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'On The Margins' of Healthcare: Access For Those Experiencing Pain

Author's Note: This article was written during the peak of the pandemic (07/2020), a time in which marginalization became overtly obvious to me and led to writing what follows.


Introduction

At Tame Pain, we often discuss the multifactorial nature of pain through a BioPsychoSocial (BPS) framework. Although many seek to “trichotomize” this framework by isolating biological, psychological, and sociological components, we do not recommend this approach. With that said, it’s easy to overlook potentially influential variables that may be hidden in the context of the framework we operate within. Said differently, there may be variables influencing someone’s pain experience that aren’t often provided a spotlight. For many in our society, especially in the United States, we are taught at a young age when we have health-related issues to seek out consultation from a healthcare professional.


Perhaps this indoctrination becomes apparent from birth when many are born in hospital systems, later followed by a pediatrician until around the age of 18, and then a primary care physician. In my realm, often someone presents with pain related suffering seeking consultation for their experience. My focal point is often the individual’s experience -- and it is easy to become myopic, thinking only of what’s directly in front of me. Recently I’ve begun thinking of larger influential variables affecting a person’s pain experience, some of which may be partially or completely outside of their control. Examples include race/ethnicity or social-economic status (SES) affecting healthcare seeking behavior for persistent

pain and the quality of care provided.


In our current society, we observe systemic issues with marginalization, defined as

“treatment of a person, group, or concept as insignificant or peripheral.” Of all of the facets of society we’d hope to minimize such influence, healthcare is at the top of the list in my opinion. However, as we will discuss this month, this is an area we still need to improve upon. Given my specialty and expertise is centered around helping those with their pain-related suffering, I will frame this discussion to the context of

those seeking care for pain-based issues and how marginalization is affecting

care. For this month’s research review, we will discuss a topical review article by Craig et al, Pain in persons who are marginalized by social conditions.


The authors open with an impactful first line, “Pain is often poorly recognized,

inadequately assessed, and unsuccessfully managed among people in mainstream

society, but this is particularly the case for people who have been historically,

economically, and socially marginalized, although access to pain management is considered a basic human right.” [emphasis mine] Craig 2020 When discussing basic human rights, the attainment and sustainment of health is indeed considered such a right, regardless of location within the world. The World Health Organization states, “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.” [emphasis mine] WHO


In 2011, here in the US, several organizations collaborated to create the National Pain Strategy. The backdrop to this venture was a nation in crisis related to the opioid epidemic. The primary objective of the NPS is to decrease overall pain prevalence and associated morbidity. Gross 2019 How are we doing with implementation of the NPS? This is difficult to answer; we appear to be

advancing some initiatives, while others not so much (see table below for strengths and weaknesses of the NPS). We are caught between two major crises, a pain crisis and opioid crisis. The anchor of policy and legislation currently appears heavily attached to reducing opioid usage and co-occurring issues like addiction. Although this is indeed one aspect of the “pain picture”, this isn’t

addressing the pain crisis but rather a specific intervention targeted at controlling pain.

As Gross et al state, “The complexity of pain is enormous, from its personal experience to its context in a dynamic social, economic, and political macro- and microsystem.” Gross 2019 One of the major disparities for addressing pain related suffering is healthcare access.


Purpose


Craig et al state their article, “…addresses the challenges of providing access to pain management for people who have been socially and economically marginalized and emphasizes the need for care at the intersection of 2 bodies of knowledge: the broad biopsychosocial model of health, given that social determinants of pain are of conspicuous importance in these populations and the growing understanding of the intersections between trauma, violence, substance use, and pain.” Craig 2020


Examining Health Disparities


There are innumerable attributes for which a cohort may become socially marginalized, these included but are not limited to: race, ethnicity, indigeneity, SES, gender identification, sexual orientation, prior or current incarceration, and intellectual ability - to name a few. Social determinants of health (SDoH) can act as scaffolding for this conversation, demonstrating there are influential factors beyond the individual influencing sustainment of health. Healthy People is a U.S. government-based initiative focused on creating 10-year national goals for improving health of all Americans. According to Healthy People 2020 (note we are now on 2030 - see above link), “Social determinants of health are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.” There are five key areas to this initiative (see diagram below). We will primarily be discussing Health & Health Care, which includes:

