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]


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 , 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 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


Introduction patients’ coping skills. More than medication, the emotional and cognitive Today, in the 21st Century, pain power of 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 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 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 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 . 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 variables.“ The Experience same is true of gender roles in respective expectations and obligations of men and Similar to pain, the patient women. This impacts self-report of pain, experience lives within the expectations,

REVIEW PAIN EXPERIENCE 79 , and meaning derived by the functioned as an anxiolytic and reduced patient in real time. By the time patients pain. Their findings can be added to the report about their experiences, they are in large body of studies that show music to be the recent historic past, recalled in ways not only a positive distraction, but also a that may leave out the small details, but also companion beyond the hospital to manage may exaggerate the most negative events. chronic pain at home. Nothing influences the patient experience Environmental interventions more than the environment in which they focused on reducing pain and suffering find themselves. The physical environment must have cross-generational and cross- surrounds patients 24-hours a day. It is what cultural appeal. Musical preferences of they hear, see, and smell. It is what touches patients reflect personal history, events, them and what is beyond them. And, the people, and peer identity. They are best patient environment is a totality, it is a when chosen by the patient. However, “...whole (person-in-environment system) using music that is unfamiliar, but feels [which can be described as] people familiar allows patients who are unable to embedded in their physical, interpersonal, self-select or who are with family and and sociocultural environments. One must friends will create an inclusive treat the totality rather than deal with one environment. Popular music or someone aspect of the whole (person or else’s music preferences may inadvertently environment) without treating the other.” cause stress, anxiety, or sadness depending (Craik, Price, & Walsh, 2000). on the circumstances. Therefore, music that Malenbaum et al. (2008) found that is comforting without triggering a negative the patient environment could either emotional response allows patients respite increase or lessen pain. They concluded from ongoing worries and creates an that, “The visual and sensory settings in unbiased, positive musical valance. which we usually treat pain patients The effectiveness of multi-modal probably do little to relieve pain and may stimuli increases effectiveness in relieving exacerbate pain.” Mitigating some of the pain. Kline (2011) found that exposure to most invasive stressors by masking noise nature images together with music was and providing access to natural landscapes, most effective in relieving acute pain than can contribute to a positive space that may either used alone. The mechanism for this lessen the perception of pain. The was linked to distraction theory and the purposeful design of the patient intensity of engagement. environment has been the basis of nursing practice starting with Florence Nightingale Immersive Technologies in the 1800s. Removing or minimizing environmental stressors and providing and Research to date has shown that optimizing positive distractions, such as immersive technologies, such as virtual nature and music, is the key to optimal pain reality (VR), calm and distract patients, management. That means if an lessening the sensation of pain. VR has environmental stressor like noise is been shown to be effective in providing removed, something positive, such as relief from pain regardless of what kind of music, must be added. External positive pain it is. In a pilot study conducted by distractions mitigate patients’ internal self- Cedars-Sinai Medical Center, Los Angeles, generated fear and confusion. Finlay and Calif., in collaboration with Samsung, adult Anil (2016) found that music enhanced pain patients reported a 24 percent drop in pain management capacities and, by creating a scores after using VR goggles to watch positive valance, helped patients manage calming content (Mosadeghi et al., 2016; the experience of time, which can be Tashjian et al., 2017). Other initial studies oppressive. Happy relaxing music with pediatric patients found that playing

