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Amidst the opioid epidemic, patients with sickle cell disease have been greatly suffering from poor pain management due to decreased prescriptions of narcotics because they "are often assumed to be associated with opioid abuse and addiction" (Ruta & Ballas, 2016). Many patients with sickle cell disease maintain a more functional lifestyle because of the relief provided by their pharmacological pain management regime. Healthcare providers have been reducing the opioid prescriptions they write in an attempt to fight the opioid crisis without taking into consideration the need of this particular population for consistent maintenance of their chronic and acute pain.

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Currently in practice, I have noticed that patients with SCD are treated with drug therapy that often is not effective for their pain management and other interventions are neglected. It is often assumed that since this is a chronic disease, that the patient knows the best ways to manage their own pain. There is always room for the nurse to further educate their patients with SCD on their medications or other complementary therapies that can be used in addition for better health maintenance. Though nurses continue to advocate for their patients, the ultimate decision is up the the provider and with resistance and fear of worsening the opioid epidemic, a lot of providers have geared to lessening the prescriptions of opioids they are writing. Nurses need to continue their participation to make sure the voice of the patient is hushed by the fear of this epidemic.

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The population directly affected by this issue are those with the inherited red blood cell disorder of sickle cell disease. In this disease, the red blood cells "sickle," becoming hard and sticky where they can easily "get stuck and clog the blood flow. This can cause cause pain...infection, acute chest syndrome, and stroke" (CDC, 2016). This issue affects not only the patients, but their family, social life, work life as well.

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Sickle cell disease (SCD) occurs more often in people who are from parts of the world where malaria is or was more common. According to the Centers for Disease Control and Prevention, people who carry the sickle cell trait are less likely to have severe forms of malaria (2016). That being said, African Americans are particularly susceptible to this disease affecting 1 in 365 African American births and 1 in 13 African American babies born being carries of the sickle cell trait (CDC, 2016). The City of Norfolk's has African Americans making up over 40% of its population--which makes SCD not uncommon among the patients cared for at Sentara Norfolk General Hospital. SCD also affects roughly 100,000 Americans and is more prevalent in cities with higher African American populations (CDC, 2016). In an attempt to contain this opioid crisis, healthcare providers have grown more hesitant to prescribe narcotics to patients--leaving many sickle cell patients with ineffective pharmacological maintenance of their pain.

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Why is the Nurse's Involvement Important?

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Why is the Nurse's Involvement Important?

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As an advocate for the patient, it is important that the nurse speaks up to the health care providers when they feel their patient is being stereotyped and assumed to be addicted to opioids just because that patients knows what works for their pain management. The job of the nurse isn't to just pass the medications to their patient and monitor them, we must care for the patient holistically and get to know them through therapeutic communication and active listening.

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Some of the challenges and barriers of the nurse's role with this issue are that other than by what the patient says, there's no way to really know exactly how bad the patient's pain is since everyone's threshold is different and different patients may be feeling the same amount and type of pain, but one may report is as a 3/10 and the other a 6/10. This is also why it is important to assess the provoking factors, quality, radiation, severity, and timing of the pain (PQRST) to get more information on what the patient is actually feeling. Once patients leave the hospital, they have to stay on top of their health without the nurse at the bedside to help or remind them on what they should do. For the patient there can be financial barriers with or without health insurance with obtain their medications that help them manage their chronic and acute pain. If the patient is of a lower socioeconomic status they are less likely to have adequate resources and support to maintain good health and proper care with their disease.

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1 Be the advocate for your patient's pain.

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1 Be the advocate for your patient's pain.

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According to the National Institutes of Health (NIH) guidelines, providers should "base analgesic selection on pain assessment, associated symptoms, outpatient analgesic use, patient knowledge of effective agents and doses, and past experience with side effects" (2014). It is important that the nurse stays an advocate for the patient regarding their pain management. Often times, a sickle cell patient has a higher pain threshold since they've dealt with chronic pain their whole life and can seem like they are in less pain than they are saying. Pain is subjective and it is the job of the nurse to be the voice of the patient if/when the doctor dismisses their reports of pain in thoughts that that patient is drug seeking for more than what they actually need. Remember it is important to reassess the patient's pain level one hour after medication administration to see if the drug is providing relief for the patient or if the doctor should be consulted for possible dosage adjustments.

