Only skim read this ( and submitted the survey), but seems to be a good time to make your views known:
https://www.theguardian.com/commentisfree/2023/jan/19/die-pain-government-assisted-dying-survey

Anyone in Scotland please lobby your MSP – there is a bill in holyrood right now to give a very minimal right to assisted dying where a doctor can prescribe meds to end life but the person must self administer and must be terminally ill with less than six months to live

Palliative care can only ever alleviate suffering not eliminate it.  By law you have to be in pain before painkillers can be administered.  You have to be in distress before sedatives can be administered. thats the current legal position.

Please fill the survey in.  We need this.  Anyone in any doubt I have a piece I have written about Mrs TJs death
Its distressing.  I am not going to put it on here but its available to anyone who wants to see it. pm me

Thanks for the link. Super important stuff!!!

That’ll never pass in Scotland but not England (see gender bill and one way trips to Switzerland). Whilst I think we are behind current thinking, I think it’s unlikely we will see any significant change.

Done. This is set to be increasingly important. Time for a pragmatic and sensible discusion of the issue. If I was found to allow any of my livestock to suffer as some people have to I would be in prison.

I think we actually have a decent chance of this passing in Scotland.  Its going to be a free vote not whipped and there is overwhelming support among the public and it looks like a majority for it in Holyrood.  I’ve been closely involved in lobbying.

A lot depends on how well written the bill is and so on.  I know there are MSPs with doubts who agree in principle but will not decide until the bill reaches its final form

I suspect tho if the tories are still in power in london it might be vetoed by them.  the religious lobby who are 90% of the opposition ( often duisguised as secular objections and scaremongering) are stronger in Westminster than in Holyrood.  Church of Scotland is much more liberal than Church of England but as far as I know have not produced a position on this yet.

Everything the public can do will help.  Lobby your MP / MSP  fill in the survey.  Tell your stories

Done.

Having help nurse another grandparent in the dying days this needs brought in. One day when I’m retired I’ll post in detail of my feelings and experiences.

Direct link to survey.

https://www.smartsurvey.co.uk/s/m66aml

We’re 20 days into legal Voluntary Assisted Dying in Queensland. It’s a big step forward after years of efforts. Consultation was very thorough and perhaps as a result the safeguards are really impressive.

Good luck with getting to a similar position. I know my parents in England would love to see it, and certainly at two of my grandparents would have had much pleasanter end of life experiences had legislation been adopted.

Done. I have very strong views on Elective Death for individuals, fully in support, as the current options do not cater for the realities of our existence. Small steps towards a sensible solution but we need to take the first step to get there.

Time for a pragmatic and sensible discusion of the issue. If I was found to allow any of my livestock to suffer as some people have to I would be in prison.

It’s amazing that we value the quality of the end of life of animals better than that of our own.

It’s amazing that we value the quality of the end of life of animals better than that of our own

We don’t!

We’re more worried about someone deliberately killing people, with criminal intent, than if they are deliberately killing animals with criminal intent :o(

Also done.

Done. With religion now below 50% it’s time one of the big stumbling blocks was moved aside. Needs an open, adult conversation.

It’s amazing that we value the quality of the end of life of animals better than that of our own.

Very much this

Sorry
I want to do this but can’t see …. Where is it?

Ahh found it.

And done.

Done. The number of times people say “it came as a relief” regards the death of a loved one implies it would have been a better death if it had been sooner.

Also, given that (to an extent) we choose how to live our lives, I would like some say in how I die my death.

This is a topic very close to my heart both for personal and professional reasons.  I have worked in palliative care both in and outside of the hospice system.  I have seen hundreds of people die in all sorts of circumstances

Are folk interested in hearing more of my experiences?  Or am I pushing at an open door?  some of what I can say would be distressing hence my reluctance and of course my perspective of what folk want to hear / need to hear is skewed

Done

That’s a terribly written survey. I had to read the questions several times before answering.

