Thursday, 1 June 2017

#PoliticalSpeak: what has having babies got to do with MS?

Are the days of us making decisions for our patients without involving them in the decision making process over? #PoliticalSpeak

Last year I was asked by a law firm if I was prepared to give evidence in a medicolegal case in which the claimant, who had MS, was suing his doctors, and the NHS, for the delays in diagnosing him as having MS and getting him onto an effective treatment. He felt the delay had cost him 'brain' and had affected his cognition, his employment options and his long-term prognosis. I turned down the case as I simply don't have time for medicolegal work, or private practice for that matter. I wasn't told the specifics of this case so I don't know if the claimant had a valid case or not, nor do I know if the case has been settled or the outcome. What is does highlight, however, is the environment we are now practising MSology in. 


For those of you interested in medicolegal issues, you will find the commentary below in the BMJ important. In short Nadine Montgomery is a small lady with diabetes and experienced preventable complications as a result of delivering her baby vaginally. She had an obstructed labour that resulted in her son developing cerebral palsy. Her obstetrician had not told her about the increased risk of this complication with vaginal delivery, despite Montgomery asking if the baby’s size relative to her size, was a potential problem. Nadine sued for negligence, arguing that, if she had known of the increased risk, she would have requested a caesarean section. The Supreme Court of the UK agreed with her and judged in her favour, finding her obstetrician was negligent in not informing her about the potential complications of vaginal delivery and the different management options.  

This case, and its ruling, has implications for MSologists. We use high-risk drugs and if we don't inform patients about the risks of these treatments we are potentially opening ourselves open to legal challenge in the event of a complication. 

More importantly, denying someone access to an effective MS treatment, due to delays in diagnosis or not offering a specific treatment, opens one up to potential legal challenges. That is why at Barts-MS we offer all of our patients with active MS, who are eligible, alemtuzumab. Several of my colleagues don't. They feel the risks associated with alemtuzumab are too high for the drug to be used first-line so they keep alemtuzumab in reserve as a second, or third-line, DMT. I often ask them are the risks too high for them or their patients? As alemtuzumab is licensed, and green-lighted by NICE and NHS England, for use in active MS I think we have an obligation to make all active patients aware that they are eligible to receive alemtuzumab under the NHS. If we don't do this then someone may claim in the future that because they weren't offered, and treated with alemtuzumab early on in the course of their disease is the reason why they are now disabled. If the Courts show that patients' like this were deliberately denied access to this specific treatment they may rule against the neurologist(s) and the NHS. 

I know the argument I am making is hypothetical but surely the era of the patronising neurologist is over? Gone are the days of us making decisions for our patients without involving them in the decision making process, or may be you disagree with me? Is it right to make the decision that alemtuzumab is too risky for your patients without discussing the risks with them? One neurologist said to me that it was a waste of time discussing alemtuzumab with his patients; he informs them about the drug in such a negative way that none of them ever choose the therapy. It is difficult to respond to the latter, but when it comes to accessing alemtuzumab therapy under the NHS it is a lottery and really depends on what neurologist you see. The variation in alemtuzumab prescribing in the UK is quite extraordinary. Surely this can't be right? 


Chan et al. Montgomery and informed consent: where are we now? BMJ 2017; 357 doi: https://doi.org/10.1136/bmj.j2224


Excerpts:

...... The Montgomery v Lanarkshire case of March 2015 drew fresh attention to informed consent. Nadine Montgomery, a woman with diabetes and of small stature, delivered her son vaginally; he experienced complications owing to shoulder dystocia, resulting in hypoxic insult with consequent cerebral palsy. Her obstetrician had not disclosed the increased risk of this complication in vaginal delivery, despite Montgomery asking if the baby’s size was a potential problem. Montgomery sued for negligence, arguing that, if she had known of the increased risk, she would have requested a caesarean section. The Supreme Court of the UK announced judgement in her favour in March 2015. The ruling overturned a previous decision by the House of Lords, which had been law since at least the mid 1980s. It established that, rather than being a matter for clinical judgement to be assessed by professional medical opinion, a patient should be told whatever they want to know, not what the doctor thinks they should be told.

