Friends, this was unexpected.
In the last couple of weeks Ellie, at Dignity in Dying, has been talking to me about using my ‘story’ in their ongoing campaign. You might know that on Wednesday their Chair, Baroness Meacher, introduced an Assisted Dying Bill in the House of Lords. D in D are trying to get maximum support and have been approaching newspapers.
It seems The Times might want something from me for their campaign a little later, but suddenly, mid-afternoon two days ago, The Telegraph asked Ellie to get 700 words from me by 09.00 the next day, yesterday morning. Late that night I sent her around 850 words. She reduced it and we agreed a somewhat watered down version by 08.55 yesterday, which she sent off to the Telegraph just in time. We had no idea when or if it would be published.
Then later yesterday, mid-afternoon, Ellie suddenly emailed again to say it had gone live on the Telegraph’s online version. The link is here. That shows the article and also any subsequent comments which, given that it’s a controversial topic, could be very interesting! It’s all behind a paywall, so if you don’t already subscribe you have to sign up – but it’s free for a month and you can cancel any time.
Ellie kindly also sent the text in her email, and here it is:
As someone dying of a terminal illness, I support the Assisted Dying Bill
Palliative care can smother pain and ultimately consciousness, but it does not mitigate all suffering
DAVID PEACE 28 May 2021 • 4:31pm
I am terminally ill with motor neurone disease, for which there is no cure. Protracted suffering and a very unpleasant death await me as the disease spreads throughout my whole body, paralysing every muscle. Baroness Meacher’s Assisted Dying Bill, introduced to the House of Lords this week, gives comfort to people like me, approaching their final months of life.
The hoped-for change in the law will come too late for me but I am writing this in the earnest hope that before too long the fear and horror felt by British citizens with life-ending conditions will be assuaged by a sensible, well-safeguarded legal system to help them to die with dignity in the last period of their lives.
Baroness Campbell has argued against this Bill. As a disabled person, she has her own experience and views. But she cannot claim to speak for all terminally ill people.
I was diagnosed in July 2019. As of today I cannot speak, eat, drink or swallow. I communicate via text-to-speech software. I syringe liquid nutrition into my stomach via an external pipe, and every day I choke on saliva and mucus in my throat. At any point I might not pull through that awful daily experience. In addition my head is slumped on my chest unless I wear uncomfortable and very limiting neck braces. My left arm, hand and leg are weak. Walking is becoming riskier and balance is unpredictable. Breathing becomes more difficult as the disease starts to attack my lungs. More and more muscles are being robbed of their strength. I watch and feel it happen day by day. It cannot be stopped.
I am not depressed. But I am a realist. I know what to expect at the end. It will be dreadful. That is why, two days after the diagnosis in 2019, I became a member of Dignitas and early last year began the application process in earnest, which was approved. This is my insurance policy against a bad death.
Having this option in place ensures I can have a quiet, calm, dignified and easy end of life with Dignitas, at any date we agree. I was deeply comforted by one of the necessary consultations with one of their doctors – a requirement as part of their safeguarding procedures which I brought forward because of my disappearing voice.
I plan to go to Dignitas to end my life later this year, but I have pandemic regulations in Switzerland and Britain to contend with, as well as my own strength in order to withstand the journey. If either fails me, I will be trapped in my home country; a country that refuses to help me die the way I want.
All terminally ill, mentally competent adults who know how their particular illness will kill them, and who do not want the increasing suffering before the end, surely deserve help. Many want to keep control, to decide on a calm, quiet, comfortable and dignified death in their own country, possibly at home, with those whom they love and who love them. Our rational wish is to manage the end of our lives the way we want, rather than via the inevitable suffering that these cruel terminal illnesses impose on us.
Palliative care can smother pain and ultimately consciousness, but it does not mitigate all suffering. The prospects of more and more pills, opiates and sedation, tubes into the throat and other interventions – those prospects are dire compared with the Bill’s prospect of a calm, organised, pain-free and dignified end of life in Britain.
To the terminally ill, Baroness Meacher’s Bill gives peace of mind. As in other countries it will mean people will not have to resort to suicide attempts, many of which fail with awful consequences to the individuals and their loved ones. It will provide autonomy and control. It will save individuals the £10,000 required for a legal end of life in Switzerland, beyond the pockets of most sufferers. It will avoid great disruption in planning and making an international journey at the most vulnerable time of one’s life.
Legislators in territories around the world provide such help for their terminally ill citizens. Surely the Brits are worthy of the same.
