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 didn't know about this but will have a search now! Thanks for the heads up.

@Olivia link for you www.smartsurvey.co.uk/s/M66AML/

Oops @Olivia199 see link above.

Just under 3 weeks to make your views known.

Oh amazing, thank you for the link!

Done!

Thank you @Olivia199 Tell anyone else you think would wish to comment,

I filled this in last week. I think it's a really important area where people should be able to make their views known (be they for or against any change) and was so glad I saw it before it closed.

Done

There are still some weeks to go, plenty of time for others to comment.

Thank you for the link. I’ve filled it in. I don’t think they have made the survey extensive enough but if it gets across the idea that more research or public consultation is wanted I hope they listen.

I've sent it around everyone. As a PP said, I think it's a hugely important thing to have a say on!

If you make a survey long fewer people will fill it in. I used the text boxs to talk about the people II had watched die. Some were in physical and mental pain for months and one with reasonably well controlled physical pain but suffering the emotional stress of dealing with friends and relatives grief as well as her fear of losing what dignity she had left. I also have relatives who have died suddenly and unexpectedly, two at youngish ages. Those deaths were sad but you can grieve them without also feeling the relief that the end of suffering brings.

I was also a bit disappointed with the survey. I found this terms of reference page helpful to think through the issues before I filled it in. There's a link at the bottom for another way to submit a response (not anonymous):

committees.parliament.uk/call-for-evidence/2744/

To what extent do people in England and Wales have access to good palliative care? a) How can palliative care be improved, and would such improvements negate some of the arguments for assisted dying/assisted suicide?

What can be learnt from the evidence in countries where assisted dying/assisted suicide is legal?

What are the professional and ethical considerations involved in allowing physicians to assist someone to end their life?

What, if any, are the physical and mental health criteria which would make an individual eligible to access assisted dying/assisted suicide services?

What protections could be put in place to protect people from coercion and how effective would these be?

What information, advice and guidance would people need in order to be able to make an informed decision about whether to access assisted dying/assisted suicide services?

What capabilities would a person need to be able to consent to assisted dying /assisted suicide?

What should the Government’s role be in relation to the debate?

This research briefing is also helpful:

post.parliament.uk/research-briefings/post-pb-0047/

I am broadly in favour of a change in the law but I don't believe we're currently in a position where it's safe to do so.

Without a properly working NHS and social care system there is too much danger of assisted dying becoming the preferred, cost-effective option. We especially need to make sure that palliative end of life care is the best it can be, so that assisted dying is a genuine choice, not made out of fear that the only alternative is inadequate care.

Also I would only be in favour if there were very strict criteria. The OP of the other thread linked a survey that showed 49% of respondents strongly supported the following proposal and 35% somewhat supported it:

A proposed new law would allow terminally ill adults the option of assisted dying. This would mean being provided with life-ending medication, to take themselves, if two doctors were satisfied they met all of the safeguards. They would need to be of sound mind, be terminally ill and have 6 months or less to live, and a High Court judge would have to be satisfied that they had made a voluntary, clear and settled decision to end their life, with time to consider all other options.

yonderconsulting.com/poll/dignity-in-dying/

The criteria here are strict. The person needs to be likely to die within 6 months, of sound mind, and able to administer the medication themself. This would exclude people with dementia and a lot of people with other, common degenerative conditions.

I 'somewhat support' the above proposal as long as there is decent palliative care as an alternative. I think the criteria are narrow enough and the safeguards are adequate for this small, specific group.

But I don't believe it would be enough for some people and once a law exists it can be amended. I understand why people might think these criteria are too narrow but the more you expand the criteria, the bigger the safeguarding risk.

The risk here if we get it wrong is the certain death, assisted by the state, of someone who did not want to die. That's not assisted dying, that's unlawful killing. The stakes could not be higher.

