Friday, 2 June 2017

#ClinicSpeak: shared decision-making: what does it mean?

Shared-decision making is compatible with paternalistic medicine #ClinicSpeak #MSBlog

This is a repeat post in response to the discussion on yesterday's post about decision making.

I urge you to read the perspective piece below, by Lisa Rosenbaum; it is beautifully written and captures the spirit and mood of the environment we currently find ourselves working in.

The treatment of MS has now become very complex; possibly too complex to expect pwMS to make decisions on their own without help. I have therefore asked 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.

...... In an essay entitled “Arrogance,” published posthumously in 1980, former Journal editor Franz Ingelfinger describes his experience as a patient with adenocarcinoma of the gastroesophageal junction — the area he'd studied for much of his career. As he considered the trade-offs of chemotherapy and radiation, receiving contradictory expert opinions, he and his physician family members became “increasingly confused and emotionally distraught.” Finally, one physician friend told him, “`What you need is a doctor.'” Ingelfinger notes, “He was telling me to forget the information . . . and to seek instead a person who would . . . in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief.” .....

This happens to me regularly. As an example, 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 2015 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 spent 2 months in turmoil about making the right decision. We exchanged numerous emails and I spoke 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 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. Once a decision had been made regarding her treatment she couldn't wait to get going; she had no hesitation in choosing the next available slot for her 5-day course of alemtuzumab and has received the course without complications.

What the perspective piece below and this patient have taught me is that I had forgotten my role as a neurologist. I have changed how I do things and one of the options on offer is to make the decision for my patients. The latter however is an informed decision and not a default position. There is a big difference between being paternalistic or patronising. I hope I have rediscovered the sophisticated intuition that Lisa Rosenbaum so eloquently describes in her concluding paragraph.

.... The doctors I admire most are characterized not by how much they know but by a sophisticated intuition about how best to share it. Sometimes they tell their patients what to do; sometimes they give them a choice. Sometimes, when discussing treatment options, they cover all seven tenets of informed consent. Sometimes, instead, seeing the terror of uncertainty in a patient's face, they make their best recommendation and say, “I don't know how things are going to turn out, but I promise I'll be there with you the whole way.” .....

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....

..... But science cannot answer a question at the core of our professional identities: As information-empowered patients assume greater responsibility for choices, do we assume less? .....

CoI: Multiple, but more importantly I am a neurologist who treats people with multiple sclerosis


  1. "Had a mother who died of SPMS in her early 50s". I'm amazed how many people I have known have died in their 50s of MS, yet the MS Society websites cliam that on average people with MS only lhave a lifespan which is 6-10 years less than average life expectancy (which suggests that people with MS would, on average live into their early 70s. Of course this doesn't refe to decades of worsening disability (as set out in the EDSS). Neuros need to be direct and honest e.g. If you don't start on a highly effective treatment the likely outcome is that you would get more and more disabled and die in your 50s or 60s. Letting patients start and ineffective treatment is a disservice to the patient. Giving patients a sense that they may be lucky or only develop benign MS is also a disservice.

    I wish you and fellow neuros could have attended the recent consultation which my 75 year old mother had with her endocrinologist. She has a condtion called parathyroidism. She has lots of grim symptoms and it is making her very unwelll. The constlant was exclellent. He ran through the main symptoms and when she said no to some, he asked her again (she has her head in the sand). After a scan / tests we saw him again and he said that she needed to have an opration (he ran through the procedure and the risks). She said she didn't want an operation. He then was quite honest as to hiow her symptoms would get worse and how her risk of a heart attack or stroke would increase... He said tha operation was a 99% cure. She is to have the operation. She is stubborn, but the consultant was so clear and honest that she didn't really have a choice. Sometimes a strong hand / pointer is the right apporach - consulants are the experts and see their diseases and treatment outcomes every day.

  2. Reflecting on yesterday's and today's posts on decision-making has made me appreciate that time is privotal. Our culture currently, here in the UK, is that time is of the essence and that everything should occur in the shortest possible time-frame. I recall last year the distress and horror experienced by myself, family and friends at my initial consultation in London being 5months after referral. However, in hindsight, that time provided to be of immense value, allowing for both the hours of research into Alemtuzumab and other DMTs, the induction v escalation rationale, etc, and the discussions with family as to which treatment to seek to obtain. I would have struggled to absorb all the copious amounts of information I filled a ring-binder folder with, and would have been far less confident of wanting Alemtuzumab if not for the time to debate with loved ones, and undertaking simple exercises such as pros & cons on the options. Plus the each time I thought I'd covered everything something else would occur to me or someone close to me - 'What about..?' and I'd find myself down another research avenue! The impact of the delay in receiving treatment for my active/severe MS is of course a whole other issue, but I can now see that there was some benefit to me in respect to engaging as effectively as possible in the choice of treatment, and the subsequent management of living post MS diagnosis + receiving Alemtuzumab infusions. I believe I'm living with everything as well as I am because I'd had time to grasp everything and to weigh it up again and again. I was left feeling reasonably confident that my research had been comprehensive and all encompassing. However it's frustrating to contemplate the amount of information-giving that is presented as 'This is the way it is' as in two neurologists presenting the escalation approach as the only one, universally applied. If all neurologists would engage with PwMS as the Barts team does I would be more confident of saying to others with MS yes let your Doctor decide, as opposed to: please check it out in depth yourself!

  3. I am very glad my Neuro made the decision for me, with my permission of course, to go on to Natalizumab. I didn't even know what MS was when I was diagnosed and having to choose from a list of drugs that I'd never heard of, some with very scary side effects, would have been impossible to do on my own. I probably would have chosen the wait and see option! But Now, 1 year later with no relapses, I know that relying on my Neuro was the best decision I ever made.

  4. When i was in my teen i use to go to a doctor with my mom
    Before enter the doc room there was this painting on the wall

    It said "Man is not bigger than myth"

    I shall never forget

  5. I'm in Australia and saw three neurologists before researching independently prior to making my decision (taking interferon in the interim). The first neurologist said do nothing but take vitamin D and wait for worsening, the second pushed Gilenya (as he does to all his patients), the third was a godsend and listened to me. He said he would support whatever decision I made as long as it was a considered decision and not one driven by fear (of the disease itself or of DMT side effects). We had several consultations until I told him I'd like Alemtuzumab.

    I believe neurologists are obligated to provide an overview of all options. It is then up to the patient to seek further information in the areas they see as an option. It is not the neurologists role to decide whether the patient is capable of making such a decision the first time they meet with them. Sometimes an appropriate DMT is as much about effectiveness as it is about patient lifestyle and how risk adverse the patient is.

  6. A lot of it comes down to the interpersonal skills of the doctor and how much you trust them. You've got to have the confidence that they've really interrogated your particular case, that they've listened to you, that what they say is based on these two things plus the mountain of experience that they can draw on. My most recent experience of this was the shared decision for me to escalate from Copaxone to Gilenya. It was difficult,because Copaxone had worked brilliantly and the new sensory symptom I'd developed was very minor. The neuro first offered me the chance to go on Gilenya and then when I'd asked numerous questions about risk-benefit,said it was a difficult decision and he himself was not sure which way to go. We then agreed to wait a few months to see whether the symptom disappeared. Almost as soon as I got home that day, I knew I'd done the wrong thing. Quick call to the nurses, decision to start Gilenya taken, my feelings of doubt gone. It was a long way round the issue but it was strangely reassuring to see that even for the consultant it was difficult.

  7. where is 'yesterday's discussion' - i could be blind but can't find it.


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