To be very anxious about the assisted dying bill?

[bipbopdo]

I’m surprised by how anxious I am about it. I don’t agree with it at all and I’m not sure there will ever be enough safeguards to justify making it legal. As it currently stands, it’s theoretically possible for someone with anorexia to qualify.

It took less than ten years for Canada to expand eligibility well beyond the original criteria. Assisted dying now accounts for one in twenty deaths there. I’m scared that could happen here.

@Fiver555 what should the association of palliative care do better then?

How would you fix palliative care?

I'm for it. Having seen the absolutely vile things said by those against the bill towards Esther Rantzen and others I have no doubt I'm on the right side of things. Seriously these people claim to be against coercion of the elderly and vulnerable and then turn around and demand to know why ER (an elderly vulnerable person) has not gone to Switzerland already, why she's still here despite only being given 6mths to live 2yrs ago, calling her Esther Rancid etc. they are vile and despicable. What is there to fear from a choice?

It’s not that they fear choice. It’s that they fear loss of income stream. Or they are indoctrinated by religion.

The patient if in extreme pain it's the only solution to relieve their pain. Always do what is best for the patient.

The doctors can manage the meds so that the patient can interact with loved ones , yet not in extreme pain, then increase it so that they are completely unaware of the pain.

The doctors work with the patient to manage pain. It's all very patient-cantered, loving calm environment with the patient leading & in control of their own care plan. I've seen some people manage extreme pain because they want to be fully conscious & aware, others would rather drift away on a cloud of meds - up to them. .

The other solution is the one this bill would allow. I’d rather die having been alert and aware and said goodbye to the people I love than spend weeks sedated to oblivion.

That’s horrific. What kind of people would behave like that?

Talking too him for a few minutes maybe yes but talk to him repeatedly and you will see he has no real clue about actions and consequences he would honestly think death is temporary he doesn't even understand it, it's hard to explain he thinks they have "gone away" then he forgets they were ever here we try to explain but it doesn't process and to be honest I've stopped trying so hard he is happy not understanding

I'm anxious about it - I'm desperately hoping it will get passed! I hope if I'm ever in that dreadful position, in awful pain or losing dignity, knowing I'm going to die, that I'll have the option to end it. I think it's cruel to force people to carry on suffering when they don't want to.

My choice would be to say goodbye to my loved ones & then drift off to the sound of Mozart, Byrd, Handel & others on my play list.

I know. I think they feel they're somehow justified because they think ER won't use it herself and just wants everyone else to be "murdered" they're completely deluded though. Even if that did end up happening (it won't) the people trying to get this bill passed do not want that. It makes me so angry seeing the stuff people are saying on twitter.

I don’t think anyone wants anyone to be “murdered”. I know the people supporting this bill are trying to address something important to them. I do think they’re motivated to minimise the potential downsides/unintended consequences though. It’s not unrealistic to believe that criteria will be expanded rapidly and people will start to be offered assisted dying in place of meaningful treatment when we’ve seen that happen in other countries.

Presumably if lots of people feel the way I do, then palliative care is falling short. That's all.

@Fiver555

But you need to look at why palliative care is falling short, that’s why I asked what ideas you had. There’s been a lot of sweeping generalisations about the problems with palliative care on here, and it would be good to unpick where some of those problems have come from and what would actually solve them rather than using assisted dying as a catch all.

E,g. Lack of access to a hospice bed for specialist pain management and dying in pain - funding Lots of beds closed either temporarily or permanently. They are 1/3 nhs money and 2/3 charity.

Being discharged from hospital without anticipatory medications or equipment because they need the bed / a referral to a palliative care CNS wasn’t made - perhaps being made aware of this patient from paramedics trying to sort them - likely cause ward culture, staffing and pressure on beds (bed pressures comes down to money - fewest inpatient beds in europe)

A patient whose chosen to die at home waiting an unacceptable length of time to be administered medication - 2/3 hours because there’s only 1 nurse whose palliative trained on for a large team of district nurses - culture and staff retention of nurses.

I know full well that people can have awful deaths and there are huge problems but saying AD is a catch all from all the problems there are, and blaming one organisation is simply unacceptable.

A patient whose chosen to die at home waiting an unacceptable length of time to be administered medication - 2/3 hours because there’s only 1 nurse whose palliative trained on for a large team of district nurses - culture and staff retention of nurses.

This. Except in our case it wasn't 2/3 hours, it was a whole weekend because our loved one hit 'terminal agitation' on a Friday night and no-one could come because it was the weekend. They came on Monday. It was horrific for everyone.

This sounds very similar to my experience.
When my parents died at home in the late 1980’s a few months apart (that was a fun year…) the district nurse came and administered a drip and they didn’t wake up again. Quiet and peaceful.
My Gran died in a nursing home 3 years ago, screaming and shouting for a good 6 weeks with the pain and agitation. Although the home had the drugs there on the premises there was no district nurse to admister them. When they did eventually turn up, if my Gran was asleep from exhausting herself from fighting the hallucinations she was having, off the nurse went without giving any drugs and as soon as she woke up it all started again. It was horrific.
There is definitely a real reluctance to administer drugs and shorten life. when I questioned why they couldn’t just give it when she was quiet, “well it’s addictive” FFS, she’s nearly 100, bed bound for the last 2ish years, I don’t think her getting dependant on it at that stage was a big issue…

We need much better palative care available to all that want it. But we also need the option of AD for those that’d rather check out a few weeks earlier and avoid the whole unpleasantness.