That’ll never pass in Scotland but not England (see gender bill and one way trips to Switzerland). Whilst I think we are behind current thinking, I think it’s unlikely we will see any significant change.

I can’t see how it could be objected to on a s35 of the Scotland Act basis, the two bills before both made it in front of holyrood without any suggestion there was a devolution issue.  In what way do you think that it would/could affect legislation outside Scotland, and be straying beyond the remit of of the Scottish parliament?  Or do you think UK gov have just discovered s.35 and now believe they have a veto on any devolved issue they don’t like?

It’s amazing that we value the quality of the end of life of animals better than that of our own

We don’t!

We’re more worried about someone deliberately killing people, with criminal intent, than if they are deliberately killing animals with criminal intent :o(

That is of course a legitimate concern that needs balanced against the desire to end needless suffering.  I don’t actually believe that is the primary concern though (if I want to kill someone with criminal intent I can do that today and face consequences), the issue which I believe is more concerning is ensuring that nobody is unduly pressured, even subconsciously, into ending their life prematurely.   That requires no criminal intent by anyone.  To be clear I am 100% behind the concept, provided there are good safeguards.  I don’t believe any safeguard can be 100% effective and am willing to accept that, because on balance the benefits outweigh the downsides, and because in reality, the status quo has no protection against those risks anyway.

Completed, people should have the right to end their own lives should they wish to.
With the appropriate controls to prevent undue influence from others, but also support must be there in terms of mental and physical health support too

@tjagain : I would be interested to read a little of your experiences. I would certainly support a more accepting national policy on his whole issue and hope desperately that by the time I get there, that we have a range of supported options available.

In countries where this and more radical steps are available there is zero evidence of abuse.  My sister who is an investigative journalist has looked at a number of the controversial or edge cases that are publicised by the antis as abuse but when looked into further there is no doubt at all that they were correct in the law of that country.   In my experience its the other way round.  Folk saying “let me die” and families wanting them to fight on.

In Scotland the proposal is only for people with a terminal diagnosis in their last 6 months of life and who are of sound mind

I believe it would be possible and maybe even likely that Westminster would veto.  the religious have more sway in Westminster especially in the tory party.  the grounds would be ” death tourism” and “conflict with UK law on suicide” along with any other secular objection the religious can make up.  More likely under Tory than labour tho

@tjagain my daughter runs a specialist paediatric palliative care team. I wouldn’t want to hear more (but recognise some people might) and maybe speaking more openly about the end of peoples life helps the debate to better legislation.

Clearly what none of us want is a relative reading about your perspective on the death of one of their loved ones. I know you would write in a sensitive and confidential way and its your decision on if you post and my decision on if I read. You have my respect and thanks for the job you have done.

DB – at least mine is all with older folk.  I ave seen children die and it was horrendous.  That job is a whole lot harder than mine was

Massive respect to your daughter @db that is one though but unfortunately a vital job.

OK some basics

Here I am talking about the last weeks and days

I’m using “we” to mean the team.  My role as a nurse is to assess and monitor the patient and to advise the doctor.  The doctor decides on the prescription.  This will include usually a base load of medication given regularly and top ups or break thru medication which he nurses can give on their assessment up to the amounts prescribed which are often quite wide ie 5mg hourly as needed up to 40mg daily

As above in law we are only allowed to treat symptoms.  We cannot anticipate them with preemptive treatment.  We are allowed to treat recklessly ie to ignore possible side effects ie sedation, respiratory suppression etc.  the principle is “neither hasten life ending or sustain life needlessly” ( I can’t remember the exact form of words) So we can only give painkillers or increase the amounts once they are in pain.  We can only give sedation once the patient is in distress.  We also must take the patients wishes into account.  ie I have said to patients in their final days ” you seem to be in pain, if we give you more painkillers the risk is they will make you very sleepy.  Would you rather risk the pain or risk the sleepyness?”  I have seen that one go both ways.  Prescribing is an inexact science and its a matter of judgement.  As such there will always be inconsistencies due to the attitudes and prejudices of the staff.  Myself I had to set aside my own views and remember the principles particularly in regard to the patients wishes.
Sometimes these medications are given orally, sometimes subcutaneously and often via a syringe driver which gives a continual flow of drug to avoid the peaks and troughs you get with oral medication.  the usual package would be opiate painkillers with sedation added in as and when required.  The sedation would usually be midazolam which has the effect of dissociating long and short term memory so people are only “in the moment”  not either remembering the pain of the recent past nor anticipation of pain in the future.

