With Kim Leadbeater’s Private Members Bill on Assisted Dying comes up for its Second Reading at the end of next month, now is a good time for us to be talking about the issues involved and why it should never be a choice for those facing a diagnosis of a fatal illness between giving them a choice when and how they die if they wish or providing them the best quality palliative care to allow them to live as long as possible. Both are needed and the debate about the bill must not be about choosing between the two.
Much is spoken about how palliative care can and does help those with a terminal illness deal with physical pain during their illness. In hospitals, in hospices and at home, helping those facing death live their life as fully as possible. Such care also helps those close to the patient by sharing the support needed, both physical & psychologically.
However, there is a limit to what palliative care can do. It can’t stop some dying patients feeling a burden to others, stopping their loved ones getting on with their lives, stopping those around them dealing with their death and looking to the future, to watch as those they love see them suffer and not be able to help. It can’t remove the indignity some will feel the invasive private care, the inability to feed for themselves, the frustration of their failing body not allowing them to live as they would like. It can’t stop some preferring death to be drugged up to such a level as they no longer can be fully aware of their surroundings. For many, these pains are just as real as the physical pain their illnesses bring, possibly harder to face. This isn’t about killing people early, this is about allowing people to live fully while they can and to depart their life when they are ready.
There are rightfully concerns that any law that allows medically assisted suicide must not allow callous relatives encourage a vulnerable patient to an early death nor should it be used to make those with long term disabilities or medical conditions be made to feel that they are a burden and so should end their lives. That is why there must be strict controls to stop a dying patient being pushed consciously by others into ending their life early. Any decisions to ask for assisted dying must be made by the patient alone and not just on the spur of the moment and only applicable after a terminal diagnosis and in their final months.
I will be totally honest, if I am faced with diagnosis of a disease that will probably kill me in the near future (six months is the period in the Bill) I don’t know what I would choose, to carry on until the illness takes it’s course or when the suffering, both physical & mental, gets too much ask for that moment to be brought forward with help from my doctors. Circumstance may mean I may never have to face that choice, but I do know that if that time comes, I want to be able to have that choice.
We should support Kim Leadbeater’s Bill and at the same demand better palliative care provision within the NHS for all those who need it regardless of where in the UK they live.
* Leon Duveen is President of Liberal Democrats for Peace in the Middle East (ldfpme.org.uk), a group of Lib Dems working to support those trying to a solutions to the Palestine/Israel conflict and other conflicts in the region and to providing information about those working for peace there.
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22 Comments
So, I used to be fully in favour of assisted dying. But then I learned about how freely the medical profession uses DNRs on people like me. Otherwise healthy autistic people got DNRs liberally applied during covid. And that’s just what affects me personally. I’ve heard some hair-raising horror stories from other disabled folks about pressure from doctors to apply DNRs to themselves or relatives. I shudder to think what would happen if those doctors had access to lethal injections.
It’s not just about palliative care, it’s about persuading the medical profession that actually, disabled people’s lives ARE worth living, and you shouldn’t just kill them. Until that happens, and with a heavy heart, I can’t support medically assisted suicide.
@:Jennie, The use of DNRs (Do Not Resuscitate instruction on a patients notes) especially during Covid is a scandal that needs looking. I totally share your concerns. DNR instructions should only be added to a patients note with the informed consent of the patient. I would suggest that everyone has a Living Will detailing what treatment they want to prolong life in an emergency prepared and registered with their local GP & Hospital.
However, they are not the same as Assisted Dying. I agree that it must not be use as a way of killing off disabled (or nay other) patients against their wish and yes we need to re-educate medical professionals (and others) that all lives are worth living for as long as the patient, and the patient alone, wants. This is why the criteria for assisted dying is restricted to those with a terminal condition and are expected to die within the next 6 months.
Sure, but once the principle is conceded it’s easy to expand – see also tuition fees.
In Canada they’re “assisting” people to die for being fat or homeless
https://apnews.com/article/euthanasia-ethics-canada-doctors-nonterminal-nonfatal-cases-dfe59b1786592e31d9eb3b826c5175d1
Leon, whatever “should” be done, the fact is that DNR notices right now are *not* applied with informed consent, but often without the patient’s knowledge, or with the patient bullied into it by medical staff.
While we have a medical profession that considers my life not worth living, giving that profession the power to end it is unconscionable.
Please listen to disability rights groups about this, before supporting proposals that *will* lead to our murders.
I am concerned that the price of giving choice to some will be paid by the most vulnerable and those least able to withstand being made to feel guilty about requiring care to carrying on living.
Jennie, touch’s on an important point, namely: who will be providing the service?
I suggest, in part for the reasons Jeannie raises and my own experience with the medicalisation/hospitalisation of birth and from the third sector where the NHS just don’t get the concept of “service users”, preferring to talk about patients, that the service should be outside the NHS, just like much of the hospice/palliative care provision is currently. Obviously, this raises funding issues.
