Tuesday, 30 December 2014

ClinicSpeak: the legacy of Debbie Purdy

Imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide? #ClinicSpeak

"In the UK Debbie Purdy is a household name; she became a MS celebrity for her campaign to decriminalise assisted suicide. Her status in UK society is cemented by the fact that her premature death has been covered by the BBC, Sky News and ITV TV news channels and the Guardian, the Telegraph, the Daily Mail, the Independent and the Mirror newspapers. I am sure many more will have detailed obituaries on Debbie and continue her legacy."

"Although assisted suicide is illegal in the UK it does not stop people travelling to countries where it is legal for help achieving this aim. Prior to Debbie Purdy getting the law changed any family member, or friend, who travelled with someone to be with them when they committed suicide could potentially be charged under British law with murder. The latter is still likely if there are no extenuating circumstances, for example being the recipient of large inheritance would be a potential issue. Debbie Purdy got the law changed; she wanted the option of seeking an assisted suicide abroad and dying with her husband by her side in the knowledge that he would be free of any potential criminal charge on returning to the UK." 

"Debbie Purdy clearly raised the profile of assisted suicide by getting the law changed. There has been an endless debate in the medical community about this issue and the ethical issues it raises for society. At a personal level I have no problem with assisted suicide; I can give you a list of potential scenarios were I may want access to this option for myself. Please note that I only state that 'I may want' access to this option; you can never prejudge how you see things in a particular situation until you are there. As I write this I am acutely aware that in almost all religions assisted suicide is a no go area and I appreciate and respect that perspective. From a professional, or medical perspective, I don't agree with assisted suicide; it is a slippery slope. The dividing line between assisted suicide and euthanasia is a blurred one, particularly if the disease in question, such as multiple sclerosis, affects cognition."

"One of the hardest things I have have done as an MSologist is to prepare medical reports for patients of mine seeking an opinion from Dignitas, the Swiss clinic specialising in assisted suicide. I initially refused to write my first 'Dignitas report' then realised that as the clinician in charge of the particular patient's care it was my duty to write the required medical report. All that Dignitas require is an objective verification of the background medical details. All I do now is write factual reports and state that I am not in a position to make an assessment whether or not the particular patient is of a sound enough mind to make a rational decision about assisted suicide. The latter would need to be done by experts in the field and only after detailed neuropsychological and psychiatric assessments. I assume Dignitas provides this service."

"It is impossible to be a clinician who looks after patients with the primary aim of trying to improve clinical outcomes, and quality of life, to then have to shift into assisted suicide mode to end life. If assisted suicide does become legal in the UK, doctors who take this on would need to be specialists in the area and not part of the teams who look after patients with specific illnesses. In other words patients would need to be referred to a new, an independent, team of healthcare professionals for assisted suicide. Please note the issue of assisted suicide is different from palliative care. Most doctors who are well trained know when to they have lost the battle with an illness and their role becomes palliative; i.e. shifting the focus on making a patient's life comfortable and allowing them to die with dignity in the environment of their choosing."



"What Debbie Purdy did was create the impression in the UK that MS is a terminal illness; it is not. By definition a terminal illness is a disease that has no treatment and leads to death in a short period of time (months). MS has treatments and if MSers are looked after they can expect to have a near normal life expectancy; MS reduces life expectancy by approximately 8-10 years on average. As a result of her celebrity status Debbie Purdy inadvertently became 'the poster child of MS' in the UK. We are continually trying to change that. Imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide?"

29 comments:

  1. Thank you Prof G for this post. I was diagnosed in the 70s as an inpatient at the National Hospital. There was a beautiful lady across the ward in a wheelchair. She could not move and if her head fell forward, someone would have to lift it for her. In the mornings she insisted that the nurses didn't use water on her face and that it was cleansed and moisturised to keep her skin in good condition. Another patient sat on my bed and told me the lady had disseminated sclerosis (MS) and you get like that when you havet that illness. She was unaware of my diagnosis. Also, snother patient came over and said to me I will get better as she did. I was 21 and she was 19. We are still friends today and have managed to have a rewarding life. Not all patients that are locked in want to die and I always see the lady with the beautiful face in my mind when I hear the Dignitas issue. MS isn't easy, but it is not all doom and gloom. I send my condolences to Debbie Purdy's family and I'm very sorry she chose to die in such a way.

