Consultation on assisted dying for those with terminal illness.

[anyolddinosaur]

The Health and Social Care Select Committee has announced that it will be undertaking an inquiry into assisted dying. The Committee is a cross-party group of MPs who scrutinise health and social care policy. As part of this inquiry, it has opened a public consultation to take into account public opinion on this issue. It' asks just 6 questions, although you can expand on your answers.

Did you know about this? Have you made your views known? You can complete it until Friday 20 January 2023

In my husband's family the next of kin was asked if they wanted pain to be fully controlled, even though this would accelerate death, or partially controlled but a few weeks longer... Nowadays the doctor might be more reluctant for fear of being sued by any relative who disagreed or reported by other professionals who disagreed.

This is still practiced. It is called the doctrine of double effect. Palliative care doctors can administer as much medication as needed where the intention is to relieve pain, even if it hastens death as a side effect.

Contrary to what you say, doctors want the law to stay at is it now, which is what protects them when they are administering this. If the law were changed to allow euthanasia THEN they might be more reluctant to provide adequate pain relief as they would be more at risk of being accused of carrying out euthanasia without consent.

I've already completed the consultation.

I did it from my own perspective. I am extremely worried about the prospect of dying in the future in uncontrolled pain, and would like a dignified death with my loved ones nearby (if they want), without anybody at all - doctors, nurses, family, friends - running the risk of being criminalised by a system that sees crime in assisted dying or even in people being present.

I certainly don't want to 'go' before I'm ready, or on my own, or to have to travel, which rules out Dignitas etc.

Even the "best" death - in a hospice with good care - causes a lot of emotional distress. The dying person would have opted to leave sooner had that option been available to them and it would have been preferable for them and their family.

This is just not true. To anyone concerned about this, I recommend Kathryn Mannix's book "With the End in Mind."

@anja

"BMA position on physician-assisted dying
On 14 September 2021 our policy-making body (the representative body) voted in favour of a motion changing the BMA's policy from opposition to a change in the law on assisted dying, to a position of neutrality."

Doctors used to be opposed to this, now they have changed their position.

You were not present in the hospice when I spoke to my dying friend. She was tired, she had had enough and it was cruel to put her and her family through several more weeks of dying. It made zero difference to the outcome, simply to how long she and her family suffered.

There are people who dont want this- they are entitled to hmake their choice. Their are people ready and keen to go - they are denied a choice by those who do not want it for themselves.

I also made the point that it's a bit like organ and tissue donation - you can set up an advance directive (living will), have conversations with your nearest and dearest, and yet one relative can cause a fuss in the hospital / hospice setting and then to all intents and purposes it's all void.

There ought to be a way to 'lock in' certain personal decisions; or at least 'lock out' the unwanted opinions of specific relatives.

That same poster didn't reply to my post, though perhaps she had also left the thread and didn't see it.

The APM is the world’s largest representative body for doctors practicing or interested in Palliative Medicine. We aim to ensure that no one need die in distress or discomfort for lack of access to adequate specialist palliative care. Baroness Meacher’s Bill seriously undermines this. We have offered the APM’s perspective because our members core practice is care for those at the end of life.
We do not comment on AD itself, but the substantial risks and consequences of legislating for doctors to be involved. The APM’s membership’s position on this, based on recent, independent polls, is clear.
“Assisting Dying” (AD) is a loose term that covers assisting suicide and administering euthanasia. Baroness Meacher’s Bill is vague, ambiguous, and silent on many key issues. This is remarkable for legislation that changes fundamentally a doctor’s duty of care:
• it contains no safeguards to exclude errors, bias, or criminality
• it leaves the door wide open to relaxing safeguards and eligibilities in the future, including bringing in euthanasia
• there is nothing in the Bill to protect people at vulnerable times in their lives, and particularly elderly or disabled people
• There is no attempt to fill the existing shortfall in specialist palliative care that experiences of bad deaths show to be so badly needed
The UK has led the world in the research and development of hospice and palliative care, pain and symptom control.
• Over 300 people a day in this country suffer unnecessarily due to lack of access to specialist palliative care services
• During the pandemic palliative care was widely called upon to help
• Despite this, it remains a statutory service that is neither funded nor commissioned across the NHS in any consistent form
• Most service funding is through voluntary donation
• AD Legislation also signals that the UK is abandoning efforts to improve care of the dying.
We have urged Parliamentarians to reject this Bill.

I think it would be possible to legalise assisted dying while also protecting palliative care doctors. The important thing is to keep the two treatment pathways very clearly separate.

EITHER: You are treating someones pain and giving effective pain relief, even if it hastens death as a side effect. You can take an advance directive into account and also the views of loved ones and you can make a decision in the best interests of the patient. But the aim is to relieve pain and it must be very clear that if death is hastened then that is a side effect. This can be done within the current law and is ordinary, good palliative care.

OR: You are actively assisting someone to die and you need to be 100% upfront about that. You need to be very sure that you have the patient's consent on the day of death because people change their minds, so an advance directive is no use and the opinions of loved ones are not relevant. You must satisfy all safeguarding measures that may be put in place, and those measures should be very robust, because deliberately helping someone to end their life is a huge deal.