It rather depends on what the ‘assistance’ comprises. Giving a patient the means to take their own life is one thing. A practitioner sticking the needle in is very different.
Inside the NHS, I wouldn’t wish to be treated by a doctor who was willing to kill me if asked.
Outside raises questions about what sort of person – however you dress it up – is willing to take the lives of strangers.
I had a pancreatic infection and nearly lost my life several years ago. After this I lost my sight. Finding eating a problem and I still need to watch what I eat. Surgery did help my sight issue and further surgery to help with eating.
The assisted dying is a thoughtful one. Up to the individual but I went on to find life much sweeter as my life had changed I had to adapt.
Jennie, and Andrew Hickey, thank you both so much for speaking out so eloquently about the dangers of any move towards allowing *assisted dying”.
Those who support this legislation will say that there will be safeguards in place and that this will only ever apply to people who are terminally ill and have less than six months to live. But the evidence of what has happened in those countries that have had assisted dying for several years, shows that it always *begins* with careful safeguards, but then inevitably these safeguards are loosened, further and further, until people are being killed who are not terminally ill at all. Non terminal illnesses begin to be included, including mental illness. Then people are killed who are not ill at all, but disabled.
As you mentioned above, the situation with DNR notices during Covid shows how medical professionals often regard disabled people’s lives as being of less value. DNR could only possibly be justified if someone is too frail to have any chance of being saved by resusitation, and even then a DNR notice should only be with the patient’s consent. It is may be true that DNR is different from assisted dying, but it when DNR notices were given to people with autism, who could have been saved by resusitation, this was legalised killing.
I am a retired solicitor with nearly 40 years’ experience of dealing with elderly people and their families. I can say beyond a shadow of doubt that whatever safeguards are provided there are those who, with an eye to their potential inheritance, will encourage elderly relatives to end their lives prematurely. It would be nice if this were untrue, but sadly it isn’t.
As a long term, severely Disabled Person (nearly 40 years since diagnosis) the last time I was in hospital, a couple of years ago, the hospital doctor told my son that he (the doctor) presumed that my son, not even me, wanted a DNR notice on my notes.
My son said that was MY decision, not theirs and we both said no to a DNR note but the Doctor seemed surprised.
What shocked me was that presumption that my son would decide this and not me. I was not asked for MY OWN opinion about MY OWN life. I was and stlll am, fully able to make my own decision but this Doctor didn’t even THINK to ask ME what I wanted…
Poppy, I am so sorry to hear about the way you were treated in hospital. This doctor’s behaviour is horrifying, but I am afraid it may not be unusual. Any decision about a DNR notice should be made by the patient, not by doctors, or relatives, or anyone else (except in exceptional circumstances, for example if the patient is in a coma). There need to be far stronger legal safeguards on patient’s rights
Whilst I am not against assisted dying for those who wish to end their live I am not yet convinced that adequate safeguards are possible. The appalling experience that Poppy narrates does nothing to assauge this. Did you look into whether the doctor concerned was in breach of any professional ethics or report them to their professional body?
The question I ask the advocates of assisted dying is what amount of people being pressured or coerced into choosing to die that would give them pause for thought. Suppose a series of studies found that, say, 10 people a year were being pressured into choosing assisted dying? Would the harm to them outweight the benefit to those who found their lives intolerable and wished to be assisted to die?
Turning to safeguards I think that many could be introduced.
For example at least one of the doctors whose approval was needed should be a paliatuve care specialist.
Doctors who fail to comply with medical ethics or breach rules on assisted dying should be subject to the most severe professional misconduct rules.
Andrew Tampion, I’m afraid I don’t think any safeguards would ever be adequate. Countries which have introduced assisted dying have *always* begun by allowing it only for people who are terminally ill, and have always insisted that there are safeguards in place. But as I mentioned above, over time these safeguards are invariably loosened more and more. I’m afraid any legalising of “assisted dying” will inevitable set the UK on a similar path to countries such as the Netherlands, Belgium and Canada, ending up with doctors agreeing to kill people because they are mentally ill, or disabled, or just unhappy
Catharine Crossland. You may well be right.
I assume therefore that your response to my preceding post would be that the harm of even one person being pressured into agreeing to assisted dying exceeds the benefit to any number of people who for reasons of, to them intolerable suffering, wish to be assisted to die?
The problem is that some people do genuinely wish to die. Indeed suicide was a criminal offence in the UK before the passing of the Suicide Act in 1961. So, as liberals, making it difficult to exercise freedom of choice should be somethin we try to avoid were possible.
Also if some people, including some doctors, want to encourage or promote assisteed dying then that is a matter of ethics and perhaps part of the solution is to look at ethics training for doctors.