REVIEW PAIN EXPERIENCE 80 immersive video games provided such a powerful distraction that their pain also Giving Control to Patients dropped significantly. The research team under the direction of Dr. Walter Meyer at Today’s patients want to be self- Shriners Hospital for Children in efficient in managing their own conditions. Galveston, Tex., believes that when Calling for a new prescription does not put children’s attention is drawn into a virtual the control back into the patient’s hands or and three-dimensional world, less attention mind or body. The use of complementary is available to process incoming pain therapies are now more prevalent because signals. As a result, children with severe they are not only effective, but they allow burn injuries may experience up to 35-40 patients to participate in their own percent less pain and discomfort during recovery, guide their own treatment plan, daily baths and wound dressing changes and become functional according to their (Hoffman et al, 2011). A further benefit of own values and preferences (Baker, 2017). using virtual reality is reducing anxiety Patients’ capacity to cope with pain, the levels that patients feel before and during level at which they are comfortable, if not wound care sessions. Virtual reality may pain free, is directly related to their also improve patient cooperation with the expectation, emotional affect, acceptance wound care nurse during wound and trust in their treatment. Studies that debridement. have looked at mood and attitude have repeatedly shown this correlation. Power of Imagination Understanding and designing the context in which patients must manage their The power of imagination that pain is a key to optimal levels of medication allows a viewer to be lifted into a different and function. The less medication and the place is what makes a media experience greater sense of control on the part of the both attractive and effective. However, to patient, the better the outcomes. More so, do that, the content must provide one or providing patients with tools that can help more of the four components put forth by them learn how to manage their own pain Ulrich (1984) and Kaplan and Kaplan will lead to better long-term outcomes. (1989): 1) It must feel like a patient is being There is a financial and human price taken to another place, sufficiently different to pay for the use of pharmaceutical from where they normally are; 2) It must be solutions, as well as a cost benefit for the coherent, understandable; 3) It must be use of alternative methods. Side effects complex enough to be engaging, have a from morphine, oxycodone, Percocet, and quality of “fascination”; and 4) It must be other opioids and opioid substitutes are compatible with the patient and serve the numerous and can lead to death. In the expectations or purpose of the environment. elderly, they are particularly dangerous in “Fascination is drawn by stimuli comparison to non-steroidal anti- that are reasonably complex, coherent, and inflammatory drugs (NSAIDS) including a legible and yet hold some mystery.” (de greater risk of having a cardiovascular Korta et al., 2006). This definition makes event, GI bleeding, four times as many real why overly familiar images may not be fractures, increase risk of additional engaging. The variety of natural landscapes hospitalization for an adverse drug event, can offer both complexity and variety to and, at the worst, death. qualify for the fascination as defined. And Clinical outcomes of using nature being able to understand and make meaning imagery and music reflect a reduction in the of the visual journeys provides the need for pharmacological intervention in coherence that transforms the physical some patients by as much as 29 percent environment into a healing environment. (Rudin et al, 2007). Studies (Devine, 1996)

REVIEW PAIN EXPERIENCE 81 also reflect alternatives to pharmaceutical 2011 that “Pain beliefs correlate with intervention can reduce side effects and outcomes.” On the other side, “Pain hospital length of stay by an average of 1.5 Catastrophizing,” which occurs when days. Since hospitals are responsible for the patients exaggerate its threat and believe cost of additional patient days beyond what they cannot control it (Keefe et al., 2000), Medicare pays, additional savings could be makes it difficult for patients to manage significant. The average daily inpatient cost their pain. Therefore, creating a healing is $1,986. (Kaiser State Health Facts, environment, offering methods that 2015). empower patients’ own restorative capacities, and engaging with patients in The use of non-pharmaceutical pain understanding their individual management protocols carries few risks and circumstances is the optimal systemic is far less expensive. However, more process of addressing acute and chronic important, it puts patients in control of their pain. own health and provides effective and In his book, The Culture of Pain, meaningful tools to be used following David Morris (1991) points to the long hospitalization or any procedure. trajectory, from to opioids that moved pain from being an emotion to being a Where We Are Now disease deserving of its own specialty and clinic. And yet today, the treatment for pain In January 2017, the Joint considers first the physiology, the Commission called for comments on new neurological pathway to and from the brain. standards on acute pain assessment and Patients in the U.S. have come to expect management standards for its hospital (and demand) immediate relief without accreditation program in the U.S. and engaging in meaningful dialogue to address abroad. Noticeable is the second standard the complexities that contribute to pain and listing that requires hospitals to promote suffering. The most powerful pain “access to non-pharmacologic pain management tool is the patient him/herself. treatment modalities (this may include Rather than conceptualizing the mind-body alternative modalities, such as, connection as being forced or theoretical, chiropractic, relaxation therapy, music the unification of physical, emotional, therapy),” (Baker, 2017). Acknowledging spiritual, and psychosocial factors defines the ways in which pain is experienced and the whole person experience and holds the managed by the patient offers multiple key to pain management. All evidence and methods for assisting patients. Whether studies around pain suggest that pain is an using distraction therapy, relaxation experience to be managed in its many practices, guided imagery, or self-selected dynamics by multi-modal methods with therapeutic modalities, patients come with patient experience being at the center. At their own arsenal of personal, physical, this point, with the newest research in spiritual, and emotional strength. The neurology and the use of brain imaging inherent bond of mind and body is key to technologies, we have a better relieving pain and mitigating suffering. understanding of how inherent responses Research has found that patients’ capacity trigger a chain of neurological responses. to manage their own pain is directly related Self-management of pain is moving from to how they perceive their own ability to being a hope to a tested In the future, control their pain. Keefe et al. (2008) medications may be provided according to concluded that self-management of pain the complexities of coping and pain succeeds in part because patients believe tolerance. Furthermore, non- that they can control their own pain. The pharmaceutical strategies have been shown National Institute of Medicine stated in to be effective and with little risks.


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How to cite this Article: Mazer, S. E. (2018). Pain and the Patient Experience. International Journal of Psychology and Neuroscience, 4(2), 76-84.

Received: 14REVIEW /07/2018; Revised: 19/08/2018; Accepted: 25/08/2018; Published online: 31/08/2018; ISSN 2183-5829