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  2. This, with respect, exudes an attitude of "medical professional knows best" and I ask you to consider whether it crosses the line between the professional advice which it is your right and duty to deliver and overriding the patient's wishes.

    If I were diagnosed with MS, which happily I do not suffer from, then I would wish, with my spouse and medical advisors, to consider and then make MY OWN DECISION on a plan for the rest of my life which would enhance my happiness while such was possible and at a time and i circumstances of my own choosing to end that life, rather than hang on for a miserable and demeaning end when if Ihad had enugh the only way would be to starve myself to death.

    This is a matter of fundamental human rights. I have a right to decide my end of life and I have a right to help in doing it. It is, again with respect, not your right as a doctor to tell me what I can and cannot do with my own body. You can advise and I suppose try to have me sectioned if you feel that i am no longer compos mentis, but you are a professional advisor (just like me: I am a lawyer and both doctor and lawyer and honourable callings), nothing more and nothing less.

    it could perhaps be regarded as hypocritical to say that you are in favour of assisted dying for yourself and not to want to have others afforded this, what many people would call the last service a doctor can afford to their patient. And I remind you that what by your opposition you seek for Debbie Purdie is a slow and demeaning process of STARVING HERSELF TO DEATH, rather than help in a dignified, quick and pain free death that she desires.

    Your arguments against changing the law (politically I think this is, happily, almost inevitable so you will just have to put up with it) have I susuepct a touch of religion (in which case you have no right whatsoever to inflict your religious views on the non-religious majority: those who believe in God are free to suffer a nasty end in the hope of reward in the afterlife); and the age old fallacy, the slippery slope. Oddly wnough I have been helping in a minor way over the last two years in another fundamental battle for human rights - marriage for LGBT people. The slippery sope argument was displayed in force there and no-one has yet been found marrying their dog or their fridge!

    Lastly, there is no need for a separate team: death choices surely are part fo the care fo the whole patent and if you were my doctor then in certain circumstances the greatest service you could do me would be to enable me to go quietly and painlessly at a time and in a manner of my own choosing. The alternative would after all be to starve myself to death or to undergo the pain and agony and disrespect that, as has been siad many times before, we would be prosecuted for if we inflicted on a dying animal.

    Please think again.

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    1. Completely agree, thank you for saying this.

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    2. "Please think again"...I suggest you should read again! and then probably again!.

      Whilst ProfG won't be bothered to answer this and he will wish that I don't

      I do not see any mention about arguments against changing the Law and do not see anything that was done to prevent the patients wishes, within the current framework of the law.

      You spout off about human rights to end life......I don't see any discussion here and if the legal profession were so interested in getting change there would be a lot more debate and action on this. It costs hundreds of thousands of pounds training people to save lives, it doesn't to take them.

      I do not see an evangelical moment here and the suggestion of some religious motives in any of the comments seems like some stock reaction to any comment on this subject and is likewise just anti-religious rhetoric and as narrow minded as the claim you are ranting against. I do not see the issue of Lesbian Gay Bisexual Transgender marriage is of any relevance to this subject and am sure there are LGBT readers with MS who will face the dilemma of assisted suicide, you don't clump all human rights issues together and make a cogent argument.

      As to a separate team...maybe you need to think again, would you go to patent lawyer if you were selling a house or a proctologist if you have an issue with your teeth.

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    3. I actually do see the relevance of mentioning LGBT marriage to Harry's comment. Only a few years ago this was not even to be contemplated so it is an example of how things change. Similarly the same will happen with assisted suicide, whether you agree or not. Perhaps it is you that needs to read what he is saying again. Nor do i see anything that constitutes a 'rant' in his post, while, I'm sorry to say, I do in yours.