Now specifics.  Some of this is distressing.  Be warned!  Paul avoid is my advice!
this is a very typical end of life for someone with metastatic cancer

As many of you will remember my partner of 42 years died of aggressive metastatic cancer 18 months ago.  I nursed her “at home” ( actually a friends house)  she had been in hospital because she had had a blood clot into her lungs but once the “palliative only” diagnosis came thru she refused all further treatment and came home with a prognosis of 4 weeks which was accurate.  At this point she had tumors in multiple locations in her abdomen, was in partial bowel obstruction and had massive build up of fluid.
She gave me parameters to work in. A fierce woman who knew her mind.  She refused to leave the hospital unless I promised to stay within the law.  But she also said ” don’t let me linger”  I also knew her dignity was very important to her and that she wanted to take all decisions.  We knew that she had only 4 weeks or so to live no matter what.  We both knew ( cos I told her) that a human body will only live 3 days without water and 3 weeks without food.  she had been vomiting a lot so was put on a syringe driver at that point containing opiate painkillers and anti nausea drugs.  She was also on injections of anticoagulant drugs to prevent further blood clots – the only treatment she would accept.  she came home.  We knew the pattern would be a week or two where she was able to be reasonably active ie get up, sit in a chair and be able to enjoy visits.  Then a week or so of decline to the point she was unable to do anything much and then a week or so descending into stupor and unconsciousness to death.

Things progressed very much as expected.  She had a good two weeks where she was able to say her goodbyes to everyone.

BY the third week she became very weak.  Getting out of bed became difficult for her.  She remained continent with a lot of effort from her and me.  She refused virtually all food for this time at home but continued to drink water.  There was still some joy to be had in this time ( the third week) – we sat and talked about old times, decided her funeral arrangements and sat and looked thru old pictures but she spent much of the time “floating” on a nice cocktail of drugs

There is an “emergency box” in the house containing injectable meds to be used if needed but ( probably rightly) the district nurses and doctors forbade me from giving injections so if injections were needed I had to call the district nurse out which of course means a delay. I was allowed to give her oral meds as required up to limits.

Now we come to her final week.  She was now unable to get out of bed so had to be catheterised to keep her comfortable – undignified and causes some discomfort but better than wetting yourself and having to be moved to change the bed,  She was getting scared so sedatives were added into the syringe driver.  With 5 days to go she decided she no longer wanted the anticoagulant injections.    She became unable to absorb the oral meds as her body shut down meaning they were ineffective so we had to rely on district nurses for injectable top ups.  with 3 days to go she tipped into respiratory distress.  Your body regulates breathing from both CO2 and O2 levels in your blood and this system gets confused as the body shuts down.  With Julie this resulted in her respiratory rate climbing to panting and gasping for breath.  she was only semi conscious but in clear distress.  I called the district nurses out and after a delay of 1.5 hours they came and gave her an injection of sedatives which got this back under control.  At this point she is floating in and out of awareness.   After that she had a stroke from blood clots from the tumours.  This left her with a one sided weakness but fortunately she was not really aware of this and certainly not distressed by it significantly . 36 hours before she died she lost the ability to cough and to swallow.  This resulted in a build up of secretions in her mouth and trachea which of course adds to her distress.  Medication is given to reduce this but its not hugely effective and also gives rise to a very dry mouth.  Because she was fit and had a strong heart she remained in this state for her last 36 hours.  A weaker person would probably have died in 12 hours.  she was minimally conscious during this time but still had periods where she was aware untill her last 12 hours when really she was aware of little. All though this last week she was in pain when being moved tho pain free most of the time when not disturbed.  I gave her oral top ups before I moved her but they were only partially effective until the last while when they no longer worked at all

