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.
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….