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?

I have a relative who’s heading that way. Well, nowhere near at that stage yet to be honest but I do wonder myself - at the stage you have described, what quality of life does that person have?
A very emotive topic, hopefully people with an opposing view will come and say why and it will make sense to me because I can’t see the other side of this in my head.
A question though, is it up to relatives to decide whether to prolong life? I thought as a HCP you were duty bound to do so?
Forgive my ignorance, I’m starting down a long path with my relative and there are things I hadn’t even considered yet so my question is a genuine one.

My 97 year old Grandma had very slight dementia which was suddenly drastically worsened when she had a major stroke. She is now wheelchair bound, blind, deaf, mute and incontinent but her body is hanging on, it's no life at all, she just exists now. We've all said it would have been better if the stroke had taken her

I know we wouldn't want or request treatment if she became ill. Obviously we'd want her to be made comfortable but the kindest thing now would be for her to die, I'd have had my dog put down long before he gets to this state

My Dad asked a doctor once if there was anything that could be done to speed up death for his mother who had zero quality of life left and they looked at him horrified. It was never mentioned again. I think he was honestly worried if he suggested to another HCP that he thought her life wasn’t worth living that he’d be banned from visiting or even arrested..

Obviously he wouldn’t have been, to clarify.

However, most of the HCP that he came across were likely unaware of his views given how badly they were received when he shared them. His views were definitely shared within the family. The dementia was a tragedy, the death was not.

@TheChosenTwo. As a HCP I decide if they get CPR. We always discuss a ‘treatment escalation plan’ (TEP) with the family. I don’t know any colleagues who would refuse to give antibiotics and fluids. If family members are insistent that we do CPR then we will usually do one round and then stop, just to keep the peace, rather than point blank refuse. Most families agree for no CPR once the survival rates are explained and the fact that their relative wouldn’t get an ITU bed (you need to live a reasonably independent life and be in good health to qualify for an ITU bed). I have colleagues who think it’s ethically wrong NOT to give antibiotics and fluids. I feel that it’s ethically wrong in every sense to give them. A person who has lost all their faculties and dignity.....and has a poor quality of life that is only on a downward trajectory.....but let’s just treat them to keep them alive on said downward trajectory for a bit longer. I just don’t get it.

My MIL had severe dementia and was very clear when she was still able to articulate her wishes that she didn’t want any interventions and we respected that. She was a former nurse and I think she was many steps ahead of the rest of us as to how things would play out.

Thanks OP for raising this vital issue. Keeping people this sick alive is often cruel - with dementia, you can have zero function, but you still feel pain.

Demanding people are kept alive to suffer should be illegal.

@LzzyHale. I don’t know what HTH means, but I’m guessing it’s not polite.
I’m asking to aid my understanding as a professional. Not all the things I have to deal with professionally are black and white or pleasant. If you have something constructive to add to my thread please help me out. Hurling abuse at me doesn’t help anyone. I’m not going to get an award for asking the first upsetting question on MN.

The question of appropriateness of treatment/ resuscitation should be discussed on admission. If this is not possible then decisions should be made in the best interests of the patient. This may be palliative care (ensure comfort)
It is NOT the responsibility of a family to accept or refuse treatment, it is NOT the responsibility of the family to propose end of life care.

I agree with you OP. My DF had alzheimers and died 20 years ago. I was thankful that he went with pneumonia and before he was bed bound. He hardly recognised me any more and was only going to get worse.

I fully support assisted dying and hope im not kept alive unnecessarily when the time comes.

@Stonehengecalling - after watching my mum suffer (with physical illness plus dementia plus other conditions, plus lack of dignity and autonomy) I signed an Advanced Directive declining antibiotics if I have advanced dementia. I really don't want to go through what my mum went through.

@Supersimkin2 we always try to manage pain and keep patients comfortable. I’m absolutely not suggesting that we don’t treat people and let them die in a distressed state. They can have pain relief and sedation.

I totally agree, have a lot of experience myself and would always opt for the quicker, kinder option. I think some people just have a really difficult time saying goodbye, or being ultimately responsible for the final decision.

Both my grandmothers had dementia and no we didn't want life prolonging treatment.

Just treatment for their pre existing conditions to keep pain at bay (and the frequent water infections that made everything worse).

But they were still both 89 when they went, I wish it had been sooner, neither needed the length of indignity they went through.

There is a book called Being Mortal by Atal Gawande, a surgeon, which talks about this. My overall takeout is that medicine has extended lives and increased survival so much that both doctors and families focus on the survival rather than the well-being of patients, through being well-meaning and hopeful. Unfortunately what this hopefulness does is removes the desire to discuss what happens as death approaches, since the focus is on recovery. For people with dementia, at some point, this becomes unrealistic.

One of my parents has dementia - not too bad yet - And I know that difficult decisions are upcoming. As their child, I would want someone to help me and my parents discuss what they will want, what their expectations of acceptable life are, when they will want to let go, before it is too late for them to make their own decisions. It is very hard to broach this subject with the relative with dementia while they are able to make their own decisions - awkward doesn’t even begin to cover it. By mentioning it you feel that you might be heralding it in some way, or at the very least, reminding them of an unwanted end of life situation, it’s very distressing. But if the conversations aren’t had, then how hard must it be to make the decisions once your parent’s mental capacity has vanished?

