Unassisted

U

Let’s talk about death, that is unassisted suicide

The meta-analysis below, not surprisingly, shows that if you have MS your chances of suicide are about twice the background rate. The risk is particularly high at diagnosis compared to symptom onset. I suspect this latter is an artificial finding; if you commit suicide before you are diagnosed with MS the code ‘multiple sclerosis’ is unlikely to be recorded alongside suicide as a cause of death. Despite this, it is clear that suicide is a not such an uncommon cause of jumping from EDSS 2.0 or 3.0, at diagnosis,  to EDSS 10 or death.

In my career as an MSologist, I have had two patients commit suicide. Both made me question whether or not we could have done something to prevent their deaths. In both cases, the answer was yes; I could have done much more to manage their associated depression and social isolation. HCPs working in MS need to skilled in recognising depression and suicide risk. One of the reasons why we are running our #ThinkSocial campaign is to address these issues and the social determinants of outcomes in MSers.

It is understandable why MSers resort to suicide. MS is a devastating diagnosis with major consequences for individuals. As it is a brain disease it affects your personality and hence interpersonal relationships. MSers are often anxious and depressed. It has a major impact on your life trajectory.  Most MSers given sufficient time will become disabled and unemployed. The loss of income results in downward social drift, often causing poverty and in some cases severe social isolation. It is not surprising that some MSers turn to suicide as a way out. 

Society doesn’t help. It rates the life of someone with MS who has lost both lower and upper limb function (EDSS>=8.5), who need 24-hour a day care, as having a quality of life worse than death. However, it doesn’t have to be this way. I suspect this negative view of MS will change as a result of earlier diagnosis and treatment of the disease to prevent end-organ damage and its consequences.

We are beginning to see a transformation in outcomes as new cohorts of MSers are being diagnosed earlier and treated effectively. The problem we have is getting the wider MS community to acknowledge that MS as a neurological emergency. When we say ‘Time Matters’ and ‘Time is Brain’ we really mean it. This is why we want to do our #AttackMS trial to try and change attitudes to treating MS.

I am aware talking about death is a taboo, but unless we do how do we expect MSers to take decisions about their treatment seriously. Yes, seriously. I often speak about the Gambler’s dilemma, a cognitive bias that affects both MSers and their HCPs. 

A gambler never goes into a casino to lose money. However, the gambler knows that on average he/she will lose money. The cognitive bias that affects MSers is that they will be the lucky one that will win; they are going to be the lucky one that will turn out to have benign MS. ‘I am going to be the one that ends up with no problems in the future, therefore, I don’t need to be treated’ or ‘ No, that treatment is far too risky for me, I will take my chances with an injectable’. Chances are you will be wrong.

As I have said given sufficient time MS causes disability in the majority of people with MS. Therefore the practices of watchful waiting (a British medical tradition) and/or slow stepwise escalation of treatment comes at a cost to individuals with MS. This is why it is so important to buy into an aggressive treatment goal when you are diagnosed with MS. 

The treatment targets in MS have evolved from simply reducing the frequency of relapses (NEDA-0) to becoming relapse-free (NEDA-1) to having no measurable disease activity (NEDA-3), to preventing end-organ damage (NEDA4 and NEDA-5) to finally maximising brain health to allow you to age normally. 

In the future, we will want to cure you of your MS before any meaningful damage is done to your brain and spinal cord, and we will want to prevent people at risk of MS getting the disease. To achieve these targets we need a much more proactive treatment approach and we also need to manage MS holistically, which includes actively preventing and managing comorbidities and focusing on wellness and lifestyle factors.

The cynics will be poo-pooing my enthusiasm, but if we don’t aim high we will never achieve a world without MS and suicide will remain a problem. 

Let’s talk about death, but focus on what needs to be done to prevent it! 

Shen et al. Association between suicide and multiple sclerosis: An updated meta-analysis. Mult Scler Relat Disord. 2019 Jun 19;34:83-90.

BACKGROUND: Whether multiple sclerosis is associated with a higher rate of suicide remains controversial. Therefore, we aimed to evaluate the risk of suicide in multiple sclerosis patients based on a meta-analysis of previously published data.

