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Simon’s Choice

A debate that will probably never cease to end is that of assisted dying.

Should it be legalised in the UK? Does an individual have the ‘right to die’? What are the consequences of allowing a person the right to end their own life?

The subject is probably one of the most emotive anyone can ever discuss. Many people believe in the right to die and others are vehemently against it.

BBC2 aired a documentary tonight called How To Die: Simon’s Choice.

The documentary tells the very poignant and heart wrenching story of Simon Binner, a man who was diagnosed with Motor Neurone Disease.   A progressive disease of which there is no cure.

MND attacks the nerves in the brain and spinal cord. It affects how a sufferer walks, talks, eats and breathes, simple actions that perhaps you and I take for granted in everyday life. Within 6 – 12 months of diagnosis, speech is likely to get worse, until it reaches the point others are unable to understand.  The arms will become paralysed and legs will become weaker and weaker.  Breathing becomes difficult to the point it eventually becomes unable to be supported.

Simon was given the diagnosis of a terminal disease little over a year ago.

Watching Simon use a machine to say the words he wanted to express himself was difficult. Simon’s wife explained how he was a fantastic communicator, someone with an extremely quick wit, so to lose his voice was the worst possible thing for him.  Simon is able to speak four languages, I really admire people who have the ability to speak another language other than their mother tongue.  Knowing Simon will soon lose his voice entirely is incredibly sad.

Simon took the time to find someone who would be able to tell his story in his own words. It was imperative to Simon that the voice he used was right for him.  He found a male actor whose voice was described as ‘manly’ and ‘gravelly’.

Watching Simon admit there were things he would soon need to give up, such as driving a car and going to work was a hard watch. Only 15 minutes in I felt I had got to know Simon as a gregarious, fun loving and intelligent individual.  I can’t begin to imagine what it was like for him to realise a time would soon come when he would have to say goodbye to doing the things he loves.  Through no choice of his own.

Simon explaining how he will miss seeing step-daughter Hannah’s 2 children grow up was a point of the documentary that particularly struck a chord with me. Perhaps because I have a child of my own, who I look forward to watching grow and build a life for himself.   I couldn’t stop the tears from falling at this point.

The decision to end his life was made shortly after he received his diagnosis, back in January 2015. At that point he confessed he knew he would either have to kill himself or be euthanized in some way.  A decision I hope neither myself nor any of my loved ones ever have to make.

We hear how less than 1% of MND sufferers will choose assisted dying, opting for palliative care. Simon is vehemently against this, he has instead chosen to go to Switzerland and to ‘pick a date’ in which he will pass away.

Simon’s wife Debbie lost her daughter 2 years previous to Simon’s diagnosis of MND. Chloe died of bone cancer at the tragically young age of 18.   I cannot begin to imagine the pain Debbie has been through, losing her daughter at such a young age.  To know she was dealt with the blow of her husband being diagnosed with a terminal illness 2 years later is nothing short of heart breaking.  Life can be so bitterly cruel sometimes.

Watching Debbie and Simon visit the Euthanasia clinic in July to meet Erika, the woman who has the unenviable task of assessing individuals wishing to have an assisted death was hard. It was hard to watch Debbie come to terms with Simon’s decision, and hard to watch Erika explain in the best possible way, why it’s harder for the loved ones left behind to accept the patient’s decision.

Simon had a date in mind for his assisted dying, it was 2nd November.  This date was also his Birthday.  He was explicit in wanting this date.  Both Debbie and his lovely group of friends felt this was somewhat premature and perhaps at this point I did too.  Beside Simon’s deteriorating speech, as a viewer I was hard pushed to tell he was suffering from such a terrible illness.  He was, however, adamant that if he felt his condition was declining at the speed it appeared to be then 2nd November was the date he would head to Switzerland.

September soon came, my heart slightly sinking as I saw the month flash up on screen. Knowing November was drawing ever closer.  Simon now requires assistance in walking in the form of a stick.  With the help of a notepad and pen, Simon explains he will be having a care worker visit him in the next few days to help him shower and dress.  Humiliation. Helplessness. And above all unmanly are 3 words he writes underneath.  My sadness grows.

Simon looks older, slighter and increasingly more tired. The effects of this horrendous illness have clearly taken their toll over the last couple of months.

Debbie talks about how Simon is now reconsidering his decision to visit Switzerland, with Simon confirming this is the case. Debbie now has a renewed sense of hope.  Watching Simon spend time with family and friends was so incredibly heart-warming, enjoying things he’d enjoyed over the years.  Still with an irrepressible lust for life.

Come October, Simon is now in a wheelchair and while we see footage of him enjoying time with friends and family, Simon writes he is terrified he is now losing his hands. His only method of communicating is diminishing.

Erika explains she has received an e-mail from Debbie informing her that Simon’s need to end his life has now become urgent, he made an attempt to take his own life.

Simon’s friend reading an e-mail from Debbie inviting their loved ones to a farewell party was the part I found most difficult to watch, up until this point. Her words poignant, her strength incredible.

Watching his lovely Mum recall their last moment together brought tears to my eyes. As a Mother you always expect to go before your children, it shouldn’t be the other way around.