I am also concerned about this bill.
But OP please try not to get too anxious about it.
My DD was very seriously ill with Anorexia and is thankfully, after a long bumpy journey, recovered. However she would have absolutely asked to use assisted dying at the time if it was open to her, both her body and mind were in a terrible state and we were warned by doctors about her prognosis. I can remember at the time listening to a newsreport about a young woman in the Netherlands suffering with anorexia who chose and was allowed to use assisted dying. It haunted me.
There was a news article about about anorexia and assited dying in the Telegraph at the weekend.
So it does scare and worry me that like in Canada and Netherlands the criteria will be expanded the rules will be relaxed, it's inevitable really.
The safeguards have already been weakened from what was originally suggested.
No one wants to die a painful death. Personally I think 2 doctors making an assessment and giving morphine at last days/hours to avoid pain and distress so you can slip away is the best option but clearly Harold Shipman put a stop to that.
PP mentioned dementia but the bill won't help people with dementia, and tbh my mum, who is, at end stage, is now not distressed or agitated but content and sleeps a lot.
During the agitation, distressing stage she still had an more happy moments than distressing ones.
It won't help people with Parkinsonism, MND, Ms etc.
I think it is mainly intended for people with cancer but I really think money would be better used for more hospice places and better palliative care.
And of course timely diagnosis and access to treatments.
There will be vulnerable people who will be caught up in this bill.

I disagree. The terminal agitation is a reflection of the pain the dying person is going through. Having worked in healthcare for years dealing with pain you assess the level of pain by how loud a patient complains. The agitation is not the usual whinging that accompanies the moderate pain levels many of us experience but is beyond the severe pain where people are often very still, breathing shallowly and trying to minimise any movement. The body is shutting down, and with it the balance of normal blood levels resulting in all sorts of problems.

The agitation is more of an unconscious base reaction to pain where the body takes over any conscious control mechanism. It is often more obvious when they are semi conscious. The animal like sounds a person makes while in this phase cause a deep reaction from those around to want to try and remove the pain. Sedation allows them to sleep a little.

So yes sedation is for those observing but it is a gut reaction to the loved one’s agony. You just want them to be at peace and out of pain. It is definitely not for your own benefit. You would dearly love for them to be awake until the end so you can spend quality time with them but usually they slip into unconsciousness a day or so before they die.

Having recently witnessed my DSis death in a brilliant hospice, even the very best palliative treatment is brutal. It’s not a pleasant sitting round the bed while they quietly slip away. Well the last few hours are close to that, but the weeks leading up to that point are cruel and unnecessary.

My DSis had spread to her brain and was at times confused, frightened and paranoid. She would become distressed if someone wasn’t with her 24/7. If you had known my DSis you would have realised how out of character this was. She had always been an incredibly independent and self advocating individual. She had survived breast cancer at 34 and then died of an unrelated cancer. It was so cruel.

We were provided with a proper bed in her room throughout her stay so that one of us could sleep alongside her every night.
Nights were the worst when she was unsettled and managed only 30mins of sleep between meds.

It is a myth that palliative care of cancer patients, even at its best , confers a dignified and peaceful death. Dementia is a very different beast.

Stop misrepresenting people because they don't agree with you.

No-one is belittling you or shaming you. You will have your choice. You want to take away other people's choices.

As for palliative care it doesn't work for everyone as I know from a close friend. Also it is not just the pain of a drawn out death it's the indignity, confusion, loss of everything that gives you joy,

Surely if someone doesn't want to choose assisted dying the only response is to accept that without comment....it's pretty unpleasant to say, well then you'd better be prepared for a long painful death...as if one choice is superior. Some people might want it and others won't. But my overall point is the concerns I have, are already coming into play on this thread.

My father died on Friday after battling cancer. His last 2 days were horrific, both for himself and my sister and myself. He couldn’t communicate, eat or drink. His heart racing then dropping. He was hallucinating.

I wouldn’t treat my dog like that. I can only hope he didn’t know what was happening.
Anyone who is unsure of the assisted dying should listen to families and friends who’ve been through what we have. Myself and sister have also been here before as we cared for our mother in her last 6 weeks which was just as traumatic.
The sooner the UK has assisted dying the better.

Look how benefit claimants and/or disabled people are spoken about in our society in terms of money...scroungers and such like. I can envision a time where those who don't choose assisted dying will be demonised as leeches draining the NHS coffers...how selfish to want to live for an extra few months at the expense of the hardworking tax payer.

Wouldn't this apply to those with mental disorders linked to physical health such as anorexia though? A person refusing to eat will face death within a period of time, but the disease itself is a mental one that has the possibility of being addressed. This is just one example of the kind of real and prevalent situations that the mental health professionals are worried about I think.

If someone wants to take other people's choices away I can make any response I choose.

It's far more unpleasant to expect someone else to die in agony against their wishes because you disagree with AD than to offend someone's feelings on SM. I don't think either choice is superior - making it up again. I think AD would be preferable to me in those circumstances and that having a choice is vastly superior.

Your concerns are not being played out. You're just misrepresenting disagreement as coercion.

I put my lovely boy to sleep in October, he slipped away peacefully - we had exhausted all medical options, no amount of money could save his life but we could save him from pain.