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?

Your in the wrong job @Stonehengecalling

As another HCP I am truly horrified at your thread.

OP I'm a MH nurse who has previously worked in a dementia unit. We had 14 patients. Around 4 or 5 of them, while having dementia, were fairly physically healthy and still up and about. Terribly affected in their cognitive functioning however physically, fine. I guess if you asked a relative do they want interventions ie antibiotics for an infection, they would say yes, of course, as all they can see is mum and dad up and about, walking around happy enough within themselves. However for the rest of our patients, the vast majority had Anticipatory Care Plans (ACPs) in place. This tends to be for the patients who are more advanced in their illness, both physically and mentally. They can be different but many of them do state 'no antibiotics', 'no IV fluids if dehydrated' etc.

So I'd say, in my setting at least, the majority did have plans in place to not prolong life. I guess many relatives might not want their loved ones to suffer and they may perceive no antibiotics as a way to get rid of infection and alleviate suffering. As with IV hydration.

It's difficult for relatives. Very difficult. They just want mum or dad around as long as possible and some are in denial about their parents quality of life and just can't get their heads around the fact that this is end of life.

I think we as HCPs see things in a very practical manner. Most nurses/doctors that I've come across in situations like this would opt to not prolong life. However I can't say that I would necessarily make the 'practical' decision straight away. It would be very hard to come to terms with.

@SinisterBumFacedCat things are getting a lot better with dementia care. In Scotland, we have 'the Dementia Strategy', a massive undertaking by the Scottish Government to improve the quality of care for those with dementia and their carers, we have a one year dedicated post diagnostic support service (and support doesn't finish after a year, this is just the dedicated service that's given to everyone post diagnosis, they do continue to receive support after that dependant ok n their own needs and wishes); it's all in an attempt to get away from the idea that you get diagnosed with dementia and that's that. The aim is that people with dementia live as meaningful lives as possible, at home for as long as is practical and possible - if that's what they want. Many if not most individuals and carers i've met would like their loved ones at home until such time where that isn't possible anymore.

Dementia care (certainly within NHS Scotland) is improving all the time. I do continue to hope and pray for a cure however. It's one of the cruelest illnesses.

I am surprised by the ops experience. I have nursed for over 35 years and can hardly recall any relatives of those with advanced dementia wanting extensive intervention. I find if you give correct information around prognosis, and ask the question ' what would they (the Patient) want if they could see themselves now, no one says that they would want to exist laying in bed but not able to communicate.

boxis

Don't know what boxis is !

Having seen a close relative living an existence with dementia I wouldn't wish it on anyone. I definitely wouldn't want treatment that would prolong that kind of half life for myself. Death was a relief for her.

My grandad is from a Catholic family and I think my granny still sees the life he had any the love they had instead of the horror of the half life he lives now, as well as difficult underlying feelings about the sanctity of life. He's violent, he tried to kill her before he went into the nursing home he lives in now, and regularly takes 3-4 people to restrain him. It's a cruel illness. He hasn't had major interventions since he's in there, but I really think we should have avoided intervention for the heart attack he had before he went in. We might have avoided these years of suffering.

I ought to make a living will or something really, I never want this to happen to me. I have a semi joking pact with some friends that they have to off me if I end up in a dreadful state, but obviously that's not allowed in reality.

I understand what you mean.

Without going into too many specifics, I've been in something like this position with a family member and, intellectually, yours has always been my attitude and I stand by it.

However, the weight of feeling that you essentially are calling time on the life of someone you love when there are other options to keep them going can feel very, very heavy and the questioning of whether you are doing the right thing not to hold out for a (literal) miracle is intense.

Is it a betrayal to say, "I think it's better we let you die"? You imagine their survival instinct might still be very much in play - is it cruel to deny that even if they're suffering? Can hear you talking about it? Do they understand? Do they feel a huge sense of betrayal at what you're saying and silently screaming the opposite / to be given a chance?

It's emotional and in no way rational, really, but they're the kind of things that went through my head.

