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?

Cherry, why are you so against deciding to have a dignified death? As others say, if you see your DF having multiple strokes, become incontinent, lose track of what he is saying, have eposides of real anger and touch inappropriately the care home staff due to the illness.

Is that OK with you knowing that he is just waiting for death and would like a release?

I wonder if you are a Catholic as is my DF and that is what is stopping you from empathising with others on this thread that have relatives who are shells of themselves and often in great pain and depression?

The other thing about Dignitas is that as assisted suicide is illegal in the UK, relatives run the risk of prosecution if they accompany their parent to Switzerland, so they have to go alone. Have just read an article about a woman who is doing just that and has admitted that she will have to die earlier than she would wish so she is still physically able to make the trip alone.

Unfortunately, christians believe that suffering in life is necessary because it brings people closer to god and facilitates a greater connection with christ because he suffered on the cross.

This is the danger of enabling religious people to have influence within society. They do seem to have difficulty accepting that not everyone buys into these belief systems.

Allowing a natural death and assisted dying are a bit like termination of pregnancy. If you don't believe in these things, then don't do them, but accept that, in a free society, there will always be things that one won't accept, but that's not a reason to deprive others of some perfectly reasonable human rights.

All this talk of 'murder' is highly insulting and offensive.

I think dementia is now so widespread that we need to properly plan for it. The vast majority of care home residents have dementia, but the system seems stuck in the past when life expectancies were lower and people were more likely to die of heart disease or cancer, horrible but relatively swift compared to Dementia, ( I say this after watching my Nan die of cancer, she was diagnosed and in hospital within a month, died about 6 days later and was still able to communicate with her family a couple of days before she died, she was in pain but made comfortable, I was with her when she died, it was very peaceful). In contrast to this watching my Dad slowly disintegrate over the last 16 years is terrifying and to be honest I don’t even think he is close to the end. Dad’s care isn’t covered by CCH because his care needs are deemed social, at the moment he scores high on behaviour, when he becomes less mobile he will loose his high score for behavioural problems so his score will effectively stay the same as he progresses, so will likely never be given nhs funding, despite the fact that if he didn’t have what is an actual bloody disease he wouldn’t need care. But it’s a box ticking exercise designed to exclude the majority of people who need care. This kind of blasé dismissal of facts really worries me that HCP do not really know what to do with people with dementia when they are in the early stages and in denial so do not engage with diagnosis, let alone the later stages, it seem preservation of bleak existence is the number one priority, and don’t even get me started on middle stages and the aggression, delusions and violence family members endure being something they now just have to put up with and forget and try not to be traumatised by.

@SinisterBumFacedCat I think the financial implications complicate matters enormously because everyone is fearful or over compensates in case decisions are made based on finances or to avoid that impression. (Similar to emotional guilt)

At the same time that financial situation causes chaos and much stress to a family at a time of great stress anyway.

I did find it ironic that they were determined to refuse CHC despite the obvious need due to illness but happy to spend out on inserting a pacemaker in someone patently very unwell. My sister gets CHC - she ticks exactly the same boxes as mum did...in some ways less because she wasn’t as difficult to manage, no aggression or hallucinations. But she had no property they could come after. Go figure.

I read an article from a man who did not consent to a pacemaker and described how his father (much frailer) was given one “in his best interests”. He compared his and his fathers decision and concluded that decisions are taken which are actually opposite to those that might be made if capacity was there. He felt there was a desire to overcompensate due to risk of accusations of murder etc.

In the end they decided to award EOL CHC emergency funding to mum because she was bed blocking in hospital and nursing homes kept refusing her because she was so difficult. She had a further assessment a few months later when she didn’t die in the CHC allotted time and failed to demonstrate she was EOL. She died before we were informed of the decision.

