow and talk through end of life plan. I asked if this could be done away from my dad (we can go in the kitchen) but he said no, my dad must know all about it. He said the Macmillan nurses will not come unless the patient is fully aware of what's going on?????!!! Do we really have to distress my dad with all of this for Heaven's sake? Has anyone come across this before please? I thought I'd experienced the full range of NHS stupidity and lack of respect, but obviously there is more...
End of life plan: Hi all, my dad has been... - PSP Association
End of life plan
Yes, there were several distressing conversations about the DNR order undertaken in my sweetheart's presence and, yes, it bothered him. I interrupted when I could, but he did have to hear it and understand, and I had to assure him that it was something we all had to do at some point. When he was able, I had him sign a form giving me his health care power of attorney, and there were no questions after that. It hurt and startled him when the visiting nurse said in front of him that she was there to provide hospice care, rather than the home care I had said I was setting up. I wish she hadn't. I think it took some of the fight out of him, but then, it wouldn't have changed the end by much, I suppose.
My husband’s end of life plan and DNR was completed soon after diagnosis. I approached it by telling him what I would want at the end of my life and the hospice nurse said what she would like to happen as well. I told him it was for when the time came but as he was newly diagnosed, wouldn’t be needed for ages. I’d advise everyone to discuss it as soon as a life limiting illness is diagnosed ( or before!) rather than leave it until the inevitable is imminent.
I’m sorry you weren’t told about this before and it must seem harsh but all of our lives will end one day and it’s better that our wishes are known and granted than not. If a DNR is not in place, medics are obliged to try and resuscitate even though there may be no quality of life if it is successful. I was talking to a friend this morning who, exactly a year ago had to drag her 87 year old husband from the bed to the floor, knowing he had died, and give CPR until the ambulance arrived, receiving instructions from the 911 staff memeber. She knows he died then but the medics started his heart again and he officially died 2 days later without regaining consciousness. She is over 80 and she said the biggest regret was not getting him to complete a DNR after his first heart attack. She has never got over the trauma of what she had to do.
My own dad was nearly 97 when he had a chest infection and the nurse at the Hospital asked me if he had a DNR in place. I said he hadn’t and she asked if I wanted him resuscitated if he died. I said I didn’t so she asked me to speak to him as he was still conscious. I was dreading it but told him I loved him and didn’t want him to suffer anymore and when the time came for him to leave us, did he want the doctors to try and bring him back. He said no and shook his head. 2 hours later he left us.
I hope your dad isn’t distressed about what he hears tomorrow. He may even be relieved. My darling who left me a year ago put his thumb up when the GP asked him if he understood that if he refused food and water through his PEG he would die. He understood perfectly and his thumb went up when I asked him if he had had enough and wanted to go.
I’ll be thinking of you all tomorrow.
Sending you a big hug.
XxxX
It is a subject I introduced very gently when Ben was first diagnosed and discussing his wishes now is not a taboo subject. The hospice staff were the ones who steered us through this subject and Ben had to be present at all times to ensure he understood exactly what he was giving permission for. His DNR is sitting on the hall cabinet for easy access as is his Advanced Care Plan. I'm sure that your Dad would be thankful once the subject has suggested,it doesn't have to be harsh and clinical. Once the the discussion begins it will become a more natural conversation. I intend to put my own DNR in place when my caring role is done, I also intend to discuss my wishes with my children and get an Advanced Care Plan to make my wishes known. It's a pity this isn't common practice and it would make things much easier. I hope it all goes well tomorrow, I'm sure you will all be relieved when things are sorted.
Love kate xx
I am a retired nurse. I worked 14 years in home health & hospice. From reading the various responses, I wonder if we all live in very different locations. Laws regarding End of Life Care & DNR can vary. My husband & I had our Living Wills written up 5 years ago. At the time we were both fairly healthy. It says that our spouse, and then daughters, can make end of life decisions if we are unable to do so, with guidance from a physician that agrees that the patient is terminally ill. In my state, the EMS is to start CPR until arrival at a hospital. Showing them a written DNR order doesn't change anything. As a hospice nurse, we accepted patients who did not have living wills, etc. Our team was to guide the patient & family through the process. Part of that included included information about what EMS would do. As patients came to terms with their inevitable death, they usually filled out the form, or at least for a family member to make the decision. Family and agency staff are not allowed to act as witnesses in my state.
I went through this with my father. He didn't want to discuss this. But he did make me his health care power of attorney. When the time came to declare him a DNR, I was 1,000 miles away. With the doctor, my brother, and a qualified witness each on phones, I made the necessary statement .