I am hoping to broach the subject with my parents so that I can understand the point at which they will prefer for us to let go. It’s not going to be easy.

Because it's not that simple. Because the healthcare professionals call an ambulance and the hospital treats with IV fluids and antibiotics. Because dementia is a degenerative disease and your mum didn't seem that bad six months ago when she was hospitalised but she is now. Or you wish there was an option to refuse treatment but you don't have power of attorney or there's conflict in the family. Or you just keep remembering them how they were and can't believe they're so ill and will never again remember who you are. All of those things. Now I wish for the end so much, quality of life now is zero. It's a horrible horrible illness.

My MIL when she was just about still with us- told us her wishes- when she eventually went into a nursing home with Alzheimer’s we made it plain she was to be given pain relief and if say she fell and broke a bone- she must be treated but otherwise no medical intervention.It was a blessing - it was awful seeing someone who was once so elegant and smartly dressed- walking around aimlessly- unable to ever sit still and unable to speak-sing -enjoy food- she was under 6 stone at the end and wore size 4 clothes if I could find them.She was just a shell- utterly heartbreaking

@YenniferOfVengeberg
It is NOT the responsibility of a family to accept or refuse treatment, it is NOT the responsibility of the family to propose end of life care

Genuine question- who’s responsibility is it if the patient doesn’t have an advance directive? As I said in my OP I’ve only met 2 families in 20 years that requested their relative with dementia wasn’t treated. I’ve literally never seen a TEP in a dementia where everything is crossed off except ‘keep comfortable’. I should probably disclose that I work in hospital, so I suspect the ones that say ‘keep comfortable’ don’t make it to us......but there are an awful lot that do make it to us. I don’t think you will find a doctor anywhere who will say ‘your relative has dementia, so let’s just let them die’. The onus IS absolutely on the family to say that that’s what either the patient wanted or they want, otherwise the default is to treat.

My poor father had lewy bodies dementia that was deteriorating quickly , when he was taken into hospital for a kidney infection 2 of my siblings refused a dnr 2 of us siblings didnt want him resusitated if the time should come , it was tough but in the end he had a heart attack and died in the night , so will never know if they just dnr because they thought it was best .

@Stonehengecalling
It is our responsibility to have discussions regarding resuscitation and appropriate care on admission. The views of the family and their knowledge of the likely views of the patient should be sought, but ultimately these are medical decisions.
A situation where we wait for the family to voice these views, who may well be expecting the same thing of us is detrimental to patient care.
A doctor or a nurse should be aware of this. I'm surprised as you are a HCP you are not.

I think you should have made your thread title clearer. For those of us who have recently had to make this decision, I wish I had known what I was clicking on (I thought it would be about advice etc).

But now I'm here.. it is an incredibly hard decision. My relative had dementia but most of the time she knew who we were still. She loved us and we loved her. To make the decision to not treat her felt inhumane and who were we to decide that her life wasn't worth living? In the end we had to decide to stop treating her because she had a huge stroke and wasn't going to recover but it took a while for some family members to come to terms with that decision. She wasn't ready to go and neither were we. It's not an easy decision and honestly, I don't understand what you need to understand. Surely it's obvious? Love and not being ready to say goodbye. It's hard to accept even when you know what the 'right' thing to do is.

The onus IS absolutely on the family to say that that’s what either the patient wanted or they want, otherwise the default is to treat.
But it's not that simple. I think the hard thing as a family is the realisation that dementia is a terminal illness. I know it's implied, but you just get a diagnosis then are left to get on with it. Until things are so bad that you need help from social services. As a family we spent a long time in the denial state, trying to 'make memories' and avoiding uncomfortable conversations. Unfortunately the progression was extremely swift, capacity lost quickly. And with it, the ability to plan advance directives or LPOA. And even now, things are so bad but you can't believe they'll get WORSE. You just want to do your best. I agree that after the crisis event you wonder if you should have refused treatment, but that's easy to say with hindsight.

Also, every time my mum's been in hospital she's picked up immeasurably, I think due to the IV fluids. Her normal fluid intake is very poor. It just shows how difficult dementia is to manage, even something as simple as getting someone to drink.

I totally agree OP.

My Nan went from an active, sprightly 80 something, who was a bit forgetful sometimes to someone who didn't know her address and was doubly continent, over night - UTI accelerated her mild dementia.

She spent 5 years fading away in a (lovely) care home. When she developed pneumonia and went in to hospital, she was given antibiotics which kept the infection at bay but didn't completely treat the pneumonia. After a week, we, as a family, decided that nature should take it course. She had no life and wasn't the nan / mother / aunty everyone knew. She was kept comfortable and I will swear to my own dying day that we did what was right for her.

I think you're in the wrong job and I'm glad a "HCP" like you didn't get their hands on my mother.