I don’t know whether any research has been done into the likelihood of people being pressured into assisted dying and if it has what the results are. We have anecdotal evidence and may be some criminal prosecutions. Biut for me that isn’t enough to rule it out. Even though at present I am not in favour.
The question at the heart of any discussion of assisted dying is whether, in a free society, individuals should be allowed to die if they wish to. Suicide was for generations a crime and people were not buried in sacred ground if they killed themselves and were prosecuted if their suicide attempt failed.
Also, it depends on what is meant by assistance. At the moment even providing the means by which people could kill themselves is illegal. Allowing people to purchase the means of suicide is assisting them to die. There is a further step in which people are actually assisted to die by someone else injecting drugs for them or putting fatal drugs in their food or drink, with their knowledge.
As I understand it, the proposed legislation would allow someone else to assist a person to die.
As a Liberal, I support the right of people to do what they want to as long as they do not injure others in so doing. So committing suicide is a right that everyone should enjoy.
That is very different from allowing a doctor or a nurse or some other person to actively help the would be suicide. That really does need very careful consideration and adequate safeguards. I am not at all certain that the slippery slope argument is incorrect.
I admit to being less than certain that any right to die would not be abused for personal gain by unscrupulous people.
Andrew Tampion, you ask whether I agree that “the harm of even one person being pressured into agreeing to assisted dying exceeds the benefit to any number of people who for reasons of, to them intolerable suffering, wish to be assisted to die? “.
Put like that, it does sound like a difficult ethical dilema. But of course it wouldn’t really be the needs of “one person”, weighed against the needs of “any number of people”. It would actually be a large number of people who would feel pressurised into requesting “assisted dying”. These people would not necessarily have been put under deliberate pressure by unscrupulous relatives – although some would have been. Many might just have convinced themselves that they ought to be”unselfish”, and not be a burden to their relatives
Continuing from my last comment, I don’t know whether you saw it, but I few days ago another article on “assisted dying” appeared on Lib Dem Voice, which took a very different approach to the article on which we are currently commenting. here is a link :
https://www.libdemvoice.org/greater-love-has-no-one-than-this-to-lay-down-ones-life-for-ones-friends-76327.html
I think that article made me feel more angry than any other article I have ever seen on Lib Dem Voice. The author, a former Lib Dem parliamentary candidate, seems to be arguing that choosing suicide is an act of love and perhaps a duty. He actually tries to back up this argument by quoting from the bible (taking verses completely out of context). I could not help feeling that Lib Dem Voice should not have accepted that article, in view of the effect it could have on vulnerable people.
The horrifying attitude expressed in that article could become socially acceptable once “assisted dying” was legalised.
(I should add that Leon Duveen’s article is quite different from the article I just mentioned, and is clearly well meaning)
I have read many anecdotes of end of life experiences to prop up support for this bill and the populist support for it . (and of course we only read of how the relative interprets what is happening) As a L.D. this immediately raise alarm bells, as we are not to be tossed to and fro by every wind of opinion but have a duty and philosophy of seeking good, sound laws – therefore I would rather see real research. The bill is based on a mythical middle class understanding of social behaviour and one recalls one of the reasons we stopped hanging was human error. Also I cannot see how there will ever be enough safe guards to protect the patient from various forms of pressure
There is also the claim by many , ‘it is my right’ and again as a L.D. this raises alarm bells. It feels like some kind of extreme thatcherite individualism which ignores community and mutual responsibility. Surly as L.D we should be agitating for better end of life care, better hospices etc.,?
I also note that the language of this Bill and supporters seeks the softer approach rather than calling it our as assisted suicide etc., Having read Kim Leadbeaters article in the guardian the other week only confirms what weak foundations this Bill is proposed on and therefore L.D should oppose it front and center
I agree we need both. They are related though indirectly. They are both good. One is partly an insurance against the other.
I am a qualified Independent Mental Capacity Advocate and former Liberal Democrat Cllr in Haringey. Here is my letter to Catherine West MP.
My opposition to this legislation is not due to religious conviction, rather it is based upon 15 years experience working as an Independent Mental Capacity Advocate (IMCA) and Mental Health Advocate (IMHA) in hospitals and care homes, ensuring that the rights and dignity of vulnerable people are respected, and that they are the centre of care planning. I am employed by a leading mental health charity.
I am asked to advocate for people who are in intensive care and their medical team is advising that they may be be beyond the state where further treatment would be successful, in which case there is a well-established process under the Mental Capacity Act to involve family, if there are any, to consider options. When I am appointed as their IMCA I will always visit them and I will read their notes and talk to their clinician before a decision is taken.
At a time when hospices are closing for lack of funds it would be monstrous to pass this legislation; vulnerable people with dementia or learning difficulties in carehomes are given blanket Do Not Recusitate Orders (DNAR) by GPs and pressure and fraud from family members over property or money is common.
It would be helpful to ensure that this Bill is defeated, and that the financial support is made to hospices and the rights of the disabled are upheld.