I have had two experiences where the family was called and gathered first and said goodbyes and washed the loved one, then made the call. I think in my state the paramedics will start resuscitation if there is no DNR - unless - certain conditions are present that would indicate their efforts would be futile. EMS may have different rules than the Paramedics.
It was explained to me that the Power of Attorney can be overridden by the Dr. anytime. It is most useful as a note designating to whom the Dr. is to address - especially, if there are many family members causing confusion.
What a horrible event with NannaB's friend.
When my brother passed early in the morning - all 6 remaining siblings were called and able to arrive quickly. We cranked up his favorite music - Annie Lennox ~ and shared in tequila shots before calling even the Hospice lady. She wasn't happy, but, oh well. She called the police/coroner and my brother went out the door with Annie singing and with a tequila toast from all.
That is oddly nice, Alicia. Not a tequila fan, but I raised a glass of the best, oldest Scotch I had before calling.
As soon as my dad was diagnosed with PSP we were advised to sort out power if attorney, which I did, advanced care plan came a bit later when drs in hospital talked to us about it, as my dad has recuring chest infections. It was such a sad conversation for me but my Dad was so matter of fact about it. Maybe it's easier for them than we think. My dad is 83 & isn't worried about dying. It's me that struggles with it. Everyone is different but hopefully you can take snippets of Advice from all these replies. Xxx
Very simply, yes, your dad has to be present and fully aware of what is being explained to him. The hospice doctor went through it all with my hubby and when he was able to speak told her NO peg, DNR in place, No returning to hospital. It was explained in great detail and done very caringly and gently with the doctor holding my hubbys hand all through. Very hard but very necessary. I feel for you. Love Jx
I am sorry, but it is needed. When Steve was dying, they wouldn't even put a driver in, to make him more comfortable, without seeing his DNR. Unfortunately I had left it at the Nursing home, from his last respite visit. Great fun, trying to get it at midnight on Christmas Eve!
I am surprised that nobody has been advising this, a long time ago. One of Steve's first visits into hospital, I was taken into a little room, to tell me this needed to done. I know you have enough on your plate, but get it done. It will be worth it, come the end.
Sending big hug and much love.
Lots of love
Anne
Great advice from everyone here.
Unfortunately again the health professionals haven't thought to advise you on this over the last few months whilst in hospital. Our local hospice hasn't done this for Mum, even though I've asked repeatedly. I do now have DNR though and an advanced care plan with her wishes but not the advanced directive on what treatments she does or doesn't want. I am the PoA though.
It is hard conversations but your Dad does need to be present unfortunately but I hope the Dr will do it compassionately. Is your Dad able to indicate his wishes to you before the Dr comes?
Hi Sasmock
I did my Dads advance care plan including DRO order with Dads gp, the gp came and spoke to dad first then I went to the surgery to go through and finalise everything. Luckily I did this ‘just’ in the nick of time, whilst Dad still had ‘full’ capacity! Also when mum was in hospital I arranged, through the gp for Macmillan nurses to come in 5 out of 7 nights, Dad didn’t have to agree with this, the point was, I desperately needed ‘some’ sleep/down time and at the time, Dad understood the need for extra help, once I explained. Personally I think your gp sounds like a jobs worth.....
You should be very proud of yourself with everything you do!! Well done you!! It’s not easy I know ❤️ X
Like others these issues were all discussed soon after diagnosis at the hospice. We have never had a problem talking about death but it is easier when it isn't imminent. Of course he needs to be involved. Its his death and I can't believe he hasn't thought of it. Saying it aloud is often the problem. Its a painful process.
love, Jean x
As I read the comments, the difficulty that many of us have shared, in discussing the Health Care Directive with our terminally ill loved one, perhaps (since death is inevitable for all living things, especially us humans) we should EACH have a Health Care Directive on file with our physician. This might help to spare/avoid the anguish for our loved ones (who will be our future caretakers).
I live in Los Angeles, CA., and am insured by Kaiser Permanente. I am 77 years old, the mother of a 55 year old son that I recently lost to PSP. Both he and I had filled out the Health Care Directive with Kaiser way before PSP came to visit. The DO NOT RESUSCITATE, that we taped to the refrig, was done after he received the DX of PSP, a terminal disease.
My father also had one. My mom was resistant to accepting that death comes to us all and refused. My father was alive and in charge of her care. I never asked how he handled it.
Death is difficult.
Each of us, father, son, me, shared with each other our wishes, which by the way, led to a discussion on our choices for burial vs cremation. My desire is to be cremated, so was my father's and my son's. My daughter expressed her wish to have me buried so that she might visit my plot. I then expressed to her that my desire was for cremation, but if it comforted her for me to be buried, she had my blessing.
My prayers are with us all.
