15 June 2011

I just finished listening, or rather watching, Terry Pratchett’s BBC programme, Choosing to Die. I was rather dubious to start with as to whether or not I should watch this programme at all, as it deals with the actual death of Mr Smedley, who took himself to Switzerland to avail himself of the facilities of Dignitas. Mr Smedley was only 62 years old and suffering from the early onset of MND. In fact, the only obvious physical evidence one could observe was that his legs were weakening and he was finding difficulty in getting out of a chair ,although he could still walk with a stick. However, in every other respect he appeared to be normal. Interestingly, it was because there was nothing wrong with his hands or his arms that he was able to lift the glass to his lips and drink the fatal dose. The doctor present said she would not be able to assist him with that particular process. Heaven knows what they do with someone like me who has no use in their hands.

Mr Smedley was clearly an intelligent man who had researched the progress of MND and decided that he did not wish to submit himself to the indignities that the ultimate end would bring, nor was he prepared to become a burden to his family. He very bravely allowed the cameras to record his discussions with the doctors in Switzerland and his final act of drinking the fatal mixture and dying on camera.

Whilst I have every sympathy with Mr Smedley, I really do feel that he took the decision far too early. As all MND sufferers will know the pace at which the disease progresses is different in every case. Only today I was speaking ho has been in the same position for the last 20 years. The MND stopped at his legs. I agree that this is most unusual but as I understand it the disease rarely moves so rapidly that you would lose control to make a decision about assisted suicide (even this unfortunately is not entirely true, as there was apparently a young man in our village in his 20s who died within six months of being diagnosed).

The programme was very well presented, but slightly one-sided. It dealt more with the dignity and sensitivity of someone wishing to die rather than the other individual, the taxi driver who had opted for the hospice route, who appeared in the programme who took the view that it was better to try to live day by day, Carpe Diem, which my readers will know, is my own philosophy. Having said that, quite early on,. I made it clear that when the time came, and the quality of my life had diminished to such a degree that I do not wish to continue then I would try to end things. Just how, at this point in time, I have yet to resolve. What I have done, however, is to make a Living Will which in effect, states that it if I need a tracheotomy and have to be fed through a pipe in my stomach and without either will not recover to my earlier state. then they are not to either invasive intervention but to let me slip away. As I

have said before, I like to taste my champagne not have it pumped in!.

As I said earlier I thought the programmr is extremely well presented, but it almost needs a follow-up programme concentrating more on living with the disease than dying. Much more could have been made of the hospice, the very name of which is an anathema to people like me but probably that’s because we really don’t understand the whole palliative care package that one may receive in such a place. To me the word hospice means, ‘on the way out’ and not too far off at that. I certainly do not want to die amongst a lot of other people in a similar position. I would much rather fade away in the warmth of the sunshine in my own garden sipping a decent glass of champagne.

Going back to the point I made earlier about Mr Smedley, choosing to end his life. far too early. I compare my condition with his. I have now lost use of my legs; my hands are completely useless; I have about 30% use of my arms and my lungs are functioning at around 25% of their normal volume. Yet, I can still derive a great deal of pleasure out of life. As my regular readers will know I try to go to the golf club every Tuesday, if it’s fine, and drive round the course in my wheelchair having a laugh with my chums. I have been to Lord’s, for the cricket three times so far this year and have another five days to go. I went to a wedding in Cornwall recently and enjoying myself immensely. I regularly go to the Cricketers next for lunch with friends.

Of course, one regrets not being able to get up and prance around or having to be fed or having someone to help you have go to the loo and so on. But I can assure my readers. none of that is the end of the world. When my time comes I cannot say but I suspect I will know soon enough. The problem will be gaining the cooperation of my family who are vehemently against assisted suicide, leaving aside the fact that it is illegal in this country at present. However, I have absolutely no doubt that it will become legal within the foreseeable future, but with a lot of strings attached, as indeed there should be/ Whether it will come in time for me not remains to be seen.

Sir Terry ended the programme poignantly remarking that he had probably just left one of the bravest men he had ever met and cast doubt on whether he would be brave enough to drink the fatal dose himself. There is another viewpoint on this that to take your own life in the very early stages of the disease, such as MND long before you are suffering any real discomfort or inconvenience from it could be said to be a cowardly selfish action you would be imposing a great deal of emotional distress on your nearest and dearest long before it was necessary but, having said that, I am a proponent of assisted suicide when the patient themselve feels that their quality-of-life has sunk below what they consider bearable.