Although we have covered assisted dying or assisted suicide many times before on this blog some of you may have found the recent perspective in the New England journal of Medicine an interesting read. I certainly did.
This is clearly very topical as this week’s Economist has an article on the same issue:
Assisted suicide. Over my dead body Helping the terminally ill to die, once taboo, is gaining acceptance. The Economist Oct 20th 2012
……The prospect of the loss of autonomy, of dignity and of the ability to enjoy life are the main reasons cited by those wanting assisted suicide. Having the option of assisted suicide means that terminally ill people can wait before choosing to end their lives. That may have been what happened to Gloria Taylor, a Canadian assisted-suicide campaigner with Lou Gehrig’s disease (a degenerative illness). After winning a landmark court case four months ago that gave her a “personal exemption” to seek a doctor’s help to commit suicide at the time of her choosing, she died earlier this month—from natural causes……
Read More!
On a personal level what do you do if an MSers with advanced MS asks you to write a medical report so that he/she has the option of attending Dignitas, the legal clinic in switzerland for assisted suicide? This is a very difficult question. I believe you can’t be judgemental and have to be supportive as possible. You cannot impose your worldwide view on someone else.Our primary role as doctors is to relieve suffering and not necessarily to presevre life. The modern Hippocratic oath captures the essence of this very well
Multiple Sclerosis Research: Redefining physicians’ role in assisted 13 Jul 2012
Multiple Sclerosis Research: Assisted suicide: regulatory issues
22 Feb 2012
Multiple Sclerosis Research: Hippocratic Oath
11 Oct 2011
Multiple Sclerosis Research: Results of the Assisted Suicide Survey
01 Jul 2011
Author defends film of assisted dying as BBC fields complaints15 Jun 2011
Multiple Sclerosis Research: Suicide attempts in multiple sclerosis
27 Apr 2011
Oct 21 Anon saidIn yesterday's Times, there was a small article about a woman (age 74 who had starved her self to death / refused food). The article said that she could not move, see…. The article did not suggest she was assisted, but demonstrated how grim this disease gets. I think that suicide (asssisted or not) is the greatest gift we have. The only real control when faced with the consequences of advanced MS. You say that your "primary role as doctors is to relieve suffering". MS is disease of suffering – mentally and physically. You (the doctors) are diagnosing patients(in their 20s / 30s) and they know they will be ill for the rest of their lives and will see (eventually) themselves getting progressively worse. Every dream they had will be affected in some way. It's the (evential) progressive nature of the disease that makes it so bad. You have to give up more and more as the years go by – eventually our dignity….. 21 Oct Anon said: The comment above is well realised and argued. Most of us are relatively young and enduring a condition that remains conclusively incurable, in many cases, woefully untreatable. An octogenarian who, for example, has developed cancer on top of their Alzheimer’s, is a very different case from a 34-year-old with, for argument’s sake, rapidly aggressive and progressive MS. For the NHS to defend the former’s right for life is weaker than the latter. For young people with conditions like MS, the onus should be on treatment, not death. Exhaust every available option, but don’t turn to assisted suicide. If a young person chooses assisted dying then you as professionals have failed them. You have given them nothing to hope for, no promise that their degenerative disease may be slowed with emerging therapies. At this moment in time your focus should be convincing MSers to hold on, telling them about the potential medicines that are within grasp. But then again, maybe there is no hope21 Oct Gavi Giovannoni saidVery poignant comment! Thanks. Several things: "… less talking shops / theory and more on getting trials underway." Are you suggesting we close down the blog? We are on the case re trials; however, engaging the community is important so that you understand why we do what we do and to make sure you are willing to volunteer for progressive trials that involve LPs. "… This re-enforced my promise to myself to get out when I reach 7 on the EDSS…" Your expectations change with time; I have seen it over and over again. Don't prejudge what your perspective will be when you are EDSS 7; you may surprise yourself. I would, however, recommend that you discuss with your family and neurology team the possibility of an putting an advanced directive in place. Oct 22 Tony Fonda SaidAnon 11:14:00 Total respect, but why 7 ? (not 6.5 or 8)? Will the 7 be self diagnosed/assessed or will you rely on a neuro's? Will you seek a second opinion? Have you put your house in order already (figure of speech)? Have you tried stem cells? I totally understand your line of thoughts. My EDSS is way less than 7 currently – but why shall I wait until 7 ? Is life about quality or quantity? Why not ending it now and avoid all the hassle that comes with it…with a near certainty of deterioration. I am no suicidal but care to stretch the way you look at 7 and try to understand further how you see things
Oct 21 Anon said"You (the doctors) are diagnosing patients(in their 20s / 30s) and they know they will be ill for the rest of their lives and will see (eventually) themselves getting progressively worse. Every dream they had will be affected in some way." No. They MAY be ill for the rest of their lives and MAY see themselves getting progressively worse. SOME dreams they had MAY be affected. "I recall at one of our Research Days that doctor showing a picture of a patient with an EDSS score of 9/9.5." It is extremely rare to see EDSS of 9 and 9.5. Only a small minority will, tragically, reach such extremes. To view the disease in that light is akin to viewing cancer as the most aggressive, terminal variant rather than as a disease with a huge spectrum of outcomes. "The really sad thing, is that if someone could say "it won't get any worse", you can adapt / accept etc. This happens with those who looses limbs etc. You can never adapt / adjust when there's no end to the worsening."