because of my skills and knowledge and the fact I was able to dedicate myself just to give her care she got the very best care I could give her within the parameters she gave me to work in.  Delays in injectable meds are unavoidable when you are at home given the medical team did not want me to give them as I would struggle to make impartial decision. I’m not 100% convinced this is right but i did make some poor decisions during these 4 weeks as a result of being so close to things.

As above I have seen hundreds of people die and I know that Julie got a far better death than most.  However that last week?  What was the point of putting her through that?  She had periods of distress pain and fear tho short and infrequent.  If assisted dying had been available she would have taken that opportunity a week before she died and I would have supported her to do so.  Indeed if she would have allowed me I would have given her a lethal OD that final week and take the consequences but she made me promise not to.

This pattern of decline to die is perfectly common and is how things often go.  Julie got the very best palliative care possible.  We pushed the medical team hard to increase her drugs as much as they would and by the end she was on massive doses.  Probably more than they would have given normally but I knew the things to say and coached her to say the right things.

But even the very best palliative care can only alleviate pain fear and distress.  it can never eliminate it.  fortunately Julies periods of pain fear and distress where short but they still occurred.

This is the reality of dying of cancer.  Remember this when you hear folk say that good palliative care means there is no need for assisted dying.

Done, hopefully we’ll get improvements.

Survey done.
I am an MND sufferer and it will end my life at some point. I would like to be in control of the end scenario because I don’t understand why we should continue with escalating stress, pain and/or medication when we could say our farewells and die with dignity. I have recently watched as my pet was euthanised, it was sad but took less than a minute, there was no stress for the animal. I was envious of her.

Very moving account tj. I hope you get some comfort knowing that you did your best for her, and that you are using your knowledge and experience to advance the debate on assisted dying.

And a huge thank you for all the care and support you gave others while working in that role.

Survey done.

Oh I do.  I tell myself daily outloud  or whenever the nightmares and flashbacks come “I am proud of what I did” and I now feel that pride.  CBT type effects.  It was effectively my “magnum opus(?) the best bit of work I have ever done

I do wish she would have let me / us be a “cause celebre” but it was her death and her choice

It’s amazing that we value the quality of the end of life of animals better than that of our own.

The animals are put to sleep by human which is not of their own choosing.

In my life I have not seen any animal willingly give up their own life. No matter how hard or difficult they will try to live.

Human on the other hand make that decision for themselves which is different.

Respect.

survey done, i recently lost some one who had years of life left in them , but they commited suicide by hanging themselves all alone..

in their suicde note they said they couldnt face the illness they had, eventually getting so bad they couldnt end thier own suffering…

People have to have the right to choose when to end it all if they are in pain and suffering with no possible recovery possible

Thank you for that tj.

Thanks Tj, very informative for a “civvy” to read. I’d be very proud to have been able to do what you did for Julie and your ex patients. I’m just off to do the survey.

Done, with very short and succinct replys. Thanks for the link, the generalist.

Thank you for sharing tj. I’ve done the survey. I also know someone who committed suicide in a way that was distressing for her family because she was not willing to go through a long drawn out ending after a cancer diagnosis. It didn’t need to be that way. I like to think I would have the courage to choose my ending in similar circumstances but there’s no guarantee of having the capacity if left too late.

The time line and events are very typical.  I have seen far worse but I generally worked with a very good team who both were very humane and taught me a lot

Thanks for sharing @tjagain and thanks for the work you have done. My dad died of cancer this morning and I now have a better understanding of why the hospice staff said some of the things they did. I’m so grateful to all of them for the care they gave my dad