Pain and the Patient Experience

PAIN EXPERIENCE 76 Pain and the Patient Experience Susan E. Mazer Fellow at the Institute for Social Innovation at Fielding Graduate University – Santa Barbara, California Corresponding Autor: Susan E. Mazer, Ph.D. E-Mail Address: [email protected] Abstract With the continuing opioid epidemic, there is an urgent call for alternatives to narcotics and other addictive medications. Historically, pain theories have moved through the many stages of medicine, predating the scientific method and following through past Descartes declaration that the mind and the body do not influence each other. This article reviews pain theories and practices moving into the era of the Patient Experience, multi-modal strategies for mitigating suffering, and the impact of the patient’s environment and social/cultural milieu informing and supporting the patient’s own capacity to cope and manage pain. Methods: A broad review was done of studies and critiques that bring together the historic and current attitudes and beliefs about pain, social-ethnic-racial assumptions, to evaluate the state of pain management as medication-driven solutions begin to fail as first options. In addition, the dominant role of mean-making and caregiver beliefs is discussed as they become more relevant in seeking alternatives to opioids. Conclusion: I). The debate regarding what exactly pain is continues to be between the physical or biochemical domain and the mental-emotional- cognitive domain that brings meaning to the experience. II) The Patient Experience of pain is lived rather than theorized, and is known fully only by the patient and is a private experience informed by the unique circumstances and history of each patient. III) The merging of neurological and psychological factors in pain management is well documented but not optimized in strategizing effective pain control methods. IV) Additional studies are needed to better understand the balance between psychological-social-and-clinical factors to arrive at more effective strategic processes in pain reduction. Keywords: patient experience, pain management, placebo and nocebo response, the meaning response, biopsychosocial factors in pain management, distraction therapy REVIEW PAIN EXPERIENCE 77 Introduction patients’ coping skills. More than medication, the emotional and cognitive Today, in the 21st Century, pain power of perception and meaning making remains as much a human mystery as it did together with directed attention, becomes when the ancient Greek philosopher the mechanism for patients to actively Aristotle proclaimed that pain was not participate in their own pain management. physical, but emotional. It is such a deeply private experience, that language is often The Meaning Response inadequate in being able to accurately describe pain. Even physiologist Max von Melzack and Wall (1965) first Frey’s detailed Specificity Theory, which identified the role of meaning in the hypothesized in 1895 that every organ has experience of pain. However, in recent its own pain cue and every pain can be years, the issue of patient perception has assigned to a place on the human body, taken a prominent place in the literature. made it no easier for caregivers to figure out Traced to neurological activity, this has put how to relieve suffering (Moayedi & Davis, the focus on the whole patient in terms of 2012). physical, emotional, mental, and cognitive capacity. The meaning response, often Since the advancement of referred to as the placebo effect, provides a pharmacological pain relief, the use of real-time example of the role of belief and drugs has become the overwhelming meaning. Medical anthropologist Daniel preference for pain management. However, Moerman (2002) points to the meaning the challenge of understanding and response as physiologic or psychological prescribing alternative to opioids, including effects of meaning in the origins, treatment, complimentary therapies, has yet to be fully and recovery of illness (2002). He also calls integrated into practice in the U.S. and the meaning response an autonomous many parts of the world. Right now, response, one generated within and by the “alternative” tends to translate into lower or patient’s own powers to heal. The role of controlled dosage, which is not always placebo, which is traditionally used as a effective for what patients need. In their sham inert medical substance presented to a effort to understand pain mechanisms, patient as an actual medication to cure or psychologist Ronald Melzack and treat some condition. Randomized control neuroscientist Patrick Wall (1965) trials have been the primary users of observed that some patients with little placebos. However, the question was injury suffered from extraordinary pain and limited to whether the testing medication others with extensive damage suffered would prove more effective than subjective little. This led to the Gate Control Theory, expectations of the patient (Johnson, 2005). where patients’ capacities to modulate their According to Colloca and Grillon (2014) pain were based on their experience as well Placebo analgesia relieves pain “simply by as genetic makeup. Shortly thereafter, virtue of the anticipation of a benefit.” A Melzack with Kenneth Casey (1969) review of clinical trials using a placebo expanded Gate Control Theory to identify (Meissner et al., 2007) suggest that three distinct factors in the experience of placebos mimic the action of active pain. These include the somatic, or treatments and effect measurable change in sensation of pain, the perception of health status, not merely symptoms. Social pleasantness or unpleasantness (which can support and observational learning also lead to the fight or flight response), lead to analgesic effects. This is not to followed by “appraisal, cultural values, imply that acute or severe pain does not context, and cognitive state.” These steps require medication for relief. Rather, it influence each other and, together, motivate suggests that the patient’s mind can REVIEW PAIN EXPERIENCE 78 modulate the pain and increase (or medication use, and prognosis in dealing decrease) the effectiveness and needed with chronic pain. There is not enough dosage using methods that are not evidence to determine sex-specific pain pharmaceutical. Patients’ pain is their protocols, but considerations for gender reality, defined not by their diagnosis or along with other cultural issues will prognosis, but rather their experience. improve outcomes (Cepeda et al., 2003). Furthermore, the visceral nature of pain The existing conflict between women takes on the meaning the patient imparts to (especially ethnic minorities and the it in the moment. A positive response to a elderly) who report pain, and male placebo is not caused by the substance, but physicians who do not take them seriously, rather is generated by the patient’s own has yet to be openly acknowledged or belief, experience, and expectations. In resolved. The American Society of addition, it is the support and Anesthesiologists reported (2015) that encouragement of the caregivers, including women are more likely to experience more physicians and others, that enhance the pain than men. However, they are reluctant effectiveness of all treatments, including to report it and they are often ignored or those related to patients’ powers to heal. A dismissed. Lovering (2006), in a 2015 study published in the journal Pain collaborative study on cultural beliefs and indicated that between 1990 and 2013, the practices that involved woman from placebo effect was shown to increase while different cultures of birth and heritage, the effectiveness of drugs had diminished, found that the gap between how patients putting into question whether respond to pain, the willingness to report pharmaceutical solutions are the best their pain, and the beliefs of the solution for pain (Tuttle et al., 2015). nurse/physician had profound influence on whether pain was actually relieved. Hidden Factors of Culture and Gender Anthropologist Mark Zborowski (1952) posited that social and cultural The inequality that exists in pain influences determine what he called “pain treatment between white, middle-income expectancy” and “pain acceptance.” Pain patients and those belonging to ethnic expectancy sets up a patient to perceive minorities, such as Hispanics and Asians, both avoidable and unavoidable pain. Pain has been well acknowledged (Mossey, acceptance is about the inevitable, 2011). The reasons behind this discrepancy something that people must deal with as a are complex. However, social and ethnic result of their own behaviors or cultural influences may inform patients’ willingness mandates. For example, some women opt to report pain, request help or medication, for natural childbirth as a social or religious and ultimately, make public any level of rite of passage, while others choose discomfort. medication. Aside from expectations and Gender differences also play a acceptance, however, there is pain significant role in determining the apprehension and pain anxiety, both of perception and expectations around pain, as which impact the character of the pain, such well as the effectiveness of pain as its intensity, duration, quality of management. Greenspan et al. (2007) sensation, and the emotional response of concluded that, “psychological and social the patient (Zborowski, 1952). variables powerfully influence pain and can often explain more the variance associated The Patient Environment is the Patient with pain than do biological

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