Guest Post: "My colleagues and I have an opportunity to make the end of life safer and more dignified for dying people" - Kim Leadbeater MP writes for Mumsnet ahead of Friday's vote on Assisted Dying

[SophiaCMumsnet]

It was never part of my life plan to come into politics, but now I am here I want to a positive difference. When I came first in the Private Members’ Ballot in September it meant I could choose an area of law that I felt needed reform. I’m a problem solver, and a compassionate person, so when I looked at the current injustice in the available choice at the end of life, I knew it was something I should seek to reform.

I always knew where I stood on assisted dying, and I knew there was a problem that needed to be fixed, but in the process of working on this bill, listening to traumatic stories of how the current law has failed people, I have become more acutely aware of the human cost of the status quo.

At the heart of this debate are the people who are, or who have been, personally affected by the current law. I want the very best palliative care across the country, but I’ve heard so many stories of the pain and suffering which even the best palliative care can’t always manage.

I have heard from so many people who have been through unimaginably difficult times because of the limitations of the current law. Astrid from my constituency, for example. Her father died in 2019 from motor neurone disease. She said: “We had excellent support from our local hospice and medical team, but he had multiple complications. He couldn’t open his mouth for comfort or hygiene. He couldn’t close his eyes at night, but nor could he read or watch TV anymore. Thankfully mentally he was totally fine and he could still communicate. But his last few months were just a cycle of dozing, choking and waking. I still have nightmares that I couldn’t help him.”

For those who want to avoid a similar painful death, there’s the option of going abroad. Those who can afford it can have an assisted death in Switzerland, but often alone, or with the fear of prosecution hanging over any loved ones who accompany them. There are the heartbreaking accounts of dying people taking matters into their own hands, again often alone and behind closed doors.

Dying people who don’t want to suffer against their wishes at the end of life too often face impossible choices. I want to see dying people able to openly talk about their options, with qualified professionals, not having to make decisions behind closed doors. I want to see safeguards and protections that just don’t exist under the current outdated and unworkable law.

Colleagues in Parliament who, like me, hear these incredibly powerful stories of suffering realise that things have to change. The debate and vote will happen on November 29th. Some MPs are immutably opposed to any change in the law. Others are very much in favour, and some who are still yet to decide and are looking very closely at the detail of the bill, and listening to the views of their constituents. I know MPs who have changed their minds after listening to the , often harrowing, experiences of their constituents.

My colleagues and I have an opportunity to make the end of life safer and more dignified for dying people who want choice and control, and I hope we’ll be a step closer to this law change on Friday. MPs do listen to their constituents so it’s not too late for you to let yours know what you think.

Doesn’t the issues in other countries concern you? I used to be all for it and I probably do support this bill as it is just about the terminally ill with not long to live but I am more cautious given the cases in other countries of mentally ill people using the service. We also don’t want a situation of the government not investing properly in care for those very dying because they have the option of ending their life early.

I think you would get more traction on this if instead using emotive language you addressed some of the criticisms and concerns about the practicalities of this. As a proper Commission would have done, and should have done for such a profoundly serious issue.

Many of us are supportive in principle, but cannot see how in such an unequal and sexist society this can ever be applied fairly, without huge numbers of miscarriages of justice.

Also, I know you're not in the cabinet, but your party in government could fund palliative care properly!

My father had properly funded palliative care eventually. There were occasions we had to chase the meds. I can’t say that any more money wound have made things better.

Anyone who talks about properly funded palliative care as if that is a panacea to the issues of terminal illness has clearly never watched someone die in a detailed way (I’m not talking a 30 minute sanitised visit with the rot covered by clean sheets).

We hide death away in nursing homes, care homes and hospitals. Few people have witnessed the day to day excruciating sight of utmost suffering and contorted bodies, stench of cancer, blood from orifices as if from a gruesome horror film - you literally can watch the body decay.

I don’t want that for myself. I don’t want to live life with a broken brain of dementia of a rotting body from cancer. I don’t want to be a shadow of myself before death and make my family endure all that.

Absolutely this.

I was seriously unimpressed with your interview on R4 Today this morning. Your clumsy attempt to shift the conversation away from very clear and reasonable questions around social attitudes and lack of protections around scope creep to an emotive/pulling on the heart strings narrative was poorly done and completely transparent. Very disappointing.

I'm sorry but I think people with mental illnesses should have equal access to assisted dying. My DF died slowly, over a course of a decade, through alcohol. He didn't want to be alive anymore and was too scared to take matters into his own hands. He put his whole family through that. He was in agony every day with after effects of the alcohol. It would have been better if he could have just had a referral. He wasn't living.

I have bipolar disorder and when the kidney failure eventually gets me from the medication, I want access to assisted dying just like someone without mental illness would have. I want my friend who committed suicide slowly and painfully and alone to have had access to a safe way to do what she was hellbent on doing anyway when the ECT failed for the last time.

I wish people would stop trotting MH out to obstruct what many of us with mental illness actually want; the same control we're debating giving to people without mental illness.

I feel there are a million more important issues to tackle at the moment to be honest. This is an extremely divisive issue that will stir up pointless arguments at a time when many people are overwhelmed with the cost of living etc. Maybe it’s a discussion to be had a different time when people are less preoccupied?

This Bill hands such an enormous amount of power from Parliament to one Secretary of State. There’s a proliferation of future use of negative procedure. There’s such a lot being handed to courts off the back of a Bill widely open to interpretation. Why?

Wes Streeting says the NHS is “broken”. Considering that and the litany of Health scandals and accompanying decades long coverups, we can have zero trust in this proposed law.

There are undefined parts of the Bill like “usual communication methods”. These are way too open to interpretation. Why is is drafted like that?

The Bill does not say the Equality Act does not apply. Therefore we can assume future challenges that it “discriminates” against children. Why isn’t that made much clearer?

This is a seismic societal change. Look how long we’ve taken to do hardly anything on internet safety. But this enormous enormous issue is a PMB. Why?

1, no one needs to hear any self-aggrandisement about you being a compassionate person etc which is propaganda designed to sway opinions. 2, relying on biased, over-emotive cases to tug the heartstrings makes bad law. 3, it's far more important to improve access to good palliative care but I think that would be more expensive. 4, you could drive a coach and horses and the whole parade through the holes in safeguarding.