If you have a relative with severe dementia.....

[Stonehengecalling]

If they are ill, why do you want them treated to prolong their life?

I’m a HCP who deals with dementia daily. In 20 years I’ve only had 2 families that have asked me not to treat their dementia suffering relative, which has resulted in a speedy death. Everybody else wants me to treat their mute, bed bound, incontinent, peg fed relative to keep them alive a bit longer. I don’t understand why.
I’m going to apologise now as I appreciate this post my upset some people, and that truly isn’t my intention. I’d also like to be absolutely clear that I’ve always followed family requests. I just genuinely don’t understand why some families are intent on keeping relatives who recognise no-one and with no apparent quality of life left alive with repeat courses of antibiotics?

@elsiebear90 I think you mean patient with dementia rather than demented patient.

I too have no words.

Can I say to all sharing stories of their loved ones, I have read every single one. (Unmumsnetty hugs)

Those of you doubting the power f music in the management of dementia, please watch this;
metro.co.uk/video/prima-ballerina-alzheimers-remembers-routine-swan-lake-2288344/

I'm sure that is great if you are a prima ballerina or a musician or even just really like music, I prefer silence so if you kept playing that to me and I couldn't communicate with you I can assure you it wouldn't be doing anything positive for me.

The answer is not to turn to murder, but to ensure we fund and provide excellent services for all as they approach the last stage of life. How many people have suggested murder? I think most people are saying there comes a point where a wise person recognises enough is enough and that people are no longer approaching end of life but they have arrived and are just waiting for it to happen.

I agree there should be funding for excellent care but I think excellent care should recognise when science and medicine need to stop.

Apologies I haven’t read the full thread. My beloved gran had very advanced dementia and was in a specialist nursing home for both her physical and mental needs. I am an RN. Towards the end of her life she was getting recurrent UTIs and LRTIs. I had a very frank discussion with my mum and extended family that I didn’t think another course of antibiotics and oxygen etc was in her best interests. Had a long discussion with her GP who looked visibly relieved that we didn’t want active treatment for the infection we wanted active palliative care. She was very comfy on a driver for a couple of day surrounded by family and friends and slipped away peacefully-just as it should be. I strongly believe this was the right thing for her-we had lost her several years before this they were just treating the shell of the wonderful lady she once was. I am now in a role which involves a lot of palliative care and I instigate discussions around planning and reasonable ceilings of care early. We have advanced medicine so far that many believe we can work miracles which unfortunately isn’t the case but what we can do is plan well and manage expectations.

@ancientgran
I agree there should be funding for excellent care but I think excellent care should recognise when science and medicine need to stop.

I couldn’t agree more, the best medics I work with are the ones that know when to stop. A surgeon I worked with and hold in very high regard told me as a student nurse ‘A good surgeon will always operate to the highest of their ability, a great surgeon sometimes won’t operate at all’ that has alway stuck with me.

And where there is faith decisions about life do not belong to husbands, wives, lovers, sons or daughters and neither do they belong to HCPs. They belong to God and when he is ready for them they will be collected and guided towards their final resting place.

I am unclear as to what that statement might translate to in terms of a clinical pathway, but am pretty certain I'd want none of it.
Alleviating discomfort even if it shortens 'life' is surely the most humane approach. Shipman did far more damage than just his many murders: many doctors do not so much embrace defensive medicine as clutch it in a death-grip. No tastelessness intended.

The answer is not to turn to murder, but to ensure we fund and provide excellent services for all as they approach the last stage of life

No one, especially MPs, should come out with this type of comment without clearly detailing where the funding should come from. Of course everyone wants excellent services.

It is clear from this thread that some posters are very passionate about advocating for excellent end of life care and believe it is being given in most cases. However, from other posts it is obvious that it isn't.

I totally understand that people feel very passionately about this subject but the aggressive tone of some posters really doesn't help.

A question if I may, if one has the Advanced Directive etc can a member of your family still over ride your wishes?

It depends whether there is a full power of attorney.

I had the DNR conversation again with my relative's new doctor and also talked it over with my friends who work in stroke medicine (happily said relative is more like her normal self every day so here's hoping her confusion is genuinely transitory). It has been made very clear to me that (a) the hospital is not giving me the decision to make, they are telling me what their decision is and (b) the decision is limited to CPR and they absolutely would give (and are giving) other active treatment.

