Assisted Dying

[pete75]

^ "I have seen at first hand that pain relief in hospitals can fail to bring suffering to an acceptable level. If I were facing a bad end in a hospital I would hope and plan to avoid that. ..."

And hospital or more specifically hospice care is the BEST option. It's when discharged to home that it all gets really awful, including for the "carer".

And even Streeting must know that he's talking drivel - there'll never be enough funding for universal hospice care. To argue that inadequate palliative care means that assisted death should be outlawed is turning logic on its head. He and his ilk just want poor folk to die in pain and squalor, keeps them in their place. At the bottom...

Really.
My wife died of terminal cancer earlier this year. She was in hospital, but insisted on coming home, which she did for the last couple of weeks. The hospital were against it, saying a suitable care package couldn't be arranged but the GP practice and their nurses thought differently. Carers were arranged to visit 4 times every 24 hours, the district nurse came every morning, nurses from St Barnabas Hospice in the afternoon. Her GP visited regularly and told me she was currently their practice's highest priority and to call them anytime I thought necessary. We were issued with lots of pain killing medication and we had a so called single point of contact phone number for 24 hr a day assistance. If she was in severe pain during the night, which she was once, a nurse arrived within 25 minutes of phoning.
Quite frankly I find your post at best libellous and, having experienced the services I've described, somewhat offensive to the medical staff involved in terminal care. Even the carers, mostly Phillipinos on minimum wage, obviously regarded what they were doing as more than just a job.

[Carlton green]

^ "I have seen at first hand that pain relief in hospitals can fail to bring suffering to an acceptable level. If I were facing a bad end in a hospital I would hope and plan to avoid that. ..."

And hospital or more specifically hospice care is the BEST option. It's when discharged to home that it all gets really awful, including for the "carer".

And even Streeting must know that he's talking drivel - there'll never be enough funding for universal hospice care. To argue that inadequate palliative care means that assisted death should be outlawed is turning logic on its head. He and his ilk just want poor folk to die in pain and squalor, keeps them in their place. At the bottom...

Really.
My wife died of terminal cancer earlier this year. She was in hospital, but insisted on coming home, which she did for the last couple of weeks. The hospital were against it, saying a suitable care package couldn't be arranged but the GP practice and their nurses thought differently. Carers were arranged to visit 4 times every 24 hours, the district nurse came every morning, nurses from St Barnabas Hospice in the afternoon. Her GP visited regularly and told me she was currently their practice's highest priority and to call them anytime I thought necessary. We were issued with lots of pain killing medication and we had a so called single point of contact phone number for 24 hr a day assistance. If she was in severe pain during the night, which she was once, a nurse arrived within 25 minutes of phoning.
Quite frankly I find your post at best libellous and, having experienced the services I've described, somewhat offensive to the medical staff involved in terminal care. Even the carers, mostly Phillipinos on minimum wage, obviously regarded what they were doing as more than just a job.

My commiserations on your loss.

The quality of terminal care can - and apparently does - vary enormously so it would be a very good idea to respect the experiences of others. I’m glad of the outstanding care that your wife was given, but your experience is not necessarily universal.

[pete75]

^ "I have seen at first hand that pain relief in hospitals can fail to bring suffering to an acceptable level. If I were facing a bad end in a hospital I would hope and plan to avoid that. ..."

And hospital or more specifically hospice care is the BEST option. It's when discharged to home that it all gets really awful, including for the "carer".

And even Streeting must know that he's talking drivel - there'll never be enough funding for universal hospice care. To argue that inadequate palliative care means that assisted death should be outlawed is turning logic on its head. He and his ilk just want poor folk to die in pain and squalor, keeps them in their place. At the bottom...

Really.
My wife died of terminal cancer earlier this year. She was in hospital, but insisted on coming home, which she did for the last couple of weeks. The hospital were against it, saying a suitable care package couldn't be arranged but the GP practice and their nurses thought differently. Carers were arranged to visit 4 times every 24 hours, the district nurse came every morning, nurses from St Barnabas Hospice in the afternoon. Her GP visited regularly and told me she was currently their practice's highest priority and to call them anytime I thought necessary. We were issued with lots of pain killing medication and we had a so called single point of contact phone number for 24 hr a day assistance. If she was in severe pain during the night, which she was once, a nurse arrived within 25 minutes of phoning.
Quite frankly I find your post at best libellous and, having experienced the services I've described, somewhat offensive to the medical staff involved in terminal care. Even the carers, mostly Phillipinos on minimum wage, obviously regarded what they were doing as more than just a job.

