In 1995, Christopher Reeve sustained a cervical spinal cord injury (SCI) that resulted in quadriplegia. Reeve was known to millions around the world for playing the title role in the 1978 film Superman, and his celebrity status resulted in widespread interest in his injury and recovery. Shortly after his injury he began advocating for spinal cord injury research and disability-related legislation. He eventually served in leadership roles in the American Paralysis Association and the National Organization on Disability and founded the Christopher Reeve Foundation with the goal of improving funding for spinal cord injury research.1
Reeve became known for his boundless optimism about his own recovery and the conviction that science would make significant progress in mitigating the most debilitating effects of SCI within his lifetime. Until his death in 2004, Reeve remained hopeful that he would walk again, and his advocacy included a strong emphasis on reversing paralysis, not simply living with it. The extent to which this hope dominated his message is captured in the title of a 2007 documentary of his experiences, Hope in Motion. There were, however, critics of his efforts to inspire who pointed out that many aspects of Reeve’s experience did not reflect the realities faced by most individuals who live with SCI or of the likelihood of significant functional improvement following SCI. Reeve had more resources to devote to his rehabilitation than most individuals, and the excessive promotion of even minor improvements in his condition may have contributed to misunderstanding of SCI and unreasonable expectations of recovery among those with similar disabilities.2,3
The sensationalism and inaccuracies in many media reports can be frustrating to rehabilitation practitioners and may actually complicate our efforts to provide patients with realistic prognoses. How can we encourage the engagement in rehabilitation that is so essential to recovery while giving patients accurate information about the long-term effects of injury and disability? When does hope represent a false understanding of the current reality and the future, and what can we do to help patients develop and work toward realistic goals?
In the mid-1980s, Charles Snyder, PhD, a psychologist at the University of Kansas, researched how people maintain a positive understanding of themselves when faced with the reality of poor performance.4 In a 1989 paper, he described how people use excuses to distance themselves from responsibility for poor outcomes and develop hope to increase their connection with positive ones.5 Both of these strategies help people negotiate reality in a way that preserves their view of themselves as being good and having control. Snyder defined hope as “a positive motivational state that is based on an interactively derived sense of successful (1) goal-directed energy (agency) and (2) planning to meet goals (pathways).”4 In other words, hope involves a belief in our capacity to accomplish certain goals as well as the ability to plan our actions effectively to achieve them. This optimistic perspective includes the ability to find alternate pathways to meeting goals when obstacles are encountered. Snyder references research demonstrating that “normal” people have an elevated sense of their own goodness and the extent of the control they have. However, this overly positive self-perception is actually adaptive—it helps them navigate life and results in improved outcomes.
Rehabilitation professionals encourage patients’ active engagement in their own recovery by helping them establish and work toward goals of achieving function or preventing negative outcomes. These dual aims closely match the two types of goals Snyder described (Figure 1).4 Identifying the short- and long-term benefits of rehabilitation is part of motivating adherence to a treatment plan. This is relatively straightforward when, based on conclusive data or compelling professional experience, we feel confident assuring patients that a particular goal can be achieved. In other cases, complex disease processes, comorbidities, or other barriers to recovery require that we be less certain in predicting positive outcomes. Additionally, it can be difficult to motivate patients to engage in a difficult rehabilitation process to prevent conditions that may seem to them less likely or more remote. It is often in complex cases, when the prognosis is less certain, that patients’ attitudes can make the difference between functional decline or improvements that will only be realized with persistence motivated by the belief that their efforts will have tangible beneficial results.
In past generations, physicians adopted a paternalistic approach, often controlling or withholding negative information about the diagnosis, prognosis, or treatment options from patients in the interest of giving hope. This often included making decisions for patients rather than providing them with the necessary information to make informed decisions. We can recognize that this approach is unethical and still be unsure about how to approach clinical situations complicated by limited professional experience, outcomes data, or patient capacity to weigh all of the options. Should practitioners err on the side of giving hope, even at the risk of encouraging false hope?
False Hope: Three Themes
Some researchers have criticized high hope as maladaptive when it is based on illusions rather than reality, involves unsustainable goals, or causes individuals to develop flawed strategies to achieve the goals.4 Snyder’s research-based responses to each of these themes are described briefly in the following paragraphs.
Illusion Versus Reality
While it is true that there is a positive bias to high hopers’ views of themselves and the world, in general “people do not maintain their high hopes irrespective of feedback that should constrain such hope… [rather] high hopers appear to calibrate their goal expectations according to relevant boundary conditions.”4 High hope is not the same as fantasy or wishful thinking. Additionally, high hopers “tend to find a sense of benefit and meaning when they face traumatic events…” and this “benefit finding consistently has been linked to heightened well-being and superior adjustment.”4 Practitioners should recognize that a patient’s exaggerated sense of optimism may not represent false hope, but instead be a constructive way of coping with a devastating event. Assuming the best outcome, even one that practitioners consider overly optimistic, may be evidence of patients finding meaning that can motivate them to work toward a positive outcome that statistics or our professional experience tell us is unlikely. Patients with high hope are capable of revising their goals in response to input from a trusted clinician who takes the time to understand and collaborate with them.