  • Access to Health Care

  • Access to Primary Care

  • Health Literacy

Healthy People also tracks various metrics related to “health disparities” in the United States, i.e., outcomes observed to a greater or lesser extent in a particular group of people versus comparison groups. Although disparities may be identified between race/ethnicity, sex, gender identity, age, SES, etc., we have to examine why these disparities may exist and how to address them appropriately. The U.S. Census is one example where we gather a significant amount of data on US citizens in order to better inform policy and decision making. A major goal of Healthy People 2020 is to bring health equity to all in the US.


According to Healthy People, health equity is defined as “attainment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities.” [emphasis mine] Healthy People


Healthy People has a health disparities widget on their website where statistics

on Leading Health Indicators (LHI) such as meeting physical activity guidelines

or having medical insurance can be reviewed based on known categorical disparities mentioned previously. As an example, we can review the LHI – Persons with medical insurance (percent, under 65 years) based on race/ethnicity.

The website then populates a bar graph demonstrating what percentage of folks under the age of 65 years from each race/ethnicity had medical insurance in 2018. The bar graph demonstrates a downward trend from Asian only to American Indian or Alaska Native only.


Additionally, the website creates a table with relevant figures. The table has been adapted here (see below).

Reviewing the table reveals Asian only had the highest percentage of folks under the age of 65 years with medical insurance in 2018 at 92.6%. Followed by Whites only, not Hispanic or Latino at 92.2%, Native Hawaiian or Other Pacific Islander only at 90.6%, 2 or more races at 89.9%, Black or African American only, not Hispanic or Latino at 87.9%, Hispanic or Latino at 79.9%, and American Indian or Alaska Native only at the lowest of 71.4%. We can also see the percentage difference of each race/ethnicity compared to the highest subset with medical insurance (Asian only) by reviewing the “Disparity” column. For example, the percentage difference between the highest race/ethnicity with medical insurance (Asian only) to the lowest (American Indian or Alaska Native only) is 29.8%.


So, we are aware of disparities in health based on data; specifically, for our discussion medical insurance disparities based on race/ethnicity. One can imagine the lack of medical insurance likely affects folks seeking out healthcare services. However, the question becomes what can we do about this? How do we improve upon these disparities in health? This is a multifactorial question that I won’t pretend to have the answer to in this article. Major initiatives, like Healthy People, are trying to figure this out. However, Craig et al likely proposes a different perspective than most would assume. The authors state,


“Caution should be observed when characterizing people in terms of shared attributes. Use of labels creates a risk of stereotyping and overgeneralization—substantial individual differences can be expected in pain experience and its management within groups of people who share experiences of marginalization; in any group of people described as marginalized, many are healthy and resilient.” Craig 2020


We appear to be at an impasse in this regard. On one hand, we categorize to better understand. However, on the other hand we are tribalistic by nature. How

do we ensure the data we gather via categorization for understanding isn’t then utilized for marginalization? As my friend, Dr. Sam Hamilton, recently reminded

me - perhaps we don’t, can’t, and instead follow a line from Wittgenstein in Tractatus Logico-Philosophicus. Line 6.54:


“My propositions are elucidatory in this way : he who understands me finally recognizes them as senseless, when he has climbed out through them, on them, over them (He must so to speak throw away the ladder, after he has climbed up on it.) He must surmount these propositions ; then he sees the world rightly.”


Perhaps we have learned sufficient information from observing health disparities with these categorizations of humans. Maybe we would be well served to do away with them, for the good of society as a whole. At minimal, we need to find ways to ensure we don’t bias our own worldview and perpetuate placing folks “on the margins”. A counter to this, we need to take time examining socially marginalized populations in hopes that awareness will help play a role in minimizing effects on health disparities while eradicating marginalization.