      And while you may not see discussion on this blog, I see many comments that mention this. Unfortunately this may not be the right place to bring the discussion into the open, Debbie did this through Dignity in Dying, and I will be contacting them soon about involvement. Sadly I don't think many in the medical profession will get involved, so I'm glad there are lawyers that do. Not quite as effective as a doctor in making an argument for assisted suicide from the 'coal face' but helpful none the less.

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    4. I'm pro choice..you presume too much

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    5. I presumed nothing about you, and cannot understand you pro-choice comment or how it relates to what I wrote. But I'm not getting into some useless discussion about this, life is difficult enough with MS :(

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    6. You visibly have a food-problem with this obsession of starving yourself. They are other ways to kill yourself you know (without dignitas (what a name for a clinic that makes money on the death of over people...)). Hanging, stabbing, medicine. Death is full of possibilities.

      The week after I was diagnosed I saw on the Zapping -French TV show- someone with an advanced MS killing himself. As if I was not depressed enough about the diagnosis...

      MSers are much more likely to depression than the normal population (epidemio) and I do not think it is only because of MS symptoms. Did you see the effect DBS on mood (neuros might have seen it)? It can work as an ON/OFF mode. Frightening. In one of these videos you see a person expressing suicidal thoughts when it is ON and stop doing it when it is OFF. I do not need more proof. Why wouldn't it be the case in MS?

      But no worry I am alive and kicking. "L'important n'est pas l'issue mais le combat".

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  3. I'm glad that Debbie is free from this vile disease. Your attitude that MS only clips away 8-10 years of life sums up the MS neuro profession. Debbie was 51 - somewhat short of the 80 years lifespan that most women get. She has been in a wheelchair for 14 years. MS must be terminal as EDSS is death caused by MS. Next time you goon a foreign jolly think what it would be like in an electric wheelchair with no chance of getting better. Debbie was diagnosed 18 years ago - wind forward 18 years and still no treatments for progressive MS. CUPID trial failed, Lamotigine trial failed, Gilenya trial failed. Perhaps if i had the power to clip 8-10 years off an MS researchers lifespan see some progress.

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    1. Thanks for you support, Nice:-).

      Trials failed!...did they?

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  4. Imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide? Aren't you the same neuro who wanted to rebrand MS as a dementia? My 20 year old daughter with MS was shaking after reading that. Better treatments are what are needed. Good luck in 2015.

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    1. Re: "Aren't you the same neuro who wanted to rebrand MS as a dementia?"

      Correction; a preventable dementia. The campaign to rebrand MS a preventable dementia was directed at the EMA and NICE to allow MSers early access to highly-effective DMTs and to get the community aware of the damage MS causes early in the course of the disease. I think MSers with early RRMSers have never had better access to highly-effective treatments; what we now need are safer treatments or trials to de-risk the current ones.

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    2. Unfortunate that this 'rebranding' seems to have only made life more anxious or worse for people with MS. Really this has done this to me, I'm now taking anti-anxiety medication for the first time in my life (and considering when I will need to end things) after reading about brain shredders and looking at pictures of shrivelling brains. I understand what you were trying to do but directing this at NICE and the EMA through a blog aimed at people with MS seems to me to be the wrong way to do this. Great that people with early RRMS have better access but there are many people with long-standing MS that do not or it will be far less effective for, so all it is doing is causing a lot more depression, suicidal feelings and anxiety.

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    3. If we think MSers are the only readers of the blog, they aren't. It is of interest that we have had 20-30,000 less visits in the Christmas period

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    4. "If we think MSers are the only readers of the blog, they aren't. It is of interest that we have had 20-30,000 less visits in the Christmas period"

      No, I don't think anyone thinks this but I did think this blog was aimed primarily at people with MS? As far your stats over Xmas, sure some of this could be because people are checking for work purposes but equally some of this could be down to people with MS being with friends and family over Christmas and wanting a break from information and pictures about "preventable dementia". So for me this does not change the horrific information (and images) posted about this or take away from the fact while this may all help people with early MS, it's not really that applicable to others. Except in that it makes them feel worse.