It feels like such a heavy burden, even if all the family agree and the person you knew has previously expressed a wish not to live like that. This is all as well as it being very taboo in many ways in society at large (which probably feeds into the above too).

It gave me an enormous respect for the kind of decisions HCPs must face every day (though hopefully with less of a personal investment in each patient).

[quote AwaAnBileYerHeid]@SinisterBumFacedCat things are getting a lot better with dementia care. In Scotland, we have 'the Dementia Strategy', a massive undertaking by the Scottish Government to improve the quality of care for those with dementia and their carers, we have a one year dedicated post diagnostic support service (and support doesn't finish after a year, this is just the dedicated service that's given to everyone post diagnosis, they do continue to receive support after that dependant ok n their own needs and wishes); it's all in an attempt to get away from the idea that you get diagnosed with dementia and that's that. The aim is that people with dementia live as meaningful lives as possible, at home for as long as is practical and possible - if that's what they want. Many if not most individuals and carers i've met would like their loved ones at home until such time where that isn't possible anymore.

Dementia care (certainly within NHS Scotland) is improving all the time. I do continue to hope and pray for a cure however. It's one of the cruelest illnesses.[/quote]
My father has dementia and lives in Scotland with my mother. We have had to fight tooth and nail to get any sort of support whatsoever. Can you send me more information about the Scottish support please?

I’m sure face to face, with pauses and language tempered for relatives (not a chat thread) the OP is probably not as blunt as this post has come across.

I welcome the discussion. My mum died a prolonged suffering death from dementia this year. I am in the process of writing an Advanced Directive to ensure I don’t have the same fate.

I think it’s obvious from this thread that Drs who make this sort of suggestion might get an angry response but it’s also obvious that relatives can’t bear the burden of proposing the same.

I asked the Dr about to take my mum for a pacemaker not to. She had several miserable awful, suffering months thanks to that. I would not have wanted it. She didn’t get a choice. I wish the same Dr had had to sit by her bed for the next 15 months watching the undignified slide to death.

I’m in a similar situation some months after my mum’s death but this time my sister with learning disabilities. It’s an interesting comparison. (It’s actually a desperate, desperately tragic and upsetting time but i can’t cry all day and when I stop and think clearly, I have these thoughts)

My mum and sister on paper had many similarities. Certainly their CHC assessment seemed that way measuring independence, mobility, continence, nutrition etc. Sister gets CHC (she has no money even if they don’t award so it’s just a question of whether health or social care pay) Mum didn’t get CHC (paying for care comes from her estate). Go figure on that one.

So decisions on EOL care might be the same? Sister is a lot younger so that might sway things to offer more care? I don’t feel she is suffering because her life is the one she has always known...she doesn't know what she has lost whereas I could tell my mum was very angry and frustrated

Within the first conversation about my sisters admission with a twisted bowel I was asked about ‘ceiling of care’. Contrast that with the insistence of inserting a device to keep my mum alive despite the fact she was mid 80s, failing health and advanced dementia and I’d asked them if it was really in her best interests?

I do think these discussions are important so that Drs can understand the nuances of what people want for themselves and for their relatives. It’s also really important that we take responsibility for thinking ahead to when we might not have capacity-at the very least talk to your relatives but preferably write an advanced directive or something to help people know what you value about living.

Antibiotics and fluids are seen as something easy and cheap to give a patient to also make them more comfortable. If the burden is on relatives to say no to these things they probably just feel guilty/don’t want the responsibility to make that decision/don’t really always understand the consequences. I think legally we need to get to a point where we all aim to make those decisions by age 65, for example, for ourselves. My brother is a medic and did make these decisions for both my father at end stage cancer and my grandmother age 93, with dementia. I remember very clearly that my own mother found it very very difficult to say no to fluids and watch them die “naturally”, so it is quicker (pain relief was of course given). So I would say unless someone has a trusted medic in the family or a close family friend medic who advises the instinct is to keep going with easy available therapies which do not seem cruel. It is hard to watch someone you love literally dry up as their body shuts down.

