DNR (Do not resusitate) abuse in hospital

[Raggedrobin]

I have been reflecting on this thread a bit. Firstly, Christine, I can really see why this must have been an awful situation for you. But I do agree with Quilty, families have to be very pro-active about the wishes of dementia patients. So, and the reason I mention the care home, is that anyone in a care home should make sure that DNR/R is in place and on the notes of their residents, so that whenever they are admitted to hospital, this document, or a document to resuss, travels with them. That is certainly what happens at my mother's home. Then on top of that I also travel to the hospital and at the point of admission make sure that the DNR form is on the notes. So there are several people involved in making sure wishes are carried out; the care home, the family, and the doctors.

I reacted quite strongly to the word 'abuse' in title of this thread. What happened may be wrong but I think the word abuse is a highly emotional term and not the reality of the situation described. It doesn't sound to me as if anyone was trying to abuse your father, far from it, they were trying to look after him and clearly did their job well. It feels blaming to call it abuse and I think it doesn't allow that none of your family nor the care home made your wishes clear to the hospital from the start. Sorry if that sounds harsh but crying abuse sounds harsh to me.

Thank you for the links to the Age Uk/Concern comment. It is not a very wise comment for them to make and says not that they think it but that some elderly people think they will not be revived. This doesn't really make it an official Age Uk comment in the situation.

 

[AndreaP]

I don't think you read my post carefully Pete R. I wrote that the DNR may have been initiated in case his condition deteriorated rapidly. I was not suggesting he should not have been treated for unstable blood pressure. I also raised the question of whether a dementia sufferer should be kept alive when natural death is imminent. I realise it was a separate issue to that which the OP was discussing.

I raised the question of "what price life?" because it is the very same question neonatal specialists ask every day in children's hospitals like Great Ormond Street. There have been several documentaries around this subject where doctors are shown reviewing a case of a severely premature infant just clinging to life. Their dilemma is whether to continue treatment where the prognosis is very poor and the quality of life should the infant survive is likely to be equally poor.

It is the same issue in my mind. I visit my mother and hear screaming from the Dementia Ward and see people wandering around aimlessly in an agitated and fearful state. And yes I ask myself "what's the point in medicating to sustain life in these circumstances? Surely palliative care is a better option?" I certainly do not want to live like that and would not want medication given to prolong my life in those circumstances.

I should specify that I am referring to people whose quality of life is poor and obviously that does not apply to all dementia sufferers. My mil had dementia yet was placid and seemingly content to her very last breath. But for the last 5 years my 91yo mother has been begging me to help her suicide yet she continues to swallow 6 different medications prescribed to sustain her life. When we last visited her nursing home an elderly resident tugged my husband's sleeve and said "would you kill me please?"

I don't profess to have a solution to what is a complex moral and ethical dilemma. I knew my post would enrage some who read it. I think it is interesting to read different points of view on a subject such as this. Perhaps my opinion is coloured by my personal belief that physical death is not the end of spiritual life. I am not afraid of death - it's only the dying part I dread, particularly if my brain starts to die before the rest of me.

And if you think economics should not play a part in all this then you must believe that the public purse is bottomless and inexhaustive. There is a finite amount of money to go around and there are many conflicting priorities.

 

[cazaroo]

Inaccurate information

I have over 20 years experience of working in intensive care, and you are missing the point! Your Dad was gravely ill such that he needed to be admitted to ITU and it is a medical dicsision whether to attempt resuscitation in the event of his heart stopping - ie in the event of his death on ITU . As pointed out previously resuscitation is a traumatic experience and it can result in broken ribs, brain damage and often just prolonged the inevitable outcome ......
The decision to have a DNAR - do not attempt resuscitation - should be discussed with the patient where possible and the family but ultimately it is the doctors decision ( a senior registrar or consultant) and will be reviewed after 3 days.
The actual place and circumstances of a death are not part of a DNAR it is simply a statement about whether cardiopulmonary resuscitation will be attempted in the event of the heart stopping.
Think about what your Dad would want if his heart stopped.
That said if you have concerns over any decision then speak to the care home, and the consultant who cared for your Dad in hospital.

 

[notsogooddtr]

Just because someone has dementia does not mean that their "natural end of life is reached".

My Mom had dementia when she was resuscitated due to loss of blood. Totally non dementia related.

Is it just elderly dementia that you think are not worth saving or would you include any other diseases/conditions? Do you have an age when someone becomes elderly?

The rest of your comments regarding hospital policy have no foundation in fact whatsoever.

Having dementia isn't an indication that natural end of life is reached but in an old ill person the heart stopping probably does.

 

[Pete R]

Having dementia isn't an indication that natural end of life is reached but in an old ill person the heart stopping probably does.

I'll tell my Mom that when I take her to go and get her hair done tomorrow but she might not like the "old" part. What is your definition of old?

In fact she has an appointment to get her pacemaker checked soon. She had that fitted some years back as on occasions her heart needed a little reminder to keep going. Suppose there are some that think the money could have spent better elsewhere. Shall I tell them to take the battery out?