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    5. A blog for people with MS and their families is what it says on the front page. Perhaps this statement needs to be amended to reflect the none MSer audience.

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  5. Prof G, once again you spin the actualities to your advantage.

    Debbie Purdy had PPMS. She got it young and got worse and worse. Even if Purdy got PPMS in 2014/15, her prospects will be as bleak as they were a generation ago. You are morally and professionally misleading readers by saying: "MS has treatments and if MSers are looked after they can expect to have a near normal life expectancy; MS only clips about 8-10 years off the average life span. PPMS has no effective treatments other than a terrible few symptomatic drugs. PPMS is incurable.

    Debbie Purdy's last interview was aired last night on BBC Yorkshire and it was heart-breaking. She said that the thought of living 30 or so more years in such chronic and horrific pain was too much to endure. She starved herself because she was in pain. You're being heartless in your opining of her and her campaign. She is a British hero.

    Purdy's conveyance of MS caught the attention of the world, whereas your promotion for ineffectual DMTs has caught the attention of no one. This post is shameful.

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  6. Damned if you do, damned if you don't.

    I personally don't agree that the situation in 2015 is the same as in 1995, there will be change.

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    1. You are so out of touch with your readers and the MS community living with this disease, then

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  7. Apologies if this post has come across as being flippant; it wasn't meant to. This post raises important issues, which I take very seriously. I have edited the post. As a professional doctor registered with the GMC I have to abide by the laws of this country.

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    1. You don't come over as flippant, but I believe the frustration of some of the commentators reflects the very variable quality of MS care. You may be unlucky enough to get a poor care team. The first neuro I saw said he 'didn't believe' in giving an MS dx, because it made insurance so hard to get... and he's still practising. (Thankfully I am not one of his patients). Neurology, like mental health, is a neglected specialism. This blog is a light in the darkness.

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    2. Perhaps you are reading after the redacted 'only clips about 8-10 years' off life expectancy. I feel the use of the words 'only' and 'clips' flippant. Very flippant. But it is not death (I'd be quite relieved to live a shorter life, if the trade off was without pain and indignity) but the horrific life-limiting effects people with MS must endure that it a far greater problem for me. I notice the statement about "imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide?" How many individuals do not think this anyway, even just for few weeks or months on diagnosis and I'm pretty sure such thoughts creep back all the time, no matter how positive you try to be. I was diagnosed long before Debbie's image was in the news and that exactly what I imagined. But now I know there are equally horrible things with MS that no one wants to discuss, unless a sentence can end with 'it's all looking positive for the future'. Maybe in a different universe.

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  8. PPMS. This form of MS has no treatments to change its course.
    Most people with PPMS/SPMS are discharged from their neurologists' care.
    Please defend this attitude. How can the NHS and the Neurologists let people with progressive MS become invisible and removed from the lists?
    PPMS/SPMS doesn't count does it? The neurologists have better knowledge and access to pain relief than a GP. However, a GP is all that they have.
    Why are people with MS in palliative care units, unseen and unknown by the neurologists who could have helped?

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  9. "What Debbie Purdy did was create the impression in the UK that MS is a terminal illness; it is not. By definition a terminal illness is a disease that has no treatment and leads to death in a short period of time (months). MS has treatments and if MSers are looked after they can expect to have a near normal life expectancy; MS reduces life expectancy by approximately 8-10 years on average."

    MS may not be a terminal illness if the definition is death within a few months but then neither is ALS by this definition but most information I read it is considered terminal. Cancer is not always a terminal condition, it also depends on the type of cancer and the treatments available. All mention 'end stage' as does MS. What makes MS different? It is life-limiting at the very least.

    Reading this blog, it rather seems to be bi-polar to me. On one hand telling people with MS that treatments are getting better (debatable and far from available to everyone) and at the same time highlighting 'preventable dementia' (I dislike this terminology because once you dig deeper, it may be preventable for 'some' people with early MS but not everyone with early MS and not with long-standing MS).

