Disparity in health care, and in particular care for pain related to disease, is a concern for many health professionals as well as those in the general population. Disparities in pain management for vulnerable societal groups, specifically the members of racial and ethnic groups, the poor and the elderly, are violations of the principles of social justice. This paper presents evidence of disparities in management of pain and cancer pain in vulnerable groups, explores the issues, and recommends health professional, individu alignal and system level actions to address disparity in this important area of health care.
There is a critical disconnect between what we discover and what we deliver, between what we know and what we do for all people. (Freeman, 2004 , p. 72)
Disparity refers to a condition of inequality. Disparities in health care have become an issue of national concern and have been highlighted by the Institute of Medicine (IOM, 2003) and the Agency for Health Care Quality and Research (2004), as well as numerous authors. While the above quote cited by Dr. Freeman regarding a critical disconnect was specifically focused on cancer treatment in general, it can be easily generalized to many areas of health care as noted in the IOM report, Unequal Treatment. Confronting Racial and Ethnic Disparities in Healthcare (2003). The fact that some population groups, particularly the poor, ethnic/racial minorities and the elderly, receive substandard care for any acute or chronic condition is unthinkable in a health care system that is world renowned for its innovativeness and excellence. However, it is a reality.
Health care and social justice are interrelated concepts. The Catholic Bishop’s Statement on Faithful Citizenship (Malloy, 2007) identifies health care as an “Essential safeguard of human life and a fundamental human right” (p. 23). Failure to provide health care access, or quality care, to subgroups of the population can thus be seen as a failure, or even a miscarriage, of justice. Hinojosa (2008) highlights the Catholic Bishop’s statement regarding social justice by urging people of faiths to take action against unjust practices including among them the suffering from hunger or lack of health care. Health care involves the distribution of scarce resources, and there is ethical precedent to distribute these resources according to one’s need (Edge & Groves, 2006) rather than according to other characteristics, including one’s ability to pay for the resource. The current disparity is a clear violation of distributive justice and a preferential option for the poor.
"Health care and social justice are interrelated concepts."
In this paper, disparity in pain management, specifically cancer pain management, will be described. It is this author’s purpose to focus attention on this issue and its relationship to social justice, to present evidence that it is, in fact, a pervasive problem in healthcare in the United States, and to recommend action on the part of health professionals and the public to resolve this area of disparity.
Pain is a common symptom associated with cancer. One third of cancer patients present with pain at the time of diagnosis and approximately two thirds experience pain with advanced cancer (Dahl, 2004). Pain may be the result of the cancer itself, treatment for the cancer (surgery, chemotherapy, and radiation), the result of tests and procedures, and/or other disease states or comorbidities. Undertreated pain leads to adverse clinical outcomes, unnecessary suffering, and decreased quality of life (Strassels, Blough, Hazlet, Veenstra & Sullivan, 2006) Minorities, particularly African Americans, are more likely to be diagnosed with cancer at a late stage representing more advanced disease; this delayed diagnosis predisposes them to cancer-related pain (Dahl, 2004; Ward, Jemal, Cokkinides, Singh, Ghafoor & Thun, 2004). Other comorbidities, such as diabetes mellitus may also be sources of pain, which will complicate the course of an elderly or minority cancer patient, such as a Hispanic, African American, or Native American individual in whom this disease is more prevalent (Nau & Congdon, 2007).
There is increasing evidence that being economically disadvantaged (poor) also is, in itself, a risk factor for cancer, late stage at diagnosis, and poorer outcomes (Green et al., 2003; Ward et al., 2004). Ward et al. analyzed cancer mortality data and Census Bureau information to provide an overview of trends in cancer mortality and morbidity across economic, ethnic, and racial groups. In every aspect of the cancer disease trajectory, ethnic/racial subgroups and the poor have disproportionately higher mortality rates and lower survival. For example, Hispanic females have almost double the incidence of cervical cancer than whites; likewise, with the highest mortality rate for all cancer sites combined, African Americans, particularly males, are 1.4 times more likely to die from cancer (particularly lung, colon, prostate) than their white counterparts (Ward et al., 2004). The synergistic effects of multiple risk factors – in this case, minority or ethnic status and poverty – may result in higher risk status for delayed diagnosis and poorer treatment outcomes.