Legally speaking I would like to see a repetitive test (let's say over a 6 month period) to ascertain capacity and once it has gone to some advanced extent, I would like to see doctors have power to withdraw treatment. I don't think we have the money as a society to keep people alive unnecessarily - as far as I am concerned whether your mind is in effect gone or your body, it should amount to the same thing. I do not think families should be making those decisions in the future. I have watched 2 very old people close to me have to go through end stage dementia - I would say at least the last 5 years of their lives were not worth living and they were not happy. How bizarre a society are we that we kept them alive and have huge amounts of children on the poverty line. In fact, my other grandmother was lucky to have a fall and die from that - she feared ending up with capacity the most. The whole Corona vaccine debate is bringing all of this to the forefront again. I would prioritise a BAME father of 5 in his 40s above a 85 year old with severe dementia any day, but it seems our government does not agree.

@TooOldforBouncyCastles

I would agree with the overcompensation view. It also happens in younger people with end stage neurodegenerative disease who can't advocate for themselves and whose family can't either or they don't have any family.

Again, we have Shipman to thank for this. Doctors will treat and keep treating in order to prove themselves blameless should the person die. To err on the side of caution, even when it cases great suffering, is preferable. This perverse and cruel situation needs to be addressed and a realistic and mature examination of end of life issues urgently needs addressing.

For those who choose suffering and living until ancient, allow them to. Ensure their life is protected and sustained at all costs.

For those who choose quality over quantity and don't wish to suffer, allow them to refuse treatment or to die peacefully by changing the law.

Respect both types of people.

It is grossly unethical to prolong suffering or to force a person to suffer.

Shame on every person complicit in such barbarity.

Feelingnonstalgic the problem with what you are suggesting is that dementia, especially in the early stages, is a fluctuating condition. With certain types of dementia (e.g. Lewy Body dementia), that is even more extreme - someone can literally have capacity in the morning, but not in the afternoon. In the later stages it's pretty clear-cut and in the very early stages where you are diagnosing someone with mild cognitive impairment it's also pretty clear cut, but through much of the progression of the disease, it's really not. (I used to work in supporting dementia research).

Getting doctors to withhold treatment is incredibly contentious, but what I would like to see is a move towards just that, in consultation with relatives. When my father developed his final illness, it wasn't difficult to obtain my mother's consent to go with palliative treatment, because it was handled sensitively and with care. She was very, very sad, but she could accept that this was the best course of action. That process did however take time and the intervention of a multidisciplinary care team, medics included. Making that happen routinely in the health system here is going to be a challenge.

@Bathroom12345

Cherry, why are you so against deciding to have a dignified death? As others say, if you see your DF having multiple strokes, become incontinent, lose track of what he is saying, have eposides of real anger and touch inappropriately the care home staff due to the illness.

Is that OK with you knowing that he is just waiting for death and would like a release?

I wonder if you are a Catholic as is my DF and that is what is stopping you from empathising with others on this thread that have relatives who are shells of themselves and often in great pain and depression?

Absolutely not against a dignified death. Every death should be made dignified and peaceful, where possible. Clearly traumatic deaths cannot be but every age related death should be planned for with full consideration of the whole person. Everyone should be enclosed have a RESPeCT assessment completed and updated. Every should have access to good specialist palliative medicine input.

What I am against is killing people unlawfully. That feels reasonable. If someone with cognitive ability to make their decision decides to commit suicide, so be it.

It is those without that ability that need the most protection. We can’t (and no country has) a law that allows us to kill someone because their existence fails to sit with our notion of quality of life. That places many peat huge risk of being killed.

Assisted suicide is a vastly different thing to euthanasia. Not the same debate at all.

@Feelingnonstalgic

Legally speaking I would like to see a repetitive test (let's say over a 6 month period) to ascertain capacity and once it has gone to some advanced extent, I would like to see doctors have power to withdraw treatment. I don't think we have the money as a society to keep people alive unnecessarily - as far as I am concerned whether your mind is in effect gone or your body, it should amount to the same thing. I do not think families should be making those decisions in the future. I have watched 2 very old people close to me have to go through end stage dementia - I would say at least the last 5 years of their lives were not worth living and they were not happy. How bizarre a society are we that we kept them alive and have huge amounts of children on the poverty line. In fact, my other grandmother was lucky to have a fall and die from that - she feared ending up with capacity the most. The whole Corona vaccine debate is bringing all of this to the forefront again. I would prioritise a BAME father of 5 in his 40s above a 85 year old with severe dementia any day, but it seems our government does not agree.

