If you have seen end of life care what would you put in a POA

[SpinningCat2]

I'm setting up a health and welfare POA , if you have seen / administered end of life care what would you put in a POA?

Is there a "usual" set of circumstances that I can quote where I would request a "do not resuscitate "

What's the phrase to use to stay , basically , if I'm suffering , in pain , with out capacity , don't prolong my life .

Do I have to specify , no food , no water etc

Thanks

You can look at the RESPECT form and advance directives to give you an idea, what if you were to have an accident or emergency that left you unable to take decisions at the time but was treatable and reversible. Are you talking about your imminent and inevitable death where there is no prospect of recovery where you just wish to be kept as pain free and as comfortable as possible .

Sign a do not resusitate form also if your getting cares in for end of life care they will probably leave you fluids and some food but if you don't want it you can just leave it they can't force you to eat or drink its your choice x

Thank you for the advice , I'll have a look at the respect form.

The archive about carers and food / drink us exactly what I mean

Thanks

What you're sure you’ll want might be very different to what you might actually want when the time comes - despite what you’re utterly sure of now.

Doctors won’t refer to the LPA before making decisions “in the heat of the moment”, it’s more likely to inform actions for the care home etc to follow - eg wether a one-way trip to hospital would be in your best interests.

Tube-feeding wouldn’t generally be used if someone is in the very final pages of life - pointless suffering etc.

My DF care home have had the conversations around what treatment paths he/we would want - eg if he had an infection needing IV antibiotics in hospital, if he needed additional oxygen (eg Covid) - would we want him to go to hospital or stay comfortable in the Home. So more like “how much suffering would he /you have him put through in order to stay alive a little longer”. Dads answer to that now would be very different to what he’d have said 5 years ago: his past self is completely eroded by dementia.

I’m reasonably sure they’d not refuse him food or water even if he clearly stated in POA forms that this was to be done once he was unable to manage cutlery (or whatever), and whilst he definitely would have wanted that when writing PoA he definitely wouldn’t want that to happen now. It’s an interesting thought - how much should your current, able self be able to make decisions for future, cognitive-impaired self?

A PoA just gives your nominated person the ability to make decisions on your behalf when you lack mental capacity. These decisions have to be in your best interests but if your wishes were not clearly documented previously this can be difficult to determine. I dontbthink there's scope in the PoA documentation to record your specific wishes. I think what you’re referring to is an advance decision to refuse medical treatment.

www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/

I suggest discussing this with your GP or consultant, they can talk you through the RESPECT form process which is another way of recording what your wishes would be in terms of treating disease or prioritising comfort. An ADR is legally binding, the RESPECT form (I believe) is not, it is a recommendation for HCPs to follow based on your documented preferences. In practice I've never seen clinicians make decisions at odds with a respect form although I have seen them reviewed and rescinded where patients clinical conditions and/or wishes have changed.

As an ex district nurse of many years, I would always prefer not to die at home.
Too many disjointed services, miscommunications, broken promises, unrealistic expectations, lack of staff, etc etc.

What you need is An Advance Directive. This outlines what treatment you may wish to refuse in the event of illness or accident.

It will need to be signed and dated by an independent witness who must observe you signing it. You then give it to your GP to be included on your medical record. You may need to review and re sign it each year to ensure your wishes are still current.

You can download the forms online and these will give you guidance as to what you need to consider when you are planning on refusing treatment and interventions.

I put something like, ‘If I should develop dementia, or any other condition where I am unable both to care for myself and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

Dh put the same.
I hope that would cover the badgering and pestering to eat and drink, when the person clearly didn’t want to, which I witnessed more than once in my mother’s care home. I know it was done with good intentions, but TBH I just wanted to yell at them to leave the poor person alone.

Thank you all so much for the advice, lots to think about.

Thanks

You need an Advance Directive (signed in presence of a witness) not a POA for what you're considering.

I used the one on compassionindying.org - it takes you through the common options.

You do have to be very specific - including that you still want pain relief even if you are refusing other interventions, for example.

If an Advance Directive is correctly signed with a witness then it is legally enforceable and would be a criminal offence for HCPs to provide an intervention you have refused.

You can't use them to request interventions, only refuse them.

Anybody who wants their wishes followed needs a legally enforceable AD. Anything else will be ignored (largely because anything that isn't legally enforceable won't be checked for by staff and the message won't get through).

I’d use it to specify yes to painkillers but to explicitly not consent to fluids being withdrawn - I don’t actually object to family & medical staff agreeing that the time has come but in that case I would want to be kindly ‘put to sleep’ with medicine straight away like a cat rather than suffer an extended period of dehydration to eventually go kill me. If putting to sleep isn’t possible legally, also reasonable, but in that case I think the ethical grounds for allowing forced dehydration is nonexistent, so lots of drugs until natural death it is.

compassionindying.org.uk/ Also mentioned above by a PP

This website has very good forms to complete to cover all eventualities, with lots of space for your own thoughts, wishes and considerations. Plenty of prompts for things that you may not have thought about.

Can be updated as often as you want.

Just re-iterating what others have said, you need an Advanced Directive a well as arranging someone to be your POA for health and finances.

If lacking capacity (and felt to be permanent by a HCP, rather than a fluctuating such as a delirium or illness it is thought I have a reasonable chance of recovering from) I would not want any life-sustaining care except to ease pain and suffering. I would want community care only and not for transfer to hospital unless in the case of acute fracture where this can be casted/fixed quickly before transferring back home.

I wouldn't want any artificial feeding nor IV/SC fluids if felt to be futile. As the body shuts down people lose their appetite and thirst. It's a natural part of dying, yet we fight against it often until the bitter end causing distress.

It's a good idea to run through different scenarios in your mind and ensure you discuss everything with your family to ensure it is not a surprise what the advanced directive contains.

Through my job I've seen a lot of deaths and a lot of futile interventions leading up to it. I think it's an excellent idea to think about these things early. My retired parents think that I am morbid and refuse to discuss their wishes (despite me having POA for health for both of them), preferring instead to stick their heads in the sand!

Such great advice I will certainly go down the AD route .
Thank you all.

Our experience was that it doesn't much matter what you do. DMIL had a DNR and a POA, but both were ignored completely by hospital, care home and hospital again, resulting in ten days suffering that could so easily have been avoided. DH is still traumatised three years on.