Diabetic MP’s bid to ensure her condition is not included as cause for assisted death.

[Amity Island]

An MP who developed type 1 diabetes has spoken of her fears that the proposed assisted dying legislation is so vague her condition could be included as a valid reason to end someone’s life.

Sarah Bool, the new Tory MP for South Northamptonshire, laid an amendment to Kim Leadbeater’s controversial bill last week to highlight the issue, and is calling for a list of conditions that should or should not included. Ms Leadbeater though disputes the need for such a list arguing that diabetes is “not a terminal illness”.

Diabetic MP’s bid to ensure her condition is not included as cause for assisted death

Sarah Bool is calling for a list of conditions that should and should not be included in the controversial bill, due to concerns about its vagueness

www.independent.co.uk

 

[rebrascora]

Can't say I am at all worried about my Type 1 being a cause for legal assisted dying, although if I got to the stage that I couldn't take care of myself with no hope of improvement, I think I would probably be quite happy for someone to make that decision for me.

 

[Satan’s little helper]

Hmmm, not everybody would choose this as “end of life.” I had a colleague who was insulin dependant. T2. He had terminal cancer. (Liver, he told me. “I’m sorry,” I said. “Not your fault’” he replied.) I was moved into his department to help him out. One day after a month. he upped & walked away to spend more time with his family. & that’s where it ends. He has my respect.

 

[rebrascora]

Maybe those of us who would want it to be ended for us should be able to sign up to it whilst we are of sound mind and body, a bit like signing up to being an organ donor.

 

[Bruce Stephens]

An MP who developed type 1 diabetes has spoken of her fears that the proposed assisted dying legislation is so vague her condition could be included as a valid reason to end someone’s life.

That's obviously not the intent of the legislation.

The broad aim of the Terminally Ill Adults (End of Life) Bill is to allow adults aged 18 and over, who have mental capacity, are terminally ill and are in the final six months of their life, to request assistance from a doctor to end their life.​

I suspect what she really wants is to get some publicity as a newly elected MP in a much reduced opposition party.

(Maybe there are some issues with the wording of the bill that might allow its use in people who don't have mental capacity, and that's of course worth fixing.)

 

[CliffH]

That's obviously not the intent of the legislation.

The broad aim of the Terminally Ill Adults (End of Life) Bill is to allow adults aged 18 and over, who have mental capacity, are terminally ill and are in the final six months of their life, to request assistance from a doctor to end their life.​

I suspect what she really wants is to get some publicity as a newly elected MP in a much reduced opposition party.

(Maybe there are some issues with the wording of the bill that might allow its use in people who don't have mental capacity, and that's of course worth fixing.)

I have worries about any 'assisted dying' legislation from my perspective as someone who's worked with people with intellectual disabilities and/or autism spectrum conditions for more than 30 years.

The issue of "mental capacity" is a complex one and is covered (in England and Wales) by the Mental Capacity Act (MCA). There are two issues that would need to be tested in court:
1) How do we assess whether or not someone has capacity to decide whether or not to end their life, when their capacity to make that decision is called into question?
2) If someone lacks capacity to make an important decision, the MCA requires people who have responsibility for supporting that person (including the courts, if necessary), to make a decision in that person's 'Best Interest'. How will that decision be made in the context of whether or not to end someone's life?

My (very limited) understanding is that 'mission drift' tends to occur in countries that have brought in 'assisted dying' legislation, in that gradually it becomes easier and easier for people to choose to end their lives - possibly including people who worry that they've become a burden to their family.

In the same way that people with disabilities have been given (unlawful) 'Do Not Resuscitate' directives in hospital when they lack capacity to make that decision, I worry that, very gradually, it will become easier and easier for society to kill people with disabilities who lack capacity to make that decision for themselves.

I'm also concerned that palliative care funding will be diverted to fund assisted dying. If not, where will the money come from, given that it will be enormously expensive, not least in the cost of legal challenges in individual cases?

I should say that I have enormous sympathy for people with (for example) terminal cancer - and I might well fly to Switzerland myself if I were in such a situation. I have no religious objection to suicide. However, on professional and personal levels, my concern is more about people who find it hard to speak up for themselves and (in my experience) are always seen by society as a burden, rather than about people who can argue cogently and loudly why they should be allowed to kill themselves.

