“I have been a personal subscriber, and avid reader, of the New England Journal of Medicine since 1986. I have had an intimate relationship with this journal for almost 30 years; this in itself tells you something about how important this journal is to me as a professional. I therefore urge you to read the perspective piece below, by Lisa Rosenbaum; it is beautifully penned and captures the spirit and mood of the environment I currently find myself working in.”
“In my opinion the treatment of MS has now become too complex to expect MSers to make decisions on their own. I am therefore asking whether or not the era of shared decision-making is over? Is it time for unshared decision making? Is it time for you to find a ‘doctor’? The following excerpt from the piece captures what I mean.”
“This happened to me just yesterday. One of my new patients who has active MS was deliberating over whether or not she should go the induction or maintenance-escalation treatment route. I saw her in late June and confirmed she had rapidly-evolving severe MS and had recommended that we should flip the pyramid and start her on a highly-effective treatment, i.e. either natalizumab or alemtuzumab. She is JCV seronegative. I counselled her and her husband and provided them with all the relevant literature on these two options and sent her away to make a decision. In hindsight the latter was a mistake. She has spent the last 2 months in turmoil about making the right decision. We have exchanged numerous emails and have spoken to her several times over the telephone and she was still unsure about what treatment option to choose. After reading the Rosenbaum perspective piece below I called her yesterday and said that I thought she should let me make the decision regarding her treatment. She agreed. Given her circumstances – she wants to start a family in the next few years and had a mother who died of SPMS in her early 50’s – I recommended she should go the induction route. The sense of relief in her voice was palpable over the telephone; she couldn’t stop thanking me for relieving her of the burden of making a decision about her own treatment. In short she had become overburdened with information. Now that a decision has been made regarding her treatment she can’t wait to get going; she had no hesitation in choosing the next available slot for her 5-day course of alemtuzumab.”
Lisa Rosenbaum. Perspective: The Paternalism Preference — Choosing Unshared Decision Making. N Engl J Med 2015; 373:589-592.
Some additional excerpts:
… consent is not merely the granting of permission but an exercise in choosing, and choice requires disclosure of a certain amount of information. How much information is adequate? Rather tautologically, as much as necessary to decide: “The scope of the physician’s communications to the patient must be measured by the patient’s need, and that need is whatever information is material to the decision.”….
… Today, any lingering ambiguity about informational adequacy is rendered moot by the dogma that more information is always better. Patients are exhorted to empower themselves with information to make wise choices, whether selecting hospitals or deciding how they’ll die….
…. Clearly, patients should have access to all available information, from their medical records to anticipated costs of care. But that it’s wrong to deny anyone information doesn’t make it right to always provide as much as possible. Might there, in fact, be such a thing in medicine as Too Much Information?….
…. The spirit of informed decision making reflects the recognition that only patients are experts on their own values. But the resultant approach ironically assumes a value framework not all patients possess. What if, for instance, the patient’s preference is to know less? ….
…. Eliciting that preference is difficult. Most patients, asked whether they wish to be informed, say yes. Even if they know they don’t want all possible information, our information-as-power ethos may make expressing that preference feel unacceptable. Most critically, the choice to be informed is paradoxically uninformed: you can’t know how much you want disclosed before you know what the disclosure contains and how it might affect you….
…. In the article “On Not Wanting to Know,” philosopher Edna Ullmann-Margalit questions the assumption that rational decisions require the “totality of evidence,” arguing that knowledge about oneself may increase autonomy but reduce welfare. Acknowledging that possessing information carries trade-offs, she emphasizes, doesn’t deny anyone’s right to be informed but rather affirms a right not to be. She suggests we engage in a meta–cost-benefit analysis, before a major decision, of the potential trade-offs of acquiring the information to make that decision…..
…. One challenge is that the benefits of information are intuitive, whereas costs are less apparent. One cost is cognitive overload: more information can lead to worse decisions. In one study, consumers presented with just a few salient points about hospital quality and out-of-pocket costs made better hospital choices than those presented with many parameters….