My dad's TET document states (I believe) that he isn't to be artificially fed.
I do wonder when the time comes though whether mum will overrule that.
I'm going to take my time reading this thread because we are headed (rapidly) in the direction outlined by OP
It's heartbreaking

Antibiotics and fluids and particularly fluids are the bare minimum to keep someone vaguely comfortable.

I am really uneasy that you wouldn’t even want to give a patient fluids.

My parent did t die of dementia but they did die a drawn out horrible death.

Hindsight is 20/20. If I had my time again I’d say that infection was the beginning of the end it would have been kinder to let her go.

But we didn’t know that at the time. At the time the docs gave antibiotics and were hopeful of a reasonable quality of life afterwards.

Watching my relative die of starvation and be incredibly thirsty because fluids were withdrawn was the hardest thing I have ever done in my life and I still have nightmares about it over 5 years later.

I watched my mum die of starvation and dehydration. Awful. The alternative was to watch a drip or PEG feed until she died from pneumonia struggling to breathe. Death is really hard and I wish we could accept it is inevitable and make it easier rather than drag it out.

My choice would be to have increasing sedation once I stop eating and drinking.

I agree with you OP. My mother had alzheimers and died 10 years ago. She didn't know where she was (or when she was) most of the time. She kept stopping eating and we decided not to peg feed her (if that is the right term) and eventually to stop sending her to hospital and putting her on a drip. It added nothing to her quality of life, you would have treated a dog that way and it was a relief when she died.

My biggest fear is of ending up that way myself, I would rather be dead.

@TooOldforBouncyCastles

I watched my mum die of starvation and dehydration. Awful. The alternative was to watch a drip or PEG feed until she died from pneumonia struggling to breathe. Death is really hard and I wish we could accept it is inevitable and make it easier rather than drag it out.

My choice would be to have increasing sedation once I stop eating and drinking.

This, absolutely.

For those of us that this feels very recent, raw etc this is a very hard topic. I think it makes me sound blunt but actually it’s about the only way I can manage to express myself without sobbing.

Most HCP (I am one) have witnessed a lot of suffering and a lot of treatments, care plans etc. Knowing that some are futile and just stalling for time make you realise that quality of life whilst stalling for time matters more than time.

I think this is a thread where it would be helpful to know which posters have personal and direct experience of advanced dementia (in a close relative, not Great Auntie June with whom frankly you probably never had to get involved). From a quick read, it feels like those who mention having real experience are far less judgemental than those who do not (or those at an early stage of this awful disease) and appreciate the importance of these conversations. And yes sadly this is one of those discussions where real life matters, you can’t know how it feels until it happens to you.

My situation: my mother is bed bound, non-verbal, doesn’t recognise us, incontinent, the lot. It’s an utterly miserable, demeaning existence. We have in place an LPA and have made clear directives that she is not to receive any intervention at all in the event of illness. Her GP has told me she was thankful to work with a family who understood the implications of trying to prolong life, and that we were wise and kind by choosing what we believe Mum would have wanted. She said it’s too much for most families to come to terms with, especially if they have never lost someone to terminal illness before. The care home fully support us too, as professionals who see this all the time, they know all too well the distress that interventions or a hospital visit could cause.

Perhaps @Stonehengecalling that’s one of the reasons more people try to prolong, we live in a culture whereby accepting death is seen as weakness or failure. Just look at the language we use “xyz passed after fighting a long battle with dementia”. “xyz lost her battle with cancer”.

I think perhaps the question you’re really asking is why don’t more families accept the inevitability of death in these circumstances when often it is the kindest thing to do. Yes, doing so may accelerate an infection or short term symptoms, but they can be managed well with palliative care and anyone who has been in this situation will know that surviving any health shock, no matter how small, will further impede the quality of life of any dementia patient.

To be honest I’ve asked myself this question even with long-term care provision. We are prolonging life even by providing 24 hour support, without medical intervention. OP and @dottycat123 I know you can’t truly answer me, but how long does it go on? The pain that it caused us all, and the way in which is ravages not just my mother’s memory but also our memories of her which are blurred by seeing her in this awful state.