Other countries have run into problems as they have widened the criteria.

www.theguardian.com/commentisfree/2023/jan/01/assisted-dying-seems-humane-but-can-we-protect-the-vulnerable-from-the-malign

It has been suggested that we can learn from the mistakes of other countries. That would be great but I don't hold out much hope in the current climate. It's only a couple of years since the government applied a blanket do not resuscitate order to all covid patients with learning disabilities.

www.openaccessgovernment.org/blanket-dnr/122280/

I do not trust the government to get this right and I think the timing is very bad.

Thanks for flagging this up OP, I've completed it.

@LangClegsInSpace I accept your concerns are valid but as we discussed elsewhere however good palliative care becomes it does not take away the mental anguish of knowing you are dying and the suffering you experience. Or the anguish your family feel. It's exhausting.

Good palliative care used to be easier to come by. 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. Fortunately the relative was loved, the rest of the family agreed, they died as comfortably as was possible. I should perhaps have pointed out this was financially detrimental to the family. Nowadays the doctor might be more reluctant for fear of being sued by any relative who disagreed or reported by other professionals who disagreed.

Controlling pain is not always possible without shortening life. Those who wish should have the option.

We can build in controls. You could, for example, ban anyone from mentioning this to a patient unless they specifically make a request. You could require the request to be made in an advance directive. It will be monitored here and our professional associations are active in any case where a doctor is not considered to have acted in the patient's best interests.

In countries where this has been legal for a while the majority of cases are still cancer cases who simply anticipate their death a little.

Oregon has had this for 20 years

• People who seek an assisted death are most often aged between 65 and
84, white, have a ‘good education’, have medical insurance and have
cancer.
• Research demonstrates that groups of potentially vulnerable people are
not negatively impacted by the law. People over 85, those with a lower
socio-economic status and those suffering from psychiatric illness do not
disproportionately use the assisted dying law.
.
Some people do not use the medication when given it. Knowing it is available to them gives them comfort.

Tbh I don't trust that the government will be acting in the best interests of the patients. With the NHS & social care under extreme stress and the blanket DNR instructions applied to all patients with SEND under covid, the government is looking at ways to reduce population numbers. By doing this, they'll reduce the pressure on the NHS & social care which is at breaking point.

Covid reduced the population by a certain amount & allowing assisted dying for the terminally ill is another way to do this. The government is exploring ways to reduce the number of economically redundant people in society.

We should be protecting our most vulnerable members of society. I don't trust the tories with this one bit, this is part of their growth plan. The economy can't grow if there is pressure on the health & social care system & with a certain group of people who aren't contributing to society.

Assisted dying for the terminally ill does not make much difference to population numbers because these are people who will die in a few months anyway. For some it is a few weeks as people often have a spell of palliative care before deciding not to go on.

It wont make a massive difference to the NHS but it would ease the pressure a little, allowing those who dont take the option slightly better care.

People die in pain unnecessarily, if they want to shorten the period of time they spend dying why condemn them to pain when an animal would not be treated so badly.

Yes, even the best palliative care cannot always ensure a peaceful, pain free death.

But if we don't have good quality palliative care then assisted dying is not such a free choice. The worse the available palliative care is, the less of a free 'choice' assisted dying becomes. As I've said before, good palliative care goes way beyond sufficient pain relief. A huge chunk of it is basic nursing and personal care and nowhere in the NHS or social care is that good any more. If you receive adequate care then you are lucky.

This is why I say the timing is very bad.

There needs to be a very sharp line between palliative care and assisted dying.

My understanding is that it's legal for doctors to prescribe adequate pain relief even if this hastens death. Perhaps we need better guidance so doctors feel more confident prescribing (while also not giving the nod to the next Shipman). Good pain relief is part of good palliative care. We don't need to change the law for this to happen.

Assisted dying is the deliberate taking of someone's life with their informed consent. Such a law would basically create a defence to state murder. We need really clear boundaries around this because it's a huge deal.