Shining a spotlight on socially marginalized populations


Craig et al raise an important point on the lack of studies regarding socially marginalized populations. Often simply due to exclusion criteria of studies, folks who are marginalized are often left out of studies on the topic of pain; one example being folks labeled with mental health issues. These sorts of methodological issues constrain our external generalizability of findings. The authors state,


“There is no reason to believe that, on average, people who are marginalized would not be exposed to the same types of painful injuries and diseases as the population at large, as well as being subjected to additional pain arising from environmental challenges, lifestyle, behavioral health practices, medical comorbidities, and inadequate care specific to a subpopulation.” Craig 2020


The authors then outline a series of examples of marginalized populations dealing with the topic of pain. We will briefly discuss each population and a few associated citations provided by Craig et al.:


A. Homelessness – According to the National Alliance to End Homelessness, “Seventeen out of every 10,000 people in the United States were experiencing homelessness on a single night in January 2019 … These 567,715 people represent a cross-section of America. They are associated with every region of the country, family status, gender category, and racial/ethnic group.” State of Homelessness Landefeld et al examined the pain characteristics of those over the age of 50 experiencing homelessness, defined according to the HEARTH Act. 350 adults were included with a median age of 58 (range 50 – 80 years of age). The authors found a high prevalence of moderate to severe pain in their cohort, with 17.2% reporting moderate pain and 39.4% with severe pain within the past week. Almost half of the participants (46.8%) reported experiencing persistent moderate to severe pain. Of the participants experiencing pain, 79.9%reported the pain experience being persistent (> 3 months). The authors state, “Our data demonstrate that chronic pain is not only common, but that it has detrimental effects on life enjoyment and general activity in older homeless adults. By decreasing functioning, chronic pain presents yet another hurdle for marginalized and under-resourced individuals to receive much needed health care and social services. In addition to causing physical and emotional distress, chronic pain can hamper individuals’ abilities to obtain and retain employment and stable housing, let alone to manage other health problems.” Landefeld 2017


B. Torture Survivors – Amris et al discusses the unique pain care needed for individuals who have been tortured. According to the authors, the United Nations define torture, “…as the intentional infliction of severe mental or physical pain or suffering by or with the consent of the state authorities for a specific purpose.” Amris 2015 Although we are aware of the trauma inflicted by torture, we struggle to aid these individuals for full reintegration into society by meeting rehabilitative and other healthcare needs. The authors state, “The aim is to restore, as far as possible, torture survivors’ independence; their physical, mental, social and vocational ability; and to facilitate full inclusion and participation in society. In order to do this, each State party should adopt a long-term, integrated approach in which specialist services for survivors of torture or ill-treatment are available, appropriate and readily accessible. This is not yet realized anywhere in the world.” Amris 2015 As healthcare professionals, unbeknownst to us, we may come into contact with torture survivors as refugees or asylum seekers. The authors estimate a high prevalence of persistent pain (78-83%) in this population. One major issue is stigmatization in this group due to attempted siloing of persistent pain to primarily a “tissue issue” or trauma-induced psychological issue, which misses the mark with pain as a multifactorial experience that we often discuss at Tame Pain. The authors state, “Our understanding of persistent pain from torture is seriously lacking and research is needed in all areas. Such research is essential to advance theory development and improve outcome of intervention. Research in chronic post-torture pain should be clinically relevant as well as grounded in evidence and theory, focusing on pain mechanisms underlying chronic pain conditions following torture, and their relationships to torture methods applied and specific torture induced lesions.” Amris 2015