…. When emotionally overwhelmed, we’re especially prone to such decision traps. We focus more on readily imaginable risks than on more common but less gruesome ones. We’re also sensitive to subtle shifts in information framing: we’re more willing to undergo procedures carrying a 95% chance of survival than those carrying a 5% chance of death. And we tend to be more optimistic about our own health prospects than about others’, which may lead us to choose minimally beneficial treatments. As we strive for ideal informed decisions, can we distinguish emotions impairing information processing from those reflecting enduring values?….
…. But though decision aids may mitigate cognitive and emotional overload, they assume that decisions will be shared. And as information transfers, so does the sense of responsibility, with potentially paralyzing effects — such as those sometimes seen in relatives of dying patients who’ve decided against resuscitation efforts but are asked about matters like continued nutrition: choosing to stop feeding someone can feel tantamount to starvation…..
…. For the many medical decisions now deemed preference-sensitive, the interplay of volition and willingness to assume risk could profoundly affect public health….
15 thoughts on “ClinicSpeak: unshared decision making”
Prof G it's nice that you give this time to MSers exchanging emails and speaking on the telephone. I've not emailed my MS neuro before or spoken on the phone. I keep getting the feeling that neuros time is so precious (which of course it is) and I have had to become an expert patient after being very naive about medicine and health care in general. My neuro advised me to go away and read up, make my DMT decision and discuss it with my MS nurse. I spent alot of time reading MS forums and this blog to make my first line DMT decision (Tec). I discussed Alem with my MS nurse and was informed it would be considered as second line. Although it seemed if I really pushed and insisted Alem might of been an option as first line.
I don't think I would agree now to unshared decision making for my MS and healthcare in general. After my MS nurse telling me Alem would be considered if my current DMT wasn't working – it doesn't sound sound like this information she gave me was correct. I don't know if the reason behind her saying this was because of short term NHS budgets and the higher cost outlay of Alem initally and other DMT's are lower cost. I've lost a lot of trust in health care provision, it's like I have to be two steps ahead. I am sad to hear myself sound negative about it but I have reason to be like it as other mistakes were made which have affected my quality of life. Though i'm sure there are many patients out there that are happy with unshared decison making and also those who are happy with how they have been treated so far. In the future I will have to make other decisions about my healthcare and when I become elderly so I feel it's important to be informed.
I hear you. You learn to follow your 'inner voice' eventually, I've had it with being bullied into things by old white mean in coats. Do your own thinking with the information you're given.
Why is the pyramid flipped for aggressive cases only? Is the maintenance escalation approach right for anyone? I suspect few would only want to realise the answer to this in hindsight! Why are neurologists waiting for their patients to worsen (which will inevitably happen on maintenance DMTs, except nataluzimab), before they'll recommend an induction treatment? MS is a 'progressive' disease. Draw a line in the sand & take action early to give your patients the best chance at avoiding the inevitable.With such a wide variation of opinions regarding treatment strategies between neurologists, no way am I willing to put my health in the hands of a doctor who could swing one way or the other, unless I knew this doctor's treatment preferences before making the appointment. In which case I have already decided how I want to manage my disease & am merely finding a neurologist who will facilitate that.
Re: "Why is the pyramid flipped for aggressive cases only?"It isn't; we have a license to use in patients with active MS. Active MS is a broader definition than highly-active and rapidly evolving severe. These latter definitions are for fingolimod and natalizumab.
Prof G is your current position not incongruent with your statements in the following paper?Rieckmann P, Boyko A, Centonze D, Elovaara I, Giovannoni G, Havrdová E, Hommes O, Kesselring J, Kobelt G, Langdon D, LeLorier J, Morrow SA, Oreja-Guevara C, Schippling S, Thalheim C, Thompson H, Vermersch P. Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group. Mult Scler Relat Disord. 2015 May;4(3):202-18. http://www.sciencedirect.com/science/article/pii/S2211034815000243
As we have said "design a horse by committee and you get a camel"
Re: "Prof G is your current position not incongruent with your statements in the following paper?"My new position is not; I am simply arguing to include the decision to ask your neurologist to make the decision for you as part of the proposition.