..... Many organisations (in particular the General Medical Council, who intervened to make submissions in the case) said that the Montgomery decision had simply enabled UK law to catch up with current GMC guidance; others hailed it “the most important UK judgement on informed consent for 30 years.” Doctors have expressed their concerns about its potentially radical effects on patient care and clinical practice. We held a public debate in 2015, including doctors, lawyers, and medical students, which showed renewed tension between the professional discretion of doctors and patients’ choices; indeed, the verdict has been characterised as supporting patient autonomy over medical paternalism. But what are the implications for doctors’ practice and their legal liability? Two years after the Supreme Court’s decision, we examine the effects of the Montgomery ruling on clinical and medicolegal practice.
...... Some clinicians said that retrospective application of the judgement could “open the floodgates” for claims in relation to doctors’ past actions.1

...... Some doctors feared that more stringent disclosure requirements would risk overwhelming patients with information, causing distress or leading them to make poor decisions, while doctors’ time would be taken up with lengthy explanations, creating a drain on healthcare resources. Information overload is unlikely given that information should be tailored to the patient. But doctors must judge what is appropriate for each patient and how their exercise of judgement might be assessed by the courts. The doctor might think that disclosure of certain information could lead the patient to a decision that is not in their best interests, as was true for the Montgomery case. But the ethical and legal position is clear: doctors must not withhold information simply because they disagree with the decision the patient is likely to make if given that information.

..... Making sure that patients understand all the information they need to make a decision will inevitably take longer. But allocation of health resources should be tackled systematically rather than individually. Healthcare policy should cover, for example, which treatments should be available and how consent procedures should be handled. The doctor’s duty is simply to treat patients according to their interests, which might include being given more information than usual.

20 comments:

  1. Unless a neurologist can tell their patient what *will* work, or what has the best risk:safety profile for any particular patient, all they should be able to do is provide information and let the patient make their choice.

    A pwMS can't be given a prognosis and each is prepared to take on a different level of risk. A neurologist's role in MSology should be to assist the patient to make an educated and considered decision. One not driven by fear or fear-mongering from outside sources.

    A good neurologist listens to their patient and provides information, without withholding treatment options because they themselves view the risks too great for the patient. If a patient meets the prescribing criteria, put the option on the table. Explain the success rate based on trials and current information and infirm them of the potential risks *including* the likelihood of them happening.

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  2. "That is why at Barts-MS we offer all of our patients with active MS, who are eligible, alemtuzumab."

    The vast majority of patients with RRMS are eligible for alemtuzumab, do you really offer it to so many people? Have you sidelined natalizumab?
    What if a patient of yours treated with alem gets listeriosis or sth else serious and then sues you?

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    1. If the risks are adequately explained, including the potential of listeriosis, as I'm sure they are, then there is no case to answer.

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  3. I'm going to sound rather cocky now when I say that I wish I could be a fly-on-the-wall on the day your supremely arrogant colleague has a consultation with a patient like me! When a local neurologist referred me to a London hospital, I arrived for the initial consultation armed with key points from:
    ABN guidelines, Patients Rights NHS Constitution, NICE pathway & MS in Adults Management, NHS England Clinical Commissioning Policy, NHS Choices Definitions/MS Treatment + all the wording for the definition of active MS I could find from the various charities and this blog. Finally I summarised my reasons for wanting Alemtuzumab in writing and handed over a copy. I'd read up on everything I could about Alemtuzumab and would have been able to quote studies if required. I'd also made sure to be knowledgeable about all the other relevant DMTs, so as to be able to back-up my option choice.
    Until I lived on google for the many weeks before the London based appointment I had no prior knowledge of any of these things that I have listed. In fact part of my lasting gratitude to this site is providing me with the knowledge that I was eligible for Alemtuzumab and the arguments for its use as first-line treatment. I wouldn't have known about the Blog without having stumbled across ProfG on YouTube ;-) The only thing I was sure of was the need to be as informed a patient as possible! As it was the neurologist kindly read my written summary of why I wanted Alemtuzumab and, instead of the potential battle I'd anticipated, simply stated 'I think you should have it'
    Certainly not all patients are going to be like this, and for some PwMS I understand that the thing they most require from their Consultant is to be 'told' what's in their best interests. But don't be naive and stupid as to think you can pedal a single biased position on a DMT and have it wash with everyone sitting in front of you! This smacks to me of a subtle form of abuse of position, and as I've said- Roll on (many more) ME days for all such patronising clinicians!

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    1. Well done and well said Fi. It's a cliche but true, knowledge is power. Glad the blog was of use. The days of the "do nothing and hope for the best" neurologist are well past their sell-by date.

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    2. You are also passed your sell by date also and useless too.

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    3. Ah, the latest daily vote of appreciation from Leicester?
      Thanks and all the best to you ;-)

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    4. I also sometimes print off information or studies posted on this blog and show them to my neuro so we can discuss. He is quite gracious in hearing the information from me and not at all condescending which, for me, makes a good doctor/patient relationship.

