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Difficult decisions regarding future treatment

GillP

Registered User
Aug 11, 2021
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I’ve been expecting the awkward question - do I want DNAR for husband in care home. My heart says no but my head tells me it is a sensible option given the problems linked with resuscitation. Then a question came which I was not expecting - if he gets an infection do I want my husband to be taken to hospital or treated in the care home? The GP added that, in his view, hospital is best to be avoided by people with dementia. He also mentioned quality of life, dementia is progressive etc.

I know what he means but these are huge decisions and I feel sick just thinking about the questions. Just wondering what views others have.
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,275
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71
Dundee
It’s such a hard decision @GillP. I know exactly what you mean about your heart and your head. My husband wasn’t in a care home. He lived at home with me and we had the support of carers so my situation was a bit different to yours. His last week was in hospital with aspiration pneumonia and I was asked the question then. I had to take the decision to stop any ‘heroic efforts’ and he died after 7 days - 6 years ago this month.

As I say, not the same decision as you are having to make but I wanted to share my experience.

Wishing you strength.
 

Pork Pie lady

Registered User
Mar 16, 2013
146
0
Anglia
Firstly I would say don't let anyone rush you into making a decision. Remember saying no now doesn't mean it cant be done later. Take your time and if you are not sure don't, just because it seems to be the sensible thing to do doesn't necessarily make it right for you/your husband. Do you have any family or friends you can talk to about it?

You also need to bear in mind that sometimes people change their mind. My husband said for many years that due to his various health issues he didn't want reviving but suddenly when he went into hospital last year and the possibility of it happening was a lot more likely something made me ask what he thought about it and he suddenly wasn't sure.

Not sure if this helps, what ever you do make sure it is because you are really sure it is right for you and your husband not because someone else has told you.
 

Banjomansmate

Registered User
Jan 13, 2019
4,173
0
Dorset
To my way of thinking it comes down to what is my loved one’s quality of life like? What do you expect the hospital to do and what would be the end result? Would you be trying to extend his existence for you or for him?
I appreciate this sounds harsh but I had the same talk with both The Banjoman’s GP and a hospital A & E Consultant and we all agreed that to keep sending him to hospital was not a good idea.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,464
0
Newcastle
This relates to my recent experience. Back in October 2019 I met with the GP practice nurse and we put together an Emergency Health Care Pla ton (EHCP) for my wife in her care home. When recently she seemed to be having difficulty with food and swallowing, worried staff acting on the advice of paramedics sent her to hospital. The A&E doctor noted that the EHCP made it clear that any treatment should be given in her care home under GP supervision. Hospital admission is specifically ruled out, on the grounds of potential deterioration and reduced quality of life. He questioned why she had been sent to hospital and - given that no treatment would follow - decided against putting her through the trauma of having blood tests. Happily he could find nothing wrong with her physically and she was discharged.

Hospitals and advanced dementia don't go well together but whether to attend hospital is clearly an individual decision based on specific circumstances. I am quite clear that it would not be in my wife's interests to attempt treatment that would prolong her life. Given her advanced presentation - and her settled and contented state - there would be nothing to be gained.
 
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jugglingmum

Registered User
Jan 5, 2014
6,342
0
Chester
My mum was admitted to hospital in Jan 2020 with an infection.

I was asked the DNAR question and readily agreed. The piece of paper was sent back with her and when she moved to her care home I made sure she had it with her.

Separately I was asked about IV antibiotics which I said I wanted for her. The nurse seemed surprised as she was curled up and seemed very small and frail. Within a few hours she was sat up and I was spoon feeding her cornflakes. She was still aware enough then to laugh at the role reversal.

Scroll on 2 years and she has declined massively although still content except for personal care. I suspect at her current base line if a Dr was aware of it would go for IV ABs but I'm not sure it's the right decision. To my mind she has very little quality of life albeit still mobile most of tge time and recognising me. Severe deafness hinders communication with anyone.
 

