Table 1 A discussion of each Decision Point, the impact of each on the patient’s story, and how the story could have followed a different path
Decision Point | What went wrong? | How did this contribute to chronicity? | What could have been done differently? | What would have been the likely result? | How might that help the patient’s story be more like that of Twin B? | Strength of Recommendation [36] |
|---|---|---|---|---|---|---|
I | “Radiographs are ordered” without indication [19] and the “patient is told he has two degenerative discs causing his low back pain” | “Disc degeneration” is found, and this is presumed the cause of the pain, resulting in unfounded fear and catastrophizing [10, 44, 45] | No radiographs ordered [19] | The graphic, fear-inducing idea of having a “degenerating disc” would not have entered the patient’s mind | “My back hurts a lot but that does not mean it is damaged.” | A Based on consistent and good quality patient-oriented evidence |
II | “told to stay out of work to prevent worsening of the problem and that he should avoid activities that provoke the pain” | The patient is instructed to take a passive approach, and to believe that activities should be avoided | A defined plan to resume activity is discussed and progressively return to all usual activities, including work [20, 46] | Hastens recovery and early return to work [47] | “Even though my back hurts, I can engage in activity. In fact, activity will likely help.” | A Based on consistent and good quality patient-oriented evidence |
III | “.referral for physical therapy is the standard protocol prior to considering seeing a surgeon, and…the insurance carrier will not pay for the surgeon visit until after he has tried physical therapy” | The patient feels that the conversation about referral for physical therapy served the purpose of following a protocol, rather than listening to him and framing the referral on his needs in overcoming the problem [29]. And that seeing a surgeon is inevitable, and necessary; being referred for physical therapy is merely a formality [48, 49] | After listening carefully to the patient’s concerns, a clear plan to rapidly bring about resolution of the problem, focusing on a targeted, evidence-based approach best suited to his condition | Rapid resolution of the problem [50] | “They are all on the same page in helping me get better as quickly as possible.” | A Based on consistent and good quality patient-oriented evidence |
IV | The patient terminates physical therapy “because he has to pay a copayment on each visit, and it would be cheaper to just see a surgeon” | The patient is disincentivized to pursue appropriate care for his condition [20, 51] because his insurance company policy puts a financial barrier in place that make appropriate care substantially more costly to him then inappropriate care [52] | A policy in place that, at all levels of the healthcare system, puts incentives in place that encourages high-value care and discourages low-value care [52] | No barrier is in place for the patient to pursue the most appropriate treatment | “The exercise hurts a bit but I might as well stick with it – there’s no reason not to.” | B Recommendation based on inconsistent or limited quality patient-oriented evidence |
V | “He stops physical therapy” | In terminating physical therapy, he loses the opportunity to gain an understanding of the discomfort he experienced when exercising [53]. The perception of his having a “degenerating spine” is reinforced, as is the assumption that activity should be avoided in order to prevent further “damage” [54] | A policy in place that incentivizes patients to pursue active, evidence-based, patient-centered care | The patient has an opportunity to be educated regarding the concept of “hurt ≠ harm”, leading him to continue an evidence-based approach [55] | “At first I was a little worried when the exercise bothered my back. But the doctor assured me that ‘hurt does not necessarily mean harm’ and, sure enough, they were right.” | A Based on consistent and good quality patient-oriented evidence |
VI | “MRI is ordered which confirms …degenerative disc disease… facet arthrosis… disc bulges” | Another inappropriate imaging study [56] reinforces in the patient’s mind that he has a degenerating spine; in fact, his perception is that the MRI showed that his spine is even more severely “damaged” than previously thought [57, 58] | No MRI is ordered, after the practitioner listens carefully to the patient’s concerns. The practitioner provides an individualized explanation as to why MRI is unnecessary; the patient receives evidence-based information about his condition [59, 60] | Reinforcement of the concept that he does not have a fragile spine and that there is no “damage” of concern [59] | “The doctors found the problem on examination and explained it to me. So I don’t have to take the extra time and effort to go for an MRI.” | A Based on consistent and good quality patient-oriented evidence |
