Patients experiencing acute pain episodes from sickle cell disease (SCD) frequently present to our ED, but the staff seem reluctant to administer I.V. analgesia. What is the best approach to advocate for these patients?

Christianne Marr; Daniel Schmitgal; and Bridget Parsh, EdD, MSN, RN, CNS reply: SCD is a group of inherited blood disorders that affect the red blood cells, turning normal, flexible "disc" shaped cells into the shape of a "C" or a sickle.1 These misshapen cells become rigid and can occlude small blood vessels, causing acute vaso-occlusive pain episodes.1 Other, more serious complications include acute chest syndrome (defined as a new radiodensity on chest imaging accompanied by fever with or without respiratory symptoms), tissue ischemia, and even death.1 SCD is more common in certain ethnic groups, including people of African descent; Hispanics from Central and South America; and people of Middle Eastern, Asian, Indian, and Mediterranean descent.1 In addition, those affected by SCD often face disease-related stereotypes and biases in healthcare settings.2

Delays in care and patient dissatisfaction

Patients seeking treatment in the ED for painful vaso-occlusive events have reported feeling discriminated against and stigmatized by healthcare providers (HCPs) as well as being somewhat satisfied or completely unsatisfied with the care they received.2,3 ED wait times for analgesics among patients with SCD are 70-75 minutes longer than the national guideline recommendations on analgesics, which is as soon as possible in less than 30 minutes.3,4 Early aggressive pain management can avert inflammation and tissue ischemia.4,5

Patients with SCD acutely feel the effects of implicit bias when presenting in the ED.3 Implicit bias is the integration of stereotypes and negative ideas about a person or population into one's thoughts and actions, and it has been shown to impact the quality of care patients receive.6,7

Reports show that some nurses think patients with SCD appear healthy despite their reports of pain and caring for them requires too much time.2 Some nurses also question the level of pain intensity reported by patients with SCD during ED visits and hospitalizations.2 These nurses may believe a majority of patients with SCD have opioid use disorder and are only seeking drugs.8 In fact, 55.5% of nurses believed that patients with SCD who visited the ED were addicted to opioids.8 Because nurses play a pivotal role in patient-care coordination, they have a major impact on the overall care that patients receive. Nursing communication with HCPs regarding patient assessment findings can greatly influence an HCP's decision regarding treatment.2

HCPs may also exhibit biased decision-making when treating patients with SCD. ED HCPs frequently report that patients exaggerate pain intensity levels, manipulate care providers, and that the patients are drug abusers.4 Forty-six percent of ED HCPs believed that at least 10% of patients with SCD were drug addicts when the number is realistically between 2% and 5%.9 This belief has led to an unwillingness to provide opioid analgesics to patients with SCD, even when pain is not resolved after the initial dose.4

The race connection

Because 90% of patients with SCD in the US are Black, the connection of race to many of the disparities experienced by these patients cannot be ignored.2 For example, people of color receive a lower standard of care compared with those who are White.6 Black patients are kept waiting longer to be seen by a medical professional, spend less time with HCPs, and are often not involved in decisions regarding their care.6 Patients with SCD believed HCPs and nurses (46% versus 34.9%, respectively) did not care about them.3 These deficits, or perceived deficits, in their care lead many patients with SCD to feel that they are being discriminated against by their providers.4 Pain management, both in the ED and among primary care providers, has also been shown to change depending on a patient's race. Black Americans are prescribed opioids at lower rates than any other ethnic group for all types of pain.10 Race has been shown to be a key factor and continuing issue in the administration of analgesics in the ED.10,11

Racial disparities have also been shown in areas of research funding. For example, research on cystic fibrosis, a disease that primarily affects White individuals, is eight times more likely to receive funding even though the number of patients with SCD is three times higher.12

Impact of bias on patient outcomes

Being aware of biases and recognizing the outcomes of biases toward patients with SCD is important.13 Patients who feel discriminated against are less likely to trust their providers, leading to nonadherence to treatment recommendations and a delay in seeking care.14

Patients with SCD who are not evaluated and treated effectively in the ED have a higher risk of being readmitted soon after discharge. In fact, 50% of patients with SCD evaluated for pain in the ED were readmitted within 1 month and 16% within 1 week.10 The higher rates of hospitalization have been shown to contribute to higher mortality of patients with SCD.15

The high hospitalization rates in patients with SCD drive up healthcare costs. The financial impact of SCD may also include significant healthcare costs such as ED visits, and loss of income due to SCD's high mortality rate and lost work hours among patients and their caregivers.15-17

Nursing considerations

Nurses have an immense impact on the overall care and satisfaction of patients with SCD. Nurses must consider the implicit biases faced by patients with SCD and speak up if the patient is not receiving adequate or timely treatment.2,4,12 Perform frequent pain assessments and provide medication promptly to decrease sickling.2 Ensure the patient's concerns, as well as those of the nurse, are communicated to the entire healthcare team.4,9 Avoid using derogatory terms like "sicklers" when talking about patients and correct those who do.4 Being sensitive to the needs of patients with SCD means making decisions based on established care guidelines. These measures can help minimize the disparities experienced by patients with SCD.

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