 

[Quilty]

I dont think anyone here thinks that dementia sufferers are nit worth saving or that we should save money by not treating them. This is all about a dignified and oeaceful death. I watched my dad die of cancer. He had hospice at home which must have been very expensive. Being at home was his wish. DNR or artificial breathing or feeding is my mothers wish. The only certainty in life is that one day we die. Age is not the issue or dementia. We need to learn to talk to each other about death.

 

[Canadian Joanne]

I think that putting a DNR in place is a personal decision that needs to be discussed as soon as possible amongst the patient, family and doctor. Finding out at the hospital is extremely difficult and inappropriate, in my opinion.

A DNR depends upon many factors, personal beliefs being one of them. The patent and family should be made aware of all the medical facts involved. There are those for whom personal beliefs will override any physical and medical considerations.

My sister and I discussed the matter and we have a DNR in place. When the time comes, we hope our mother will just slip away. We do not want her to be subjected to the resuscitation process, as it rarely works for the elderly and it is quite traumatic. Fortunately, because we're in Canada, we have the final say regarding DNR. A doctor cannot override our decision.

 

[Sarah86Foster]

Hello I have worked in care for over 10 years. You find that people with Alzhimers that are in a care home will usually have a DNR in place. Life expectancy is usually reduced when the time comes that a person comes to the point that they need 24hrs care. Some care homes may use a GSFW system. Types that are at a higher level of dependency and have a lot of medical problems wrong with them are in a red zone. And with discussion with the family are put on a DNR as it is kinder for them. Than to try an bring them back if they were to stop breathing. However the DNR is only valid in the place it was issued. So now your dad has gone back to the care home that DNR is obselit. You will need a new one doing by his own gp for the home that he is in. This applies if he were to go back into hospital. That DNR only applies for the building that he is residing in at that time. Hope this makes sense. Xx

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[Chuggalug]

My dad now lives in a care home as he has Alzhiemers. 3 weeks ago, he went in to hospital with a water infection. This was on the Thursday. In the early hours of the Saturday morning, my sister, who has POA, got a call from the hospital to say he was being moved to intensive care. It was nothing to worry about. They couldn't get his blood pressure steady and intensive care could better deal with it. He was there for over a week then moved to a ward. He seemed so much better but more tests were to be done.

Yesterday, my sister got a call to say he was being discharged. My other sister collected him and took him back to the care home. Dad seemed happy to be home. As my sister was gathering dad's things together, the matron told her his medication was on the table ready to take then she made a fuss of handing my sister an envelope and told her it was my dad's DNR form and she should hand it in to the care home. As you can imagine, my sister was shocked as none of us knew anything about it. She brought it home and asked me and my other sister to meet up to discuss it. We found the form was signed by a junior doctor when it should have been signed by 2 doctors. The time on it was an hour and a half after dad was taken to intensive care but no-one phoned my sister to tell her.

We have searched for information on this and found several stories where, after a loved one has passed away, family have found DNR notices in the records and not known about it. One woman recovered then found it. Again she knew nothing about it. Another elderly lady went for a hospital appointment and was asked to take her notes to the doctor she was seeing. She found one in her notes and was shocked by it. Age UK have said they think some hospitals are using DNRs as a form of euthanasia. Disability Now told one lady to check her notes to see if there was one there and to make sure it was in her notes that she wanted to be resuscitated and to let as many people as possible know about it.

I shudder to think how many people this has happened to. It seems that if you are elderly, you need to tell them you want to opt in to be resuscitated rather than opt out.

Wow. I've only just seen this. My experience was that the hospital asked me if I wanted them to proceed with DNR if anything happened in the operating room over husband's hip operation. To say I was stunned didn't even come close to the shock I felt. I would not commit.

Two things to be aware of: One is DNR seems to be a routine thing. Two: If the patient is classed as suffering from dementia - during a hospital stay, they will more than likely be pt on a catheter. This was when our real nightmares started. Thank God, after a few weeks, I managed to talk them round to taking hubby's out. He's never had another put in again.

 

[Sarah86Foster]

Usually they will catheterise people for convenience. They are to busy to be taking people the toilet all the while. Unless they are mobile or independent. It's a terrible situation because in doing this causes infections, people with dementia become reliable on the catheter and start to become incontinent where they weren't before. There is not enough learning put there for people who work with people who have dementia or dementia related illness eg parkinsons. Xx

From Sarah Foster

 

[Lawson58]

I can only speak on this subject from my experience with OH when he had a cardiac arrest in our kitchen and ended collapsed on the floor and it was obvious immediately that he was in deep trouble.

He had suffered with cardiac issues for some years and this was some months before his diagnosis with AZ.

I was on my own and had to make some pretty quick decisions and take some drastic actions. And so I phoned Emergency, got the paramedics on the way and proceeded to give my husband CPR. It was pretty horrific when I heard an almighty crack and knew I had broken his ribs.