Jessbow

Registered User
Mar 1, 2013
4,338
0
Midlands
Then a question came which I was not expecting - if he gets an infection do I want my husband to be taken to hospital or treated in the care home

I'd be inclined to say I wasnt sure on that one. Surely it depend upon the infection/illness?
likewise if h fell & broke his hip- you'd decide at th time, you dont have to decide now, surely?
 

update2020

Registered User
Jan 2, 2020
275
0
I agreed to a DNAR and no hospital treatment for my husband after he’d been sectioned and massively disabled by antipsychotics. His dementia was very advanced. There was no way he could have coped with hospital and prolonging his life seemed very cruel. He had almost no quality of life left and was clearly in pain. Various times the question of hospital did come up but it was made all the more difficult because it was lockdown. He went once and was untreatable.

Even so, throughout the last week of his life I was asked daily if I wanted to stick to this plan and I could have changed my mind. But I didn’t. So I’ll never know exactly what he died of. They put Alzheimer’s on the death certificate. Fair enough because without AD (and the DNAR etc) he might have been blue lighted to hospital and still be alive. He was still young - not old enough to draw his state pension.

You might make a different decision from me. But I am fairly sure that the decision you make will not be final and you can change your mind. You could ask them about that.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,340
0
Kent
I think it`s best to make the decision for DNR when life is relatively calm, well before the patient is nearing the end of life, rather than in a crisis situation.

As far as hospitalisation and antibiotics are concerned, everything in the best interests of the patient is the best decision to help keep them pain free and as infection free as possible.

My husband`s end of life hospitalisation was a disaster because I was not allowed to stay with him and after a lot of heartache made an official complaint The care home was willing to take responsibility for his care and the district nurses were responsible for medication to keep him comfortable.

Of course this was well before covid reared its ugly head and my stomach still turns over at the thought of people with dementia in hospital when the family was unable to visit.
 

Palerider

Registered User
Aug 9, 2015
3,190
0
North West
Resuscitation requiures a team of expertly trained professionals to come together who are trained in Advanced Life Support (ALS), they will not necesarrily know first hand who it is they are rescuitating and why, but what they will do is proceed until they have evidence not to continue or to continue until they are satisfied it becomes futile. A DNAR stops this whole process in it tracks.
 

Duggies-girl

Registered User
Sep 6, 2017
3,356
0
Dad had a DNAR which I agreed to as POA He was 88 and very frail with dementia and cancer and any attempt at resuscitation would have been a disaster and plain wrong. He could have anything else to keep him comfortable. He had iv antibiotics when he had pneumonia, he had blood transfusions and an iron infusion. He had an oesophageal stent, an amazing yet simple thing that gave dad another two years of good quality life. All of those things helped dad live comfortably. He had nothing invasive or anything that could do him harm.

I agree that hospital is the last place dad should of gone.
 

Lawson58

Registered User
Aug 1, 2014
2,900
0
Victoria, Australia
Resuscitation if the heart stops involves as I’m sure you know nursing staff trying to restart the heart probably and believe me breaking several ribs in the process .even in a acute hospital sitution the chances are slim . Agree as above hospitals are not the best place for dementia patients . It’s very sad but I have seen how my mother in law father in law and my mum have been treated in hospital and it’s not good .
My husband had a cardiac arrest at home in 2013 and I gave him CPR until the paramedics arrived. I broke his breast bone and a couple of ribs but I am glad I did it. That was almost nine years ago and he is still here. What’s a few broken ribs if you can go on to enjoy your life for a few more years?

Now his general health is deteriorating but he has an implanted defibrillator so I won’t have to do that again. However, I may have to make the decision to turn his defibrillator off to let nature take its course. And I am not looking forward to that.

Having saved someone’s life by using CPR, I believe I have the right to say that generalised and blanket comments about resuscitation are irresponsible and unhelpful because until you have been there, in that precious moment of time, you can’t know what your reaction will be. Chances of survival after a cardiac arrest are slim but obviously bystander CPR is better than letting someone die unnecessarily.

Of course resuscitation is wrong for many people but that decision is highly dependent on their physical well being and potential to benefit from that course of action. And let’s not forget that interventions such as antibiotics are not invasive.
 