I cryed your right you can't adjust to this it keeps getting worse. I have Ms and I wish I had a way out when it gets to a point I can't take care of myself.
Oct 22 Anon saidlet's leave neuro-ethics to someone else and focus on real science. This blog will (yet again) loose its essence and focus if it wants to cover all topics (CCSVI, suicide, herbs…) A shame as this is my favourite source of info. Focus, focus, focus. Real science only please Oct 22 Anon said 'Real science only' will be too much
Oct 23 Anon said. We all have different views on this – no one is right or wrong. To me disability is evil – it can impact on my independence, dignity, relationships. I had a great life (MS came along in my late 30s). I'm not satisified with being an observer of life, sitting on the sidelines, picking up scraps and being thankful. MS is the enemy and is having it's fun. Knowing I can limit how much fun it has keeps me going. I said above that at EDSS 7 I'm out of here. Everyone is different. I went to a course once where the term 'learn to embrace disability' came up. I knew that would never be me – you have to be honest with yourself. I'm glad you are making the most of it. My personality jus doesn't work that way. Best wishesOct 23 Andy Clark saidWell as you said Prof G, it's all about the individual, what do you do when asked to give the 'go ahead' for someone to end their life ? ,or suffering ? as would be the case. I think the last part of that sentence is the crucial point , to end someone's suffering, because I think it would be hard for anyone to understand that it's not the life they would want to end, but the suffering. The whole subject is a 'can of worms' Does Youthanasia end a person's stress or add to it? is it the green light to be able to end your life on your terms with dignity ? or is it a death sentence hanging over you with hard pressed carers hovering with the forms waiting to be signed ? An emotive , emotional and heart wrenching debate you would be hard pushed to equal, as to where this fits in with MS? well again it's an individual story, MS is so varied with symptoms to match. As for some of the comments above, I guess people can only tell it like it is or from where they are, it's all relative
Oct 23 Anon saidWhen I read some of the comments my heart sinks. The notion that one would rather choose death over a lifetime of disability is sad. Agreed, severe disability is scary but there are people living with such complications. Look at Stephen Hawking. Look at Debbie Purdy (for all her death wishes, the woman is still enjoying her life). I am of the belief that assisted dying will become a British, legislated, reality. The economics of long term degenerative diseases will, eventually, break the camel's back. Many people with MS and other diseases of the brain will opt for this. Many people that suddenly become disabled through illnesses and accidents will also go for this. The idea that you're better off dead than in a wheelchair may become a more commen viewpoint. Those with illnesses like progressive MS may begin to feel wrong for choosing life over an easy way out. It may be that assisted dying will alter Britain for the worse. It seems the Paralympics did little to better our Oct 24 Anon saidI have the same concern about 'may begin to feel wrong for choosing life'. The NEJM article says it hasn't happened in Oregon but i find that hard to believe. Or it may be because Oregon is unusually prosperous and liberal
Oct 23 Anon saidHow about discussing euthanasia with severe cases of MS who come to the clinic only? Those are the ones who will perhaps need to contemplate it eventually, no? It's the same as with any progression-related MS-stuff – you don't discuss wheelchair types with someone who can run ten miles do you? This blog is, in my opinion, the wrong forum to discuss death unless the topic was brought up because of Halloween…. We are all the wrong clientele unless you can prove that one can go from EDSS 2 to EDSS 9 or 10 in a decade despite being RRMS and on effective drugs – in that case bring the topic up every week because we're all doomed then. on How about discussing euthanasia with severe cases of MS who come to the clinic only? Those are the ones who will perhaps need to contemplate it eventually, no? It's the same as with any progression-related MS-stuff – you don't discuss wheelchair types with someone who can run ten miles do you? This blog is, in my opinion, the wrong forum to discuss death unless the topic was brought up because of Halloween…. We are all the wrong clientele unless you can prove that one can go from EDSS 2 to EDSS 9 or 10 in a decade despite being RRMS and on effective drugs – in that case bring the topic up every week because we're all doomed then. Oct 24 Anon saidNo! Imagine if your doctor said 'Your EDSS jumped from 7 to 8 last year. What do you think of euthanasia?' A clinic is the wrong place for a doctor to bring up the topic. I'm not sure if the topic should be on this blog either Oct 24. Tony Fonda said. Very well said. I agree with both of: Anonymous Monday, October 22, 2012 10:45:00 AM and Anonymous Tuesday, October 23, 2012 5:25:00 PM Let's only focus on real science and real therapies. Everything else is cheap populism and pure noise. Quality – not quantity
Oct 24 Anon said:No! Imagine if your doctor said 'Your EDSS jumped from 7 to 8 last year. What do you think of euthanasia?' A clinic is the wrong place for a doctor to bring up the topic. I'm not sure if the topic should be on this blog
Oct 24 Andy Clarke saidForgive me if I don't agree, "we are all the wrong clientele ? I'm afraid not everyone fits this criteria and I can confirm it is possible to go from 2 to at least 8 on the EDSS in a decade. This blog should be open to all levels of MS and imho be able to freely discuss any related MS subject. Thanks to Prof G for being bold enough to raise the issue