 

[Amity Island]

I have worries about any 'assisted dying' legislation from my perspective as someone who's worked with people with intellectual disabilities and/or autism spectrum conditions for more than 30 years.

The issue of "mental capacity" is a complex one and is covered (in England and Wales) by the Mental Capacity Act (MCA). There are two issues that would need to be tested in court:
1) How do we assess whether or not someone has capacity to decide whether or not to end their life, when their capacity to make that decision is called into question?
2) If someone lacks capacity to make an important decision, the MCA requires people who have responsibility for supporting that person (including the courts, if necessary), to make a decision in that person's 'Best Interest'. How will that decision be made in the context of whether or not to end someone's life?

My (very limited) understanding is that 'mission drift' tends to occur in countries that have brought in 'assisted dying' legislation, in that gradually it becomes easier and easier for people to choose to end their lives - possibly including people who worry that they've become a burden to their family.

In the same way that people with disabilities have been given (unlawful) 'Do Not Resuscitate' directives in hospital when they lack capacity to make that decision, I worry that, very gradually, it will become easier and easier for society to kill people with disabilities who lack capacity to make that decision for themselves.

I'm also concerned that palliative care funding will be diverted to fund assisted dying. If not, where will the money come from, given that it will be enormously expensive, not least in the cost of legal challenges in individual cases?

I should say that I have enormous sympathy for people with (for example) terminal cancer - and I might well fly to Switzerland myself if I were in such a situation. I have no religious objection to suicide. However, on professional and personal levels, my concern is more about people who find it hard to speak up for themselves and (in my experience) are always seen by society as a burden, rather than about people who can argue cogently and loudly why they should be allowed to kill themselves.

Well said.

As you say, the goal posts will be widened over time. Look to Canada for an example.

Let's not forget long standing issues, for example, cold and damp houses cost around 5,000 deaths a year, none of these people agreed to die this way.

 

[CliffH]

Well said.

As you say, the goal posts will be widened over time. Look to Canada for an example.

Let's not forget long standing issues, for example, cold and damp houses cost around 5,000 deaths a year, none of these people agreed to die this way.

I can imagine, in years to come, conversations along these lines:
Diabetes clinician: "I'm very sorry to hear, now that diabetics have to pay for prescriptions, that you can't afford your insulin. Do you realise that you'll probably go blind and/or have to have amputations?"
Patient: "It can't be helped: I'll just have to go for assisted dying if that happens, as I couldn't face living if I were blind or lost a limb".

I worry that assisted dying will come to be seen as a money-saving option for society, with people coming under all kinds of subtle (and not so subtle) pressures to 'choose' it. It won't be well-off, articulate people who'll come under those pressures though: it will be the people who already get overlooked and discriminated against.

 

[Amity Island]

I can imagine, in years to come, conversations along these lines:
Diabetes clinician: "I'm very sorry to hear, now that diabetics have to pay for prescriptions, that you can't afford your insulin. Do you realise that you'll probably go blind and/or have to have amputations?"
Patient: "It can't be helped: I'll just have to go for assisted dying if that happens, as I couldn't face living if I were blind or lost a limb".

I worry that assisted dying will come to be seen as a money-saving option for society, with people coming under all kinds of subtle (and not so subtle) pressures to 'choose' it. It won't be well-off, articulate people who'll come under those pressures though: it will be the people who already get overlooked and discriminated against.

Sadly it will come to pass, I reckon within 5 years of the law passing, we will see these things becoming commonplace. Alongside this, of course, will be a cultural societal change in attitude coupled with plenty of propaganda promoting it. "Do it for others", "do it for your country", "do it for your grandkids". It's all so predictable.

 

[CliffH]

Sadly it will come to pass, I reckon within 5 years of the law passing, we will see these things becoming commonplace. Alongside this, of course, will be a cultural societal change in attitude coupled with plenty of propaganda promoting it. "Do it for others", "do it for your country", "do it for your grandkids". It's all so predictable.

Hopefully at least we won't get to the neo-Trumpian dystopia of, "Choose assisted dying or be deported". However, I can imagine a scenario in which we say to someone who's committed a terrible crime at the age of 17 and who's black, autistic and the child of (legal) immigrants: "You can choose assisted dying - or you'll spend your life in prison".

