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?

Sorry I meant to say 'the way you speak of your patients ' not parents

Are you not in the U.K.? You are not using language relating to current medical practice and law in England.
Few jobs work across acute hospital settings and the community where people who are bedbound with advanced dementia would be cared for. What is your actual role?

When you say HCP, do you mean a registered nurse with postgraduate palliative care qualifications or a specialist in palliative medicine?

Yes, speedy death wasn't the most kindest or humans of phrases... I get what you're saying and agree with you but your post is very blunt and doesn't appear at all sensitively phrased.

My MIL has advanced dementia. The care home has had the conversation with us, and the agreement is that she will not hospitalised should she become ill.

Can I suggest that the proportion of relatives who actually ASK for treatment to be withdrawn seems low to you, because the vast majority of Alzheimers patients don't make it as far as hospital? You obliquely refer to that, but I don't think you realise just how low the percentage is of people with advanced dementia who make it as far as hospital. Certainly in our concersation with the staff at MIL's care home, this instruction not to hospitalise seemed pretty standard at MIL's stage of the disease.The last time she was taken to hospital was traumatic for her, as she was completely disorientated. No-one wants that.

@shinynewapple2020. Thank you for taking the time to post. When you say I sound ‘so nasty’, can you be specific please. I’m genuinely asking for feedback. I certainly don’t want to come across as uncaring (and have had lots of cards from grateful patients over the years), so I would really appreciate you taking the time to specify exactly what you mean. Thank you.

@CherryPavlova. In the UK. Hospital Dr.

@Stonehengecalling you don't sound nasty to me, you sound professional and concerned. It is a difficult topic and brings out strong emotions.

@CherryPavlova. What terminology isn’t right?

@Stonehengecalling can I be blatantly honest with you.. Your original posts translates as if you really hate your job. I completely agree with your wider context and having lived through the experience of my mother being in palliative care but the way you have phrased everything is devoid of any sensitivity towards families of patients.. Can you understand why they don't want to let go? I was in that exact same position a few years ago and would expect a HCP providing palliative care to be sensitive and want to provide comfort to the families. Your original post makes you sound really resentful towards keeping patients alive as if it's an inconvenience to you.

[quote Stonehengecalling]@CherryPavlova. What terminology isn’t right?[/quote]
Yours.

A doctor in what role?

I think you hit the nail on the head when you wondered if you just dont see the people who's family have agreed no treatment beyond comfort.

My relative recently died in her sleep after 3 years where it was agreed that no treament would be given that she didnt want.

So, she stopped taking all her pills, she wasnt taken to hospital when she had two mild strokes (probably), when she eventually lost her swallow she was given mouth care and would have been given sedatives if she had needed them.

Her heart was incredibly strong - even though she had a pacemaker that didnt have its battery replaced and she lasted much, much longer than anyone would have predicted.

Her life didnt give her much joy in the last year or so. She gave us so much joy that we'd have done anything for her and keeping her out of hospital and in surroundings that were familiar was one thing we could do.

@Pebbledashery. Thank you. Bluntness is usually a good thing!
Can you understand why they don't want to let go?, mostly no, I can’t, hence the thread. And I say that as someone who had a grandmother die after a long period of dementia- it was hideous.

It feels odd to not mention ReSPECT if you are working in elderly care.
Most doctors don’t refer to themselves as HCPs.
Most trust policies are that any DNACPR decision is signed off by a consultant within 48 hours.
It would be unethical and out-with the GMC guidance to expose someone to a futile resuscitation attempt to keep the relatives happy.
The way you describe people living with dementia is highly unprofessional and does not sound like the usual way of describing patients.

I used to work in a care home and I’m pretty haunted by people asking me to help or let them die or watch someone slowly starve to death with their parched mouth open. I was always relieved when the nurses came with the morphine pump thing they would useually pass along peacefully after that.

[quote Stonehengecalling]@shinynewapple2020. Thank you for taking the time to post. When you say I sound ‘so nasty’, can you be specific please. I’m genuinely asking for feedback. I certainly don’t want to come across as uncaring (and have had lots of cards from grateful patients over the years), so I would really appreciate you taking the time to specify exactly what you mean. Thank you.[/quote]

It's the language you use when you refer to them as 'people want me to treat their mute, incontinent, peg fed relative . I don't know why'

It's that this is all you see , the person's frailties/ disabilities .
You don't see the person that they were , that they still are somewhere or who they are to somebody else Your language suggests you don't have compassion , understanding, caring . Like they are just a body .

I think you've hit a nerve with me to be honest . Maybe that's not how you meant it but it's how it feels .

@CherryPavlova acute specialities- and I’m not going to be more specific than that. I don’t know what terminology you think I’m using that isn’t right, but it was all fine at work last week. I’m a fully revalidated gmc registered Dr.

Thank you @CherryPavlova
I agree with what you say

MMMMMmmmm

It's just how you're coming across. You would expect as a Dr you'd have a modicum of empathy.. You're coming across very transactional even if you're not. Perhaps spare a thought for the families who remember their family members having a life and soul.

It's the language you use when you refer to them as 'people want me to treat their mute, incontinent, peg fed relative . I don't know why'

Yep. That made me wince too.

I know that people in tough jobs have to de-personalise things sometimes to stay sane. But despite broadly agreeing with you, your OP was a tough read for those of us who still love our relatives, even if they don't know who we are any more.

@Pebbledashery

It's just how you're coming across. You would expect as a Dr you'd have a modicum of empathy.. You're coming across very transactional even if you're not. Perhaps spare a thought for the families who remember their family members having a life and soul.

...also that.

@shinynewapple2020. Thank you. I guess I was cutting out flowery language to get to the point. Nothing gets me more than a husband/wife/adult child sitting beside their spouse/parent holding their hand and crying over the life that has been. I love listening to the stories or seeing pictures. It has me in tears. And I guess I don’t understand how you want someone you love to keep suffering, knowing that any treatment just prolongs the inevitable. Quite often relatives say ‘we lost x years ago’- so they can acknowledge that the person they love has gone, they just can’t let the body go. Thank you for replying.

@NeedToKnow101

The people who are so pro-life at all costs... are you happy to spend your last year of life doubly incontinent, unable to speak or eat properly, unable to get up and move around, not knowing who anyone is, being moved around from home to hospital and back again constantly, with no autonomy at all?

That's how my nan was for fifteen fucking years. It was horrific. So unnecessary.

My dad went to see her two or three times a week. Then she just died. No idea what of. She was 98.

This year, my dad got cancer and he very pragmatically agreed to a dnr. The carer called us at 3.30am (he was at home, I was staying with them) to say he had gone. No silliness trying to "revive" him. Quite right.

At the start of the Covid crisis I signed a living will and sent it to my mum and sister. Once we get out of this nonsense I'll do a health poa with my sister.

I don't believe in keeping people alive, it's inhumane.

And talking about it is good. And does not mean you are trying to kill people.

@CherryPavlova does MMMMmmmm have a meaning or is it just a typo?