    I don't have PPMS but I have deep compassion for people with this. And there is no 1) cure or 2) effective treatment. So the only difference appears to be the length of time it takes to death. The mealy-mouth utterings that MS won't kill you, but 'complications' caused by MS is meaningless to someone with PPMS.

    I do have RRMS that is affecting me cognitively and I was told by one -apparently- 'brilliant' consultant neuro-psychiatrist that without doubt (and with no compassion whatsoever), I would develop dementia, based mainly on an MRI and a cognitive assessment when i was relapsing and very stressed. And that nothing could be done to prevent this. This was in 2009, I decided to try to ignore this as I've been told it is not possible to make such a diagnosis but every time the cognitive problems worsen his words come into my mind. Let's not forget the pathetic EDSS, which primarily focusses on lower limb problems not the hidden symptoms that are in my opinion equally as vile. Until these are brought into the light it is too easy for people to assume if you are not walking with a cane or in a wheelchair then MS can't be that bad. People with MS also buy into this, I've observed a tendency to play down the many symptoms and at the same time a desperation to link just about everything including the kitchen sink to why you have MS. I understand why, I understand it gives people some feeling, however fleeting, of control. But a life controlled by thinking 24/7 about MS, is ultimately not a happy life.

    Either way, I think much more should be done to make it clearer about the 'life-limiting' devastating affects of MS, the MS charities are equally as bad always stressing the positive and making it seem that it's not really that bad because it only reduces life expectancy by a mere 8-10 years (usually all years lived in pain and suffering) but for how many people living with MS is there anything positive? So how about rebranding with the full sad life-limiting effects? I'm sure this won't be popular but look up the definition and tell me how MS differs! I completely understand Debbie Purdy's decision, I can think of a few less painful ways but only because I don't have her disabilities that would have made them impossible for her to undertake. So she chose the only path available to her. I'm not convinced the sad demise of her life will make much difference when I read Dr Giovanonni's comments. It is a bit of a dichotomy to be working for a cure, in a vocation about saving lives and at the same time to be presented with the stark reality of MS and the struggle to find funding for research.So again I understand this and why this blog is so 'bi-polar'.

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    1. What makes MS different? Even when someone has Cancer the doctors will tell you what treatment they can give you. Why would a doctor tell you something that may never happen? A dear friend came to me for advice when he was diagnosed. I could only tell him how I managed my illness. He got on with his life and gave his family and friends some happy memories. Sadly he passed away. As you say cancer is not always terminal, but MS does not affect patients in the same way, The truth is no one knows.

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    2. Yep in some ways it is worse, in some ways better. All depends on type of cancer and to some extent early RRMS, which then progresses at a variable speed but still progresses. And I think looking statistically you do know with PPMS. Most definitions of life-limiting illness state this is serious illness (check) that may lead to death (check on the 'may') , or check on reduction in life expectancy, one or both can apply in MS and where there is no reasonable hope of a cure (currently there is no reasonable hope with MS). My contention is, therefore, that it is a life-limiting illness to a greater or lesser extent.

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  10. Debbie didn't get the law changed. She got it clarified. The law hasn't changed in decades. She was campaigning for a change in the law.I think it's perfectly possible both to talk about the worst case scenario in MS and also to make it clear that it's not usually a terminal illness and that many people live long and active lives with the condition. We shouldn't shy away from talking about end of life issues.

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  11. Having MS, is like dying in slow motion. Each day a living death. There is no palliative care. The drugs given to 'relieve symptoms' and 'make people comfortable' are often worse than the disease itself, and do not provide a patient with a meaningful life. That is my lived experience. Give us the option to end our lives quickly and painlessly, with whatever ceremony we choose. PLEASE. Don't like that option? None of your business. Don't choose it for yourself, but let others choose for themselves too. But there must be a choice. Enact dying with dignity laws now, and make dying with dignity a universal human right.

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