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

I have quite a lot to say so I'll break it up a bit.

Oregon criteria are similar to those proposed here

There is no specific proposed law in this inquiry. There are simply the questions asked in the survey and in the terms of reference. At this stage the government is seeking broad views on all aspects of assisted dying so they have kept the questions very general.

You may have got confused with the proposed law in the 2019 public opinion survey that the other poster shared and that I linked upthread.

That is quite similar to the law in Oregon and, as I have already said, I would support such a law if we also had good quality palliative care, as well as good quality social and medical care more generally.

here = in the uk. The last attempt did not get passed, why do you think another would go any further?

You mean you would support a law in a perfect world. That world will never exist. Therefore the question is what is most harmful -allowing a lot of people to suffer unnecessary distress or running a risk that you cannot quantify and cannot show would happen?

From everything I have read, Oregon has very good, widely available hospice care. This is old, it's from 2003, but this select committee heard evidence that even back then, 50% of all deaths in Oregon had hospice care (usually at home) and that number was growing year on year.

'Oregon is a very, very small state and we have hospices all over, and they have big mouths!'

publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/8608.htm

As you have pointed out, almost all Oregonians who choose assisted dying are already receiving hospice care. There are still only 2-300 people a year who make use of this law. So where there is a choice, continuing with hospice care is still the preferred option for the vast majority.

If anyone has more up-to-date statistics, or comparable stats for the UK, I would be very grateful. My impression is that hospice care is a lot less accessible in the UK, that there is insufficient support for people who want to die at home and their families, and that attempts to translate hospice models of care to hospital settings have been a disaster, even in less interesting times.

One thing I think Oregon gets wrong is a complete lack of oversight of what happens to the drugs after a prescription has been issued. The patient can hang on to the prescription indefinitely or get the medication and then hang on to that indefinitely. Nobody has to observe that the meds have been taken and there are no arrangements for safe disposal unless the patient voluntarily gives them back.

Out of 383 people in Oregon who had a prescription issued in 2021, 106 (almost 28%) had an ingestion status of 'unknown'.

www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year24.pdf

I can see how it might be comforting to have the meds in just in case but I don't think it's safe and it wouldn't pass in the UK because we have very strict rules around controlled drugs.

The most recent assisted dying bill in the UK was in 2021. Baroness Meacher's bill was very similar to the law in Oregon but had a huge section on safe handling of medication.

Meds must be delivered personally to the person, immediately before their intended use, either by the prescribing doctor or by a registered HCP authorised by them.

The HCP must stay in 'close proximity' (but not necessarily in the same room) until the person has self-administered the meds or decided not to take them.

If the person decides not to take the meds they must be immediately removed and returned to the pharmacy for disposal as soon as is reasonably practicable.

bills.parliament.uk/bills/2875

This is normal for controlled drugs. My Dad died at home with hospice care and district nursing and the nurses were straight in collecting unused controlled drugs as soon as the death was certified.

I don't think it would be possible in the UK, or wise, to allow people to hold controlled drugs just in case. Instead, dying people would need to be comforted that that they had an approved plan in place that could be activated without delay.

And these "junior" doctors you dismiss so lightly have a minimum of 5 years of medical school and in some case another 10 years of clinical practise.

I'm not dismissing junior doctors. They are just not the appropriate people to make the decision to move terminally ill patients onto palliative care, and certainly not alone, without support, in the middle of the night.

I invite you to actually read the LCP report:

Every patient diagnosed as dying should have a clearly identified senior responsible clinician accountable for their care during any ‘out of hours’ period. Unless it is unavoidable, urgent, and is clearly in the patient’s best interests, the decision to withdraw or not to start a life-prolonging treatment should be taken in the cool light of day by the senior responsible clinician in consultation with the healthcare team. The practice of making such decisions in the middle of the night, at weekends or on Bank Holidays, by staff that do not have the requisite training and competence, should cease forthwith.

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf

The poor implementation of the Liverpool Care pathway has meant that doctors are reluctant to prescribe adequate pain relief until the last few days. So you can be in poorly controlled physical and mental pain for years, keen to put an end to your suffering but unable to have help to do so. The law proposes a time limit of 6 months before death would probably occur.

The Liverpool Care Pathway was only ever designed for the last few days. Any application of it before this period was always a mis-use and hastened the death of people who would otherwise have had weeks, months, sometimes even years left, and who had not consented to their lives ending prematurely.

One senior consultant who gave evidence to the Review panel related how a surgical professor was apt to conclude discussions in MDT meetings about certain patients with ‘this patient is unfit for surgery, so LCP.’ This is entirely unacceptable.

You say that people are receiving inadequate pain relief in the last months and years of their life and this is because of the failure of the LCP. Do you have any evidence of this?