The day following his admission to ICU, the Director sat with me and we discussed what the options were if he could not breathe on his own or regain consciousness which at that time there was no way of knowing. The doctor was very caring and honest and explained to me clearly what the procedures would be in the event that he would require life support or have some further health issues.

At no stage did I feel that I was being pushed into any decisions that were based only on his age. The decision to turn off life support or not to make any heroic intervention would have been made on medical grounds and the question of quality of life was for me an important consideration.

I knew halfway through the discussion with the doctor how and why I would make that decision but fortunately it never came to that. He was fitted with a defibrillator and has now had two more years of life. He was diagnosed with AZ some months later and has had some more health issues of a different nature but he has managed to make the most of the time.

He is going to have surgery soon and is aware of the risks. His AZ has advanced and he is now a little frail and maybe I am going to face the situation again but I believe I am a lot more educated about DNR.

And educating ourselves about this topic is surely the only way any of us can make choices that we can live with. Our local hospital provides opportunities for end of life and DNR directives to be registered with them and has a counseling service that takes you through some very confronting topics.

And I consider that I have been lucky enough to have had the time to think everything through.

 

[Witzend]

Our neighbour, who was over 80 at the time, no dementia, and had had had heart trouble for some time, was resuscitated in hospital. He told me afterwards that the after-effects were so painful, he wished they'd just let him die.
He did in fact die within a few months.

I don't think people will ever agree on this. Some people will always want their relative kept going if humanly possible, regardless of age, state of health/dementia, and regardless of their quality of life. And they will think it neglectful if every effort is not made to keep them alive.

Others will think it may be kinder to let Nature take its course. Once she was past a certain stage I certainly would not have wanted resuscitation for my mother, and I know 100% that she wouldn't have wanted it, either.

 

[Grannie G]

Usually they will catheterise people for convenience.

I find this quite a sweeping statement. I would hate to think it really is true in any hospital and would think anyone who held a LPA to include Health could object strongly and be listened to.

I would certainly object to a catheter being used unless it was absolutely necessary.

 

[Sarah86Foster]

Usually they will catheterise people for convenience. They are to busy to be taking people the toilet all the while. Unless they are mobile or independent. It's a terrible situation because in doing this causes infections, people with dementia become reliable on the catheter and start to become incontinent where they weren't before. There is not enough learning put there for people who work with people who have dementia or dementia related illness eg parkinsons. Xx

From Sarah Foster

I have actually heard this from a nurses mouth. They catheterise my great nan whom had Alzhimers. They also did this to my grandad too. Any many patients I've cared for in care homes. They have usually had to wait until the catheter has been removed before discharge or they send a community nurse to remove it once they have returned home.

From Sarah Foster

 

[sleepless]

My dad is 88, has vascular dementia and lives in a care home.
He has been admitted to hospital three or four times this year, and I can only add that as well as nursing staff not having the time to toilet patients, there often are no staff visible or within calling distance if assistance is required. Call buttons are of no help as Dad can't remember they are there.
I often think hospitals are designed by people in the peak of health, and therefore don't always suit poorly folk, and never people with dementia.
I dread the calls saying he is being admitted to hospital, and am always greatly relieved to know he is back where the care home staff know him, and all his quirky ways.
Sad to say, I can never feel he is safe in hospital.

 

[Spamar]

Hi sleepless, I always wondered why homes gave call buttons to their inhabitants when they all suffer from dementia. OH was the same.
Do they all lack common sense or are they ticking boxes?

 

[Pete R]

I find this quite a sweeping statement. I would hate to think it really is true in any hospital and would think anyone who held a LPA to include Health could object strongly and be listened to.

I would certainly object to a catheter being used unless it was absolutely necessary.

From experience I would not be surprised if it was policy. So much easier for the staff and certainly not always in the best interest of the patient.

Whilst in hospital Mom had a UTI for over 5 weeks due to the catheter. Took an immense battle to get it removed. UTI cleared, never to return, 3 days later.

 

[Pete R]

Hi sleepless, I always wondered why homes gave call buttons to their inhabitants when they all suffer from dementia. OH was the same.
Do they all lack common sense or are they ticking boxes?

Mom has never got the hang of the call button so is not left near her. CQC visit couple of weeks back said it must always be within reach.

 

[sleepless]

Mom has never got the hang of the call button so is not left near her. CQC visit couple of weeks back said it must always be within reach.

So care homes presumably get brownie points for something that in most instances is as of no use to the resident.
Having said that, we do hear the chimes going when we visit Dad, so someone uses their button.
My husband (Alzheimer's) has often activated Dad's call button by pulling the emergency cord in the ensuite, when we are visiting, thinking it will flush the loo!

 

[Witzend]

So care homes presumably get brownie points for something that in most instances is as of no use to the resident.!

I have a suspicion that a significant part of CQC is tick-box, and I do wonder how many of the inspectors understand dementia.
My mother's CH told me that they would get a black mark for anyone 'just sitting' when there was an activity going on, so they felt obliged to cart along residents who could no longer enjoy them or be able to participate, and who disliked being 'carted' anywhere and wanted to be left in P and Q.