"Health care and social justice are interrelated concepts."
The poor are disproportionately more likely to be ethnic or racial minorities (Green et al., 2003). When they are compared with non-Hispanic whites, members of racial and ethnic minority groups exhibited lower educational status, higher rates of poverty and subsequently, reduced access to health care (Ward et al., 2004). And although poverty itself is defined primarily as referring to socioeconomic status, it includes inadequate education and lack of health insurance (Ward et al., 2004). There is increasing evidence that disparities in pain management exist for the poor as well as for members of ethnic and racial minorities (Green et al., 2003; Bonham, 2001). These subpopulations may overlap significantly.
"...the poor are much more likely to have inadequate, inappropriate, or no pain management at all."
The many layers to this issue complicate examination of the possible root causes. An important component of pain management is the collaboration between the patient/family and health care interdisciplinary team to develop and implement an effective pain management regimen. It has been shown that the poor are much more likely to have inadequate, inappropriate, or no pain management at all (Freeman, 2004). There is also known to be a lack of familiarity with resources on the part of patients and families who are of lower socioeconomic status and often less well educated. Patients and members of their families may be unaware of what comprises good pain management as well as have limited access to health care itself. Health care providers have even been shown to be resistant to prescribing opioids or narcotics for some groups (Dahl, 2004). This reluctance has been hypothesized to relate to myths about the likelihood of drug diversion in certain minority populations and concern about addiction in certain populations (Dahl, 2004). It is difficult, if not impossible, therefore to distinguish whether the disparities arise from minority status, poverty, lack of education, or some combination of these factors (Freeman, 2004; Cintron & Morrison, 2006). However, the end result is one that is not acceptable or just in a health care system such as that of the United States, with available resources to successfully ameliorate suffering from pain in cancer patients. The ethical principle of justice implies the idea of a social contract and moral obligation to care for those in need, specifically when the need is in the form of an illness (Edge & Groves, 2006).
"The process of managing a patient’s pain involves a three-step process."
The process of managing a patient’s pain involves a three-step process. The first step is assessment, the second is moving to treatment with both pharmacologic and non-pharmacologic approaches, and finally evaluation of the outcomes of the analgesic regimen and patient/family education. The initial assessment of the existence and characteristics of the pain is a vital step, as is the reassessment of the outcomes of the pain treatment. The potential for disparities in pain management exist at each step of the process.
"Many times patients want to be “good” patients so they do not report pain."
Assessment is the crucial point in the pain management cycle that essentially influences the remainder of the symptom experience. If reassessment, that is evaluation of whether pain is relieved by the intervention applied, is added to the overall assessment concept, then assessment can be seen as the pivotal component since both the initial as well as subsequent, evaluation of effectiveness is represented. There is abundant evidence of disparity in assessment for racial/ethnic groups, the poor, those who are less well educated and the elderly (Herr et al., 2004; Bonham, 2001). The fact that individuals in any of these groups may have overlapping membership compounds the potential problem. For example, Herr et al. (2004) studied 709 older adults (>65 years) with hip fractures requiring surgery. They found that in the first 24 hours following admission, only 5.5% of patients had their pain assessed as recommended every four hours, and only 26% of patients were assessed at even eight hour intervals within the 72 hour study period. Reassessment, related to evaluating the effectiveness of pain management, only occurred 22% of the time in the first 24 hours, and only 15% for the entire 72 hour study period. The lack of pain assessment at the recommended interval following surgery represents a failure to meet an established standard of care.
"Many times patients want to be “good” patients so they do not report pain."
Additionally, characteristics of the subgroups – such as a passive attitude toward health care found in some elderly patients, or a distrust of Western medicine in some minority patients – further intensifies the potential for deficits in assessment or reassessment. Many times patients want to be “good” patients so they do not report pain. This attitude was found to be common in older, less educated, and lower-income adults (Dahl, 2004).