Do you have any links you can share about the state of palliative care in the UK today?

Would 6 months be enough for you or would you seek to extend it?

The current figures for Oregon are here -they've gone up. www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year24.pdf

Nearly 8.5k people die of cancer in Oregon each year cancerstatisticscenter.cancer.org/#!/state/Oregon

so most people dont take the option. That's fine, no-one wants to force people. However some may not be given the choice, there are strong links between the hospice movement there and access to assisted dying. Some doctors wont participate, again no-one wants to force them to do so.

Can you quantify how many people you think suffered against the number who were helped?

What you are asking here? Are you talking about the LCP, the law in Oregon or what?

you wish fully competent adults to be denied that choice

Excuse me? Please can you stop this. I wish nothing of the sort. Go back and read my posts.

Are you interested in an adult conversation about how to safely legalise assisted dying or are you just here to score points? I am not interested in point scoring, this is too important for that.

This debate will rumble on and every couple of years someone will bring an assisted dying bill. Eventually a bill will pass and we will have legal assisted dying. I very much hope that happens as a result of all the safeguarding issues having been addressed and not as a result of the alternative being much, much, worse.

The more I read and think about this, the more I think that we can't legalise assisted dying in isolation. It has to be done in the context of improving all services and especially end of life palliative care.

Yes, I linked the same in my previous post.

Do you think there are people in Oregon who are denied the choice of assisted dying?

A junior doctor varies from someone just out of medical school to someone about to take up a consultant post. I'm aware of the recommendations, I dont agree with them. It isnt usually necessary to take a decision in the middle of the night and unsupported but that doesnt mean that junior doctors are not capable of taking decisions to alleviate distress. What went wrong was not having consent.

IF you read the personal stories of those who commented elsewhere you'll know that most people who support this do so because of personal experience. I'm not young, I've witnessed or heard of many deaths. The "good" deaths have been the sudden, unexpected ones. I have yet to come across any death - in hospital, home or hospice, that met your belief of what is feasible. 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.

You asked for up to date oregon stats, I posted them. Meantime you seem to have found them yourself.

The Liverpool pathway had its problems but it helped a lot of people. Read some of the comments - ‘They spoke to us as a family in a sensitive way…. She died with my mother holding her hand, surrounded by the people she
loved in the place where she wanted to be….I believe we
could only do this, because the LCP provided staff with the
guidance to prepare us for her death and also gave them the
confidence to provide the right care at the right time.

Perfection does not exist in this world. Meanwhile the benefit to many is ignored .

The last attempt fell when the government was prorogued. Blame Boris and Brexit for that.

It's an ongoing debate. Every couple of years someone brings a bill and every so often there's an inquiry. I have no doubt that assisted dying will be legalised in the UK in the near future. I just want whatever law we end up with to be as safe as possible.

I don't believe in perfect worlds. I don't understand why you think wanting a good standard of care (just good, not even excellent or outstanding) means wishing for a perfect world.

Don't you also want the NHS and social care to provide a good standard of care, whether you are dying or not? Do you think that's only achievable in a 'perfect world' so perhaps not worth fighting for? These are exactly the dangerous conditions that would make an assisted dying act unsafe in the UK today.

allowing a lot of people to suffer unnecessary distress or running a risk that you cannot quantify and cannot show would happen?

I don't understand what you have said here.

The best way to improve palliative care is to legalise assisted suicide. I even found a report from one country with assisted suicide that explicitly commented on the improvement in its palliative care services, tomorrow I'll try to find it again.

You do not understand that you are allowing people to suffer unnecessary pain and distress.

You do not wish to talk about necessary safeguards because you start by saying we must have perfect palliative care before a change in the law can be considered.

You don't agree with the recommendations in the LCP report?

I am struggling to take you seriously.

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.

That's a massive assumption which is not supported by any evidence at all.

All the evidence shows that only a small minority of people want assisted dying for themselves when they are terminally ill. The vast majority of terminally ill people do not, even when they have the option. Are you saying that people in Oregon cannot access assisted dying when they want it? I would need good evidence before accepting that assertion.

The task here is to make a law that suits the few who seek assisted dying while also being safe for the majority who do not.

Of course death is emotionally distressing. It always has been and it always will be, everywhere, in every time, anywhere on the planet. Except for people who are suicidal (which is a mental health condition), none of us want to die. None of us want to think about just not existing any more, while time carries everyone else on into the future. None of us want our loved ones to die, even if they are old and unwell, even if assisted dying is the kindest option, even if we assist them in finding help to end their life. We wish they were still well and could go on living and being with us.

We all die and it's always emotionally distressing, to ourselves and our loved ones. Changing the law to allow assisted dying will not change this.

