Everybody Hurts: ACE and Trauma-informed Care
April 2021 Issue
In an article titled"What is Clinical Empathy?" Jodi Halpern, MD, PhD, relates the following story to demonstrate how a physician's lack of emotional attunement increased a patient's distress.1 A pregnant patient reported that she was anxious during a discussion with her physician about what to expect during labor and delivery. The physician noted her anxiety, and in an attempt to reassure her, he provided a detailed explanation of pain relief options. The physician was not aware that the patient had survived rape, or that her fear of being restrained and losing control was exacerbated by his descriptions of being "tied" to an intravenous line and the resulting numbness and inability to push. Halpern uses the words "panic" and "terror" when describing the patient's feelings, despite the absence of any obvious stimulus during the encounter that warranted those reactions. The physician maintained a cheerful demeanor as he continued to describe her options. This indicated to the patient that he did not recognize the depth of her fear, and the reassurance he offered did not feel personalized to her situation. Because the patient felt that the physician's demeanor and non-verbal communication did not sufficiently acknowledge her emotional state, she chose not to answer and instead changed obstetricians.
There does not appear to have been anything inherently wrong with the physician's approach or behavior, and it is likely that he was confused about why his positivity and attempts to reassure were ineffective. A lack of awareness of the impact of trauma may cause us to unwittingly complicate encounters with our patients. Understanding the prevalence and impact of trauma and developing appropriate clinical responses can help us avoid or at least minimize the negative experiences of our patients. This article describes trauma-informed care (TIC) and how it can improve our clinical encounters.
Abuse, Neglect, and the ACE Study
According to the Child Welfare and Information Gateway, a service of the US Department of Health and Human Services, more than 670,000 children were abused or neglected in 2018.2 A similar number of children were abused in 2017. In addition to the physical harm caused by abuse, "Distress and psychological damage (including challenges in functioning or coping) can occur where the event threatens the person's safety or overwhelms their ability to integrate their emotional experience (e.g., understand and make sense of the event)."3 This damage can impact health behaviors, increase the likelihood of developing disease, and impact clinical encounters many years later.
In 1998, Felitti et al. published the results of a study investigating the association between multiple categories of child abuse and health-related behaviors and disease in adults. The Adverse Childhood Experiences (ACE) study assessed "the long-term impact of abuse and household dysfunction during childhood on…disease risk factors and incidence, quality of life, healthcare utilization, and mortality."4 Study authors asked 9,508 adults who received care at a clinic in San Diego about childhood psychological and physical abuse, as well as contact sexual abuse, and exposure to substance abuse, mental illness, violent treatment of mother or stepmother, and criminal behavior. They gathered data on "ten risk factors that contribute to the leading causes of morbidity and mortality in the United States…including smoking, severe obesity, physical inactivity, depressed mood, suicide attempts, alcoholism, any drug abuse, parenteral drug abuse, a high lifetime number of sexual partners…and a history of having a sexually transmitted disease."4 Participants answered questions related to "a history of ischemic heart disease…any cancer, stroke, chronic bronchitis, or emphysema (COPD), diabetes, hepatitis or jaundice, and any skeletal fractures…."4
The prevalence of exposure to adverse experiences reported in this study are similar to what has been reported in national studies. Between 20 and 30 percent of respondents reported exposure to alcohol abuse (the most prevalent adverse experience) or contact sexual abuse.4 More than half of the participants in the ACE study reported having experienced more than one type of adverse experience in childhood. "Both the prevalence and risk…increased for smoking, severe obesity, physical inactivity, depressed mood, and suicide attempts as the number of childhood exposures increased," and the researchers "found a strong relationship between the number of childhood exposures and the number of health risk factors for leading causes of death in adults."4 The researchers describe a "strong dose relationship between the breadth of exposure to abuse or household dysfunction during childhood and multiple risk factors for several of the leading causes of death in adults," and concluded that "the impact of these adverse childhood experiences on adult health status is strong and cumulative."4
What Is the Link?
The ACE study clearly demonstrated a connection between traumatic experiences in childhood and risky health behaviors and disease in adults, but why does this link exist? A relationship between child abuse and social, emotional, and cognitive impairment is supported in other research. These impairments directly influence decision-making and behavior in children and adults. Felitti et al. surmise that smoking; abuse of alcohol, drugs, and food; and sexual activity "may be consciously or unconsciously used because they have immediate pharmacological or psychological benefit as coping devices in the face of the stress of abuse, domestic violence, or other forms of family and household dysfunction."4 The graphic in Figure 1 explains potential influences that adverse childhood experiences have on individuals throughout their lives.
The negative consequences of risky health behavior are so obvious that we may miss the benefits they offer. Behaviors that are correctly viewed as problematic or risky from a medical perspective may offer short-term benefits, similar to the way that gait patterns we consider deviant in O&P are often elegant short-term solutions to functional deficits. When individuals discover that certain behaviors help them deal with the anger, anxiety, and depression that are common responses to the stress of abuse, the behaviors may become chronic coping mechanisms. The cumulative effect of these coping strategies can have a detrimental effect on health, just as gait deviations provide both short-term improvements and long-term challenges.
In addition to the negative health consequences of risky behaviors, survivors of abuse may also exhibit other traits that can complicate the provision of care. Patients may respond with exaggerated anger, fear, or aggression to perceived threats or dangers. Passive responses include withdrawing, dissociating, and a sense of hopelessness.3 Remaining passive or deferring to the authority of the provider rather than making informed choices can result in less engagement in their own care.6 This aggression and passivity are seen frequently in O&P care.
