I thought it was about time that I talk to you about the Advanced Directive I have formulated in consultation with my wife, my GP, and a number of other consultants in palliative care and ethics. I would also like, for the benefit of others in my position irrespective of their disease, to explain the upsetting route to establishing the manner of my death.
To do this, we must rewind to early August. We had seen a respiratory specialist from the local hospital who identified that the source of my recent headaches was an elevated level of carbon dioxide in my blood. She suggested that we contact a specialist centre to see a consultant with a view to being given a positive pressure ventilator for use during the night. This we did within a matter of days.
We were given an appointment to see the consultant and also the nurse specialist who specialised in respiration and associated equipment. Bizarrely, we saw the nurse specialist first and the consultant second. The nurse specialist having done various tests, including some conducted by a neuro-physiotherapist, selected the most suitable ventilator for me. We then spent the next 15 to 20 minutes fitting and testing the ventilator and the various masks that came with it. We were told how to operate and maintain the ventilator and were advised that this was particularly suitable to a first time user. Every member of staff was polite, very helpful, and clearly experts in their field.
Our appointment with the consultant was equally professional. He explained that using the ventilator overnight would eliminate the headaches and provide a feeling of being energised during the day. He also explained that if we found that the use of a face mask was either too uncomfortable or too obtrusive then he would be willing to offer me an elective tracheostomy.
Here endeth our lesson for the respiratory challenged. Or had it? The weeks progressed and I seemed to take quite well to using the ventilator overnight. Then I started to take a nap in the afternoon. As similar symptoms occurred, having taken advice from a specialist centre, I began using the ventilator for two to four hours in the afternoon. As my condition progressed I began to feel lightheaded, dizzy and short of breath during waking hours. We asked if increased use of the ventilator would reduce my own capacity to breathe, the answer was no. So we began to use the ventilator as I felt I needed. At this point, the air pressure used was very low and used to backup my own chest muscles.
Over the coming weeks, my chest muscles and the secondary neck and shoulder muscles began to fail with alarming speed. We had a number of conversations with the specialist centre which first resulted in an increase in the air pressure, however this seemed to have minimal effect. It was suggested that we graduate to a heavier duty machine with integral battery. At this point I was having to be lifted via a full sling from my chair to the toilet and waiting for the ventilator to be moved and plugged in so then I could do the necessary whilst breathing. We did of course accept the battery powered unit. At this point, we were also advised how to increase the air pressure if we required it. Other than being able to change the pressure, we continued to use the ventilator exactly as we did previously. The days passed and well before our next appointment to see the consultant we found ourselves using the ventilator all day and all night. This is our current position. I can be removed from the ventilator for periods of up to one minute before I become distressed.
You may be wondering when I’ll get to the point. That would be now.
Had I not been ventilated at all, I would have died some months ago. The manner of my death would in all likelihood be like that of my father and his father before him – I would have been under strong painkillers and other drugs, fallen into a coma caused by respiratory failure, and died naturally.
This would have been my preference.
Unfortunately this choice has been removed from me. It has been removed by some of those professionals whose obligation it was to make sure that I was in possession of all of the facts before taking or rejecting their council.
At no time were we advised that the use of a ventilator full time may affect the nature in which I may die, and at no time were we advised that devices such as the Advanced Directive would have to be decided upon, cried over and written at a time which carries enough decisions, enough crying and enough living to be made and done.
For those of you who are in a position such as I, ask questions of your medical team until every single solitary quibble or query you have has been answered. I don’t know whether it will be of any help or not but you are free to have a look at, pilfer or downright pinch the attached copy of my Advanced Directive.
We do not want a single person out there to go through what we had to go through.
Forewarned is forearmed: advance_directive_about_future_medical_treatment
I stand by Neil in every word of this post. At the time this was first published, there was a reaction of disbelief. Even people very close to us suggested that we had been given all the relevant information but had not understood the full consequence of positive pressure ventilation. Neil approached every consultation to do with motor neurone disease with a technical mind. It was one of his coping mechanisms, he wanted to know everything and would not leave without a full understanding.
I too would have preferred that Neil could die peacefully in a coma. The choice had been taken away like everything else. – Louise (2013)
January 8, 2009 at 11:55 pm
Many many thank for bringing your private struggle to our public awareness… our brother a family man is 49 and diagnosed in Feb 08 and is not far behind you on this horrendous journey. Through you three and your families open, frank and honesty page we have discussion topics to help him and us two through. xxxxxxxxxxxxxxxxx
Petena Carroll nee Stewart
January 18, 2009 at 1:00 am
Hi Neil, It’s Petena, one of the Bank House Hotel crowd. One of those people who remembers so vividly you dressing up as a Flowerpot man so so many years ago now! Well I have just found out and was going to send a message of sympathy but have now reconsidered as that would be so patronising having just read your bloggs on this site. All I can say is this is brilliant, this is a lasting memory for those who love and care but also for those on the periferal a wake up call and reminder that life really is what you make it no matter what it throws at you and also there can only be good in actually talking and facing adversity. All I can say is brilliant, thankyou and god bless. Petena xxx