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    5. My neurologist has the opposite take and rolls his eyes when he hears about the Barts-MS blog. I not sure all neurologists are open to listening. In general, medics are quite an arrogant bunch.

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    6. I believe you are entitled to see another neurologist if you are unhappy with the one you've got.

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  4. Really wish I had the courage to fight for lemtrada for first treatment. I had researched enough - really - but nurse (not Neuro) scared me away when we had the initial chat. Lost 2 years and my Job... only to come back around to lemtrada diet hen MRI showed activity- now one month post round 1 my brain is working better than it has in years! I've got my smarts back and confidence to send CV out again. Won't ever mention MS word before signed a contract as it's cost my job and a couple opportunities since when I let them know my dirty secret. Slightly obsessed with Lem :)

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  5. Same with me, I had delays in my diagnosis and it took two and a half years to get onto a DMT (from my first severe relapse). No neurologist discussed DMT's with me even though I was diagnosed with RRMS and had severe MS.
    I will always get second and even third opinions now, after that poor show.

    Yes knowledge is power but a pwMS might be very unwell and mentally unable to start to figure out what care they 'should' be offered with regards to DMT. This was in my case. My family had no idea about DMT's and were not in a position to help me.

    I only discovered this blog by doing a web search. My health had been great before the MS showed it's head, so I had no idea about the problems with delayed diagnosis.

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  6. My experience was to have the local neuro tell me, despite the MRI results, he still thought I'd be fine on a category one DMT, though thankfully he referred me to London, after a little difficult correspondence between us. Then at the London hospital the MS nurse who saw me after the neurologist had approved Alemtuzumab, also said frightening things before getting me to sign the documents to say I understood the risks and wished to proceed. This includes saying that she's heard one neurologist describing its effects as like putting someone's body into the equivalent of having HIV.
    If I were asked now I'd advise research and then research some more, as we both did, but be prepared as well for the challenges of what is said to you in face-to-face discussions about DMT options.
    So glad you're doing well after 1st round of Lem and all the best with job hunting

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  7. I do not say this to offend nor does it apply to every individual practitioner.

    But by and large, medicos lie. A lot. In their notes, to their patients, to each other even.

    Law requires proof and evidence. If clinical notes are already full of lies then what's the patient going to use to prove anything?

    I obtained my partner's medical records from 2015 to 2016, from a public hospital. The amount of lies in there is staggering.

    Made a complaint to the Health Services Commissioner about my partner's treatment in 2015 (and the lies). I am a lawyer. So is the supposedly independent Health Services Commissioner.

    I went with my partner to the meeting with the Health Services Commissioner. I went because I know she is vulnerable and lawyers (independent or otherwise) will tear her soul apart. Sure enough, in front of me, the Health Services Commissioner tried to cut her down by telling her she has no evidence to prove that the notes are incorrect.

    I have the evidence. And I shut up the Health Services Commissioner.

    But if I wasn't there, my partner would have been fobbed of with crap.

    The bullying and harrasment culture within the medical community (eg in public hospitals) has been reported on by the media world wide. Docs aren't really that nice people - as individuals you may mean well, but as a group you're not that nice to each other (like lawyers). You tear each other down, your egos get in the way and so on. If you are like that to each other, then who is going to be nice and caring to the patients?

    What chance do people with MS whose partners are not lawyers have?

    I suspect that the MS case went nowhere. I suspect that MS patient could not prove that the delay in diagnosis led to losing her brain to a required legal standard. I would love to be wrong. But if medicos don't know what causes lesions then what's the law gonna do?

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    1. Anon 12:11am

      My medical records are written with the author's needs in mind rather than my own. For this reason I have not signed up to the MS Register.

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  8. Prof G aren't you shirking your responsibility by delegating decision making to your patients? Surely you have the skills and in-depth knowledge that they don't have? Isn't this what you are trained to do?

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    1. No not at all. The decision to ask your neurologist his/her opinion is also an informed decision and is part of shared decision making. When a patient asks me my opinion I give it. Can I suggest you read a blog post I did awhile ago about this. The article I review in this post is an essential read for all people with MS or a chronic disease and all HCPs.

      https://multiple-sclerosis-research.blogspot.com/2015/08/clinicspeak-unshared-decision-making.html

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  9. I am a Barts' patient and was never offered alemtuzumab. Still on natalizumab.

    Am I a specific case if "all patients are offered alemtuzumab"

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    1. Depends when you started natalizumab. Alemtuzumab has only been an option since early to mid 2015.

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    2. Are you offering JCV- patients a switch?

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