METHODS: We searched for studies that measured the suicide risk in multiple sclerosis patients compared with the general population that were published up to 1 December 2018 in PubMed, EMBASE, and Web of Science databases. Sixteen studies fulfilled the eligibility criteria. We performed random-effects meta-analyses to calculate suicide rate ratio (SRR) and 95% confidence intervals (CIs) for patients with multiple sclerosis.

RESULTS: The association between suicide and multiple sclerosis was statistically significant with a pooled SRR 1.72 (95%CI 1.48-1.99, I-squared = 55.0%). Risk of suicide at diagnosis of multiple sclerosis (SRR 2.12, 95% CI 1.84-2.46; I-squared = 4.4%) was higher than the risk of suicide at symptom onset (SRR 1.69; 95% CI 1.43-2.00; I-squared = 0.0%). Gender may exert an influence on the impact of sex on the association between MS multiple sclerosis and suicide, but this requires is controversial and need further studies to demonstrate.

CONCLUSION: Our meta-analysis shows a significant association between suicide and multiple sclerosis, although ethnic and geographical differences were not considered. These findings should be confirmed and extended in future large studies.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

43 comments

  • I am so privileged to live in Australia where the most effective treatments can be administered first line at minimal cost to the user ($41 year 1 for alemtuzumab). I can’t imagine what it’s like to live in a country where these drugs are only made available when they are they effective. Timely diagnosis and access to the most efficacious treatments should be standard of care globally. Maybe then the suicide rate will reduce.

  • What are your thoughts on the offer of anti depressants or anxiety medication by a HCP as part of the follow up after diagnosis?

    • Medicines for depression and anxiety are not only way. Barts offers mindfulness classes. Exercise is as good for mild to moderate depression as some anti depression medication.

      In the news currently it mentions about some antidepressant and bladder medicines and that there is a link between these medications and dementia.

  • Having had a 26y Dx this is something I have given thought to. Not commiting suicide, but the entire concept of choice and control.

    What doesn’t seem to be addressed is that despite best efforts some people will not fare well. If it were me and i was at that stage I’d want to be able to have a dignified exit where I choose the terms, my capacity isn’t eroded so slowly that one day I am deemed incapable of making a rational choice for myself.

    It seems taboo in the UK for the HCPs to even discuss options for end of life. That would be an interesting strand to the debate. Taking one’s own life can be an active choice, when a predetermined threshold has been crossed, and need not be an act of desparation.

  • I have read this blog for years and very much understand the treat early and effectively message and why you (and now others) repeat it almost daily.

    However, it also has the effect of taking hope away from those of us for whom that ship has sailed. Entering our 50s/60s with significant brain atrophy already on our MRIs, every warning for young MSers seems more like a roadmap for those who didn’t have access to aggressive treatment until recently. . The early retirement . The cognitive deficits. The wheelchair. The lost bowel control. The overburdened family.

    Can you blame some people for thinking of an exit plan?

    • 100% agree with your unheard voice that progressive MS is grossly under represented and virtually ignored by MS researchers. This is probably because they have no idea what they are doing or because it is not Pharma supported.

      This study is an absolute waste of resources. “Shockingly” MS has a higher rate than normal population in terms of suicide. Please, Dr. G., go to any textbook in psychiatry that shows any chronic incurable disease accounts for > 5% of all suicides.

      I would guess is that if we did an unethical experiment and took away all the dignity and hope of a “normal” patient by removing their motor, sensory, vision, bowel or urine function or cognition, they too may have higher rates of depression and anxiety and higher rates of suicide.

      2.5 million patients have MS and of those 1 million are wheelchair users. Likely, if MS is one disease that Dr. G. has stated time and again, then many more are on they cusp of progressive MS without the reserve to make up losses. There is no root cause, no neurodegeneration inhibitors, no demyelination and no neurorestoration products anywhere on the horizon thereby removing all hope.

      The disconnect and frustration between the MS researchers and the patients is at an alltime high but hey lets go to Twitter to indoctrinate the newly diagnosed with new hashtags for the failed immunosuppressant only approach.

  • How are you helping to tackle the unacceptable wait and see approach. I’ve missed out on lemtrada because of this approach… I just don’t get how a neuro can gamble w someone’s life given that they see every day that they work the likely trajectory that ms will have. I just don’t get it!!! Can you sense my frustration? Will this lead to legal cases where neuros will be sued because they weren’t given the best treatment available against their will?