Some posters here seem not to appreciate the difference between these two approaches, or perhaps don't appreciate the danger of smerging the two together. Their posts make me less sure that legalising assisted dying is a good idea. They inadvertently highlight the dangers.

People who would want to use assisted dying generally want to go before the point where they would need the kind of pain relief that might, as a side effect, hasten their death. So any new law needs to make that possible while also allowing good quality (not 'perfect', ffs ) palliative care for those who do not choose assisted dying. The vast, vast majority of terminally ill people in countries with assisted dying laws do not choose assisted dying.

There is no downside to ensuring widely available, good quality palliative care before passing an assisted dying law. The vast majority get better palliative care, including those who at some point would switch to assisted dying, AND the assisted dying law is much safer for the small minority who would use it, because there is a decent alternative.

Hi, I left this thread earlier because I got sick of that poster wanging on about 'perfect' care as if I had ever suggested such a thing was possible. Also I'm a bit bruised by continuous accusations across multiple threads that I don't care about people dying in pain.

I'm only here now because there have been some more interesting posts.

From what you said in your earlier post I think your loved one did not receive good palliative care.

@LangClegsInSpace my uncle was put on the pathway and his death was very drawn out, and ended in a horror show (not the gentle decline into sleep we’d been promised). I remember begging my mum to do something about it, anything- but she just kept saying the doctors know best.

I'm a fan of assisted dying because at least it’s quick - better than being tortured by well-meaning palliative care teams.

I'm so sorry. LCP had great intentions but was a shitshow in implementation, for all the reasons that are spelled out in the inquiry report.

But this is an argument for better palliative care, not assisted death. These two things must be kept separate and assisted death must only happen with the informed consent of the patient, at the time of death. Otherwise it's killing people who might not want to have been killed.

It's really dangerous to mix up palliative care and assisted dying.

Of course. Thank you for replying @LangClegsInSpace

From what you said in your earlier post I think your loved one did not receive good palliative care.

I think you must be right, though we were led to believe that nothing could be done. Obviously it still bothers me now that this happened. Though I don't know if this person would have opted for AD had it been available.

@LangClegsInSpace The rational part of me agrees, if funding was limitless. But there are practical constraints and we have to live in the real world. It is clear that first-rate palliative care is going to be vastly expensive for an ageing population. If I had to pick between poor palliative care due to lack of resource/poor methodology, and a swifter but less traumatic/agonising death then I’d pick the latter - both for my own and my families sake. Watching people you love suffer when you know they’ve had enough and are begging for release, is very hard on some families. I was fortunate that my mum’s death was very sudden - it was just what she wanted, she was terrified of dying the way others in our family have. My shock at her loss was compensated by the knowledge that she truly only suffered for 30 minutes, and it has been a huge comfort in the grief I still experience today to know that she got the death she wanted, by luck.

The medical profession seems fixated on extreme attempts to extend life for the sake of it, giving people hope that treatments may be found in future, or that brutal medications might restore some quality of life. It’s not surprising they haven’t put much effort into considering how or when to help me die. There is not enough dialogue in daily life about how people want to die; even if they express a wish “not to go on and on in agony or with no dignity left” how many people actually take the step of organising advanced directives about their care with their GP? How many people have a medical POA in place? People just don’t prepare. You might get is a DNR when things are looking grim, but there is often still a long decline until it becomes relevant.

A large number of people and their families would prefer death happened in a manner of the individual’s own choosing, in their own homes if possible.

I personally have no trouble admitting I’m terrified of prolonged suffering - of being in pain, being ramped up on morphine, being doubly incontinent, being trapped in hospital knowing the only end to it all is death, and not a good one. And of subjecting my family to the exhausting, emotional commitment of the hospital visits watching me decline. if I could shortcut that, I would.

I am pretty sure publicly available abortion services were also suspected of creating a pressure for people to abort babies when in reality “mum could have coped”. I don’t think it has in reality had a huge negative impact on our society and I suspect assisted dying would be similar.

If I had to pick between poor palliative care due to lack of resource/poor methodology, and a swifter but less traumatic/agonising death then I’d pick the latter - both for my own and my families sake. Watching people you love suffer when you know they’ve had enough and are begging for release, is very hard on some families.

As would I. One person, in the example I used, said they wouldn't like to die like that.

Also with the current state of the NHS people talk of pain relief not being kept on top of on very recent threads here. I wouldn't like to take my chances.

In some countries assisted dying is part of palliative care- and it works well. Most people dont choose to take the option but it is there for them if they want it. No doctor should be forced into participating and I accept that some would see it as not why they went into medicine.

In countries where this works well the patient declares their intent in advance and takes a substance themselves on the day of death. If they change their mind they dont take it - simple. At present a doctor's fear of being sued can prevent someone receiving pain relief that would accelerate death. A relative with some religious beliefs could prevent that. Nurses can threaten to report and as it's often difficult to predict death can delay adequate pain relief.