 

[Amity Island]

A piece today in the Telegraph.

The terminally ill do not have “free choice” on assisted dying because palliative care is so poor, a Marie Curie boss has warned.

Sam Royston, Marie Curie’s executive director of research and policy, told MPs the assisted dying bill offers “inadequate” guarantees over end-of-life care, risking vulnerable people feeling pressured into ending their lives due to lack of support.

The hospice charity has a neutral stance on the Bill, which was proposed by Labour MP Kim Leadbeater, but Mr Royston said he was “disappointed” with its palliative care provisions.

He said it was not sufficient to require a doctor to inform a patient on the available options for palliative care, pointing out that the Bill does not ask them to say “whether there should be any available palliative care”, but instead “just to tell them if it is available”.

He said: “That could be, ‘no, there’s nothing available, I’m afraid’. But that, I think, is inadequate.”

Terminally ill ‘do not have free choice’ on assisted dying

Lack of palliative care options could pressure vulnerable into life-ending decision, Marie Curie boss warns

www.telegraph.co.uk

Terminally ill ‘do not have free choice’ on assisted dying - Anglican Mainstream

by Janet Eastham, Telegraph: Lack of palliative care options could pressure vulnerable into life-ending decision, Marie Curie boss warns. The terminally ill do not have “free choice” on assisted dying because palliative care is so poor, a Marie Curie boss has warned. Sam Royston, Marie Curie’s...

anglicanmainstream.org

 

[Docb]

Hopefully at least we won't get to the neo-Trumpian dystopia of, "Choose assisted dying or be deported". However, I can imagine a scenario in which we say to someone who's committed a terrible crime at the age of 17 and who's black, autistic and the child of (legal) immigrants: "You can choose assisted dying - or you'll spend your life in prison".

@CliffH, I think that this post rather puts a dent in the eloquence of your long post above making the case against legalisation of Assisted Dying. The problem of exploitation of people with diminished capacity is real but guarding against a dystopian future is going a bit far.

Like all these difficult areas, it is all too easy to pick on extremes and present them as if they are vital to the debate. They are not. There is a consensus, if a free vote in parliament can be considered as such, that there should be a change in law regarding assisted dying. Many will welcome that, not because they are evil people wanting to remove vulnerable relatives, but because they see a future as a result of a terminal medical condition that they do not want to experience. Their views also need to be respected.

It seems to me that what is required is sensible reflection and consideration of the central issues in order that legislation is framed to provide the safeguards needed to make it workable. This is not going to be straightforward and dragging the debate to the extremes will not be helpful.

 

[CliffH]

That's obviously not the intent of the legislation.

The broad aim of the Terminally Ill Adults (End of Life) Bill is to allow adults aged 18 and over, who have mental capacity, are terminally ill and are in the final six months of their life, to request assistance from a doctor to end their life.​

I suspect what she really wants is to get some publicity as a newly elected MP in a much reduced opposition party.

(Maybe there are some issues with the wording of the bill that might allow its use in people who don't have mental capacity, and that's of course worth fixing.)

@CliffH, I think that this post rather puts a dent in the eloquence of your long post above making the case against legalisation of Assisted Dying. The problem of exploitation of people with diminished capacity is real but guarding against a dystopian future is going a bit far.

Like all these difficult areas, it is all too easy to pick on extremes and present them as if they are vital to the debate. They are not. There is a consensus, if a free vote in parliament can be considered as such, that there should be a change in law regarding assisted dying. Many will welcome that, not because they are evil people wanting to remove vulnerable relatives, but because they see a future as a result of a terminal medical condition that they do not want to experience. Their views also need to be respected.

It seems to me that what is required is sensible reflection and consideration of the central issues in order that legislation is framed to provide the safeguards needed to make it workable. This is not going to be straightforward and dragging the debate to the extremes will not be helpful.

I take your point. Nevertheless, as someone who's been involved in many complex Mental Capacity Act scenarios over the years (including being instructed by the courts as an expert witness), I do think that we need to consider likely unintended consequences, even when the impetus behind the initiative is clearly admirable and humane.