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2 Educate SCD Patient on Tips for Living Well

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2 Educate SCD Patient on Tips for Living Well

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According to the CDC, patients with SCD can "live full lives and enjoy most of the activities that other people do," (2016) as long as they find good medical care often with a hematologist, get regular checkups and learn ways to prevent infections. It is also important for patients with SCD to drink 8-10 glasses of water/day, eat healthy food, and try not to get too hot, cold, or tired (CDC, 2017). Common illnesses such as the flu, that can normally be fought off by the healthy adults fairly well can become very problematic for those with SCD. It is important to remind the sickle cell patients of ways to prevent infections that can exacerbate their pain and condition. Educate the patients on hand washing (before cooking/eating, after using the bathroom/coughing/sneezing/touching things that can carry germs), food safety (washing fruits/veggies and cooking meat until it is well done), to avoid reptiles because they can carry salmonella (turtles, snakes, lizards), and to stay up to date with their vaccines (CDC, 2017).

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Complementary and alternative medicine in combination with pharmacological interventions for pain can result in optimal health maintenance for better lifestyles of patients with SCD. Spiritual healing, acupuncture, massage therapy, meditation, and relaxation techniques such as breathing exercises and guided imagery are all options for patients with SCD to use that may provide extra assistance in pain relief and health maintenance (Thompson & Eriator, 2014). These techniques can also provide relaxation of the mind to help ease the patient of some of the stresses of living with a chronic illness.

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4 Educate the patient on local support groups

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4 Educate the patient on local support groups

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Since this area is greatly affected by this disease, there are a lot of support groups to offer SCD patients information about. The Sickle Cell Association, Inc. has a chapter in Hampton Roads who's mission statement is to serve "as a vehicle and resource center for the psycho-social, education, and support service needs of sickle cell families affected by this disease (2013). The American Sickle Cell Anemia Association provides information on services available in major cities in states greatly affected by SCD (2010).

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Throughout my education at SCOHS, I have learned that is is important to remember the fundamentals of nursing. Since this issue deals with pain it is important to examine all areas of the patients pain through the PQRST pain assessment tool. I have also learned that the nurse must remember to reassess pain in a timely (1 hour) manner to evaluate the effectiveness of the pain interventions. This will help me take leadership with my patients in evaluating effectiveness of pain management so, if necessary, I can advocate for them for further interventions

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At SCOHS I have also learned that it is important to put all biases and stereotypes when caring for your patients to ensure that you are providing them with genuine and quality care. Since SCD patients often require opioid prescriptions for their pain management, one must not assume they are drug addicts or lying about the pain they are in. Sickle cell exacerbations are said to be quite painful, and unless you've experienced them yourself its hard to understand exactly what the patient is feeling. Listen to your patients about how they've managed their pain their whole life and try to come up with new ways the patient might be able to add to their interventions. As a student, I have seen a lot of patients only cared for with often ineffective pharmacological interventions and not other non-pharmacological interventions. Remember to treat the patient holistically and empathize with their thoughts and feelings.

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Another important thing I learned throughout my educational experience at SCOHS is that doctors don't necessarily know everything. Nurses are at the bedside and usually know the patients better than the doctors do. That being said, the nurse has a better understanding of the ins and outs of the patient and take more time to therapeutically communicate with them. I have learned to help the patient become more involved in their own healthcare and to help them speak up for themselves in their times of need.

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According to Pain Medicine, from 1999-2013 the number of non-SCD patients who died due to opioid pain relievers was 174,959, while the number of patients with SCD who died due to opioid pain relievers totaled at 95, showing that within this 15 year study between only 1-10 SCD patients died annually from overdose (2016). "Although the medical literature indicates that death due to opioid pain relievers is on the rise, as is addiction, this does not automatically mean that patients with SCD...are drug addicts" (Ruta & Ballas, 2016). Since this disorder manifests itself and continues throughout the lifespan it is "by common sense that patients with SCD do consume larger amounts of opioids on a chronic basis" (Ruta & Ballas, 2016) and often require frequent admissions to the hospital for their pain management. According to Sickle Cell Anemia News, physicians are wary of prescribing too much pain medication to SCD patients because of fear of citation from the state, so limits set by the state are at times failing to take into consideration the need of this particular population for pain management (2017).

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This article also found that patients with SCD report nurses are not as caring with them as with other patients and that racial and ethnic minorities "tend to be under treated for pain compared to non-Hispanic whites" (Ruta & Ballas, 2016). This nationwide fear of opioids because of the crisis denies opioids to patients who really need them like in those with SCD. Patients with SCD were asked about the pain levels they experienced at home and 24.2% said they had mild pain, 42.2% said they had moderate pain, and 34% said that they experienced severe pain while at home, which (since pain is subjective) suggests how truly uncomfortable these patients are on a daily basis while trying to manage this disease--this study showed that 73% of hospitalized patients reported experiencing severe pain (Thompson & Eriator, 2014). The International Conference on Hemoglobin Disorders reports that patients with SCD report a significant improvement in pain management when taking short acting narcotics for pain when compared to those who are not (Feliu, Wellington, Crawford, Wood, Edwards, Byrd, & Edwards, 2011).