For each family and individual the answer will be different. I can’t go without addressing @YenniferOfVengeberg comment. I can only assume s/he is someone with absolutely no experience whatsoever and therefore a very judgemental opinion. If s/he did have an opinion she would know full well that most dementia patients have a family member with LPA which gives the family full authority over any directives in place. Personally I find it hugely offensive that s/he thinks I should have nothing to do with it. My mother has entrusted us with decisions over her life and her death and personally, I take that responsibility very seriously. Even without an LPA, HCPs will make decisions with the support of the family where they can.

So OP, thank you for raising this important topic. And for those who have not been in this impossibly difficult and painful situation, perhaps it’s a time for listening and allowing those who have to discuss things that are so often taboo in a safe place.

I found the hospital doctors very helpful, honest and realistic about my mum's last few months, but she was very ill and frail and had had a stroke and heart problems, as well as an extremely rapid further cognitive decline. It was more about keeping her comfortable in the wrong place (hospital not home - she couldn't go home at this stage, although she never wanted to go to hospital). My male siblings however were hysterical and demanding all sorts, even a heart valve operation on my incredibly ill, dying mum. Or peg feeding, when it was clear she was in her last days (Dr refused).

I felt incredibly sorry for my mum, who just wanted peace and would have preferred to die at home, and also for the doctors at the demands and accusations made by my siblings.

Sorry if @YenniferOfVengeberg had *experience

Because as a society we don't talk about death enough. We don't talk about our views and wishes for fear of upsetting others or because we just don't know enough about the process of dying. We need to talk about dying! It's going to come to us all yet is the ultimate taboo. If we were more open about it then conversations about whether it's appropriate to offer treatment or not would be much easier for HCP to start with families.

@NeedToKnow101 that sounds a terrible position for you to be in, there’s no worse disagreement
to have with your siblings.

It makes me think. It feels like human instinct to feel like we have fought for everything we can before accepting death. From personal experience, it’s a great comfort knowing you did “everything you could”. Perhaps for some people that “everything” is directed at medical interventions which is why they don’t want to let go of hope until they have to. Perhaps also, not letting go is more about us than it is about the patient, about meeting our own emotional needs (feeling like we’ve done everything we can) possibly over and above those of the patient (letting them go peacefully).

Maybe the conversation needs to change, and we need to talk about letting go with the knowledge that we as loved ones did “everything we could, everything they would have wanted and nothing they wouldn’t have wanted”.

That leaves a lot more scope for families to consider wider choices that are right for them, recognising that what’s right for one isn’t necessarily right for all. But crucially, it puts the needs of the patients first whilst also recognising the emotional needs of the family to feel like they didn’t let their loved ones down.

@ConiferGate
Medico legally you are wrong. Resuscitation and appropriate care are medical decisions. Decisions in which the opinion of the family will be respected as much as possible.
It would be a dreadful burden for families otherwise.
A LPA does not change this.

I think a big issue here is that people don't understand what the DNARs mean and there's not always someone around to fully explain it.
For example- my auntie had early onset Alzheimer's. Can't really put a start date on it but it came in waves taking another part of her each time. She was cared primarily by her elderly brother. Near the end she had to be care for in a care home and ended up in hospital following a fall. By this point she had no communication or mobility, she recognised noone and had stopped eating and drinking. As a family we all went to the hospital and tried to make sure someone was always there with my Grandma. When the subject of treatment was raised my Uncle (Aunts brother) and Grandma were there. Neither had any idea what had been discussed or even if my grandma had consented to something. I believe no one was able to take the time to explain it to them and they were already struggling with grief to actively ask pertinent questions. As a family we all agreed we wanted Auntie to be comfortable with no life prolonging treatment. Myself and my sister (both nurses) had to track down the record of this discussion and communicate it to my Grandma in a way she could understand.

When my grandma passed away (not dementia related) we all knew and when diagnosed she was able to state that she wanted to be made comfortable only. We proactively made sure this was known.

It's such a hard thing and when it's discussed at the tipping point I think it's too.much for many people to take in. Their natural instinct is likely to preserve life, in the situation where it feel like you are "letting a loved one die" it's very hard to think objectively.