Preventing Effective Treatment Early

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.

It Shouldn’t Be Like This (But It Is)

Go with me on this…

Someone finds a funny lump on their testicle or breast so they call the GP to book an appointment and get it checked out. Once the GP has checked it out and is suspicious, the person is catapulted onto a cancer pathway that presumes it is cancer until proven otherwise.

This happened to me recently, and in the UK this is called an ‘urgent suspected cancer referral’ and, thankfully, 90% of people do not receive a cancer diagnosis. Panic, panic, panic, and breath, no cancerous mole for me.

What about the 10% that do get a positive diagnosis of cancer? If this frightening news was treated in the way that many MS diagnoses are then the following is a rough approximation of the next steps:

Try to imagine that this newly diagnosed testicular or breast cancer patient were dispatched from clinic by the oncologist, or possibly even the oncology nursing team, with a handful of leaflets about the available drugs (some of which, if we are frank,  are the modern equivalent of having surgery after a hanky with chloroform has been held to your face) and then offered an appointment in several months’ time to check how the tumour is growing and discuss options and choices.

So far, not wildly shy of the mark for many MS patients. By the way: the drugs? All of the drug options for MS sound horrendous to the uninitiated, and with no idea how to interpret the dreaded side-effects listed it is little wonder if you baulk. Grasping the leaflets about these Disease Modifying (not curing) Therapies the vast majority of patients realise that they have to learn a totally alien language at the same time as coming to terms with the diagnosis of chronic disabling disease. The faster the better. The newly diagnosed patient is on their own and with a complete freak-out diagnosis having been handed to them they do what everyone does these days and Google it despite being told to stay away from Google (for the record the most facile piece of ‘advice’ ever). 

Is it lacking context? Definitely.

Are you confused? You will be.

Are you scared? Guaranteed.

Of course, that doesn’t happen with cancer (except the Google bit!). No one would dream of treating a cancer patient like this. However, that is the exact experience of far too many newly diagnosed MS patients.

Compared to the relatively well-funded oncology services in the NHS the MS service is the poor relation and when the MS patient finally gets their confirmed diagnosis of an incurable, lifelong, and progressively disabling condition there is relatively little support. The nurses are amazing but they have a ridiculous patient load.

It’s odd though. For all the patient-centricity that is talked about you still hear about the occasional diagnosis by post, the gaslighting of patients who want to get on the most efficacious therapies the soonest (a proven beyond doubt way to mitigate the long-term effects of this ghastly disease), the patients who are told to choose their own medication (you are assumed to be an expert in pharmacology, pharmacodynamics, immunology, neurodegeneration etc) and to try and get the best outcomes the MS patient is going to have to become expert in the disease and the treatments, and if they have read much they’ll know that whilst things take the time they take their brain and nervous system is deteriorating at an unknown rate. With every day that passes they are a stage nearer to a host of repeatedly proven disabilities, both physical and mental. 

In case you are wondering, in the UK once cancer is confirmed there is a two-week target to start treatment. Two weeks from diagnosis. Two weeks! Not always hit I grant you but a stated ambition nonetheless.

“But (at least?) it isn’t cancer” or variations thereof are trotted out at this point as if comfort is to be taken from this spurious and slightly odd comparison. Odd,  because at least many cancers are curable whilst MS remains an incurable disease. The available drugs merely – to differing degrees – modify the disease course. There is no cure. MS is progressively robbing the patient of everything they took for granted, usually when they are in the prime of life.

The sad fact is that cancer is, rightly or wrongly, strongly associated with premature death, and in our society especially, we are very scared of death. A bit like Harry Potter’s  Voldemort it is customary to call it something other than what it really is. Death is powerful, frightening and to be avoided. We go so far as to publicly lionise people whom we feel have given their lives to preserve ours/others. It is called the ultimate sacrifice and valourised through the award of medals for bravery. Life is to be treasured and celebrated, the selfless giving of it for one’s fellow man doubly so.

You see, MS doesn’t kill you. You tend to die with MS and not from MS and this fact alone makes it infinitely less scary to an outsider, be that a friend or a neurologist. I can only imagine that this is the reason why MS is not taken as seriously as cancer.

Let’s return to death for a moment; the uncontested outcome, the undeniable and unavoidable endpoint for us all. I believe this is the real problem when holding the approach to MS care against that of cancer care. The focus is on the endpoint and isn’t really on the journey. MS patients are set for a long and difficult journey and yet that journey seems overlooked, devalued, unimportant when held against the fact that it is unlikely to lead to premature death. With MS the journey doesn’t seem to matter, only the denial of death. 

There has been no serious systemic change in MS care, as there was with cancer treatment. Perhaps it’s time we started that conversation? 

(Is the system perfect for cancer patients? Undoubtedly not. However, my point is that the professionals treating cancer or MS tend to have quite different feelings about the seriousness of the disease. This is a historical thing and the entire system surrounding the perception of the seriousness of MS is structurally flawed, or it would be taken more seriously, as a rule, not an exception.)

By: with the capable help of top-notch proofreaders Rachel and Kathleen