If reading about death and MS is too difficult for those of you with the disease, please skip this piece. I do not want to offend or hurt anyone. This is just my view.
Over the past few months, the BartsMS blog has published views on legally assisted dying from two neurologists who specialise in treating those with multiple sclerosis. Prof Giovanonni writes he wants legally assisted suicide in the UK as an option for him and his family, but as a healthcare professional he does not “want to go near it.”
Now comes my turn. I have had MS for the past eight years. Caveat: so far, my MS is relapse-remitting and is fairly mild. Each day I do not have to contend with severe symptoms and pain - knowing there is a good chance tomorrow maybe even worse. That said, MS has brought me despair and depression. It haunts me - and it haunts my future.
I have always supported physician-assisted suicide. But before my MS diagnosis, if you asked me why - I would have mumbled something about individual choice. To be honest, I hadn’t given the subject much thought. Why would I? I was healthy and fairly young.
Then I was diagnosed with MS. Just before my 43rd birthday, I suffered a severe brainstem attack which left me semi-paralysed on my right side and partially blind. As I sat in my hospital bed trying to guide a fork full of shepherds pie into my mouth and watching as it spilt all over my hospital gown - something inside shifted. I suddenly realised my life ahead would very likely include disability.
Physically I recovered from that attack. Emotionally - it took longer. In an attempt to grapple with my diagnosis, I started meeting others with MS - including those with advanced MS. It was then the cruel realities of the disease became apparent: from breathing to bladder struggles, the pain and the reliance on constant care. Would I be able to cope living like this? More importantly, would I want to?
I don’t think I would. This is why I have come to believe, very strongly, there should be a law in the UK which allows medically assisted dying for those with a terminal, incurable disease. Clearly, there is a need. According to Dignitas, one British person every eight days travels to their clinic in Switzerland to die. Nearly 60% are women and the most common reason for pursuing assisted suicide is having a neurological disease (47%).
It is also, to me, a question of equality. A trip to Dignitas or to other suicide centres in Switzerland costs more than £10,000. What happens to those who can not afford it? I think it is wrong that only those who are better-off can choose to die with the help of a doctor.
Finally, it is also a question of quality of life - and death. As readers of this blog know, MS can be a wretched, awful disease. If my MS becomes too severe, I want the choice to be able to die in peace - in my own bed. I also do not want the burden of care to fall onto my partner and my family.
To put it bluntly, I want a good death. Knowing a law was in place to allow a physician to help me - would be a huge relief to me.
I would be very curious to know what others with MS believe on this subject. As I wrote earlier, my view is merely that - just a view. Please let me know what your thoughts are. We are all on an unknown path.
By Rachel Horne (MSer & Journalist)