Family medicine physicians Purkey et al. comment that "trauma-informed care is not trauma-specific care; it does not propose to heal the trauma nor even to address it directly."6 According to Cations et al., "trauma-informed care…does not require every person within a system to provide treatment for the symptoms of the trauma. Instead, all members are expected to incorporate their knowledge of trauma and its impact into their daily practice and maintain referral pathways to trauma-specific services where these are needed."3 These authors go on to advise that TIC involves amending "procedures to account for triggers and creates an environment that maximizes control for the survivor" with the goal of reducing the risk of re-victimization.3
Purkey et al. describe the five principles of TIC (Figure 2) and recommend care providers "actively involve patients in their own healing process using informed choice. By presenting both positive and negative choices (including the option to not engage in care), we can begin to override the passivity or deferral to authority that is typically used as a means of self-preservation by survivors of trauma."6 Racine et al. advise that "practitioners can use trauma-informed communication skills (i.e., listening, empathy, validation, and compassion) to increase patient comfort and reduce distress."7 Berliner and Kolko point out that "these principles are essentially principles of good care and are not specific to trauma per se. For example, safety, trustworthiness, collaboration and mutuality, empowerment, voice, and choice should characterize all systems-level responses."8 Since the early 2000s, proponents of a patient-centered care approach have advocated supporting active engagement of patients and other stakeholders by partnering with them in shared decision-making. According to Cations et al., "trauma-informed care extends this philosophy by emphasizing the fundamental role of trauma in shaping the person's experience of care. From this perspective, responsive and holistic care for trauma survivors is both person-centered and trauma-informed."3
In cautioning against universal screening for ACE, Racine et al. point out that this approach is "deficit-focused rather than strength-focused" and recommend that a trauma-informed approach should incorporate "a strengths-based component so that resiliency factors are identified."7 O&P practitioners do not test for communicable diseases, and instead implement precautions in all encounters that limit the spread of pathogens. Similarly, "being trauma-informed is a universal precaution that should be used with all patients whether the ACEs questionnaire is administered or not."7 This involves treating every patient in ways that minimize the potential for triggering past trauma, acknowledging their autonomy through shared decision-making, and supporting constructive behaviors that build on their resiliency.
ACE and O&P
Felitti et al. report that "longitudinal follow-up of adults whose childhood abuse was well documented has shown that their retrospective reports of childhood abuse are likely to underestimate actual occurrence."1 Combined with the reality that risky health behaviors contribute to diseases that we see commonly in O&P practice, it is likely that a much higher percentage of our patients have experienced abuse, neglect, or other household dysfunction as a child. Additionally, we often see elderly patients who are feeling the cumulative effects of risky health behaviors. The effects of social, emotional, and cognitive impairment over many decades results in abuse survivors reaching older age "in poorer health, with fewer social supports, and under more financial stress. They have more difficulty coping with illness and pain."3 Decreasing independence and the power imbalances within the medical system may also limit patients' choices and control, causing them to respond negatively to well-intentioned attempts to provide care.
It is both heartbreaking and intimidating to realize that a large percentage of the population has experienced some form of abuse and that survivors of trauma inevitably make their way into our exam rooms. O&P practitioners are not trained to provide trauma services or counseling. Fortunately, TIC does not require that we include trauma screening or provide trauma-specific interventions as part of our encounters. Simply being aware of the effects of child abuse and trauma can help us remember to treat all patients with sensitivity and compassion. We see only a small portion of patients' experiences and can never fully know their stories. We must rely on what they choose to reveal or what we observe. Behaviors that frustrate us most as practitioners may be the consequence of negative experiences long ago, outside their current conscious awareness, and far beyond the scope of our practice.
Many of our patients are dealing with pain they will never express to us and are accustomed to a healthcare system that reinforces patterns of dysfunction and helplessness. Recognizing that some of the most difficult behaviors we observe may be reactions to these negative influences (and perhaps even evidence of their resilience), can help us avoid reacting in ways that further disempower them. Purkey et al. observed that "supporting a patient's evolution from passive victim to active, motivated participant is one the most rewarding aspects of a healthcare provider's work. This might be the first time someone has highlighted these strengths to a patient."6 May we strive to be that kind of partner with our patients.
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.
1. Halpern, J. 2003. What is clinical empathy?. Journal of General Internal Medicine 18(8):670-4.
3. Cations, M., K. E. Laver, R. Walker, A. Smyth, E. Fernandez, M. Corlis. The case for trauma‐informed aged care. International Journal of Geriatric Psychiatry 35(5): 425-9.
4. Felitti V. J., R. F. Anda, D. Nordenberg, D. F. Williamson, A. M. Spitz, V. Edwards, J. S. Marks. 1998. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine 1;14(4):245-58.
5. Bryant, D. J., M. Oo, A. J. Damian. 2020. The rise of adverse childhood experiences during the COVID-19 pandemic. Psychological Trauma: Theory, Research, Practice, and Policy 12(S1):S193-S194.
6. Purkey, E., R. Patel, S. P Phillips. 2018. Trauma-informed care: better care for everyone. Canadian Family Physician 1;64(3):170-2.
7. Racine N., T. Killam, S. Madigan. Trauma-informed care as a universal precaution: beyond the adverse childhood experiences questionnaire. JAMA Pediatrics 1;174(1):5-6.
8. Berliner L., D. J. Kolko DJ. Trauma informed care: A commentary and critique. Child Maltreatment 21(2):168-72.