I'm reading "With The End In Mind" at the moment following a recommendation from a friend who works in palliative care and I totally agree that we need to be educated about what the process of dying involves (so many of my own fears around it are based on mistaken understanding of pain control etc). I also think that everyone needs to be actively encouraged to plan for their own long before they need to.

This thread is a real eye opener, actually. Thanks, OP.

The answer is not to turn to murder, but to ensure we fund and provide excellent services for all as they approach the last stage of life. How many people have suggested murder? I think most people are saying there comes a point where a wise person recognises enough is enough and that people are no longer approaching end of life but they have arrived and are just waiting for it to happen

I agree there should be funding for excellent care but I think excellent care should recognise when science and medicine need to stop

Absolutely. References to murder are far from helpful. Stopping life extending treatment isn’t murder, it’s humanity.

I agree there should be funding for excellent care but I think excellent care should recognise when science and medicine need to stop

This ^^
Talking about "murder" is rather extreme

Yes that emotive accusation of murder is ridiculous.

I do feel for the medics, as the UK has got more litigious. When my mum was dying in her last few weeks, my siblings were constantly arguing for more treatment, including invasive treatment. They were not taking in what the consultant was saying about the reality of her condition, just complaining that she was being neglected and not treated properly and could keep going for a few more years if only this treatment happened etc. It was really upsetting and amazed me how although we are siblings we saw it from such a different perspective.

A bit of knowledge can make a difference; e.g. knowing that stopping eating and drinking is a 'symptom' of dying, not the cause. This needs to be common knowledge.

"A bit of knowledge can make a difference; e.g. knowing that stopping eating and drinking is a 'symptom' of dying, not the cause. This needs to be common knowledge."

I mean often, at that stage.

There are plenty of comments on the thread about ‘not treating animals this way’ and ‘ending their misery’. That is suggestive of murder/euthanasia. It is illegal in every country across the globe.

Allowing a dignified and natural death is accepted best practice. The whole idea of artificially extending life is generally tosh. The risk during pandemic has been the opposite and new guidance had to be issued because blanket decisions not to admit or offer resuscitation to people with learning difficulties were being made.

PP talking about murder! Really... I have a DH late 80's in a care home. I wouldnt wish his existence on anyone. He has had to sell his house to pay for his care home fees which is fine (London care home - just over £70k per year).

However he doesnt want to live. He talks about suicide quite matter of factly but as a Catholic wont do anything about it. He is just existing and doesnt want to be here so he is litererally just waiting. I am his POA and I know his wishes. His GP has asked me about DNR within the care home and I have said to keep him comfortable in his last years but dont do anything that causes pain and even worse allows the medical profession to show off how they are saving ANY life regardless of quality.

I read an article recently where a Dr said his heart sinks when family demand that everything is thrown at a 95 year old with dementia.

I have spoken to my siblings about this. They are not UK based so it will be down to me. I know what I need to do when I get the call....

@Bathroom12345, I do feel sorry for doctors in that situation - it must be so difficult for them when they know it’s not in the patient’s best interests - but they must be apprehensive of Mail articles on the lines of, ‘Callous doctors wanted Mum to die!’

I know of a case where an over 90 year old with dementia (not end stage but certainly past the early stages) was fitted with a pacemaker. The family asked what would happen if s/he didn’t have it, and were told that the heart would most likely give out while s/he was asleep.
But they went ahead anyway.

@CherryPavlova

That is suggestive of murder/euthanasia. It is illegal in every country across the globe.

PLEASE STOP using the word murder. No-one is advocating murder. And there are several countries (or states within countries) that allow euthanasia or assisted dying. Switzerland, Belgium, the Netherlands, Luxembourg, USA, Australia,France, Columbia, Canada and New Zealand has just voted in a referendum to approve assisted dying. I would argue that assisted dying is a step beyond what I was discussing in my OP- which was simply to stop endlessly investigating and treating end stage dementia patients. Allowing people to die from natural causes is not the same as actively helping them end their lives. And it certainly isn’t murder.