Because pain is a subjective symptom frequently without visible “evidence “ to substantiate it, there can be a tendency to discount it or even disbelieve it if the health care provider is not well educated in pain management. A social disconnect can occur, such as that which may stem from negative attitudes toward minority patients, or the poor, or those who abuse substances (Tait & Chibnall, 2005) which discourages appropriate assessment. Lebovits (2005) highlights the irony that the very “invisible” nature of pain makes it more likely to be discounted or omitted in assessment, while racial origin is commonly easily observable and hinders pain assessment as numerous authors have documented (p. 3). Such a lack of care, to discount a patient’s report of a symptom or disbelieve the report from a minority or elderly patient, is contrary to ethical principles and the tenets of social justice regarding rights to health care.
Appropriate treatment for pain relies to a great extent on good communication and trust between the health care provider and the cancer patient. For this reason, pain management needs to be a collaborative process. Minority patients report less inclusion especially when the partnership between provider and patient involved discordance regarding race (Tait and Chibnall, 2005). There is also less confidence in the medical system from members of minorities than in the non-Hispanic white population (Tait and Chibnall, 2005). Eversley et al. (2005) studied 116 women in two northern California programs which provided advocacy and support for women with cancer. When examining income and care variables for these breast cancer patients, the authors found that lower income Latino women who had had a mastectomy and chemotherapy were at higher risk for unrelieved symptoms including poor pain management.
"...one of the greatest difficulties for urban and rural poor is availability of the pain medication ordered for them..."
Substance abuse may occur in the poor or minority patient, just as in other socioeconomic and ethnic groups. However, this can lead to great difficulties in gaining appropriate pain management. Health care professionals can be unwilling to treat pain in these individuals due to fears of censure from regulatory bodies such as Boards of Medicine, Pharmacy, or Nursing, fear of contributing to their addiction, or on moralistic terms (Kushel & Miaskowski, 2006; Passik & Kirsh, 2005)
Assuming adequate assessment and management, one of the greatest difficulties for urban and rural poor is availability of the pain medication ordered for them even if they are able to pay for it. Pharmacies in rural or inner city urban areas may choose not to stock opioids or newer analgesics for a variety of reasons from fear of robbery (due to illicit use) to low demand (Morrison, Wallenstein, Natale, Senzel, & Huang, 2000; Vallerand, Hasenau, Templin & Collins-Bohler, 2005). Even when available, the homeless cancer pain patient may have difficulty obtaining medications due to cost and then retaining them for use due to lack of security for personal belongings (Kushel & Miaskowski, 2006).
The poor are among those who are uninsured, or have Medicare or Medicaid as their insurance. Many times the costs of drugs are not covered or there are formularies which limit the type or amount of medication that may be provided. Analgesics are not one size fits all and this influences the effectiveness of pain management. Further, rehabilitative services, such as physical therapy, which can reduce pain, are frequently not paid for even with insurance. Without insurance, such services may be out of the reach of the poor (Eversley et al., 2005).
"...how can effective pain management be made available or withheld from those who have fewer resources?"
Although few would dispute pain management at the end of life is a right of all, it remains more readily available to those members of society with money than those without. In 2005, a study of more than 2,000 older adults found that those with incomes greater than $70,000 suffered less pain at end of life than the poor (Silveira, Kabeto, & Langa, 2005). In regard to social justice, how can effective pain management be made unavailable or withheld from those who have fewer resources? Is effective health care available to the highest bidder only?
Hospice, a good source of effective pain management at end of life, is utilized less by minorities. Because of frequently compromised access to the healthcare system for the poor and minorities, these subgroups are not directed into the hospice system. This same difficulty may prevent them from re-enrolling as well if they leave the system (Kapo, Macmoran, & Casarett, 2005; Strassels et al., 2006). Further, hospice is frequently not an option for those whose home situations are less than ideal for home care (the homeless, housing without indoor plumbing, urban high crime areas). The option of in-patient hospice or hospice in a long-term care facility does not always exist.
