I have been giving a lot of thought as to why so many neurologists and their teams are seemingly so risk-averse when it comes to medicating MS hard and early to prevent as much long-term damage as possible. I have come to the conclusion that it is all about risk perception and the inability/unwillingness to do three things –
1: to separate out overall risk into present and future.
2: to manage what must be very difficult but necessary conversations
3: to shake the doctor/nurse knows best mindset
My hypothesis is that there is a large element of the reluctance/inability to engage with these points is that they are related to dealing with death in care. If you’re a trauma surgeon or an oncologist, for example, you and your team will need to navigate death, you cannot swerve involvement. But if you’re an MS neurologist/nurse, it’s unlikely that you have to deal with reasonably regular death in care scenarios. And why would you use a drug that may cause death in any way shape or form? To you, the risks seem quite imbalanced.
Why is this important? Because in many specialities the doctor needs to make an on-the-spot decision that may pay off or may hasten death. It is a risk/reward calculation that is a serious one, but quite common. It can go either way. Sometimes it pays off and others not so much. As long as they can look themselves in the mirror and know that to the best of their ability they acted in the interest of the patient – stopping them from dying now and enabling them to get the most out of their remaining life. The potential for death as a direct result of a medical intervention that they initiate is there in a way that it simply isn’t in MS neurology and I don’t think that many MS neurologists are that comfortable stepping into that space, causing an internal brake, behavioural limiting factor, fear: call it what you will. This scenario is all about the doctor though, not the patient.
Progressions in science mean there are now c. 20 Disease Modifying Therapies to treat the disease (some particularly effective therapies having been discovered and as we all know greater reward is usually accompanied by greater risk). The thing that has not kept pace with all the changes in MS therapy options is many medical professionals’ willingness and/or ability to update their approach to reflect the new landscape. So much of the decision-making and risk-taking in MS seems to be about the now, and that is where everything falls down. MS isn’t a broken arm, MS is a nasty disease that never goes away, a disease that usually saves its worst until later – until it is too late to do anything meaningful and by then whoever is treating the patient can only react to symptoms and not do anything meaningful to halt/mitigate progression.
In 1994 no one explained the implications of my diagnosis to me yet everyone I told wanted to know what it meant. I ended up learning to explain to people that having MS meant that it was likely that my outcomes would roughly be based on odds of 10% good, 10% bad and 80% somewhere in between. A standard distribution curve scenario. I emphasised that progress was only ever one way and where one started and how fast one progressed was in the lap of the gods. Best case is great. Best case is easy. Best case is being in the 10% that are very lightly affected. Although, the other end of the same distribution curve is the 1 in 10 who will really suffer. 10%. 1 in 10 people will have dreadful outcomes. That leaves 8/10 who will have varying degrees of difficulty. 80%. 8 out of every 10 people who receive an MS diagnosis will suffer irreversible disability as a result of the disease. Patients need to know this in order to fully appreciate the consequences of the decisions they make regarding medication, to be able to balance risks as they pertain to their disease course, not just their disease now. Medical professionals need to lead this discussion.
I know of one neurologist who tells me they make a specific point about having this hard conversation with their patients. They do it because they want the patient to understand just how screwed up they are likely to be in the future if they fail to choose an effective drug now. This is Induction therapy, the so-called flipping the pyramid approach. It is not about scaring the patient into a course of action that is unnecessarily risky. Data shows that the sooner a patient is started on a high-efficacy therapy then the better their long-term outcomes are. I can’t think of anyone who’d choose to embrace physical disability in the future if they could do something about it now.
It is the most staggeringly patronising thing a doctor/nurse can do, thinking that they know better than their patient regarding risks the patient is willing to take. The medical professionals’ job is to explain best and worst-case scenarios honestly. At the point of diagnosis, or early on in the disease, it is impossible to give a reliable indication of how things will turn out (Hope for the best plan for the worst, fix the roof when the sun is shining etc).
Not everyone will need a wheelchair, catheterisation, mind-numbing fatigue, nappies, or an anal plug because they can’t control their bowels, have issues thinking about the simplest things, have problems talking, using their hands, relying on a great deal of third-party support, need countless ancillary meds for spasticity, pain, cognition, sleeping, more pain and so on. How can you be certain that your patient will avoid some or all of the above? Evidence shows that what is seen now cannot be extrapolated across the life of the patient. How is it that the neurologist/nurse fails to or often avoids telling their patient about the worse case outcomes and the effects that their choices now are likely to have on the disease course? The fact is that NO ONE can tell now what the future will be. Everyone is operating with one eye shut. Until we have the capability to say definitively that the disease will take a particular course then it is madness to assume the best when the odds of a best-case outcome are c. 1 in 10. Who bets on odds like that? Only someone betting with someone else’s money, that’s who.
How does one avoid being in the old-school cadre of medical professionals that just deals with the MS now – who keeps the patient happy and medicates them in a nice, calm, way that limits exposure to the potential risks of the highly effective DMT choices? Firstly, I’d suggest flipping your own pyramid and asking yourself – knowing what the future of undertreated MS holds – what your own risk tolerance would be. I have a feeling you wouldn’t want to tip-toe up to your own MS and take your chances when the odds are only 10% in your favour. It isn’t easy communicating difficult news that is complex and possibly scary but not giving a fair assessment of what is likely in store for the patient is swerving responsibility for a tough discussion. Telling them that they have MS shouldn’t be the tough part. Helping them make the best – evidence-based – decisions now that will affect how my life goes in 10, 20, 30 years’ time, that is the hard bit. Perhaps it would help them to imagine if they were looking after the same patient in 25 years’ time and imagine what would need to be treated if the patient had avoided effective intervention early (because they hadn’t been told the likely outcomes)
Here is an all too typical example: I know an MS patient (a fit and otherwise healthy young man) who enquired about HSCT with his MS neurologist to just have it dismissed out of hand on the grounds that it is too dangerous. The patient is a smart fellow and understands the potential risks very well. He also understands the potential payoff and considers it worth front-loading the risks for the payoff.
But the doctor blocked it because the doctor felt differently. The MS neurologist who doesn’t have MS and is not facing an uncertain future. The MS neurologist who is not willing to allow their patient, a grown man who can choose to vote, drink, and die for his country to make an informed choice. That doctor is highly unlikely to be this patient’s doctor in 20 years’ time when his MS may have gone very badly and is not there to see what their casual dismissal of HSCT as an option may have cost this patient. The MS neurologist was judging it all through their own lens, not that of the patient. Doctor knows best. Next patient please.
Until medical professionals see it as their duty to let the patient choose the risk they are willing to take once – fully and accurately informed – this patronisation of patients will continue. With many patients, unsure, unwilling, and unequipped to challenge, the medical professional will continue to act like a risk-averse god and choose what they think is best for their patients. That isn’t right.