VII | “The patient receives an automated message that the MRI report is available” | The patient sees confusing, fear-invoking words on the MRI that is provided to him on a piece of paper, without the benefit of expert explanation, context and guidance. This further exacerbates the fear and catastrophizing already in place [44, 58, 61, 62] | [If it were a situation in which an MRI had been ordered] Evidence-based explanation of the report, given verbally and/or imbedded within the report [63], with assurance that all the findings are age-appropriate, dynamic, and very common in patients of his age who have no back pain [44] | Enables the patient to question his own perception of having a “degenerating spine”, opening the door to reframing his situation in a more realistic, accurate and empowering manner [64] | “I have been given information about my back that makes me feel a lot better about what the pain means and what it doesn’t mean.” | B Recommendation based on inconsistent or limited quality patient-oriented evidence |
VIII | “His PCP confirms the findings of the MRI and refers him to a spine surgeon” | The patient’s distress that arose from having seen the MRI report is reinforced and exacerbated by being told he has to see a surgeon [65, 66] | In addition to the evidence-based explanation discussed above, assurance that there is no indication that an operation is necessary | Further supports the patient in questioning his perception of a “degenerating spine”, opening the door to an understanding that a straightforward, non-invasive solution is likely to be successful [64] | “The doctors understand me and my back pain, and have pointed me in the right direction.” | B Recommendation based on inconsistent or limited quality patient-oriented evidence |
IX | “The first available appointment with the surgeon is scheduled in six weeks” | The patient is left to stay at home and agonize over his predicament, reinforcing both his perceptions of pain and disability, rather than engaging in active steps toward improvement | The patient is immediately directed toward an active, productive approach, with return to activity and work (even if limited) | Avoids the detrimental impact of passivity [67] | “I have been given a bunch of simple things to do for myself. So I don’t have to wait for someone else to do things for me.” | C Recommendation based on consensus, usual practice, expert opinion |
X | “The surgeon reviews the MRI with him, confirming the multi-level degenerative changes and explaining that he may need fusion surgery, but that the standard protocol is to try injections first” | Two invasive approaches are discussed without sound evidence supporting their role for his condition [68] | Educating the patient regarding the benign nature of the MRI findings, assuring him that no invasive interventions are needed and indicating that active strategies, founded in self-care, is the best option [66, 69] | Reframes the patient’s impression of a “degenerating spine” that needs passive, invasive treatments | “At first my back hurt so much, I wondered if I would end up needing an operation. I am so relieved that they helped me understand what was going on and get me on the right path.” | A Based on consistent and good quality patient-oriented evidence |
XI | “A series of three injections is recommended, each occurring one month apart” | A non-evidence-supported approach is recommended (a “series of three”) [70] that further prolongs the patient’s period of disability and passivity, further leading him on the downward spiral toward chronic pain | Educating the patient regarding the benign nature of the MRI findings, assuring him that no invasive interventions are needed and indicating that active strategies, founded in self-care, is the best option [66, 69] | Reframes his unrealistic perception of his condition and redirects him toward an active approach to the problem | “I was surprised that back pain like this could be get better so quickly and simply.” | A Based on consistent and good quality patient-oriented evidence |
XII | “It is explained to the patient that he has two choices: have surgery to attempt to correct the problem or ‘learn to live with it’” | Reinforces his despondency and his inaccurate (though understandable) notion that he has no control over the condition, and that the only hope for him is a passive, invasive, non-evidence-based approach [71] | Educating the patient regarding the benign and dynamic nature of the MRI findings, assuring him that no invasive interventions are needed and pointing out that active strategies, founded in self-care, are the best option [66, 69] | Reframes his inaccurate perception of his condition and redirects him toward an active approach to the problem | By this point, the patient still has a “back pain story”, but only as a memory, and as a useful tool. He can use his back pain story as a reminder, if he has a recurrence of back pain (which many people do), of the helpful approach that was taken, the speed with which he recovered, and the benefit of activity in the recovery. In addition, he can tell his story to others who find themselves in a similar back pain situation as encouragement, and as useful information regarding what worked so well for him. | A Based on consistent and good quality patient-oriented evidence |