 

[everydayupsanddowns]

A reminder to members that this is a sensitive topic, and people reading this thread will have a variety of experiences, emotional resonance, and positions on a highly emotive topic. Please be kind to those who may have a very different view to you (and may not be openly contributing).

Alas it is also a topic which is open to political exploitation, precisely because it is so emotive. Type 1 diabetes wouldn’t be considered under the bill, because it is not a terminal illness.

It is natural and proper for people to be worried about the possibility of a ‘slippery slope’, but some of the scenarios proposed (unaffordable insulin, deportation or death) again do not lie within the scope of the proposed bill, and I can’t see that such a change would happen as quickly as 5 years given how long people have been campaigning for assisted dying in the U.K. and how understandably cautious and careful lawmakers are being in any moves towards that.

From a faith perspective, I personally believe life is precious, and sacred. But I also believe in mercy. Imagine a person expected to only live for 6 months, unable to move, and each day living in excruciating pain which no painkillers can manage. Someone whose affairs are in order, and is literally just waiting to expire with no hope of relief or improvement. What if the 6 months becomes 9? Or 18?

Currently, under the law, we require that person to endure weeks and months of suffering. However much they wish it to all be over. If there are loving family remaining, they must witness the suffering, for as long as it lasts, and can do nothing about it. If the person has no family left, they must wait out their agonising death sentence alone.

If someone treated an animal that way they would be prosecuted for cruelty.

It is completely right that this bill is thoroughly debated and teased out, that it is extremely carefully considered from all angles, and with the views of experts in the field (eg those involved in palliative and end of life care). And that any unintended consequences are guarded against. Without that it should quite rightly be thrown out.

 

[Docb]

I take your point. Nevertheless, as someone who's been involved in many complex Mental Capacity Act scenarios over the years (including being instructed by the courts as an expert witness), I do think that we need to consider likely unintended consequences, even when the impetus behind the initiative is clearly admirable and humane.

Absolutely agree with that, I just think that it will be hard enough to get the fundamentals right without trying to cover the extremes. The courts need to be given legislation with the clarity needed for them to work with and develop precedents. For me, that means focussing on the big issues and not let that focus be distracted.

Like you I have some, albeit second hand, knowledge of the problems involved. My son-in-law is a KC who has worked in the Family Division and could well be one of those sitting in judgement on this sort of case. He is very interesting to talk to when it comes to getting an insight into how the law works in practice.

 

[Amity Island]

Type 1 diabetes wouldn’t be considered under the bill, because it is not a terminal illness.

This really depends on definitions. These can change. For me, without insulin, the outcome wouldn't be good.

"It means the disease you have is irreversible or incurable."

Living With Terminal Illness: How To Cope

Hearing that you have a terminal illness can result in a myriad of emotions. Learn how you can cope with your diagnosis and find hope.

my.clevelandclinic.org

 

[everydayupsanddowns]

This really depends on definitions. These can change. For me, without insulin, the outcome wouldn't be good.

"It means the disease you have is irreversible or incurable."

That feels like a straw man to me.

The bill isn’t talking about people with T1 being refused (or being unable to afford) insulin.

That IS happening (in the US) and people ARE dying as a result. But it isn’t anything to do with assisted dying and they aren’t choosing it.

 

[Amigo]

As someone who has a treatable but incurable cancer and a child with autism, I can only assume from some of the comments that there is real misunderstanding and confusion as to the content and purpose of this bill. I absolutely despair when I read some of the ‘philosophical and religious’ reasons for opposition. This is about consent, the opinion of two doctors, capacity to choose and a very limited life expectancy not a societal culling exercise. And no, I’m certainly not in any way naive.

 

[gail2]

All i would say on this subject that is i were to be thermally ill nd had limited time left i would want the option if i didt lack capacity to end my life I believe that should be your right to choose so if you are of sound mind you should be allowed to do this

 

[Amity Island]

That feels like a straw man to me.

The bill isn’t talking about people with T1 being refused (or being unable to afford) insulin.

That IS happening (in the US) and people ARE dying as a result. But it isn’t anything to do with assisted dying and they aren’t choosing it.

I guess we will have to cross that bridge if we get to it. But for me, Type one, even as it stands today, could be considered an irreversable (yes treatable) and incurable illness. I defiitely think DUK could offer some insight into this in light of Jo Cox's sister pushing this through parliament etc