    • Re; “How are you helping to tackle the unacceptable wait and see approach. ”

      Research, research, research, …..

      Education, education, education, …..
      Policy, policy, policy, …..
      Blogging, blogging, blogging, …..
      Tweeting, tweeting, tweeting, ……
      Publishing, publishing, publishing, …….
      Campaigning, campaigning, campaigning, …..



      Nudging, nudging, nudging, ….

      • “Research, research, research, …..
        Education, education, education, …..
        Policy, policy, policy, …..
        Blogging, blogging, blogging, …..
        Tweeting, tweeting, tweeting, ……
        Publishing, publishing, publishing, …….
        Campaigning, campaigning, campaigning, …..”

        Try harder..harder..harder…..it’s not working all that well.
        Plus Alemtuzumab just got snatched out of your pocket.

  • Nice post

    https://www.telecinco.es/elprogramadeanarosa/eutanasia-maria-jose-esclerosis-multiple_2_2733180022.html

    https://www.mirror.co.uk/news/uk-news/if-youre-reading-im-already-9427571

    https://multiplesclerosisnewstoday.com/news-posts/2017/03/17/survey-of-people-with-ms-on-physician-assisted-suicide-highlights-need-to-recognize-and-treat-depression/

    Half of the more than 7,500 multiple sclerosis (MS) patients responding to a recent survey revealed they’d consider physician-assisted suicide if they could no longer enjoy anything that made life worth living. In addition, 65 percent of respondents said they’d definitely or probably let a physician terminate their lives if they were suffering unbearable pain.

    http://dwdnsw.org.au/sufferers-cry-i-am-so-sorry-i-have-had-to-end-my-life-this-way/

    https://www.bbc.co.uk/programmes/b09snwmr

    https://elpais.com/sociedad/2018/10/12/actualidad/1539358372_504620.html?fbclid=IwAR2USUVxLuL3qhiVOlFVuWhtv8MIFygZJLnO9S-XlsLCbBGT5sNLpyhZyrU

    EAN 2019

    https://ipp-ean19.netkey.at/index.php?p=recorddetail&rid=a3941237-fed4-4131-8c4e-07859ceefff8&t=browsesessions#ipp-record-4d4b3f67-6da4-4385-8620-2cd6930a901c

    Cause and Age of Mortality in Patients Diagnosed with Multiple Sclerosis

    Pneumonia was the most common cause of death for MS patients and was nearly 5 times more common than among non-MS patients (Figure 2). Cardiovascular death was somewhat elevated among MS patients; cancer death was not elevated.

    https://www.youtube.com/watch?v=1Lay4Ge_Y6A&fbclid=IwAR3Aox63Y5v_qQrsxWL4ziRxx4oUs-asXHTcRMgRRj-KGNHB2vaeWFjBGgQ

    Peace

    Obrigado

  • Medicines for depression and anxiety are not only way. Barts offers mindfulness classes. Exercise is as good for mild to moderate depression as some anti depression medication.

    In the news currently it mentions about some antidepressant and bladder medicines and that there is a link between these medications and dementia.

    • “Medicines for depression and anxiety are not only way. Barts offers mindfulness classes.”

      Sorry…those don’t really work….at all.

      Ketamine”“This is a game changer,” says John Krystal, MD, chief psychiatrist at Yale Medicine and one of the pioneers of ketamine research in the country. The drug works differently than those used previously, he notes, calling ketamine “the anti-medication” medication. “With most medications, like valium, the anti-anxiety effect you get only lasts when it is in your system. When the valium goes away, you can get rebound anxiety. When you take ketamine, it triggers reactions in your cortex that enable brain connections to regrow. It’s the reaction to ketamine, not the presence of ketamine in the body that constitutes its effects,” he says.
      And this is exactly what makes ketamine unique as an antidepressant, says Dr. Krystal.

      “drug triggers glutamate production, which, in a complex, cascading series of events, prompts the brain to form new neural connections. This makes the brain more adaptable and able to create new pathways, and gives patients the opportunity to develop more positive thoughts and behaviors. ”

      Sounds like it might help ms brains more than DMTs.

      https://www.yalemedicine.org/stories/ketamine-depression/
      https://www.google.com/search?client=firefox-b-1-d&channel=cus&q=ketamines+for+depression

      • New research by scientists from the University of Nottingham in the United Kingdom has analyzed the link between a certain class of drugs and the risk of dementia.