My commiserations on your loss.

The quality of terminal care can - and apparently does - vary enormously so it would be a very good idea to respect the experiences of others. I’m glad of the outstanding care that your wife was given, but your experience is not necessarily universal.

So no one should post good experiences, only bad ones, and the post I was replying to implied that all home care was bad.. There's a great body of opinion in this country that likes to paint NHS services in the worst possible light. Sorry I haven't jumped on that particular bandwagon.

[djnotts]

I have nothing but admiration for NHS staff and services, but stand by my "libellous" (?) comments on palliative care as I experienced it.
Extracts from my contemporaneous records.

I was discharged early from tongue cancer surgery so that my wife could also be discharged. As i wrote at the time:
"J is to be discharged home tomorrow - after yesterday being promised at least a week of emergency Social Care (?) because of our combined situation, today that was revised to none whatsoever. When I innocently asked if that because we are not on "benefits" answer basically was "yes". I rarely resort to "those who've always looked after themselves get nothing...." populism but I can understand the sentiment! And as for Post Code Lottery issues, it has been suggested that if we rent a home within Nottingham City we will get much better support! "

A little later,:

"J was at home with me as carer, altho' after 3 weeks we got two short visits a day from a solo Soc Care lady which for 4-5 days I had to escalate to team of two 4 times a day once she was so weak that I could no longer help her move while I changed bed etc until last Wednesday. Long story short.....after 5 and a bit weeks at home, which is what she wanted, then transferred to a Hospice."

None of the help promised by the hospital staff materialised for the first 3 weeks (of 5). From first class care to basically none.

Getting into a hospice (for her last 4 days) was largely a matter of luck - and a lot of effort on my and my daughter's part. Everything I am hearing lately indicates that the entire hospice network is in financial tatters.

[pete75]

I have nothing but admiration for NHS staff and services, but stand by my "libellous" (?) comments on palliative care as I experienced it.
Extracts from my contemporaneous records.

I was discharged early from tongue cancer surgery so that my wife could also be discharged. As i wrote at the time:
"J is to be discharged home tomorrow - after yesterday being promised at least a week of emergency Social Care (?) because of our combined situation, today that was revised to none whatsoever. When I innocently asked if that because we are not on "benefits" answer basically was "yes". I rarely resort to "those who've always looked after themselves get nothing...." populism but I can understand the sentiment! And as for Post Code Lottery issues, it has been suggested that if we rent a home within Nottingham City we will get much better support! "

A little later,:

"J was at home with me as carer, altho' after 3 weeks we got two short visits a day from a solo Soc Care lady which for 4-5 days I had to escalate to team of two 4 times a day once she was so weak that I could no longer help her move while I changed bed etc until last Wednesday. Long story short.....after 5 and a bit weeks at home, which is what she wanted, then transferred to a Hospice."

None of the help promised by the hospital staff materialised for the first 3 weeks (of 5). From first class care to basically none.

Getting into a hospice (for her last 4 days) was largely a matter of luck - and a lot of effort on my and my daughter's part. Everything I am hearing lately indicates that the entire hospice network is in financial tatters.

Hmm I don't describe to the view that those on benefits get everything and those not on benefits get nothing, certainly not my experience. St Barnabas run what they call hospice at home and their staff are excellent. If the hospice movement is in financial tatters, moaning about it will make no difference - giving them decent donations will.

[pwa]

I have heard repeatedly that here in Wales, hospice provision is struggling financially right now. I have always been unable to understand why this provision isn't part of what the NHS does. But putting that to one side for a moment, maybe it is time for those of us who have some disposable income to get the plastic out and set up a regular donation.

[Tangled Metal]

I find the idea that opinions opposite to some on here are less worthy. I know I fit into that category a lot but I do not care.

If you are taking your own personal experiences and turning them into an argument that it is the universal experience then that is plain wrong IMHO. My grandad died at home of complications cancer related. He had the most amazing treatment by so many different people and organisations. Macmillan nurse was hated by him but she was a glue that kept everything together IMHO. She knew more about cancer treatment than the GP signing the scripts. In fact if she saw a need for something she would march into the GP's treatment room with a pre-written script and never left without it being formally signed off. As I was told she had a power over GPs and other doctors. Not one would go against her.