C. Indigenous Populations – These are “… communities that live within, or are attached to, geographically distinct traditional habitats or ancestral territories, and who identify themselves as being part of a distinct cultural group, descended from groups present in the area before modern states were created and current borders defined. They generally maintain cultural and social identities, and social, economic, cultural and political institutions, separate from the mainstream or dominant society or culture.” WHO Craig et al outline how indigenous populations deal with extreme health disparities; as denoted above by our medical insurance discrepancy here in the U.S. Typically these populations are reported to have higher incidence of pain and pain related disability but are less likely to see out treatment. Craig cites several articles but we will focus on one by Jimenez et al, A Review of the Experience, Epidemiology, and Management of Pain among American Indian, Alaska Native, and Aboriginal Canadian Peoples. The authors report American Indians & Alaskan Natives (AI/ANs) account for 1.5% of US population (4.5 million) and are spread throughout 35 sates. Additionally, 34% of these individuals reside on federal reservations with the remainder in urban locations. A major known disparity is economic status. The authors report more than 25% are listed below federal poverty level compared to 9% of whites. Jimenez 2012 Although AI/ANs have federal access to free healthcare if they are members of federal protected tribes through the Indian Health Service (IHS), there remains a large disparity in access. The authors report ~1.5 million AI/ANs receive care through the IHS and many are left in limbo due to either not being members of federally recognized tribes or located too far away from IHS locations. For perspective, the authors state, “An estimated one-third of AI/ANs younger than age 65 lack both private insurance and access to care through the IHS, compared to 16.7% for all people under 65 years of age in the U.S.” Jimenez 2012 In addition, underfunding is being reported as well as lack of specialty services for scenarios such as persistent pain. With this information in mind, the authors conducted a review, including studies examining the pain experience and epidemiology, management, and healthcare utilization for pain. Major findings include:

  • Pain symptoms and painful conditions are highly in AI/ANs and more prevalent when compared to general U.S. population

  • Culture may influence how AI/ANs experience and communicate about their pain, potentially leading to inadequate healthcare: “The literature on medical interactions involving racial and ethnic minorities has long argued that patients from different cultural backgrounds may interact with medical providers around pain in distinctive ways. Such differences have been observed even among people who are assimilated in many other ways into mainstream U.S. society. Furthermore, particular tribal populations can bring distinctive communication patterns to the medical encounter, including culturally specific metaphors, disease models, word usage, avoidance norms, and narrative styles. Taken together, difficulties in communicating about pain in the clinical setting appear to contribute to inadequate pain management among minority patients in general, and AI/ANs in particular.” Jimenez 2012

  • Patient-healthcare professional communication was demonstrated as an area necessitating attention, while also challenging potential biases held by healthcare professionals. “AI/ANs perceive medical providers as uninterested in their pain, and they lack faith in providers’ abilities to treat it. Conversely, medical providers perceive these patients as exaggerating their pain, a perception that detracts from patient-provider interaction.” Jimenez 2012

  • Finally, similar to prior discussions in this month’s article, we need to include these individuals in more research. More studies will hopefully improve our understanding of their pain experience and needs from healthcare professionals to ensure adequate care is being delivered universally.

D. LGBTQ2S (Lesbian, Gay, Bisexual, Transgender, Queer, and Two-Spirit) – Unfortunately, these individuals face significant barriers to healthcare access and utilization. According to Craig et al, ”Despite a paucity of research on the prevalence of chronic pain among people in LGBTQ2S communities,

there is ample research on the multiple barriers LGBTQ2S people experience accessing and receiving health care.” Craig 2020 Research does appear to be showing increased health risk issues such as smoking, mental health distress (depression and suicide), and disability; demonstrating a need for timely and adequate healthcare. One article Craig et al cites is from 2017 by Draggon et al, Transgender Medicare Beneficiaries and Chronic Conditions: Exploring Fee-for-Service Claims Data. With estimates of ~1.4 million individuals in the United States identifying as transgender, we need to ensure their needs are equally met, as should be the case for any American. However, even our population estimates may have flaws, as Draggon et al outlines: “Until transgender people feel comfortable, safe, and supported in accessing healthcare, it is likely to remain challenging to estimate the size of the transgender population, let alone collect data adequately, especially among older adults who fear discrimination.” Draggon 2017 The authors go on to examine Medicare Fee For Service (FFS) healthcare utilization amongst transgender individuals from either aging into Medicare coverage (65 years or older) or qualifying through disability (18-64 years of age). The authors state, “This article illuminates the chronic disease burden in the FFS transgender Medicare beneficiary (TMB) population and differences in chronic diseases in those entitled on age versus those entitled on disability.” Draggon 2017 Overall, the authors had a sample of 7,454 transgender beneficiaries and 39,136,229 cisgender beneficiaries