In response to critics’ claims that establishing unreasonably high goals represent false hope, Snyder responds: “In experiments…I consistently find that the high-hope people do set more difficult goals than low-hope people, but these high hopers are just as likely to reach their difficult goals.”4 There are several reasons why high hopers have more success accomplishing more difficult goals than do individuals with low hope. According to Snyder “high-hope people see their goals as challenges and are invigorated by them…,” they “are flexible…and think of several avenues to their goals…,” and they “persist, even under stressful conditions.”4 Additionally, there is value in pursuing a lofty goal while understanding that it may be approximated rather than fully achieved.4 When patients recognize that their goals are not achievable, they are more likely to trust practitioners who have supported their initial efforts when alternate goals are suggested.
According to one definition, false hope “is the state of having a desired goal and the requisite motivation (i.e., agency), but not having the plans to reach the goal.”4 However, Snyder described this definition as incomplete, since it is missing the required element of “pathways thinking.” Snyder’s research showed that hope includes the skill of developing pathways for goal achievement. “Hope theory research shows consistently that high-hope persons select good routes for their goals, and that this is especially the case during circumstances involving stress or goal impediments; conversely, low-hope people become confused, avoidant, and ineffective in finding routes to their goals during normal or impeded situations….”4 Individuals with low hope tend to “ruminate about being stuck…and engage in almost magical escape fantasies….”4 High hopers, on the other hand, “are flexible and can find alternative goals” when they encounter
a barrier.4 Snyder summarizes that “because pathways thought by definition is related to effective goal thinking, it is not possible in hope theory to find inappropriate pathways cognitions.”4 Rather than working to discourage high expectations, practitioners can use their expertise to guide patients in identifying and pursuing alternate pathways to achieving functional goals.
According to Snyder’s definition, Reeve consistently demonstrated characteristics of someone with high hope following his injury. He participated in a rigorous exercise and rehabilitation regimen designed not only to restore function but maintain as high a level of function as possible in the event that a cure was found for his condition. Five years after his injury, Reeve regained some mobility in his fingers and after a few more years reported significant return of sensation throughout his body. These improvements surprised medical experts, and his rigorous exercise program was credited with making these improvements possible. Reeve never experienced significant reversal of paralysis, but in striving for that goal, he achieved more than many medical experts predicted he would.
In an interview published in Disability, Reeve reflected on his accident and his subsequent response: “Who knows why an accident happens? The key is what do you do afterwards. There is a period of shock and then grieving with confusion and loss. After that, you have two choices. One is to stare out the window and gradually disintegrate. And the other is to mobilize and use all your resources, whatever they may be, to do something positive. That is the road I have taken. It comes naturally to me. I am a competitive person and right now I am competing against decay. I don’t want osteoporosis or muscle atrophy or depression to beat me.”6 Perhaps it is this persistence in working toward his goals that can serve as the most compelling inspiration for those who encounter similar challenges. Reeve’s life following his injury demonstrated the truth of Snyder’s observation that “at minimum, a patient’s hope may aid in the battle against a life-threatening disease in that such hope contributes to a fighting stance, one in which the patient follows the prescribed medical regimen….”4
When we think of our contributions to a patient’s rehabilitation, we tend to focus on the specific areas of clinical and technical expertise. However, recovery and rehabilitation are dependent on many variables. All positive outcomes in O&P require the appropriate use and wear of a device, as well as numerous other factors (such as participation in therapy) that are outside of the direct control of the practitioner. Our professional responsibility is not limited to the delivery of a device that is designed and fitted appropriately. We may have less control over many important factors, but it is within our scope of practice to guide patients as they navigate not only physical and structural challenges, but also challenges related to setting goals and working toward them. There are many “soft” clinical skills that represent superpowers that practitioners can develop to better assist patients in these areas.
Motivational interviewing (MI) is an approach to interacting with patients that recognizes the primacy of patients’ role in their own recovery, as well as the influence practitioners can exert in this process. “MI is a collaborative, goal-oriented style of communication with particular attention to the language of change. It is designed to strengthen personal motivation for and commitment to a specific goal by eliciting and exploring the person’s own reasons for change within an atmosphere of acceptance and compassion.”7
Based on Snyder’s research there appears to be little downside to encouraging and fostering hope in the individuals we work with. MI and related skills can help us assess each patient’s level of commitment toward achieving goals, provide professional insight into those that are most appropriate for each case, and guide the patient in selecting alternate pathways towards achieving those goals despite challenges. We can provide what Snyder describes as “honest feedback that engenders hope.”4
John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center (NUPOC). He has over 30 years of experience in patient care and education.
Training on MI, with a focus on O&P practice, can be found on the American Academy of Orthotists and Prosthetists’ Online Learning Center. To read more about MI, see Motivational Interviewing: Encouraging Healthy Behavior Change (The O&P EDGE, June 2017), and Applying Health and Wellness Coaching to O&P (The O&P EDGE, March 2018).
- Snyder, C. R. 2002. Hope theory: Rainbows in the mind. Psychological Inquiry13(4):249-75.
- Snyder, C. R. 1989. Reality negotiation: From excuses to hope and beyond. Journal of Social and Clinical Psychology8(2):30-57.
- Our first interview with Christopher Reeve. February 6, 2018. Retrieved November 29, 2021.