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.