#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.

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