Even if palliative care were the best available 17 people a day die in uncontrolled pain. More die in poorly controlled pain.

Any bill presented to parliament goes through several stages and is amended during those stages. It passes through committee stage, it goes to the House of Lords. The best way to ensure a bill contains the protections you want to see if to comment on the consultation.

committees.parliament.uk/work/6906/assisted-dying-assisted-suicide/

Interesting article from Polly Toynbee on this very topic today, and I'm giving this thread one final push as tomorrow is our final day to contribute. Tagging @anyolddinosaur

www.theguardian.com/commentisfree/2023/jan/19/die-pain-government-assisted-dying-survey?CMP=ShareiOSAppOther

I hope it's fine for me to bump this up, given the importance.

It's the last day to respond today.

Still time - can comment up to 1 minute to midnight.

There is a health Ombudsman report called dying without dignity, that also talks about the problems people face. I wont link to it because these stories are pretty harrowing.

I turn off tags but I wanted to encourage people to express support for this. It is a nonsense that we treat people worse than animals. We force some people to die in uncontrolled pain, others in poorly controlled pain and yet more to refuse food and water so they can go when they have had enough. It's brutal.

There is a health Ombudsman report called dying without dignity, that also talks about the problems people face. I wont link to it because these stories are pretty harrowing.

Ah, is that the one Polly Toynbee links in her article and says you need to be brave to read? I'm afraid I haven't read it, but perhaps I should.

No, the one linked to in the Polly Toynbee article is different. I havent read it all, there is a limit to how many of these stories I can deal with.

This 17 people a day stat - if you trace it back to the original study it's an estimate based on assumptions, based on other estimates. How could it be otherwise to come up with a stat like that?

But for now let's assume it's accurate. 17 people each day die in pain that cannot be even slightly relieved, even given the best palliative care.

1. We don't know how many of those 17 would have opted for assisted dying if it was available. In countries where assisted dying is legal and easily accessible,the vast, vast majority of people still do not opt for it. For some people pain is not the main consideration. My Dad was like this, he died at home with hospice and district nurse care. His last few hours were peaceful but he had been in extreme (shouting out) pain in his last few days. His main aim was to die 'with it', to be able to talk to my Mum and me and my sister. He turned down having a driver and he turned down sedative drugs. It would have been easier for the rest of us if he had not done so but he got the death he wanted. He would never, ever have opted for assisted dying. I don't think his attitude is at all unusual.

2. In the same Toynbee article we learn that 92,000 each year - 252 people each day - die in need of palliative care but don't get it. I hope we can get this right for all 269 people but if it comes down to a choice, if we are advocating assisted dying instead of pushing for better palliative care, then my efforts will go to the 252 people and not the 17.

There's about half hour left for anyone who wants to make their views known on this.

And while she briefly mentions the risks she provides no solutions. All she has to say is this:

'Could this be a slippery slope to cost-saving euthanasia? No law can be 100% safe.'

Oh well I suppose that will have to be OK then

2) In the same Toynbee article we learn that 92,000 each year - 252 people each day - die in need of palliative care but don't get it. I hope we can get this right for all 269 people but if it comes down to a choice, if we are advocating assisted dying instead of pushing for better palliative care, then my efforts will go to the 252 people and not the 17.

I agree.

@anyolddinosau I read only part of it earlier. Some dreadful experiences.

the 17 a day dying with uncontrolled pain is an extrapolation based on known figures and assumes a level of palliative care that in the current financial climate is not and will not be available. It does not include those who die with poorly controlled pain.

Palliative care has improved in countries with assisted dying.

Your father was in bad pain for a few days, but bore it. Others are in pain so bad they cannot bear it. I've twice experienced pain so bad I'd have thanked anyone willing to kill me because I didnt know if it could be relieved. The first time surgery resolved the problem. It is possible the second pain may recur. I've also observed a young child who had cancer and was in severe pain. I was a child myself so not there when he died but it was my first knowledge of how poorly some pain can be managed. Shouting out or not your father's pain was not that bad if he could chose to bear it, it was probably partly controlled. You have clearly not experienced intolerable pain - and no, childbirth doesnt come near it because you know that has a limit.

Read this today - was posted by someone on another thread.

www.dignityindying.org.uk/wp-content/uploads/DiD_Inescapable_Truth_WEB.pdf

I don’t know why people are so against assisted dying. It sounds to me as though you would be terminally ill, in a hospice, dying and suffering pain before it would be considered in any case. I don’t think it covers dementia (which in my opinion is a shame).

Instead of laying there writhing in agony, vomiting your own faeces, your rotting tumours creating a stench, you simply die a few days before all that happens. No one dying in a hospice walks away. It’s end game. It just depends how long you want to suffer and how broken you want your loved ones to be after watching you die an undignified death.

It’s not about putting down/getting rid of disabled people. Or accessing your inheritance early by pushing off aunty Betty years earlier than she would naturally die. There seems to be a lot of fear that it can be abused.