Frankly I’d never intended to get involved in promoting changes to the law, and I’m a bit apprehensive at how this is developing, but given my condition and prospects I’m beginning to feel, “What the hell! Might as well!”
David. This is amazing, I know Jane Campbell, or at least I did when she was Chair of the Social Care Institute for Excellence. She is someone I greatly admire and I have heard her speak on this subject. Her pitch is persuasive and I was quite ambivalent about a change in the law but have become completely convinced, not least by your views and experience. There is no justification for ending the life of someone who has a disability and who does not want to die. Protection against any pressure to do so must be provided but not at the expense of denying those who face great suffering at the end of life a dignified and less traumatic death.
Baroness Campbell’s piece focussed on protecting those with disability from being ushered into an early and unwanted death. On the surface, a noble sentiment. However, what she failed to make clear was that this Bill would never affect someone in her position or those she sought to protect – she is not and does not consider herself to be terminally ill. This Bill is for ‘terminally ill, mentally competent adults’, and acts to give people in these very specific circumstances a choice in the way they may want to end their life. Just a choice, not an obligation. Frankly it offers them a choice in how to ‘live’ their life. Terminal illness is not a symptom of disability, but regrettably for those like David, the reverse is true, and this Bill can’t come soon enough. Campbell’s message that a change of the law is akin to eugenics is disingenuous propaganda. “We need help to live – not to die” she says, but she doesn’t realise by giving some people a heavily safeguarded choice, they’re being given a one way ticket to living their remaining life rather than just existing in it.
Fantastic David, and very moving! I do hope it helps to alter the mindset of those who have no idea of what people in your situation are going through, all day, and every day.
What else can we say, except thank you for taking up the battle.
It must have taken a lot of effort and willpower to submit this so quickly. As always your wish to help others, and your courage in speaking out , fills me with pride and total respect and admiration Much love x
Dave, this is so powerful and so articulately put, as always. Putting it together in such a short timeframe must have been tiring and pressured, but you did it brilliantly. Thank you for continuing to be such an inspiration to those who know you, and far beyond. And let us hope that a change in the law comes very soon. All my love, Cam xxxx
Quite.xx
Brilliantly put, Dave. Really powerful and compelling. A new first, or do you have other articles to your lordship’s name? So glad you were able to summon the energy to compose this. O that They may get it and vote with good conscience. Take it easy yourself now 😀
It’s so good to see that, as well as inspiring your friends and blog readers, you are now contributing to the national debate. When the law changes – as it surely must – we will wonder why it didn’t happen sooner. But you will have had a part in it.
Your case for Assisted Dying in this country is convincing. It should make a big difference.
Assisted Dying was discussed in the French Parliament last month (“Droit de mourir dans la dignité”).
A law had been already voted in 2016 (la Loi Leonetti, after the name of the Conservative MP, also a cardiologist, who drafted it). It (1) gives the patient the right to ask for a “terminally sedative “ treatment in the hospital (as opposed to assisted dying), (2) ensures that, in case he had written pre-instructions to that effect , those should be applied (it goes as far as saying that a trusted person may, in the absence of such pre-instructions, testify on his behalf).
However, in practice, the existing 2016 law is haphazardly applied.
First, hospitals are poorly equipped in “traitements palliatifs “ for terminally ill persons.
Second, it is often difficult for physicians, who have been trained to fight illness by any means, to accept “ pulling the plug “. Indeed, many decide, cas by case, do so quietly, in the secret of their moral conscience, but it is an extremely difficult choice, all the more so, because they may incur legal pursuits from the family (high profile legal cases have been lingering for years).
And last, the public opinion remains split. Although polls suggest a large majority support the principle of “dying with dignity “, debates turn very passionate once you discuss what that exactly means, in which situations, who decides, etc.
It is no surprise that, when the new Law proposal was brought to the Parliament last month, some 3’400 amendments were registered by opponents, with the result that time constraints allowed only one article to be passed before the session was adjourned.
Superb article David. I myself was, until a few years ago, uncertain about assisted dying. My concern was about safeguards not principles or ethics. I have come round to being much more confirmable about our ability to manage this issue well. I hope the Bill goes through.
Typo!! “Comfortable” not “confirmable” Sorry!! Proof reading has never been my strength!!
David ! Your article is everything I expected it to be- logical, lucid and quietly passionate. If this Bill doesn’t go through this time it certainly will at a later date and this will be in large part due to witness like yours. The tenacity you have shown in this is yet another quality we have to add to all the rest.
Well done hope it goes through