The best way to improve palliative care is to legalise assisted suicide. I even found a report from one country with assisted suicide that explicitly commented on the improvement in its palliative care services, tomorrow I'll try to find it again

I look forward to you providing this evidence. In the meantime I will continue to believe that the safest way to legalise assisted dying is if palliative care is already the best it can be (which of course will never be 'perfect'🙄). The most unsafe way to legalise assisted dying is to do it with inadequate safeguards at a time when the NHS and social care are collapsing.

You do not understand that you are allowing people to suffer unnecessary pain and distress.

Just stop with this BS. I am 'allowing' nothing. I am expressing my opinion, just the same as you. I am sick of these nasty slurs. Engage in good faith or I'm out.

'Perfect' is your word, not mine. I said that in order for assisted dying to be a genuine, safe choice, palliative care needs to be the best it can be. I stand by that. You have ignored that and banged on about 'perfect' instead. I should probably leave you to it, to have the argument in your own head in your own time.

You do not wish to talk about necessary safeguards because you start by saying we must have perfect palliative care before a change in the law can be considered

I have done nothing but talk about necessary safeguards.

What do you think the necessary safeguards should be, in this imperfect world? You haven't actually said.

I'm in Australia - most states have legalised voluntary assisted dying in the last couple of years. It was passed without a great deal of fuss or bother . Where I live, our MPs voted on it, after they had held information sessions with their constituents. It was obvious that the vast majority of people were in favour. The rules about it are much the same as the ones you've mentioned above. I'm just glad it came in , within my lifetime.

Here is the information in my state - www.qld.gov.au/health/support/voluntary-assisted-dying/explained/eligibility-criteria

I filled in via the link on another, now deleted, thread, as I am in favour of assisted dying.

It was deleted for breaking guidelines. OP got too carried away bumping it up, which was a pity as it had been moved to chat.

Thanks for the link. I have completed it against allowing this. It would simply be another Liverpool Pathway disaster.

And I simply do not believe any safeguards would be followed by everyone. Look at DNR notices. They are supposed to be discussed sensitively and to seek the consent of the patient. That already does not always happen.

"even if every dying person who needed it had access to the level of care currently provided in hospices, 6,394 people a year, or 17 a day, would still have no relief of their pain in the final three months of their life. This estimate does not include those who receive only partial pain relief or who suffer with other equally distressing symptoms."

blogs.bmj.com/bmj/2019/09/25/arun-bhaskar-the-inescapable-truth-palliative-care-is-not-enough-we-can-and-should-legislate-for-assisted-dying/

@LangClegsInSpace You do not engage in good faith at all. I've talked about not allowing it to be raised unless the dying person requests it, not allowing families to over-ride the wish of the dying person, not allowing nurses to prescribe. All you talk about is perfect palliative care, ignoring that this does not exist and 17 people a day will continue to die in unrelieved physical pain. You have finally admitted that people die in mental pain, some want the choice to shorten their dying. Now perhaps you will admit that even the best palliative care does not always prevent physical pain either. There will be junior doctors well capable of taking these decisions and others who are not - it should be a case of having received appropriate training and a consultant accepting that the training was sufficient.

@BradfordGirl DNR notices are a medical decision that resuscitation is not in the parents best interests. When you try to resuscitate patients it can be damaging- for example you may break their ribs and leave them in ongoing pain until they die of those injuries and it works far less often than you see on tv. www.bmj.com/company/newsroom/patients-overestimate-the-success-of-cpr/

Generally a DNR will be discussed with the patient but sometimes doing so will distress them for no good reason. It will then usually be discussed with relatives but relatives do not always act in the best interests of the patient. A doctor can not be forced to take action that is damaging to their patient, even if their relatives wish to do harm.

Evidence of Professor Battin cites the paper on improvements in palliative care publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86we02.htm

You may not be able to access the original research paper.

You do not engage in good faith at all.

All you talk about is perfect palliative care, ignoring that this does not exist

OK, bye then.

But @LangClegsInSpace have you seen or heard of someone dying in agony? I have, and it was a good hospital and the staff were doing their best. I think they'd had the maximum allowed that day is how it was clumsily explained to me. The person concerned was in real agony, and quite vocal, let's say as I don't want to be alarmist.

I wouldn't want to die like that or see anyone else have to.

Indeed I left this thread because there was no point in discussing with someone not engaging in good faith.

This is a reminder for those who are aware that 17 people a day die in uncontrolled pain that you can stillmake your views known until Friday. www.smartsurvey.co.uk/s/M66AML/

17 people a day die in uncontrolled pain and even more in less than fully controlled pain. If you would prefer not to be one of them please give your views on assisted dying. You can only make your views known until Friday. www.smartsurvey.co.uk/s/M66AML/