It's dangerous to smerge palliative care and assisted dying together. It's not OK for doctors to prescribe lethal doses of painkillers on the pretext of pain relief while relying on assisted dying being legal to justify their actions. They wouldn't get away with it anyway unless we passed a law that said assisted dying did not require a patient's informed consent. Hard no to that.

ban anyone from mentioning this to a patient unless they specifically make a request

That's one good safeguard but it's not enough.

You could require the request to be made in an advance directive

Unless someone is able to consent at the time when the medication is administered then there is no valid consent because people change their mind. I think now that I would want assisted dying in certain circumstances but, as I've never been dying before, how do I know how I will feel when it comes to it?

People change their mind:

In this survey, a small proportion of terminally ill patients seriously considered euthanasia or PAS for themselves. Over a few months, half the patients changed their minds. (my bold)

jamanetwork.com/journals/jama/fullarticle/193281

Advance directives are not a suitable form of consent for assisted dying because people change their mind and if you don't have valid informed consent then it would still be murder.

What are the criteria in Oregon?

What do you think the criteria should be?

The government does not need malicious intent to fuck this up. Incompetence and underresourcing will do the trick. We have plenty of both.

Who remembers the Liverpool Care Pathway scandal?

www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients

The intentions were wonderful - take the best of palliative care as practised in hospices and apply it in hospitals and home settings. But there was no real training on how to use it and no proper thought on how to make it work in the very different context of a hospital and with HCPs whose specialism is not palliative care.

There was no clear definition of 'end of life' so non-specialist doctors interpreted it as anything up to the last year before natural death, when the LCP was only ever meant for patients who were likely to die in the next day or two.

Many HCP misinterpreted the word 'pathway' to mean that you should do each of the things mentioned in the 'pathway', in the same order, one after the other, for every patient. The word 'pathway' came under very heavy criticism in the report because so many medics treated it as an inexorable pathway towards death.

Lots of patients were moved onto the LCP without consent and died months before they otherwise would have done because there was no clear definition of 'end of life'. Lots of patients were put on very heavy painkillers and sedatives that they had not asked for and did not need because the 'pathway' said some patients might need this. They never got to say goodbye. Lots of patients were denied food and drink because the 'pathway' said some patients can't cope with these once their organs begin to shut down.

Decisions were not given the importance they deserved so patients were frequently placed on the LCP by junior doctors, often in the middle of the night or at weekends. Family and carers were frequently not involved in decisions, sometimes not even informed.

That's how wrong things can go, even with the best of intentions.

I try hard not to think that there is actual malice behind the current push for assisted dying but I have noticed an uptick in rhetoric around old people's lives being worth less. I've seen posts on here saying that the NHS should stop treating people over a certain age, or that we should not provide social care for old people unless they fund it themself. Add in the very real problem of 'bedblockers' - AKA the collapse of social care - and we have a perfect storm.

I support assisted dying in certain circumstances, I would seek it myself in certain circumstances, but I would turn in my grave forever if I thought other people's lives had been taken without their consent in order to give me that choice.

There's just no way it would be safe to pass such a law now.

Oregon criteria are similar to those proposed here

To participate, a patient must be: (1) 18 years of age or older, (2) capable of making and communicating health care decisions for him/herself, and (3) diagnosed with a terminal illness that will lead to death within six months.

This should be a decision freely entered into by the person concerned. Families and friends do not belong in the decision since they can wish to keep someone with them, or hasten their end, when it is not in that person's own interest. Informing them is one thing, allowing them to take part in the decision is totally wrong. 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.

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.

Can you quantify how many people you think suffered against the number who were helped? In Oregon people with medical cover to pay for care still choose to reduce the duration of their dying, you wish fully competent adults to be denied that choice. Since people take the medication themselves they get to choose when they want to do so - if they change their minds they can do so. Some opt to be given the medication but choose not to take it, simply knowing they have that choice relieves their mental distress and allows them to continue.

This is not a law confined to the elderly, it helps anyone with a terminal illness.