(cisgender, meaning gender identity matches sex assigned at birth). There are a lot of meaningful findings from this article, however for our discussion we will focus on a few factors. The authors denoted an overall increased prevalence of mental health distress in transgender compared to cisgender beneficiaries. For example, anxiety was noted for 62.4% transgender beneficiaries vs 20.2% cisgender; similarly, for depression at 67.4% compared to 22.3%. Additional mental health distress categories included: bipolar disorder, personality disorders, post-traumatic stress disorder, schizophrenia and other psychotic disorders – transgender beneficiaries indicating higher prevalence than cisgender for each category. In regard to persistent neurological and pain issues, transgender beneficiaries showed a higher prevalence than cisgender for all measured categories. These included epilepsy (10.5% vs 3.3%), Fibromyalgia (37.2% vs 20.7%), and migraine (14.8% vs 4.4%). Another category examined with potential long-term health risks was obesity, transgender beneficiaries showed a 31.3% prevalence vs 17.2% in cisgender beneficiaries. As is likely becoming apparent to the reader now, there’s a need for adequate healthcare for these individuals but unfortunately, we are seeing inadequate access and delivery of care. The authors state, “Systemic issues of discrimination and pervasive distrust of healthcare providers may lead transgender people to delay or defer even basic healthcare for prevention and treatment of chronic conditions.4,7 Some transgender people may also delay transition-related care that is essential to their health and well-being, which would preclude them from being visible in claim records. As a result, our study may underestimate the number of TMBs—they may simply avoid care or the care that they receive may not be captured by the ICD-9-CM codes used in our research.” Draggon 2017 Although we have focused on transgender individuals for this article, these disparities are likely common amongst the LGBTQ2S community.


E. Refugees – The United Nations High Commissioner for Refugees (UNHCR) define a refugee as, “A person forced to flee their country because of violence or persecution.” UNHCR Craig et al note these individuals often present with multiple prior traumas, post-traumatic stress, as well as persistent pain. In 2019, the US resettled 31,250 refugees, denoting a necessity for healthcare access and accommodation to meet needs for these individuals. UNHCR One article cited of particular interest for this month’s writeup is the 2015 article by Teodorescu et

al, Chronic pain in multi-traumatized outpatients with a refugee background resettled in Norway: a cross-sectional study. Given the context of becoming