They had all the treatment and palliative care he needed. That is not to say my gran and as much as she could my mum did not do a lot. My gran was the other bit of glue holding it all together. Then there were the various district nurses and carers who came in. All good in what they did and lovely people with it. Or the volunteer carers from a local charity. These were fully vetted people who had been in my gran's situation before and now want to help. My grandad had a really nice guy in his early 40s I think who sat with him overnight so my gran at least had a good night's sleep. There were so much more going on that I do not have the time to write.

Where was I when this was happening? I was living with them while I was at uni doing my masters. I was the single bit of normality that they clung to and gave them not so much hope but peace. I also sat a lot with my grandad watching sport with him. We had lots of discussions about WWF, cricket and football. Not what I was into but he was. He was american but still got cricket!!

This is my experience. I also experienced my gran who with dementia was not such a good experience. However the care was as good as it was needed to be.

The other point I find a bit wrong is the idea that politicians can not express their views especially if they are ministers. We elected them to represent us but in certain fields they are able to have a free vote and opinion. This is certainly right IMHO and part of this should be our right to understand the opinions and reasons behind our MP's or our minister's POV on such matters. We might not agree but it is right that such contentious issues are matters of conscience. That is my POV. I also think that Wes Streeting has been nothing but consistent and reasoned in his position. He might have voted for it in the past but he has a lot more awareness and understanding not least from his role in government. I also think he is on of Labour's best performers in government so far. If he was my MP he'd even get my vote and as someone who is naturally centre right politically I think that is something.

My view on assisted dying is that whether we like it or not there is pressure on people to go down that route. What are those pressures? The condition they are in, the quality of life, the standard of palliative care, the pressure they feel due to relying on other especially their family or friends, etc. This is all pressure.I struggle to see how this can all be removed from the decision the patient makes and be factored in to the decisions needed over whether the patient is eligible for assisted death. I know my grandad did not seem to feel this pressure and lived his life to the end. I also know that my gran did feel this pressure despite dementia and wanted to end it all. I can not support any system that has not got this all sorted and as it is not possible to sort yet I can not support any such legislation. I do however believe that there needs to be this option. It needs more thought and research to happen before I believe it is a right step to take.

The issue with palliative care that Streeting comments on is valid. There simply isn't a good system. It is however only one of the issues I have. It is the issue that streeting knows most about however so I think that it is right that he is talking about it and not going on about other issues.It is all part of the discussion.

One final point. Wasn't there advice to the cabinet by a top civil servant saying that they should not get involved in the public debate by giving their comments or POV? I find that a bit problematic. Legal or systemic advice is good but if it was basically an instruction to an elected minister then I feel the advisory role of civil service is a little over stepped. I also wonder if he was influenced by the PM who is publically quoted as supporting this bill. Ok for him but not for others in his government?

This is all so emotive and since death affects us all before it affects us the most we all have opinions. We should respect all opinions even if we are diametrically opposed to them. I feel with this emotive topic some struggle with the free vote or conscience nature of this. resorting to tropes such as fuedal system, rich vs poor, etc says more about us than the towards the discussion.

Sorry to pick on your post @djnotts I am not making it personal It was just the first post scrolling back that I found comments that I personally view as not helpful in creating an open discussion of such emnotive nature. I wish I had time to find other examples so I am not "picking on" your post. I do however appreciate your POV even though I might not agree and find the tone of certain comments problematic for me. I hope you do not take offence (in my defence I have spent too long here and I am supposed to be working from home).

[Cowsham]

I find the idea that opinions opposite to some on here are less worthy. I know I fit into that category a lot but I do not care.

If you are taking your own personal experiences and turning them into an argument that it is the universal experience then that is plain wrong IMHO. My grandad died at home of complications cancer related. He had the most amazing treatment by so many different people and organisations. Macmillan nurse was hated by him but she was a glue that kept everything together IMHO. She knew more about cancer treatment than the GP signing the scripts. In fact if she saw a need for something she would march into the GP's treatment room with a pre-written script and never left without it being formally signed off. As I was told she had a power over GPs and other doctors. Not one would go against her.

They had all the treatment and palliative care he needed. That is not to say my gran and as much as she could my mum did not do a lot. My gran was the other bit of glue holding it all together. Then there were the various district nurses and carers who came in. All good in what they did and lovely people with it. Or the volunteer carers from a local charity. These were fully vetted people who had been in my gran's situation before and now want to help. My grandad had a really nice guy in his early 40s I think who sat with him overnight so my gran at least had a good night's sleep. There were so much more going on that I do not have the time to write.