Allowing a dignified and natural death is accepted best practice. The whole idea of artificially extending life is generally tosh. The risk during pandemic has been the opposite and new guidance had to be issued because blanket decisions not to admit or offer resuscitation to people with learning difficulties were being made. I think it depends how you define artificially extending life. I'm thinking of my relative, late 80s, advanced dementia, had a fall and needed surgery, during the surgery she aspirated stomach contents and when I saw her the next day I thought this is going to develop into pneumonia and she won't be with us for very long.

I went to have something to eat and when I came back they had set up an IV of strong antibiotics, she tore the IV out several times, she tried to tear out the urinary catheter. She was on an open ward, the nurses didn't want the curtains closed as they wanted to keep an eye on her even if they were doing other things. The women in the beds opposite saw more of her than they ever wanted to, they were clearly uncomfortable when their visitors were with them. There was no dignity for my poor relative. After a week of this torture they declared success, the pneumonia was avoided and she was sent back to the home.

Understandably she was more confused, less mobile and in pain and so the months have gone on and now she is having these special high protein drinks as she doesn't want to eat, she doesn't want to drink either but they are getting some of it down her. Can you say her life wasn't extended? I think it was, if they had kept her comfortable in hospital with no antibiotics she would have died in a short time, her suffering would be over and it would have been more dignified. I realise you might see it differently, to you the antibiotics were just treating a symptom not extending her life. We will just have to disagree on that one.

What about the drinks, she doesn't want nourishment, her body knows it is time to go but she is denied that. Is that extending her life?

I think we can become very very selfish in that we want the person to live for our own reasons. Not because they do.

I used to be able to take my DH for the occasional lunch. Until his trousers fell down on the way to the restaurant and he didnt seem to mind. He asked whether his underwear would fall down too. He took his false teeth out during the lunch and put them on the table.

Those are the slightly amusing bits - there are other situations where its not so funny and he was such a proud, sharp as a tack man in his day. He is now a shell of a man but for some on this thread that is OK because he is ALIVE.

No one is murdering anyone and anyone who is saying that could happen needs to hang their head in shame for saying this. They have clearly never been in a end of life situation. Its no existence and I am going to say something that no one has yet mentioned.

ITS BLOODY EXPENSIVE FOR THE NHS AND WHEN THEY ARE HAVING AN OP SOMEONE ELSE IS STILL WAITING. IT COULD BE YOUR CHILD, YOUR HUSBAND...

I think there’s a similarity to the tea/consent thing here. If someone is refusing food at the stage when their body has decided they no longer want it, isn’t it wrong to force feed them?

I am getting fed up of posters using the term murder on here, but if they insist maybe we should refer now to the blanket term “torture” for keeping someone with advanced dementia alive with constant invasive treatments.

When my DM broke her hip she was in what I thought was an old people's ward. It wasnt. It was just that every single paitent was over the age of 80. The women next to her had dementia, had brokeb her hip twice. Screamed and screamed all night long. The staff moved her to a side room. She just pressed the buzzer time and time again.
In the end the staff just shut the door and ignored her. Not great but I undnerstand why they did it. They were short staffed. Her ringing the bell every 5 mins day and night was just not tenable. They could have moved her to the Dementia Ward but that was full...

The women opposite had no idea where she was and was 96. Her son who was well into his 60's told me that he was at the end of his tether and so was she. He burst into tears and just said he hoped she went peacefully as opposed to be given operations, drugs and treatment when she didnt want any. He felt that the Drs didnt want to be accused of ignoring a 95 year old and treating a 7 year old.

How do I know all of this? Well, I was there for over 2 weeks every day and as an observer you do see an awful lot.

And these people talking about murder. Let them look after the patient day after day. Stop expecting others to do it. You do it and then see whether it is the right thing for the patient.

I'm in the fortunate position that I can set money aside for a one way trip to Switzerland. Having watched my great grandmother, two grandparents, my father and my mother go through what dementia does, I've decided it isn't for me. My DDs are aware of this and are on board with it.

My grandmother (in the Netherlands) had an assisted suicide in 2006. No dementia involved, just terminal physical illness, so it was relatively straightforward. She was in control every step of the way, she chose the moment, she passed peacefully. Contrast that with the stories on here and maybe those of you who are shouting 'murder' and going on about the preservation of life at all costs will develop a clue.

The whole idea of artificially extending life is generally tosh

Such “tosh” that countless firsthand experiences are fairy tales, I suppose.