I want control over how, when and where I die – Woman with terminal motor neurone disease says in emotional plea to government


I want control over how, when and where I die -  Woman with terminal motor neurone disease says in emotional plea to government

A former nurse, Alison Pickard, has revealed she would like to be able to take her life when she wants it due to the fact she suffers from a Motor Neurone disease.

Assisted dying also known as physician-assisted suicide, is suicide that is assisted by a physician or other healthcare provider – and is illegal in England and Wales with a jail term of up to 14 years.

According to Pickard, if advances in medical science can make people decide to prolong their death, people should not also be limited when it comes to deciding to take their lives especially when the person suffers with a degenerative disease like she does.

According to her “I cannot change the final destination, but to influence the journey would provide greater reassurance and peace of mind to me and my family.”

She has now written an open letter to the government, asking the government to think about people like her and reverse the controversial law.

Read her letter to the government as published by Metro UK.

“Today marks 60 years since the introduction of the ban on assisted dying in England and Wales.

It still remains a crime punishable by up to 14 years in prison.

In the past six decades, medical advances have come on leaps and bounds, and as someone living with a terminal illness – motor neurone disease (MND) – I am enormously grateful for them. They have enabled people in my position to live longer and better lives, and it is even possible to live as a ‘human cyborg’ like the scientist Peter Scott-Morgan – also diagnosed with MND.

He has recently spoken publicly about how he has outlived his original prognosis and achieved what he feels is an excellent quality of life through cutting-edge technology and pioneering treatments. The key aim for him is to stave off death for as long as possible.

We can now effectively ‘hack’ life. But what about death? After 60 years of the assisted dying ban, is it not time we found a better way to die that is fit for the 21st century?

While I commend Scott-Morgan’s optimism and respect his personal choices, I do not relate to his experience. He opposes a change in the law to enable assisted dying as a choice for terminally ill people in their final months, whereas I feel this is urgently necessary, as do seven in 10 people with advanced or terminal illness.

I was a nurse for 42 years and have lived with MND for almost a decade. I have always understood death as a natural fact of life, but have lately come to accept that it will come sooner for me than I’d hoped.

Coming to terms with this fact, with the support of my medical team, local hospice and loved ones, has been an incredibly difficult but ultimately positive process.

I cannot change the final destination, but to influence the journey would provide greater reassurance and peace of mind to me and my family. I want control over how, when and where I die, just as Scott-Morgan is able to control so much of how he lives his life.

That is why I wholeheartedly back the Assisted Dying Bill introduced by Baroness Meacher, Chair of Dignity in Dying, and call on Peers to speak in its favour when it reaches Second Reading in the House of Lords this autumn.

Facing the end and desiring greater control over it does not mean giving up hope, unless you subscribe to the narrow definition Scott-Morgan lives by. He is, by his own admission, exceptional. And yet he seeks to present a universal approach to coping with terminal illness, which seems to be rooted in the idea that death is somehow a failure.

For me, and for many terminally ill people, this limited view of hope can be suffocating. It stops our doctors having honest conversations with us about when and how we might die. It prevents loved ones from coming to terms with our imminent and inevitable deaths.

It pressures us to present ourselves to the world as happy warriors, waging war against our illnesses and battling bravely on through gruelling treatments, which often merely prolong the dying process.

My definition of hope is somewhat more complex, but no less valid. I hope not for a cure or for eternal life, but for a good life and a good death when the time feels right for me.

Knowing that I could decide when my suffering has become unbearable and receive support from trusted doctors to die peacefully in my own bed, having said goodbye to my husband, children and grandchildren would enable me to live better in the present, free from fear and anxiety.

As a nurse, and later as a patient, I have seen the wonders of palliative care and I am most grateful for it – but I have also seen its limits. A death from MND often involves paralysis, choking, oxygen starvation; suffering that cannot always be relieved.

Refusing or removing a ventilator is a legal choice that can enable people to hasten their deaths, but it does not guarantee a peaceful end. I for one do not relish the thought of being sedated while I suffocate.

Other terminally ill people have no such option and are forced to contemplate starvation, suicide, or Switzerland if they are to wrest back some control over their death. Is this really the best we can do for our dying citizens in 2021?

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