CAL Y

Registered User
Jul 17, 2021
362
0
My husband and I discussed and agreed to DNAR when he was first diagnosed with mixed dementia and still had the ability to understand what it meant.
Even though I knew it was the right thing and what I agreed to was letting nature take its course, it didn’t stop me from feeling like I had just signed his death warrant.
Fortunately, if that is the word to use, after a couple of years he was diagnosed with cancer and only lived for six weeks after the diagnosis.
I have never had any regrets about the decision and feel relieved that we were both released from a situation which was becoming intolerable.
 

canary

Registered User
Feb 25, 2014
18,895
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South coast
Whether you go for DNAR, or not having IV antibiotics, or not going to hospital at all depends very much on what they are like and what quality of life they have. Obviously it is going to be very different if you are talking about a younger, generally fit person with good quality of life, as opposed to someone who is older, frail or with advanced dementia.

What you decide now is not written in stone @GillP and you can change your mind later.
When mum moved into her care home I agreed to a DNRA for her, but she still went to hospital for IV antibiotics when she got pneumonia as she still had good quality of life at that point. Near the end of her life, after a stroke which was not treated with stents etc in the hospital as it was not deemed appropriate, I spoke to the care homes GP and got it changed so that she only went to hospital for broken bones. Then after she broke her hip and deteriorated further I changed it again so that she didnt go to hospital at all and would pass away naturally in the care home.

I would recommend that you decide on what your husband is like now and change it later as required.
 

Pebblepebble

Registered User
May 29, 2022
15
0
I was POA for a gentleman who had a stroke. He couldn't do anything and sadly for him lived for over 2 years. At the end when he was ill the doctor asked us if we wanted him to stay in the home or be taken to hospital. She said if it was her parents she wouldn't want them going into hospital and we agreed with her. He died peacefully in the place he had known as home for the last years of his life.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,340
0
Kent
While I was organising a DNR for my husband I decided to sort out an advance directive for myself. My GP and my son have the necessary documents.

It was so long ago I have forgotten about it and am relieved it`s one less thing to worry about.
 

Lawson58

Registered User
Aug 1, 2014
2,900
0
Victoria, Australia
While I was organising a DNR for my husband I decided to sort out an advance directive for myself. My GP and my son have the necessary documents.

It was so long ago I have forgotten about it and am relieved it`s one less thing to worry about.
My husband’s cardiac arrest encouraged me to prepare an Advanced Care Directive too. I feel I know who will have control over these decisions and what those decisions will be. Our local hospital also have copies of mine and here it is a legally binding document and cannot be overridden by someone who doesn’t know me.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,430
0
High Peak
This is such a personal thing. Even though I'm firmly in favour of 'quality over quantity' and even euthanasia, I could never say to someone, 'You should sign a DNAR for your husband/mother,' as everyone is different, relationships are diferent, life philosophies are different.

It was easy for me because the whole family were on the same page and mum had made a Living Will stipulating no further treatment if she became incapacitated, so after she broke her hip (which was fixed) I set up a plan with her GP to keep her at the care home, i.e. no more hospital. People with dementia do not do well in hospitals and with all the difficulties with visiting these days, it's equally bad for any relative.
 

Duggies-girl

Registered User
Sep 6, 2017
3,356
0
People with dementia do not do well in hospitals and with all the difficulties with visiting these days, it's equally bad for any relative.
That is so true, it was one disaster after another for my dad, it was horrendous for him and I don't know how I survived. As for me, it was a living nightmare and I was at my wits end. I visited twice a day for 3 weeks just to check he was still alive, this was before covid and I am still horrified by it all. He did come home but his dementia had progressed sadly.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
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68
Toronto, Canada
I do agree with @Grannie G that this decision should be made when things are calm and not when there is a crisis.

It was relatively easy for me, as my mother had always said she didn't believe in heroic measures. Her nursing home actually had 4 different levels of intervention, which had to be reviewed by me every year. The levels started with hospitalization and ended with staying in place, with no extraordinary measures taken. As time went on, I changed the levels. In the end, she died in the home very peacefully. When she died, she had been in a wheelchair for 10 years, had been incontinent longer and had not spoken for several years. There was no quality of life.