Dying with dignity

[NotMyWay]

Currently sat by an elderly loved one's bedside watching them die. Two days of thrashing around and begging me to kill them. Doctors are doing what they can but it's horrific. We don't treat animals like this so why are there not better options for end of life care?

You need money to have a good life - and now you need money to have a good death.
It costs around £10,000 to go to Dignitas. That includes travel, doctors, accommodation, etc. People who can afford to go often have to go before they need to. They have to be well enough to travel. It's cruel to deny everyone - with or without money - the compassionate choice.

To avoid pressure on people who don't want euthanasia or assisted suicide, we could have every adult with capacity make a Living Will at the age of 18. To be regularly reviewed and amended at any time. Perhaps also when the choice is made to go ahead, the patient could speak with a psychologist to check they're fully aware of their decision and that it's one made freely with no outside pressure.

People who can afford to go often have to go before they need to

I agree it’s terrible that people need money and have to abroad for assisted suicide. Is it true that in theory anyone - family members or friend - who accompany the person to Dignitas could be arrested for aiding and abetting euthanasia?
I’ve signed a living Will in which if I get dementia I’m not given antibiotics or resuscitated if I have a stroke. It’s. Ot enough but I suppose it’s better than nothing.
Op, I’m so sorry you and your loved one are going through this awful time.

Yes it's an extra bit of cruelty that people who go abroad for assisted dying often have to go alone. Unfortunately yes anyone accompanying them can be arrested when they return. It's an inhumane law.
I support a campaign organisation, Dignity in Dying. Here's their info about the risk of prosecution.
www.dignityindying.org.uk/why-we-need-change/dignitas/

This is someone who couldn’t go abroad.

I’m finding the nurses to be completely indifferent. They administer drugs on a schedule but otherwise there’s no actual nursing being done. That’s all being left to family. It’s a fucking disgrace and I’m totally done being charming and nice in the hope of her getting some actual care.

I agree with you and I'm so sorry this is happening to you, your loved one and your family. It is immoral.

Charming and nice gets you ignored. It makes you easy to ignore. You need to kick off until they have acted - not just told you they will act, acted. I know it's uncomfortable but it is the only thing that will result in action.

We have the means to give people peaceful quick merciful deaths and instead we (as a society) allow them to writhe in pain and drown on their own fluids etc until their body gives up.

It's not that we allow it, it's worse than that - we force it upon people.

And all because as a society we are too afraid of our own mortality to make appropriate legal provision to protect people from such barbarity.

I’m so sorry you are going through this, your loved one should be checked at least 2-4 hourly and made comfortable. Has breakthrough meds been written up to be administered alongside the syringe driver? If your relative is still in pain then the syringe driver meds need to be reviewed. Please ask to speak to the nurse in charge if no dr is available. No palliative patient should suffer like this 💐

Ask for an urgent treatment review in writing. Email is quicker (tell them hard copy to follow). Polite but assertive. Short and to the point. The current pain relief and sedation isn't working. Your loved one is suffering intolerable pain and distress.

I am so sorry you and your loved one are going through this. I would advise asking for an urgent review by Palliative Care.

I’m sorry op hoping for a peaceful passing for your loved one.

Notmyway I really feel for you
2 years ago we had the same with my lovely dad . He was at home and once he started getting agitated they put in the syringe driver . That was better but one of us had to sit with him all day and night to stop him pulling it out in more lucid moments. Sometimes in the middle of the night it would wear off and he would wake up groaning in pain and we would have to call the on duty nursing team and endure hours of listening to his suffering . I was so relieved for him when he finally died.
It's horrific and barbaric , when they put in that syringe driver it's the point of no return and that's when peaceful euthanasia is required . I'm a vet , if I let an animal die like that I would quite rightly be struck off the register.
Now almost in the same place with my mother and considering her going to a hospice , even if we can't visit , as I honestly can't do that again . I think I actually have ptsd it was that bad
Massive hugs
They need to massively up the meds , there's no excuse in a hospital setting , keep making a fuss

Anybody (adult and of sound mind) can arrange an Advanced Medical Directive which informs treating doctors of what end of life care they will or won't accept. So somebody
could decide in advance that they in certain circumstances they will not permit life-sustaining treatments, parenteral feeding, ventilation or resuscitation etc.
You can also appoint a trusted friend or family memmber to have Power of Attorney to make sure the medical directive is honoured.

    I'd recommend anyone old or  ill to make those arrangements while they still can, especially during covid when there's a higher risk of needing them.

For advance directives. Unfortunately they don't offer a way out of pain or lack of dignity but as pp say it's better than nothing.
compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/

There is an advanced directive. They wanted no further treatment. But there should be proper pain relief and sedation to go with that. No one would choose 3 days of this. If they’d chosen ventilation they would have at least been properly sedated.

I’m so sorry. It sounds like you are in an horrific situation.

Refusing life sustaining treatment should not mean no pain relief.
There's info here.
www.nhs.uk/conditions/end-of-life-care/withdrawing-treatment/
It says
The palliative care team will make sure you're comfortable and do not feel pain or distress.

I lost my dad last year, similar situation but we were at home under the care of hospice team. The hospice nurses kept adjusting the meds in his syringe driver till he was calm and not agitated. Are you under palliative care? Can you transfer to hospice? So sorry for you. I'm with other posters, you need to make lots more noise. Xx

Where are you? Hospital?

Hi NotMyWay,

I am so sorry to hear this. If you are in a hospital setting I would phone the main switchboard number of the hospital and then ask to be put through to the senior nurse in charge of the hospital. Then explain the situation to them. I’m sure they will come down and see you and help sort this out. There is always someone senior on duty. Thinking of you 💐

FUCK YOU NHS!!!!!!

Well overdue her meds and wet, in need of changing while they fanny around with no sense of urgency.

I'm so sorry

I'm so sorry. This is horrendous.

Midalzolam doesn't really suit everyone, despite being the go-to for terminal agitation. It makes some people hallucinate very distressing stuff.

Could you ask for some IV diazepam to see if that works better?

notmyway I am thinking of you and your loved one .I am so so sorry .

It sounds bordering on the criminal .

I'm sure it's the last thing on your mind but print this thread off/keep notes .Tell the hospital you are doing this and that you intend to write to your local newspaper .