        ” Prof. Coupland argues that the “study adds further evidence of the potential risks associated with strong anticholinergic drugs, particularly antidepressants, bladder antimuscarinic drugs, anti-Parkinson’s drugs, and epilepsy drugs.”

        https://www.medicalnewstoday.com/articles/325553.php

      • Well mindfulness and daily exercise have worked for me ! I would rather exercise and participate in mindfulness than take medication that is linked to dementia.

        If it didn’t work for me, then yes I would consider trying other things.

  • Neurologist at diagnosis: We will easily keep you in work for 25 years.
    Liar. Not difficult to find more realistic predictions online. I scored 10 points at your risk assessment a few days ago.

    Nurse at diagnosis: You must embrace the disease, and learn to handle it. By the way, shall we learn to catheterise?
    WTF? That’s not a problem now.

    Nurse at second relapse: Bug off. What did you expect with this diagnosis?

    The permanent solution was duly considered, but luckily I am a fighter….

  • Suicide as a concept / option is so different when you have a devastating disease such as MS or MND. I read this week that a country has legalised assisted suicide for people with terminal disease (life expectancy of under 12 months). In addition to terminal disease assisted suicide is also an option for “MND and advanced MS”.

    I am not too disabled by MS, but I have had two lives pre-MS and post-MS. Without sounding too crude life before was eating the best steak and life after is like eating dog s**t. You loose choices and freedoms you couldn’t comprehend before the diagnosis. You live with a disease that is likely to worsen. You pin your hopes on treatments, take them, and then find out that this vile disease may not have been shut down (smouldering MS, Slowly Expanding Lesions). Many dreams are destroyed because of MS, little dreams like walking your daughter down the aisle in 10-15 years time now have a question mark over them. This blog has highlighted the high incidence of unemployment, divorce, social isolation….. so all in all it’s a vile disease to get your head round. Don’t even get me on the unfairness angle (I was super fit, never smoked and was always out in the sun). Suicide, or the option of suicide gives me an element of control over a disease (impacts of the disease) I have little control over. Suicide is the ultimate DMT – kills MS totally. There is some collateral damage (my life), but the value of my life will be below zero if I ever get to the double incontinent, peg fed, bed ridden stage (I will be out of here well before then). Thanks to my excellent neuro I am stable (thank you Alemtuzumab) and content, but knowing I can end this disease (if it reactivates and caused more disability / losses) lets me sleep well at night.

  • Thanks for all your valiant efforts to find solutions, medical or otherwise, for PwMS and their greater communities, professional and private. I have no doubt you will continue to do this well.

    That said, there is an implicit assumption in your logic, that avoiding death is always the objective, and that it is also the superior selection. This is not surprising since in your profession, medicine, death can viewed as defeat, only to be accepted when all available measures are exhausted. Generally, that is a reasonable expectation.

    As a decades-long PwMS who has done extensive work psychologically, spiritually, and medically, I feel that I have arrived at a place where I can make a thoughtful, informed, and deliberate decision about whether to keep living. I am not planning to end my life soon, but I am also not afraid of that decision, should I make it. I might have a different perspective if I were responsible for young children. Since that is not the case, I am at peace with whatever I ultimately do. I am not afraid of death nor consider it, categorically, as something to be avoided. I simply ask for respect for my wishes should I decide to end my life when its quality falls below an acceptable, to me, level. It will always, again, be a decision made only after informed and thoughtful deliberation.

  • Hi Prof Gavin and as a MS patient who isn’t quite sure what type of MS I have and 3 years from diagnosis, what the disease is currently up to. I completely agree with your views and can relate to how desperate folk feel living with a neurological disease that affects the brain and body. Daily challenges and lack of support that I have come across in my short time with the disease is worrying and in most cases, due to lack of time, healthcare red tape and staff should care more and I mean really care, not a fake put on act that fools no-one!