I don't understand why being young and wanting to start a family would preclude use of natalizumab
I can see some people may not want to know all the information or take the decision themselves. However, in the absence of even a general consensus amongst neurologists as to a treatment model or approach, I wouldn't be happy with this. You lot can't even agree on treating to a NEDA target!I travel out of area to see a different neurologist as I was informed at the point of diagnosis that my local one had a conservative outlook in terms of treatment. I have since heard him speak at the local course for the newly diagnosed and heard him say that he doesn't recommend annual MRIs to monitor effectiveness. Having been pointed at this blog by the MS Trust, that didn't seem like a good approach for me.I'm much happier having seen someone who works in a team that considers the risks involved in both induction or escalation on a more equal footing. The decision is a hard one to take and the consultant's recommendation to take Tecfidera was probably the weightiest factor for me. But only in light of knowing that the induction approach was considered and not discounted as a first-line. Knowing that effectiveness will be monitored also played a large part so that I can switch if it's not achieving NEDA even without a full-on relapse. I still wonder whether it was the right decision, but only time will tell and it would be the same even if I had gone down the induction approach from the start.As there is no publicly available information as to doctor/hospital statistics as to how many of their patients are on or have taken which DMTs, it would be down to the consultant to tell the MSer of their own approach in order for them to assess the recommendation. But that depends on the consultant being unbiased as to their own attitude to risk. I'd be interested in the results of a survey where neurologists are asked to recommend a DMT for various patient profiles to see what the general approach to risk is.
I completely agree with Jims comment above. Doing for and not with would be a huge step back. I changed neurologists until I found one who listened to me. If I had listened to the first two's advice, I would not be on a DMT at all let alone an induction therapy. If I was your patient I would listen to and value your views but I would want a say in my care / treatment.
It seems that there is no absolute right or wrong way of doing things, it has to be adapted to the patient and be truly patient centred. Some 'shared' decision-making is not really shared. It is 'here are the pros & cons, here are the leaflets, make your mind up and let us know'. That is not really sharing, not a 2 way process and as Prof G says neither is it is offering a choice of not having to make the decision them-selves.Doctors also need to talk to people about their attitude to this decision-making, does it suit them? do they feel lost/overwhelmed? do they need more information or do they need more direct guidance? Different people need different help. It isn't just about the decision that has to be made but is also about whether they want to make that decision. Thanks again for this blog, it has helped me make some decisions!
I find this quote quite abrasive … When emotionally overwhelmed, we're especially prone to such decision traps. We focus more on readily imaginable risks than on more common but less gruesome ones. We're also sensitive to subtle shifts in information framing: we're more willing to undergo procedures carrying a 95% chance of survival than those carrying a 5% chance of death. And we tend to be more optimistic about our own health prospects than about others', which may lead us to choose minimally beneficial treatments. As we strive for ideal informed decisions, can we distinguish emotions impairing information processing from those reflecting enduring values?.You've mentioned risk adverse neuro's many times on this blog. I'm sure there are people who feel safer in the knowledge someone else is in control but I doubt it is the majority. If anything this blog has prompted me to take control of my health and treatment. Time is brain and all that…
I don't think it matters who is in what majority… When children are born, we take them as they come – some are fussy, some are content, some cry like there is no tomorrow, some get sick, some are soothed by a vacuum cleaner and for some no one but their mum or dad will do. Patients are just like children – you've got to take them as they come without worrying about who is in what majority. A patient has every right in the world to make a reasonable treatment decision their doctor doesn't agree with. A patient has every right in the world to know everything about their illness and every right in the world to demand that their doctor make decisions they don't want to make. Bojana
I went to buy a computer recently. I stood in the line – I just wanted a laptop that wouldn't lag when mutli tasking. In front of me stood a man who had a 10 minute conversation with the sales person about which of the two graphics cards he had in mind would help him run games on his computer. The sales person was very technical when dealing with the man in front of me – it all sounded Spanish to me. When my turn came and I explained I just wanted something that fast that doesn't lag when multi tasking, he thought for a moment and suggested 2 alternatives both of which suited me fine. They were similar price so I told him I'd go with whatever he would get. I would never treat my or my family's health the way I have treated my computer purchase – when it comes to health, i like to be as informed as possible and make my own decisions in conjunction with treating doctors. But I know that not everyone is like me, and I know that my partner's parents are the total opposite – they prefer not to know and they prefer for their doctors to make the decisions for them.Doctors are service providers and patients are consumers. A doctor who treats his patients all the same is not providing good customer service. People are different and good doctors adapt their style to what their individual patients are looking for. Bojana