Preventing Effective Treatment Early
I often wonder why so many MS neurologists and their teams are so risk-averse when it comes to medicating MS hard and early. 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 with the patient
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 quite regularly, 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. Ergo: why would you use a drug first line that may cause death in any way shape or form? To you, the risks seem quite imbalanced. This is still a doctor/nurse centric approach because were a patient involved in the conversation, having had all the risks of MS explained to them, I think far fewer patients would opt to be so risk-averse.
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. 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/nurses are that comfortable stepping into that space. This hesitancy causes an internal brake, a fear: call it what you will. This scenario is all about the doctor/nurse though, not the patient.
What is about the patient is explaining risks. Not just for the now but for the duration of the disease. How many doctors/nurses can really say that they have had these tough conversations? Tough for the patient, and often scary. I daresay tough for the initiator too. How do you communicate the long-term risks? The data-driven reality is that there is an almost inevitable degree of disability that will impact the patient and all the people around them. It is made additionally difficult as the further out in time one looks the harder it is to be precise. At this stage, only broad brush data-driven remarks from datasets that are certainly not current inform this. Nonetheless, as a patient I want to know the best available evidence, I do not want reality to be varnished into something it isn’t in order to avoid the hard truths.
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 nor driving them onto a high-efficacy therapy because the doctor is an ideologue. 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 100% 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). It is possible to talk about the downsides.
Whilst it is true that not everyone will have mind-numbing fatigue, need a wheelchair, catheterisation, 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, need countless ancillary meds for spasticity, pain, cognition, sleeping, more pain and so on. But this is the reality for many people with MS. I know several who were diagnosed when high-efficacy meds were available but were talked into ‘going gently’ because the scary unpleasant stuff was sugar-coated into the ‘things like that happen to other people’ category. Now they have many of the above issues and there is no going back.
As a doctor/nurse, just how can you be certain that your patient will avoid some or all of the above? There is no evidence that a ‘mild’ presentation now means the person is unlikely tto suffer serious effects. No way at all of telling. 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. A person without the disease advising someone with the disease?
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.
Telling a patient 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 the doctor/nurse to imagine that they were looking after the same patient in 25 years time and having to see the effects of their approach today?
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.
However, their doctor shut down the conversation then and there 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 about risks now versus risks later?
That doctor is highly unlikely to be this patient’s doctor in 20 years time when their 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.
2 thoughts on “Preventing Effective Treatment Early”
This post is welcome and spot on and I hope it’s taken seriously.
I also think neuros need a reframing of “risk”
Having worked with oncologists professionally, even in that area there are issues. For example many oncologists believe that saving life at all costs is the goal and make treatment decisions accordingly. Yet in cancer types where treatment just prolongs the inevitable (for example recurrent ovarian cancer) many patients would prefer a slightly less “risky” treatment with improved quality of life during treatment. Better outcomes for the patient ensued when they were asked how they defined risk and what their goals were before treatment recommendations were made.
The same should be true in MS. Neuros who still employ the escalation approach decide for themselves that risk of death or severe side effects is an unacceptable risk given the fact that a more tried and true treatment would mean no death. However is death the worst outcome? I know many people with MS who realistically are facing unemployment. They are not in a wheelchair nor in need of anal plug but their purpose is gone and their cognition is shot to the point where they can’t even read a book. Many say if this continues it is a life not worth living. This is the reason Alemtuzumab was approved in an epic reversal where the FDA rejected its application due to side effect “Risk” and many patients appealed saying that ms progression was an unacceptable risk to them.
Brain damage is permanent and we have enough research to support the fact that a high efficacy treatment leads to better long term outcomes by any metric. Side effect “risks” can be managed. The question for the patient should be which high efficacy treatment is in their comfort level given the risks and benefits of each.
There are numerous studies showing how just a diagnosis of MS can cause PTSD in a third or more of patients. I think part of this is the uncertainty, and having more frank conversations about the worst case scenario and how to get ahead of it should be more the norm. Fortunately, the tides are changing and top global MS centers are advocating for a more aggressive treatment more early on. But the change should be accelerated and spread with more urgency.
Thank you for writing this.
This is a powerful read. Thank you writing it. I hope others see this and it helps them to understand.
Comments are closed.