Debbie and Simon made their way to Switzerland, accompanied by a couple of their friends. Watching them embark on their journey left me with the most incredibly sad feeling right in the pit of my stomach.

When I decided to watch this documentary, I was strongly of the opinion a person has the right to choose when they die. I didn’t think we should allow ourselves to be so generic when it comes to making this decision.  I didn’t feel it was as simple as saying a rather black and white no.

If I’m honest, my mind changed a couple of times throughout watching this programme. I felt so unbelievably sad for Simon’s loved ones, who were reeling from his decision and at one point so desperate to stop him going through with his plans.  I also felt uncomfortable in the knowledge that ultimately there would be one person responsible for ending another’s life.

Now I’ve found myself back to my original opinion. Who are we to decide that someone cannot make the decision that they’ve had enough of a debilitating and terminal illness?  The MP’s who voted against the assisted dying bill back in September 2015 don’t necessarily know what it’s like to be told they are suffering from a progressive and terminal illness.  They don’t know what it’s like to watch their basic skills amount to nothing over a short period of time.  They can’t begin to imagine how difficult it is to be in a constant world of pain every second of every day.

I believe each individual who has been given the horrific diagnosis of a terminal illness should be assessed on a case by case basis. Very much similar to the process that takes place in Switzerland.

Simon wanted to die with dignity, he wanted to be in control of his life and he wanted to be in control of his death and I, as a viewer and as a person with feelings and opinions can’t disagree with this.

Of course I understand the implications for the people involved in working in an ‘end of life unit’ are huge.  I know it would mean consequential changes in certain laws, however, the thought of people suffering, perhaps against their will, is something that doesn’t feel right to me.

Certain media outlets have condemned the BBC for making and allowing this documentary to be aired. The accusation that they are ‘advertising suicide’ is one I find unsubstantiated, having now watched this documentary.  I don’t agree that it shows terminally ill patients’ lives are worthless as purported.  It tells the story of one man, one incredibly brave, dignified and decisive man, diagnosed with a terminal illness, making the most horrendously difficult decision.

I have nothing but respect and admiration for both him and his wonderful, caring family.

This Post Has 6 Comments

  1. Deborah Maasakkers

    How honest, how sad, all should have the choice of dignity in death, itself never taken lightly, those who Lv them don’t want to let go, but we can Lv enough to do just that, if we can help that happen in a kind caring loving way, it should be allowed, it is the worst thing to say goodbye to someone u Lv, much easier to beg them to stay, but to love enough to respect their wishes is hard, I hope I am never in that position, alth’o I have similar to deal with, I wish u all well, and have happiness in these last times! Just how brave are u all? U must Lv this person beyond words, I hope they know, if not, they must, my thoughts with all xx

  2. Norma wells

    Why should people that don’t know anything about a terminal illness,have the God given right to say you can’t die in a dignified way or not, I bet if they got told they had MND there minds would change then .what really gets me is that animals have it just right , they don’t suffer.Please can these people just think off all the suffering that goes on the pain that you can not bear , so they give you morpine so half the time they are out off it the next so much pain ?…Please please think of these people xx

  3. Simon’s family really did suffer didn’t they, with his diagnosis, and his step daughter dying so young. I worked as a nurse my whole life until I had the children, and did a lot of community palliative care. Doing that kind of work makes me totally believe that people should be given the choice. The amount of people I cared for, who didn’t want to have their families see them disappear right in front of them, or go through the loss of function that MND sufferers in particular, go through. There’s never going to be an easy answer, because I know that at the heart of the debate is that it could be abused by people whose families decide for them, who may not have the capacity to say for themselves that they don’t want it. So it’s left as a blanket ‘no’ for now, but I think it’s definitely something people should have the right to decide, under a stringent assessment. Such a thought provoking post, and thank you so much for linking to the very first #bigpinklink

  4. Laura

    Wow – your experience as a viewer was almost identical to mine! I’ve always been v pro assisted dying (I even did a speech on it for GCSE English Persuasive Writing!) and yet during the first half of this programme I found myself thinking it was too rash, too soon. He was still experiencing lots of joyful moments with his grandson and family so why so keen to get this booked in?

    But clearly he had done his research and knew his own mind as a couple of months on he had really deteriorated and I COMPLETELY understood his desire to go to Basel. When I heard he had tried to take his own life my heart broke for him and his family.

    His wife was AMAZING. Her love and strength shone through – as did that of his wonderful friends and family.

    By the end, I was a complete emotional wreck sobbing my heart out. This documentary was soooooo sensitively and brilliantly portrayed and I’ve been telling EVERYONE about it since. Thanks for reviewing! #bigpinklink

  5. This was heartbreaking to watch! I cried so much. What a horrible thing to have to even consider doing. Like you, I changed my mind countless times during the show about whether I agreed it was right for him or not, and in the end came with the conclusion that ultimately he was just doing what was right for him. Whether I could do it or not, I do know, but you never know until your in that situation do you? It was heartbreaking to watch, and his wife is probably one of the bravest ladies I have ever seen. Powerful piece of television.

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