Thanks everyone for your comments. We weren't advised properly about end of life plan - we thought that the DNR in hospital was all that it entailed. The consultant took us in to a side room and did that bit, but didn't mention anything else. As dad had already lost capacity at that point, we thought there was no need to discuss anything else in front of him. He can't talk, and can only respond in a whisper, yes or no, and frequently gets those mixed up. Other than that, he seems calm, peaceful and sleeps all the time. He's eating less and less now and hardly drinking anything. Is it unreasonable for us to just let his care take the path that it needs to without telling him what's going on? Surely it should be individualised? If he hasn't got capacity, I really don't know why the GP is going to talk to him. Still really upset about this. They let us make the decision not to have a PEG tube on the basis that he was at risk of inaspiration - they didn't talk to him about it. Now, just because we want a valid DNR for home, why do they have to drag all this up at such a late stage? They didn't do it in the hospital when we agreed to the DNR then. I'm genuinely confused! My mum knows he wants to be cremated- what else is there to agree to?!
Oh I should add this is the same doctor who refused to sign dad's POA - he said he 'doesn't get involved in that sort of thing'.....
I think when GP comes tomorrow tell them he doesn't have capacity and you do not want him distressed if there is no need to. I have PoA but everyone still talks in front of Mum. I actually don't know if that is right or wrong of them.
If he isn't able to indicate his wishes and the Peg decision was made on his behalf you can tell the GP that but sounds like not the most helpful of people so far .
Chris was being nursed at home. I had all the documents but never had to refer to them. They accepted that he didn't want to go back into hospital.
But the palliative care was set up before he left hospital. I'm so sorry you are having all this stress when the focus should be on your dad having a peaceful end.
Why can't common sense prevail !!
love, Jean x
Hi there. One of the first things our hospice nurse did when she visited for the first time was ask ger, in quite specific but sympathetic words, if he wanted resuscitation and waited for his thumbs up/thumbs down answer. He said no and i have only ever been asked about it once.
Marie
Thanks for sharing all of your experiences, it's helpful. Just spoken to hospice and was told that GP must establish capacity before talking to dad. It may be that he was intending to do that anyway, but it's not how he explained it to my mum. So I've written a letter and left it there, with strict instructions to read before talking to dad, in case I'm not there when he arrives. Hospice manager has made a referral to Macmillan nurses without even seeing my dad. I'm so confused! I was told yesterday that this couldn't be done without discussion with my dad. Maybe it's ME going mad! I need to lie down in a dark room for a while...
When writing our wills years ago, we discussed what we would and wouldn't want under various health crisis scenarios.
I have this sort of conversation with friends from time to time and I have yet to hear anyone say they would want a terminal illness dragged out into a long, slow, miserable death. I think if everyone becomes comfortable talking about death, which is inevitable, when you are aging but healthy, it is much easier to bring it up nearer the end of life. Hopefully the topic of the DNR broached by professionals who are trained to phrase it well and with compassion, will also help.
I would suggest voicing your preferences with all members of your family early on, so that your children know your wishes and are not put in the position that Sasmock now faces.
My husband, Jim has PSP and it's to the point now that he is having difficulty swallowing - thickened water, food, drinks, etc. He had in his life plan, the DNR and NOT to use the Peg Tube feeding as it would just prolong the time of suffering and it wouldn't do any good in the future for the PSP. Now he has lost so much weight and one of the throat therapist suggested the Peg Tube. She should have read the "Life Plan" before blurting out this option to my husband. Now we have to deal with him changing his mind and the uninformed therapist sure put us in a difficult situation now. We all (my children and I ) are just upset. I hate this PSP and all the problems it causes. My definition of PSP is - Poisoning Special People!!!! Thanks for letting me "rant", here in Minnesota.
I'm so sorry. That is exactly the situation we were in. Fortunately the dr. spoke to me and agreed with the decision. Chris died peacefully.
It is a delicate situation for the family, even when you are all in agreement, as were.
Jean x
That GP is disgusting,,,,,,,,,can't believe Mac nurses take that view..........my wife has PSP but doesn't know it.........i insist that any medics/social workers do not mention the condition.........put your foot down.........best of luck x
Quite frankly all I can remember is that the discussion was about he and I , not just about my husband. We talked about the PEG, he wanted it. We talked about DNR though I rescinded when he went into the hospital for pneumonia, The drs said " we just need to drain his lungs" ...and he was in pain....But when he cam home he was on morphine and hospice and no more hospital. Anyway I feel very good about what everyone has said and I really cannot add any other. I wouldn't worry too much about your husband wanting to rescind the no PEG order at this juncture....
God Be with you
AVB
End of life
PEG tube dementia/PSP - end of life
Plan B
Deterioration since Thursday
