I make no apologies for discussing death on a MS Blog. MS is a serious disease and the topic needs airing. Did you watch the BBC documentary on assisted suicide with Terry Pratchett? For those of you living the UK, who missed it, you can see it on the BBC iPlayer: Choosing to Die.
Death and assisted suicide in the context of MS a difficult subject to discuss. We are trying to get some data on this issue to guide us with our clinical service development. If you are involved in MS in any way we would appreciate 5 minutes of your time to complete the following survey: end-of-life survey. We promise to publish the headline results of the survey on this blog in the near future. Thank you.
If you don’t have access to BBC iPlayer you may find the The Richard Dimbleby Lecture delivered by Terry Pratchett called “Shaking Hands with Death” in 2010, of interest. It covers similar ground.
CoI: none
I have just finished watching “Terry Pratchett: Choosing to” Die on the BBC i Player. My mind is still absorbing the nature of events depicted. The lucidity of all the patients who chose to die via euthanasia benumbs me. I suppose I am affected by the actuality a young man called Andrew Colgan, who had MS, was one of the people chose to die this way. He was only 42 years old: Pratchett himself describing the sufferer as a “kid”. It was very difficult seeing him decide with such absolute conviction that he wanted to die when he seemed copacetic; living in difficulty but not dire pain. Andrew’s death may have moved me more so because unlike Peter Smedley (the 71 year old man with motor neuron disease), the former was much younger – a man who should have a right to a live out a life of quality. Ultimately, Andrew’s decision to die moved me because I too have progressive MS and will only get worse, not better.One can say MS is not a terminal illness but it remains a disease that robs you of basic faculties. It remains a disease that the greatest minds in the world seem bemused on how to best control. More than anything, I felt a deep sense of shame that doctors and scientists haven’t figured out a way of stopping MS from becoming a disease that ultimately reduces you to a figure of your former self. 80% of people with RRMS will become progressive. That’s a fact and that’s a massive number. When they do become progressive then medical science will go on the back foot and at that point sufferers will merely become individuals living in hope, denying that no one can do anything to stop them from getting worse.My philosophy has always been to choose life. My aim is to fight this disease for as long as I can and to the best of my ability. Nevertheless, progressive MS is a condition that remains unpredictable and beyond control. I don’t like the thought of dying in discomfort but I also don’t like the idea of having to die before my time. I don’t like the fact that there is so much research into progressive MS happening yet there is so little to show for it. What keeps me going is the thought that something may improve my situation, or at least ease the decline. What keeps me going is that I haven’t lost faith in myself and hope for the future.
I support an individual’s right to die with dignity if they chose to do so, but my concern is what legalised suicide may mean for MS sufferers like us. Diseases like Alzheimer's and Parkinson’s disease are incurable, as is MS. With the British economy in a crisis that may change our world standing forever, who is to say that Parliament won’t legislate to permit assisted suicides for people like us as means of reducing the drain on public finances. Of course they will never phrase it as such and will claim they are doing it on humanitarian grounds, but it would not surprise me if the economy lingers in the doldrums for much longer then such policies being approved by the Government. It’s a cause and effect situation. Looking after an aging population with costly illnesses affects the bottom line and it’s a reality that is getting much worse. You cannot afford to be in ill health in modern Britain.
Oh god, this documentary has left me depressed. Wish I hadn't seen it now. Scares me to think that my MS, that I cope pretty well with, may one day get the best of me and have me wanting to die. Find a cure fast prof g, or at least something to make it less worse.
Not doubting your devotion to the cause, but Neurology as a specialty should hang its head in shame. As ever, two of the worse diseases (even my GP told me that he would end it ASAP if he got MND) and progressive MS fall to Neurology. Given that its neurology, it's a given that they'll be no treatment e.g. for NMD or very limited treatments e.g. MS. The common features of thyese diseases is that they destroy your dreams and your future. No amount of cognitivie behavioural therapy or counselling can prepare a human being for the hell that is NMD or progressive MS. And neurology also presents very little hope. Campath for RRMS patients may prevent progressive disease, but we need to wait 15-20 years to find out! For progressive MS that's needed? A treatment that stops progression – simple as that! And then guys / females like 42 year old Andrew would see a reason to live. I imagine like many with progressive disease he was told by his neuro to go home and cope as best he could! If the medics can transplant a face, a hand, liver etc etc.. why on earth can't they stop a brain disintegrating! I like to see a five year plan for addressing progressive disease with delivery at the end of five years of an effective treatment. The folwoign five years should see a further five year plan focused on repair. For too long there has been a promise of better treatments etc ('stop MS', 'end MS'), but they always ten years away. See Monday's programme has highlighted the lack progress made over the last 50 years with regard to progressive MS and NMD. Ditch the mouse model, ditch the obsession with safety (MND usually kills within 2-4 years), move away from research into RRMS (we've got effective treatments on the horizon). I'd hate to think by 2020, we are no further advanced in treating such vile diseases as NMD and progressive MS. I dread to think how many people like Andrew are out there – no hope, don't see a reason to continue.
I too was left very upset by the programme. My aunt has primary progressive ms and I love her so much that I can't stand the thought of her wanting to die. I hate the fact that she's getting worse and no one does anything. If only they could take the cells from my body and give it her to maker her well again. The worst things in life always happen to the best people. Doctors should be ashamed for not doing more. I pray you figure a way to stop this disease from getting worse. MS is pure evil.
I note this posting has become very controversial. I suspected it would. I raised the issue for two reasons: (1) MS is a bad disease; we need to continuously remind ourselves of this. This is our motivation for trying to pin down the cause of MS so that we can prevent and cure people of the disease. (2) We need to realise that PwMS and their loved ones have varying perspectives on the issue of dying. We as clinicians have to try and accommodate all comers and not let any pre-conceived prejudices or values systems affect the way we manage people with MS. We need your help to get this right. Please complete the survey if you have not. I don't disagree with assisted suicide on religious grounds; I do however on a personal level. It is hard to be doctor looking after PwMS trying your damnedest to improve their lives and then having to assist them with their suicide when they ask for it. It not possible to reconcile these two world views.If is assisted suicide is ever legalised in the UK, as it is in The Netherlands and Switzerland, a different group of doctors will need to take over once a person has decided to take that route. Assisted suicide is a slippery slope; I sincerely hope I never have to walk the slope.
I am not going to watch this documentary.
Re "I am not going to watch this documentary": A real positive about the delivery of asynchronous information is that it allows you say no.