Hi everybody, you may remember a few days ago I was talking to you about the joyous tasks we have been having to perform. Things like the preparation of my Advanced Directive.
To the benefit of anyone who may find themselves in my position, I hope therefore this applies to very few, I would like to explain where I found myself just a few days ago.
The original Advanced Directive was prepared in the presence of Louise, my brother Matthew, my mum Lynne and my GP. The document confirms my request that when I become unable to speak or swallow, I wish to have the mask-type positive pressure ventilation I am currently using removed. It also confirms my wish not to be resuscitated under any circumstances from the date of the Directive. My GP retained a copy of the Directive for their review.
Everyone at that meeting understood that this course of action would lead to the least possible amount of distress and would without doubt be in my best interest.
A point of note regarding the current ventilation arrangement is that the mask is removed a number of times during the course of the day for cleaning purposes, dressing, bathing and mask maintenance. These tasks are done by various family members as well as the professional care team. Ventilation is reinstated as quickly as possible to minimise discomfort.
Since then a debate has arisen as to whether or not my request to have my ventilation removed would result in the law being broken.
As a result and until the position is clarified, my Advanced Directive has been amended to state that in the event of the loss of speech or ability to swallow, then I refuse nutrition and water by any means. Each of the options have the same end, but the latter will take considerably longer to reach the desired outcome and will be incredibly distressing for family and friends to witness.
As this discussion is ongoing I can not go into any more detail but I will keep you informed as to any further developments. In the meantime, I would be very interested to hear your thoughts and opinions on the above so please let me know.
This is a difficult one to write about. We were very angry. Neil and I both maintained (and myself to this day) that this consequence was not fully explained to us when we first took the ventilator. Neil elaborates on our understanding of the information given in a later post, so I won't go into it here myself, as his words are far more important than mine, but I will say how it affected us.
I can still not decide, had we understood the true consequence, whether I would have wanted him to start on ventilation. There’s no doubt it gave him an extra few months, he saw his son's first birthday, heard his first proper words, watched him learn to walk, and saw him open his presents on Christmas morning. But it took away his natural ability to die peacefully in his sleep, the consequence of which created the horror of choosing when and how to die himself.
There were some mornings I hated waking him from sleep, hated watching him come round to consciousness and have the realisation that none of it was a nightmare, the ever present repetitive sound in his ear was the sound of the machine keeping him alive in a torturous state of physical pain and helplessness.
He could only watch Oscar fall as he learned to walk, he couldn't run to catch him. He could only watch Oscar's tears, he could not wipe them away and cuddle him better. His skin had become
so sensitive that when I sat Oscar on his knee and held his hand up to stroke the soft baby hair, he cried and said it felt like rough straw in his hands. The tears he cried himself rolled down his cheeks and waited for someone else's hand to take them away. He couldn't put his arms around me to comfort me and tell me that Oscar and I would be OK, he could only ask me to lift his arm and wrap it around my shoulder.
Sleep had given him a few precious hours away from all this.
The ventilator had backed him into a corner where he would have to draw his own line in the sand and say, 'I want to go now, I want to leave you all.' It turned his time of death into a choice and, it would now seem that even to die peacefully in his sleep at the end of all this pain and suffering was yet another mercy he was not to be allowed.
You would think this cruel enough and not possible to add to the stress of the situation, and yet, there was more cruelty to come.
The Advance Directive is a legal document, designed to give the patient a say in his/her treatment at the time of death. Neil had decided that for him the point at which life would no longer be worth living was at the loss of speech and swallow. He couldn't go on if he were just a body in a chair blinking his eyes for communication. He chose to die by having his ventilation removed. This, we understood, could be done in a controlled manner with the right balance of drugs to cause the least distress and would be as close as possible to slipping away in his sleep.
The day Neil wrote this post was the start of many weeks of worry about that end. Even in this horrible cruel and degrading end he was not to have his choice of how to die. The next best choice was to have nutrition withheld and watch him starve to death. As Neil said, this would have taken considerably longer and caused a great deal more stress for himself and all around him. Not only that, but due to the nature of the reply from the GP's legal advisor, it gave us the added worry that every time I changed his mask for cleaning, it was deemed as 'removing his ventilation' and should anything happen to him whilst doing so, I could be prosecuted.
None of this horror was the fault of our GP, nor was it the fault of the legal advisor... as Neil says, the law is as clear as mud.
I'm not comfortable being outspoken on this subject, I'm not a medical expert nor an expert in law, all I can speak about is how the lack of clarity affected my own family at that particular point in time. I'm not saying that ventilation is a bad thing, it was lack of clarity that caused the messiness here.
I discussed the issue with Neil before he died and he said he still would have chosen to have the extra months with us, despite the difficulties.
Remarkably Neil did have one very precious thing left, he had his sense of humour. – Louise (2013)
November 3, 2008 at 3:45 pm
Neil, Louise and Oscar,
Once again, your words, Neil, leave me choked. Sometimes I really don’t know whether to laugh or cry but am always trying desperately hard to hold the tears back when reading/thinking about you all and what you’re going thro’.