a refugee, we see similar issues facing these individuals discussed above in post-torture scenarios. Teodorescu et al state, “The highest rates of chronic pain are found in torture exposed refugees, and chronic pain in tortured refugees has been found to have a strong impact on daily functioning.” Teodorescu 2015 PTSD and persistent pain appear to have a bidirectional relationship. The authors state, “Thus, in the case of chronic pain, physiological arousal, cognitive catastrophizing, and behavioral avoidance components contribute to the maintenance of PTSD, while in the case of the PTSD, physiological arousal, emotional numbing and behavioral avoidance components contribute to the maintenance or aggravation of chronic pain.” Teodorescu 2015 In this particular study, the authors included 61 (36 men and 25 women) participants from psychiatric outpatient clinics in Norway who reported a previous traumatic event and were permanent residents in Norway as well as proficient in Norwegian. The participants originated from 21 countries from 4 continents. Participants were interviewed and provided with a questionnaire to complete on their own. The authors assessed: national origin, employment, having friends, social integration in Norway, social integration in the ethnic community (non-Norwegian), Life Event Checklist (LEC) [potential exposure to traumatic event(s)], PTSD diagnosis, persistent pain and relatedness to PTSD, depression, anxiety, amongst other factors detailed in the article. The primary aims of the study were to assess frequency and location of persistent pain co-occurring with PTSD, compare the effects of individuals presenting with vs without persistent pain on aforementioned variables, and compare individuals presenting with vs without PTSD effect on persistent pain locations. The authors found 82% of participants (50) had a current diagnosis of PTSD, and almost all (98%) participants reported persistent pain in, at minimal, one location. The mean number of locations reported with persistent pain was 4.6 (SD+/- 2.1) with prevalence as follows: head (80%), chest (74%), arms/legs (66%), back (62%), and stomach (57%). The authors conclude, “In our study we found high rates of PTSD and chronic pain, with a majority of outpatients reporting comorbidity between the two. Only a few studies in refugee populations have measured this comorbidity and found such a high level of PTSD and chronic pain at clinical levels. This comorbidity is related to increased severity of psychiatric symptoms and high psychiatric morbidity, possibly due to a mutual maintenance mechanism between the two conditions.” Teodorescu 2015 We seemed faced again with an understudied population that has evidence of necessitating healthcare for an array of health issues potentially compromising quality of life. Persistent pain has many influential variables, but for this community specifically the potential influence of prior trauma leading to becoming a refugee is of importance given the likelihood of creating a schism in one’s social identity. Karos 2018 The authors have an impactful quote in this regard, “It seems that in the case of pain, the passage of time does not heal all wounds, but rather can aggravate them.” Teodorescu 2015 Not only is there increased likelihood of trauma for these individuals but we also must consider the impact of being forced to uproot one’s life and that of their families while attempting re-integration into a new and different society. As clinicians, we should seek to understand how these unique influential variables affect an individual’s experiences, including pain.


F. Human Immunodeficiency Virus Infection (HIV) – According to the CDC, at the end of 2018 there was an estimated 1.2 million people living in the United States with chronic HIV infection. CDC Craig et al make note of a major societal barrier to helping these individuals with their pain experience, stigmatization. Recall from prior discussions, stigmatization is defined as, “Process by which the reactions

of a community to a specific personal characteristic(s) reduces a person’s identity from a whole and usual person to a tainted, discounted one, causing that person to be discredited, devalued, rejected, and socially excluded from having a voice.” Cohen 2011 The authors cite a 2018 article by Scott et al, Psychosocial factors associated with persistent pain in people with HIV: a systematic review with meta-analysis. Scott et al state, “Chronic pain is a common symptom in people with HIV. Data from one systematic review indicate that 54% to 83% of people with HIV may experience clinically meaningful persistent pain, and these estimates seem to be stable from the pre- to current-cART [combined antiretroviral therapy] era.” Scott 2018 Specifically, between 42% - 66% develop peripheral sensory neuropathy (HIV-SN) and 54% - 78% experience neuropathic pain related to HIV and/or routine antiretroviral treatment leading to disability and reduction in quality of life. Scott 2018 With evidence of inadequate pharmacological management for persistent pain and the lackluster results of CBT, the authors set out to further assess psychosocial factors associated with persistent pain amongst those with HIV by conducting a systematic review and meta-analysis. The authors included 46 studies (13,480 participants) in the systematic review and from these studies, 37 (12,493 participants) were in the meta-analysis. Overall, the authors state, “This review including over 13,000 participants found ‘some’ or ‘moderate’ evidence supporting an association between pain outcomes and depression, psychological distress, post-traumatic stress, drug abuse, sleep disturbance, health care use, missed HIV clinic visits, ART [antiretroviral] adherence, unemployment, and protective psychological factors in people with HIV. Surprisingly few studies have examined protective psychological factors or social processes. There is a lack of high-quality research on psychosocial factors related to chronic pain in people with HIV.” Scott 2018 These findings demonstrate the need for a holistic approach to helping individuals with their persistent pain experience and specifically in this context understanding how pain management is an integral aspect to effecting long term outcomes.