    I’ve come across a few folk that are quite happy to brush you off or pass you onto to someone else! Is it down to too many patients, not enough time, very little resources, poor management, not enough staff accountability. You are vulnerable when you have a chronic condition and your mental health should be looked after with care, just as much as your physical health. Meds aren’t always the answer, although can help – understanding, recognition from the wider community that the ‘clock is ticking’ and the realisation that time is not on our side. Appointments that are months/years apart – non urgency in preventing and managing comorbidities should become a thing of the past. Touching base when patients are on DMDs to check that they aren’t affected with any unpleasant side effects should also be priority. Time with any health problem can alter the way things go And catching anything early is a win win – for the patient but also HCPs too.

    I also feel your positivity about finding a cure is reassuring and what we patients need to hear. We know it’s not out there yet – but if you guys keep going and doing what you do, we will hopefully hear some great things happening in the not too distant future. A cure is out there – trials and research – thinking differently about the disease works for me! Thanks for caring and here’s to talking about subjects that should be discussed and looked into more with folk with MS. Sadness sets in early as things in life change – if caught again at the early stages, will help and possibly prevent suicidal thoughts. If someone is feeling that low – a genuine caring person can turn these thoughts around and spread positivity- giving them hope and a feeling of knowing someone cares.

    • How far away are we from really finding a cure? 10 years, 20 years? I fear it is much further away than this. Research and drug development takes time and time is what people with MS don’t have. Facing no cure, treatments that are only partially effective (with considerable side effects), and the probability of significant disability, it’s no wonder suicide (assisted or otherwise) is considered a treatment option. My wife is newly diagnosed and we’ve already discussed an exit strategy if things deteriorate beyond hope. At 38 years of age, this isn’t a discussion anyone should be having.

      • ‘At 38 years of age, this isn’t a discussion anyone should be having’

        Quite. Still, wise to do it now as v unlikely to be a cure in my lifetime. I felt that as good as I may be now (relatively speaking) assisted suicide was a discussion I also had to have with my 16y old daughter. My wife and I are on the same page already, for either of us.

        It somehow feels overly melodramatic to talk about one’s own death. It was very difficult conversation to initiate, but now she understands – in a conceptual sense at least – about the cirumstances that would trigger the decision and that I value control whilst I still have it. Surprisingly, she got straight on board with the concept of control of my own life before possibly losing decision making capacity. She also said she wanted to be there if it ever came to it. All quite touching.

        I can’t bear the thought of becoming a non-contributory burden. Next stop is HSCT methinks.

        • ” Next stop is HSCT methinks.”

          Go for it.
          I am 25 days away.
          Talked to 65 y/o ppms who went from 100 ft. walk to 3.7 miles…that sealed it…Not a cure but way more to it than neuros know/admit. They have nothing to give ppms.

  • I agree that the only way that this can change long term is if the strategy of early aggressive treatment is actually as effective as we are pinning out hopes on. Having been fortunate to have escaped ‘dinosaur neurologists’ to have had early, first line alemtuzumab, I dearly hope this is indeed the case. Thank you to this blog for helping inform my decision.

    Despite this, this is little hope for people with MS who have missed out on this opportunity. Also for myself, I don’t know how I will fare with alemtuzumab long term.

    I feel that the only humane alternative to unassisted suicide is assisted suicide. Really, I would prefer to call this euthanasia. This is very different, I feel, to people making an impulsive decision on suicide as a response to a mental illness or life crisis. The government must work to make this a possiblity, with the greatest care and dignity. Everyone with any deteriorating health condition deserves at least the option of this. Indeed, the probability that this will become legal in the UK, I agree with another poster, helps me sleep at night.

    We most of all need a cure for MS. But until there is a proven cure, we also need the option for assisted euthanasia rather than unassisted suicide.

    • Yes…on facebook..there was a ppms who underwent hsct and was a non-responder.
      Failed one and only treatment he could get. Life of continued worsening =No hope…suicide.

  • I’ve only ever thought about suicide once and it had nothing to do with diagnosis or depression. My legs were on fire and I was in so much pain and could not get help anywhere that I thought about it. If I was a patient rushed into hospital with third degree burns, everyone would be running around trying to ease the pain. But in hospital with MS there was nothing and medical staff couldn’t understand what I was feeling – I suspect because there is nothing to see. Burning now down to acceptable level but when it starts to rise, I worry about whether I will be able to handle it if it ever gets back to that level.