Where was I when this was happening? I was living with them while I was at uni doing my masters. I was the single bit of normality that they clung to and gave them not so much hope but peace. I also sat a lot with my grandad watching sport with him. We had lots of discussions about WWF, cricket and football. Not what I was into but he was. He was american but still got cricket!!

This is my experience. I also experienced my gran who with dementia was not such a good experience. However the care was as good as it was needed to be.

The other point I find a bit wrong is the idea that politicians can not express their views especially if they are ministers. We elected them to represent us but in certain fields they are able to have a free vote and opinion. This is certainly right IMHO and part of this should be our right to understand the opinions and reasons behind our MP's or our minister's POV on such matters. We might not agree but it is right that such contentious issues are matters of conscience. That is my POV. I also think that Wes Streeting has been nothing but consistent and reasoned in his position. He might have voted for it in the past but he has a lot more awareness and understanding not least from his role in government. I also think he is on of Labour's best performers in government so far. If he was my MP he'd even get my vote and as someone who is naturally centre right politically I think that is something.

My view on assisted dying is that whether we like it or not there is pressure on people to go down that route. What are those pressures? The condition they are in, the quality of life, the standard of palliative care, the pressure they feel due to relying on other especially their family or friends, etc. This is all pressure.I struggle to see how this can all be removed from the decision the patient makes and be factored in to the decisions needed over whether the patient is eligible for assisted death. I know my grandad did not seem to feel this pressure and lived his life to the end. I also know that my gran did feel this pressure despite dementia and wanted to end it all. I can not support any system that has not got this all sorted and as it is not possible to sort yet I can not support any such legislation. I do however believe that there needs to be this option. It needs more thought and research to happen before I believe it is a right step to take.

The issue with palliative care that Streeting comments on is valid. There simply isn't a good system. It is however only one of the issues I have. It is the issue that streeting knows most about however so I think that it is right that he is talking about it and not going on about other issues.It is all part of the discussion.

One final point. Wasn't there advice to the cabinet by a top civil servant saying that they should not get involved in the public debate by giving their comments or POV? I find that a bit problematic. Legal or systemic advice is good but if it was basically an instruction to an elected minister then I feel the advisory role of civil service is a little over stepped. I also wonder if he was influenced by the PM who is publically quoted as supporting this bill. Ok for him but not for others in his government?

This is all so emotive and since death affects us all before it affects us the most we all have opinions. We should respect all opinions even if we are diametrically opposed to them. I feel with this emotive topic some struggle with the free vote or conscience nature of this. resorting to tropes such as fuedal system, rich vs poor, etc says more about us than the towards the discussion.

Sorry to pick on your post @djnotts I am not making it personal It was just the first post scrolling back that I found comments that I personally view as not helpful in creating an open discussion of such emnotive nature. I wish I had time to find other examples so I am not "picking on" your post. I do however appreciate your POV even though I might not agree and find the tone of certain comments problematic for me. I hope you do not take offence (in my defence I have spent too long here and I am supposed to be working from home).

Nice to hear a decent experience of palliative care.

My father in law died of dementia and had excellent round the clock palliative care but I wouldn't want to put my relatives or carers through that.

He was just a shell and nothing cognitive remained for his last year and the year before was torture for him . No quality of life for his last 2 or 3 maybe up to 5 years. The thing that stuck with me most is when he went back to being a child frightened at his strange surroundings ( in his own home ) crying for his mother, wondering who this strange old woman was ( his wife of over 50 years ) and wondering what had happened to his hands. That's my opinion from experience.

[pete75]

I have heard repeatedly that here in Wales, hospice provision is struggling financially right now. I have always been unable to understand why this provision isn't part of what the NHS does. But putting that to one side for a moment, maybe it is time for those of us who have some disposable income to get the plastic out and set up a regular donation.

Exactly. Since my wife was treated by St. Barnabas I've given them several thousand myself and raised a few thousand from other people. Plan to give them a more once I've got probate and everything sorted. We only get out what we put in and a well funded hospice movement means good palliative care.

[Carlton green]

Nice to hear a decent experience of palliative care.

My father in law died of dementia and had excellent round the clock palliative care but I wouldn't want to put my relatives or carers through that.