After all this time trying to arrange to come up, I was gutted that everyone was sick the other week but understood completely the need to stay way and give you guys peace that weekend. Hope everyone is on the mend. I do hope to visit soon, if ok with everyone.
I just wanted to say, that regarding earlier posts re: media attention etc. etc. I have recently got in touch thro’ Facebook with an old school friend, who works for a drugs company. I have yet to establish who he works for and what he does exactly, however, I e-mailed him a brief summary of your plight and what you’re trying to do, with a view that if he couldn’t help, maybe he would have contacts that could add some input somehow. I’ll keep you posted.
Once again mate, your inner strength is astounding and its great to read the same old Neil coming across in the posts. I don’t know how you do it. It is also great to hear of the support network you have around you.
Best Wishes, Pete.
Lisa & Richard Stefanski
November 3, 2008 at 4:46 pm
…What a pain in the arse! I suspect you are feeling pretty pissed off with all this. I am not sure if this will be of any help…at work we have something called the Liverpool Care Pathway which is basically a plan of care for those patients who are dying. It allows treatment to be withdrawn but provides continuing pain relief which nursing staff can administer. Oxygen therapy can be given for comfort. I don’t know if this can be applied or adapted to your current dilema, but it is worth looking into.
On a lighter note, we want to wish you both a happy anniversary!
Please forgive me, but I can’t quite remember the date…
Take care Neil, Lots of Love Lula x
November 4, 2008 at 11:27 am
You continue to be a beacon for us all. Your grit and bravery is
astonishing- but you bugger, probably as expected to anyone who has
met you and known you for any length of time! The decisions you are having to make cannot be easy, but I know your amazing circle of family and friends are around to support you in every way in this difficult time.
I remember some time after your Dad died from MND I was most flattered when you started to use the term ‘Dad’ to me every time I saw you (probably in deference to my great age) and it usually went something like: “Hello dad you old bastard” or a similar profanity! So of course I was aware of MND- but perhaps not fully.
Initially your Dad dying and now your own illness has really opened my eyes to the awful consequences and realities of MND and I’m sure it has done the same thing to dozens of your friends.
(I have just emailed you an article on an MND lithium treatment that I read about on the BBC website today)
I think what you and your wonderful Wife,family and friends have done(perhaps because we know you and Louise are so strong) is given a great awareness of MND to lots of people who were perhaps unaware, and also you have enlightened people to the practicalities and ‘horrors’ of this awful disease in a way that perhaps no one else could have.
So you young bugger I will call that it for now -Jane and I wish you the best and send all our love-we hope to come see you very soon.
Bryce and Jane xxx
November 4, 2008 at 3:05 pm
I am reading the blog and trying to spread the word on MND (of which my Gran died incidentally). Your bravery and humour are absolutely inspiring.
I met Rosie and Douglas over the weekend (at Sara’s 30th) and we had a brief discussion about the advanced directive. As you say, your position will hopefully apply to very few. I suppose that your GP will worry about the effect of actively doing something (removing the mask) on the occurence of an anticipated event as opposed to doing nothing and letting nature take its course. The former puts him (or whoever were to remove the mask) at risk presumably of prosecution.
It seems to me that to refuse your wish (properly given, in writing, in the presence of your GP and without any pressure) is to deny your fundamental rights as a human. There is, of course, the risk of abuse of any legal right to intervene in someone’s medical care to speed their demise. But surely a framework could be prepared with hopefully cast iron safeguards to allow it.
It is a very difficult issue but these are my views for what they are worth. Your situation has made me think about such things for the first time. I hope you do not mind my writing in this way. I understand that you are keen to spark debate and help others who might find themselves in your position.
November 5, 2008 at 3:11 pm
Rosie has been filling us in on these developments – what a pain in the arse! It is pretty damn obvious what the preferred option is for you and Louise and for everyone else who cares for and loves you very very much. All I can say is that I hope this gets sorted out soon. It just seems ridiculous that you are having to deal with this at this time on top of everything else.
Please let us know if there is anything we can do or if there is anything that you would like us to find out for you before we come down next weekend – Douglas has quite a few lawyer friends who would be more than willing to offer advice.
As always we our thinking of you all the time and sending our love every day – I only wish that we were closer in order to help out more.
I hope you guys have a wonderful anniversary tomorrow – I will be thinking about you.
love love love,
Sara x x
P.S. We were thinking that a really good way to raise awareness and to raise some funds would be to hold a mammoth charity gig – we were planning for next summer but we may have to postpone it for a year due to our change in circumstances!! Will keep you posted x
November 6, 2008 at 3:20 pm
Hi I’m not sure if it’s correct for me to write on here but sod it . . . I would like to wish you both a Happy Anniversary and im thinking of you both , just because your out of sight your no out of mind, take care and I hope to see you both soon.
Susan Bell (marie curie) xx
November 7, 2008 at 12:14 pm
Happy Anniversary for yesterday Lou and Neil; like the other correspondents here we share your frustration and hope the mud gets cleared very soon.. I too am thinking about more fundraising/raising awareness plans.. Love you,
Sas, Mike and Megan X
My heart goes out to you , but also my sincere thanks , as I know that my Advance Directive will be honoured and not leave the family having to go through the distress you suffered.