G. Black U.S. Veterans – Craig et al cites Burgess et al as evidence for the unfortunate situation where Black veterans are “less frequently screened for the presence and severity of pain than white patients in Veterans Health Administration primary care.” Craig 2020 Although I prefer not to have a focal point of care based on rating pain on a scale of 0 – 10, this has been implemented since pain was deemed a “5th vital sign”. Getting into the nuance of this issue is well beyond the scope of this article. With that said, once this metric was implemented as a mandated aspect of the clinical encounter, data began getting logged into electronic medical records for each Veteran outpatient visit. Additionally, individuals reporting “moderate to severe” pain (as rated by a 4 or greater on the NRS) should then receive an assessment and appropriate intervention obviously tilted at reducing pain ratings. One hope with the introduction of pain as the 5th vital sign, known health disparities, specifically in this context race, would be reduced. Burgess notes we already know, “Blacks, in particular, are less likely than whites to receive adequate pain treatment for all types of pain (acute, chronic, postoperative, and cancer), even controlling for potential confounders associated with race such as medical comorbidities, insurance status, and patient preferences.” Burgess 2013 With this in mind, the authors set out to determine if Black Veterans were less screened for pain than Whites and if so, why? The authors compiled data from SHEP (Survey of Health Care Experiences of Patients) to include in their analyses. SHEP is a national survey offered to Veterans who have received healthcare. Participants are surveyed about a healthcare visit (SHEP index visit). The authors included 2007 data on 437,481 VA patients. Coupled with survey responses and administrative records the authors identified 25,382 non-Hispanic blacks and 220,122 non-Hispanic whites. Their overall finding, “Consistent with other studies documenting racial disparities in pain management black patients receiving outpatient care in the VA system were less likely than white patients to have a documented pain score in the medical record at their SHEP index visit.” Burgess 2013 Of note, the disparity was considered small at 4%, but as the authors state, “…represents a large number of black patients who are less likely to be screened compared with white patients.” Burgess 2013 The disparity was reduced to 2% when controlling for prior healthcare utilization where Black Veterans had a higher number of visits with lower screening at index visit. Although I’m not a fan of screening pain as a 5th vital sign, a present disparity may lead to inadequate management of patient needs. We are also still left with a bit of an unknown to why such disparities exist. The authors address this towards the end of their article as a limitation, “A more substantive limitation was that our secondary data did not capture many of the variables that might contribute for racial differences

in screening, such as racial stereotypes held by providers.” Burgess 2013


Why does this article matter?


“There is evidence of devaluing and discrediting practices directed at people with chronic pain who are socially marginalized. Charges by patients of racist, classist, heterosexist, cissexist, transphobic, sexist, and ableist biases by health care providers and others are not uncommon.” Craig 2020


As we’ve discussed, there are numerous reasons social marginalization may

occur and contribute to observed health disparities. These include but are not limited to race, ethnicity, indigeneity, SES, gender identification, sexual orientation, prior or current incarceration, intellectual ability, and/or co-morbidities (e.g., persistent pain, HIV, and mental health distress). Many of these groups are understudied making it difficult for us to know how best to meet their needs, albeit this does appear to be changing. These factors which make us unique from one another unfortunately then also lead to less than ideal healthcare access and quality of care. Although we are acutely aware of these health disparities and call for equity in health for all via initiatives such as Healthy People, we appear to have quite a bit of ground to cover before accomplishing this goal. I can’t help but reflect and wonder if perhaps Wittgenstein is right: once we’ve ascended the ladder, we have no choice but to throw it away in order to fully observe the world. These attributes, traits of individuality, are being categorized for better understanding, but then how do we mitigate slipping into becoming biased while perpetuating our innate tribalistic tendencies? This seems either daunting undertaking or not possible.