    • “But in hospital with MS there was nothing and medical staff couldn’t understand what I was feeling – I suspect because there is nothing to see. ”

      Best post ever…

      If you have stroke…heart attack…burn…or cancer….everyone jumps.
      MS…ALS…ALZ……Diagnose and addios…see you in 4 or 6 months.

  • I’ll return to this blog when there’s something for progressive MS, i.e. neuroprotection, or progress on finding and treating the root of MS – EBV or otherwise. Until then, I have a life to live, albeit with PPMS. Interesting books to read, people to love… There are many ways to suffer and eventually die in this life. MS is but one. And dwelling on the aspects I cannot control or change is masochism.

  • MS or no MS existence is pain and utter misery, as Buddha identified 2500 years ago.
    But tools should chosen properly.
    Tried two times to OD with opioids, failed both times.
    Very unreliable, don’t try it at home! (a non-ms friend tried to OD on opioids, he can now barely move two fingers on right hand, completely paralyzed otherwise)

    • And yep, this is true first attempt was direct consequence of initial confirmed diagnosis (took 4 months to rule out all other possibilities soo plenty of time to read and think)

  • I have my plan in place after my aged dog passes. There is no cure. I am on Day 236 in Australia of Waiting for Urgent Mental Health Care. I am mobile but not far off from having a permanent baby food diet, my digestive system ceases. My Psychosis from the lesions has me hearing talk shows and radio stations, when there is ABSOLUTELY nothing playing. I can not nor will ever be able to earn a liveable income again and have no access to Perminant injury insurance and to access my payment one law firm wanted most of the whole settlement. I am losing vision more and more daily. My teenage son does not need the burden of an embarrassing psychotic and demented mother “leaching off from him”.

    The local MS Society is no support and lost my applications for assistance for months, they sent me to the law firm that would take all of my disability when I was paid it. The really are just a bunch of high hats lining their own pockets and going to great social events.
    I have given away pretty much everything.
    It’s my life and my choice when to stop suffering.

  • I found out something interesting recently that “it is highly likely that one in four medical doctors have a mental illness”. You might think this is nothing to do with MS and this post, but we have to understand that some clinicians looking after us may have more personal insight into mental illness than we assume. Although the clinician may ignore the symptoms due to stigma etc and not seek help.

    But it is important to take into account that being a medical doctor doesn’t make them immune from mental illness.

  • Why choose an extended death after progression on dmt’s for 18 years. Dependence on a paid live in caretaker is prohibitively expensive and less and less “fun”. MS neurologists (from teaching hospitals in NYC and Miami) are unable to offer hope to reverse any the disastrous effects of the disease. The future will be isolation because the legs are gone as is one arm, and incontinentcy is in the near future. Somehow, low blood pressure, strong heart and lungs and no other diseases. Looking at 10 + years of less ability and surviving in a nursing home at a cost of $150,000 a year.

  • I agree!
    But er obs re article!!!
    (apart from that treatments are the b all and end all…. )

    Can we start talking about cure and putting the majority of our
    collective intelligence, energy and research into finding a cure??!!

    A CURE not making it hopefully go away for a bit.
    (Or, if you are ‘unlucky’ destroying you quality of life permanently at the prime of your life – hmm a bit like winning at a Casio funnily enough)

    When did living suddenly become more important than actually being alive?
    (And why isn’t anyone mentioning the antibiotic crisis -er relevant)

    We need a ‘CURE’ not scare mongering articles, debating scenarios that may or may not be tolerable, depending on the individual actually affected, and thus said toleration?

    A fully researched and independent review of 30yrs+ Diagnosed patients regarding quality of life with DMD/without DMD would be an interesting read.

  • Thanks very much for this post. Comforting to know mental health and MS are taken seriously by some.

    My neurologist wouldn’t have a clue whether I was on the brink of suicide as clinic visits are brief and it seems there is never the thought to ask how I’m coping mentally. To have that level of care seems like something out of a fantasy world.

    With a two year old, a four year old alongside a precarious marriage and career, the added uncertainty of MS feels like too much sometimes.

    Your post is comforting. It helps knowing that there is at least some awareness of how hard this is.

By Prof G

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