The lack of formal education reflects not only in earning potential, but also in the ability to know what the components of good pain management entail and advocate for it. Language and communication barriers, influenced by lack of education and reduced ability to talk to the healthcare provider, will influence the availability and effectiveness of pain management (Eversley et al., 2005). Educating patients about not only their right to pain management but also what good pain management encompasses allows for patient autonomy and control of the pain (Vallerand et al., 2005). There are indications that minority patients achieve less of a partnership with their health care provider and thus less perception of control. This is especially true when the health care provider/patient partnership is racially mixed. Related to this, Tait and Chibnall (2005) found that there was greater satisfaction with pain treatment when provider and patient were of the same race. Bonham proposes that the inadequate care provided to minority patients in pain can be seen as a form of racism (2001).
"Those with low health literacy spend more time in a hospital and are less able to take their medications appropriately."
The family is an essential unit in pain management, particularly for some racial/ethnic groups, and needs to be educated as well. This is important to help patients adhere to the pain management plan but also to prevent subversion (due to family members’ misconceptions and incorrect beliefs). It has been found in facilities caring for the dying that if there is not sufficient information provided to the patient and family on all aspects of cancer and symptom management including pain, family members assume that pain relief will most likely be ineffective (Miettinen, Tilvis, Karppi, & Arve, 1998).
Finally, health literacy is a huge barrier to pain management. Minority groups are disproportionately affected by low health literacy as well as lower social economic status. More than half of Medicare/Medicaid recipients read at the 5th-grade level or lower (Glassman, 2007). Those with low health literacy spend more time in a hospital and are less able to take their medications appropriately (Glassman). Appropriate education and inclusion of the patient and family in the decision making about the pain management process is essential to effective pain management. In keeping with principles of social justice, providing low literacy patients in pain with both appropriate interventions as well as education is required of competent health care professionals.
Lack of awareness of the scope of health care disparities, specifically in regard to pain management, may be an obstacle to resolution of this inequality in care. Thus, a first step is to provide education on this issue for all members of the interdisciplinary health care team, not only those in the specialty of pain management, regarding the evidence of disparities. If care providers are not aware of the difficulties experienced by vulnerable groups – the poor, racial/ethnic groups, and the elderly – with their pain management, they cannot address and resolve them.
A second step would be establishing accountability of health care team members for the outcomes of pain management for all those in pain, paying attention to the outcomes of these vulnerable groups. Continued research, as well as quality improvement projects, in health care settings taking into account the racial/ethnic, socioeconomic, and age-related factors will be essential to gather data on which to monitor progress.
"If care providers are not aware of the difficulties experienced by vulnerable groups … they cannot address and resolve them."
A final step involves education of the public – the persons who are, or will at some point be, affected by cancer pain and their family members – regarding both the rights to, and the components of, effective pain management. Patients and families, empowered with knowledge, will be more appropriately in partnership with health care providers delivering pain interventions (McNeill, Reynolds, & Ney, 2007). Additionally, patients and families advocating for themselves, based on sound information regarding quality care, will be a strong impetus for change.
These steps will be useful in raising awareness and reducing unintended disparity in pain management. However, this author believes that system-wide change is also needed. System level improvements in health care are needed to ensure that all patients receive the benefits of evidence based care in every aspect of care delivery – from prevention to end of life. The fact that the poor or minorities or the elderly in society, traditionally groups that may not have a strong voice in decision making, are not afforded all that the highly sophisticated U. S. health care system has to offer is a striking example of the blatant disregard of principles of social justice. National guidelines are established for pain management that assure effective and evidence based assessment, intervention and evaluation practices. Monitoring and quality assurance systems need to be in place to insure that all patients receive recommended standards of care, without respect to racial/ethnic group, age or insurance status (McNeill et al., 2007; Clancy, 2007)
The statement of the US Council of Catholic Bishops takes the position that health care is a human right as well as “an essential safeguard of human life” (Malloy, 2007, p 23). The Bishops’ statement also identifies the issue of affordable and accessible health care as an “urgent national priority” (p. 23). As decisions are made in the political arena in this and other aspects of national priority, the issue of health care disparity, an issue of social justice, must be addressed and resolved.
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