You don’t need that to withdraw treatment. An advanced directive gives a legal right for your wishes to be considered. You can donate power of attorney in healthcare decision making.

Doctors can already decide not to offer treatment if it is deemed inappropriate or futile. You can’t insist on treatment, but only withhold consent to treatment offered.

@VinylDetective

I have to say that what little faith I had in end of life professionals has been completely destroyed by those posting on this thread. It has also made me utterly determined to take any measure possible to ensure I never fall into their hands.

To define the greatest kindness possible - ending ongoing suffering - as murder leaves me completely incredulous. If we have the decency to treat our animals with that kindness, there’s no excuse whatsoever for withholding it from the humans we love.

I hope by the time I’m deep in dementia end of life professionals will be sufficiently enlightened to let nature take its course and stop playing god.

In the laws of most countries, killing someone is considered murder, or at least manslaughter. It’s not a nice word but it’s accurate. It’s not barbaric, it’s upholding the law. We can’t go around deciding which lives are valuable and which are worthless. Where does it stop? What about the children with complex disabilities? What about the elderly person with depression?

Who is so arrogant they feel they can determine the quality and value of someone else’s life? The focus has to be on ensuring good health and social care that is accessible to all.

Doctors can already decide not to offer treatment if it is deemed inappropriate or futile. You can’t insist on treatment, but only withhold consent to treatment offered. Isn't the OP about this, not murder but doctors feeling able to not offer treatment because they are worried about the family reaction.

I think you are refusing to discuss this and just keep on about murder which I haven't seen the OP advocate.

@ancientgran

Doctors can already decide not to offer treatment if it is deemed inappropriate or futile. You can’t insist on treatment, but only withhold consent to treatment offered. Isn't the OP about this, not murder but doctors feeling able to not offer treatment because they are worried about the family reaction.

I think you are refusing to discuss this and just keep on about murder which I haven't seen the OP advocate.

Having followed this thread and the comments, I totally agree with @ancientgran. The OP was wanting to discuss not continuing/giving treatment when there is no or very little chance of success, but that many families (in their experience) ask for that treatment, others (including me) have said that the HCPs involved, or because of the way systems like 111 work, treatment that is inappropriate or futile is offered and given, often through fear of being accused of murder, exactly the way you are. As someone said way back, it's an arse covering exercise and has nothing at all to do with people's comfort and dignity and people are genuinely suffering because of this. The outcome - death - still happens but in a lot of cases it is drawn out and distressing and painful, not in any way dignified. A shorter in terms of time death, where death is unavoidable, that is pain and distress free, is far more preferable to a longer and drawn out death with pain and distress. I've seen it, I've witnessed it, many others have on this thread too as professions and as family members. You continue to ignore it and keep using the word murder. I sincerely hope you listen to your patients and their families better, I really do.

My mum has dementia and has now gone into care for her safety. She is physically in fairly good nick but she will not remember to eat or drink at all on her own and needs constant company.
I'm one of 4 siblings and we have discussed many things about her care and the one thing I notice is that sometimes decisions are less about what is good for mum but what is good for my siblings
People find it hard to separate their feelings from what may be rationally the better option. I do understand this but its hard.
Only 2 of us have POA so have discussed her health decisions and thankfully agree that we should only treat mum for things if they cause distress or discomfort not just to extend life, we don't agree for the same reasons but that doesn't matter as the outcome is the same.
My feeling is that she's no longer living her life, and her life now causes her distress so as long as she's happy and comfortable, I do not advocate extending her suffering, however my brother would like her to continue to live no matter what as he feels he wants as much time with her as possible however he doesn't trust mainstream medicine so doesn't advocate medical intervention at any level (getting mum a flu jab was a major negotiation, funnily enough none of his kids are vaccinated)