He was just a shell and nothing cognitive remained for his last year and the year before was torture for him . No quality of life for his last 2 or 3 maybe up to 5 years. The thing that stuck with me most is when he went back to being a child frightened at his strange surroundings ( in his own home ) crying for his mother, wondering who this strange old woman was ( his wife of over 50 years ) and wondering what had happened to his hands. That's my opinion from experience.

Yes, experiences do vary an awful lot and even in the same location they will vary over time. Over the years I have certainly seen big changes in our local GP practice and overall they’re really not ones that improve terminal care. The reasons why someone might seek ‘their way out’ are many and varied; to deny people dignity in death is cruel as is condemning people to (continue to) suffer. Relief from pain might be there, or it either might not or might be inadequate, and at the end of the day it’s relief rather than removal of suffering.

[Jdsk]

...
One final point. Wasn't there advice to the cabinet by a top civil servant saying that they should not get involved in the public debate by giving their comments or POV? I find that a bit problematic. Legal or systemic advice is good but if it was basically an instruction to an elected minister then I feel the advisory role of civil service is a little over stepped. I also wonder if he was influenced by the PM who is publically quoted as supporting this bill. Ok for him but not for others in his government?
...

The Cabinet Secretary's letter:
https://www.gov.uk/government/publicati ... -ministers

This was constitutionally appropriate and a sensible reminder.

Streeting shouldn't have made the comment about costs having to come from other NHS activities.

Jonathan

PS: Of course this would all be less of a problem if so many Ministers weren't MPs.

[djnotts]

Apparently I have completely misremembered what I said were my "...comments on palliative care as I experienced it." I did not say "universal". I WAS told would have received support if on benefits or if I moved 1 mile across Local Authority boundary. We did NOT receive any of the help which the hospital promised when convincing me to accept early discharge for myself so that my wife could die at home.
Try the experience of partner being pronounced terminal, no treatment, the day before you are diagnosed with HNT cancer. And a week later, one day after own surgery, being both home alone.
No further comment.
Leave it to the Health SoS - he KNOWS palliative care will not be funded. The dying don't vote.
No further comment.

[Tangled Metal]

...
One final point. Wasn't there advice to the cabinet by a top civil servant saying that they should not get involved in the public debate by giving their comments or POV? I find that a bit problematic. Legal or systemic advice is good but if it was basically an instruction to an elected minister then I feel the advisory role of civil service is a little over stepped. I also wonder if he was influenced by the PM who is publically quoted as supporting this bill. Ok for him but not for others in his government?
...

The Cabinet Secretary's letter:
https://www.gov.uk/government/publicati ... -ministers

This was constitutionally appropriate and a sensible reminder.

Streeting shouldn't have made the comment about costs having to come from other NHS activities.

Jonathan

PS: Of course this would all be less of a problem if so many Ministers weren't MPs.

I do wonder where costs would come from? One pot for everything so what goes? Simple question to be answered should it go through. However I do think it is not relevant or should not be relevant to the debate. The debate should be on whether it is right to do so and later once it is in law the money needs to be found for it. Secondary question.

For me I would ask how can there be no coercing effect due to the condition of the one seeking assisted dying. The old phrase my gran used to say was "shoot me now, if I had a gun I would do it myself!". Earlier on it was because she felt a burden to her relatives and everyone else involved in her care. Later on it was in her congnitive moments that she wanted to end it to avoid the less cognitive moments. Overall her condition was the coercive factor or a part of it. That and the effect it had on others. The best palliative care in the world can only help but not solve this. It all msakes me question the law if it was made into effect.

I mostly think Streeting gave good comments on this matter and I feel things are the better for his comments, mostly at least. I personally would not want to stifle opinion or comment on this matter.

[Carlton green]

I mostly think Streeting gave good comments on this matter and I feel things are the better for his comments, mostly at least. I personally would not want to stifle opinion or comment on this matter.

Whilst I disagree with Streeting I wouldn’t want to stifle comment. However it’s inappropriate for Government Ministers to speak publicly on this issue so Streeting shouldn’t.

If we never put in place laws that were anything but perfect then nothing would ever happen. We put laws in place to improve things as best we can. Remember that: ‘Perfection is the enemy of good’.

https://en.wikipedia.org/wiki/Perfect_i ... my_of_good

[pwa]

It is right that this step is taken only with great caution, possibly erring on the conservative side for fear of unintended consequences. But it is a step that has to be taken. Public opinion demands it. Most people want to be given the choice if they ever have to face a painful death.