Regardless of which community we elect to join or are being forced into for observation, we are all members of a larger unifying community and that is being human. With this in mind, we must continue to strive to treat each other as such, while ensuring each of us are provided basic human rights equally. Craig et al advocates for asking all individuals presenting for care about their “current life conditions and ongoing health challenges.”. The authors report some of these factors include:

  • Housing - poor accommodation or homelessness

  • Sleep disturbances

  • Financial issues – such as inadequate money for food/drink

  • Social isolation

  • Substance use

  • Uncertain immigration/legal status Craig 2020

While being sure to check our biases, delivering what is termed, “Culturally safe care”. Craig et al state this “includes not assuming that all patients are heterosexual or cisgender and respecting LGBTQ2S patient sexual and gender identities and chosen pronouns. Care providers should be trained to identify stereotypes and prejudices they may subscribe to about people who represent socially marginalized groups.” Craig 2020 Ultimately, we necessitate more advocacy for a holistic approach to helping humans with their pain experience. Although we are beginning to move beyond simply investigating “tissue issues” with pain and expanding into other human features (e.g. thoughts, beliefs, past experiences, learned behaviors/coping responses), we need to be vigilant in assessing broader life and social factors to truly help the human in front of us. Again, I remain uncertain how necessary categorization is in this regard, given we can most likely find out a great deal of information about a person’s pain experience and needs by simply talking to them as a fellow human being.

In the end, Craig et al promote addressing healthcare organizations and professionals directly by implementing equity-oriented care. There are recent investigations into EQUIP (Research to Equip Primary Healthcare for Equity) seeking to accomplish health equity and reduction of marginalization while ensuring patient needs are met. The basic premise is outlined below in Figure 1, with focus on:

  • Trauma & Violence Informed Care (TVIC) – According to Browne et al, TVIC “…involves operating from the recognition that people impacted by social inequities often experience multiple forms of violence; the structural conditions of their lives often place them at greater risk of interpersonal violence, and of experiencing challenges in accessing supports to improve their physical and emotional safety.” Browne 2015 Additionally, the authors note how TVIC seeks to create “safe and trusting environments”, moving beyond simply attempting to locate problems in patient’s psyche, while minimizing further risk of harm and/or trauma from seeking healthcare.

  • Cultural Safety – According to Browne, cultural safety, “…aims to shift attention away from ‘cultural differences’ as the source of the problem, and onto the culture of health care as the site for transformation.” Browne 2015 Cultural safety is primarily viewed as a way to address health inequalities within healthcare.

  • Contextually Tailored Care “…expands the notion of client-centred care to include services that are explicitly tailored to the populations served and to local contexts.” Browne 2015 Said differently, contextually tailored care ensures not only patient centered care but expands to meet the needs of the local population (social) which may include “…tailoring practices and/or organizational policies and clinical guidelines/protocols to optimally address the most pressing needs of local populations, and the social and community realities that often shift depending on local politics, epidemiological trends, etc.” Browne 2015


EQUIP seeks to ensure equity-oriented care by affecting two primarily levels, staff and organization. More can be read about the nuts and bolts of EQUIP at the citation above.


To conclude this discussion, we are acutely aware of health disparities and steps are being taken to ensuring equity. At the individual healthcare professional level, reflecting on any potential biases we have about pain and those suffering from persistent pain may help stifle these biases influencing our clinician-patient interactions. We also should be cognizant of social populations demonstrated at risk for marginalization as discussed above. To summarize this entire article briefly, we need to strive to continue to treat each other as human beings, finding common ground rather than differences.


References

  1. Craig KD, Holmes C, Hudspith M, et al. Pain in persons who are marginalized by social conditions PAIN. 2019.

  2. Gross J, Gordon DB. The Strengths and Weaknesses of Current US Policy to Address Pain Am J Public Health. 2019; 109(1):66-72.

  3. Landefeld JC, Miaskowski C, Tieu L, et al. Characteristics and Factors Associated With Pain in Older Homeless Individuals: Results From the Health Outcomes in People Experiencing Homelessness in Older Middle Age (HOPE HOME) Study The Journal of Pain. 2017; 18(9):1036-1045.4 Amris K, Williams ACdC. Managing chronic pain in survivors of torture Pain Management. 2015; 5(1):5-12.

  4. Jimenez N, Garroutte E, Kundu A, Morales L, Buchwald D. A Review of the Experience, Epidemiology, and Management of Pain among American Indian, Alaska Native, and Aboriginal Canadian Peoples The Journal of Pain. 2011; 12(5):511-522.

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