Sickle Cell Disease (SCD) is a genetic blood disorder that primarily affects Black American communities in the United States, though it can occur in any racial or ethnic group. Individuals with SCD often experience painful episodes, known as sickle cell crises, which can be debilitating and require emergency medical care. Unfortunately, many SCD patients face significant challenges when seeking treatment in emergency departments, including long wait times, stigma, and inadequate pain management.
In this article, we explore the experiences of sickle cell patients in emergency care, the challenges they face, and the ways they can advocate for themselves to receive appropriate treatment.
The Emergency Department Experience for Sickle Cell Patients
Many Sickle Cell patients try to manage their pain at home using hydration, over-the-counter medications like ibuprofen or Tylenol, and prescription opioids.
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“Some also have long-acting medications like OxyContin or MS Contin and short-acting like oxycodone or morphine for their home regimen,” Dr. Brenda Merriweather tells BlackDoctor.org.
However, when their pain becomes unmanageable and they are breaking through their home regimen, they must decide whether to seek emergency care.
“Many of them have had negative experiences with providers in the ER, so they hesitate. They worry about being seen as drug seekers or having their pain dismissed,” Dr. Merriweather adds.
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“Some patients, if they are fortunate, have access to infusion centers or day hospitals where they can get fluids, IV pain medication and lab work. But others have no choice but to go to the emergency room,” Dr. Merriweather notes.
When sickle cell patients arrive at the emergency department, they frequently encounter long wait times. Emergency departments prioritize cases based on severity, meaning patients with heart attacks, strokes, or severe respiratory conditions may be seen first. While sickle cell crises can be life-threatening, the” invisible” nature of their pain often results in delayed treatment. When patients are triaged, their vitals may be normal, so this also can lead to delayed treatment.
Moreover, many emergency department providers are unfamiliar with the established guidelines for treating sickle cell patients. The National Institutes of Health (NIH) released guidelines in 2014, and the American Society of Hematology (ASH) updated pain management guidelines in 2020. Despite these recommendations, some healthcare professionals still lack awareness of the best practices for treating SCD, leading to inconsistent and inadequate care.
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Challenges in Emergency Care
Sickle cell patients face several major barriers when seeking emergency treatment, including:
- Skepticism and Stigma: Many patients are wrongly perceived as drug seekers due to their frequent need for opioids.
- Long Wait Times: Patients may have to wait several hours before receiving care, exacerbating their pain and discomfort.
- Inadequate Pain Management: Providers may not administer the medications that work best for individual patients, leading to prolonged suffering. Also, patients may be underdosed which can lead to suboptimal pain management. Patients need to also have a pain assessment 30 minutes after a dose of pain medication is given.
- Racial Bias: Since the majority of SCD patients in the U.S. are African American, racial biases in the healthcare system can contribute to delayed or inadequate treatment.
“Most sickle cell patients in the U.S. are African American, although anyone can have the disease. Patients face bias based on race and their condition. Some doctors assume they are drug-seeking and do not take their pain seriously,” Dr. Merriweather shares. “What these patients need is a compassionate approach. They should be seen within 30 minutes of arrival. But instead, they often wait for hours without receiving proper treatment.”
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How Sickle Cell Patients Can Advocate for Themselves
While systemic change is needed to improve emergency care for sickle cell patients, individuals can take steps to advocate for themselves, including:
- Carrying Medical Documentation: Patients should keep a flash drive or physical copies of their medical records, including their typical pain management regimen, to present to emergency providers.
- Using a Sickle Cell Passport: This document provides essential medical information, including diagnosis, pain management history, and preferred treatments, helping emergency staff make informed decisions.
- Educating Family and Caregivers: Loved ones can advocate on a patient’s behalf, ensuring they receive the care they need when they are unable to do so themselves.
In addition to the above, Dr. Merriweather advises being specific about your symptoms.
“Instead of just saying ‘I’m in pain or I’m hurting,’ they should describe their treatment history: ‘I’ve taken two Norco today, but it didn’t work. I’ve tried resting and hydrating, but my pain is breaking through my usual regimen. My pain score is at a 10′ Providers respond better to concrete information and data,” Dr. Merriweather adds.
Another way patients can advocate for themselves is through transition education.
“Young sickle cell patients need to be taught how to manage their condition independently so that by the time they go to elementary school, middle school, college or move out on their own, they can confidently navigate their care,” The best approach is to start transition education when the patient is young. Dr. Merriweather says.
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Preventative Care and Managing Sickle Cell at Home
While sickle cell crises cannot always be prevented, patients can take steps to reduce their frequency and severity. Dr. Merriweather advises the following:
- Take prescribed medications – Follow your healthcare provider’s instructions and take medications as prescribed.
- Drink plenty of fluids – At least 8 to 10 glasses per day to stay hydrated and help prevent sickle cell crises.
- Get enough rest – Ensure proper sleep and rest to help your body recover and maintain energy.
- Avoid extreme temperatures – Both hot and cold temperatures can trigger pain episodes, so dress accordingly.
- Stay away from people with infections – Avoid exposure to illnesses like colds, flu, or COVID-19, as infections can trigger a crisis.
- Reduce stress – Engage in stress management techniques such as mindfulness, meditation, and relaxation exercises to prevent crises.
- Eat a healthy diet – Incorporate nutritious foods to support your overall health and well-being.
- Keep up with regular doctor’s appointments – Stay on top of your healthcare visits to monitor your condition and prevent complications.
“Family members can be educated about the disease and how to recognize signs of crisis. When I worked in clinics, I encouraged patients to bring a trusted family member with them to clinic—like a parent, grandparent, sibling or roommate—so they could learn how to help,” Dr. Merriweather adds. “Caregivers should pay attention to changes in the patient’s behavior, like staying in bed more or taking extra medication. If a crisis seems to be starting, they should encourage the patient to drink fluids and contact their doctor as soon as possible. Early intervention can sometimes prevent an ER visit. Always have a plan to get to an emergency department if needed and that includes transportation and a driver.”
Managing Mental Health and Emotional Well-Being
Living with sickle cell disease presents significant mental and emotional challenges. Patients often face medical trauma, stress, and frustration when seeking care. According to Dr. Merriweather, strategies for improving mental well-being include:
- Mindfulness and Relaxation Techniques: Practices like guided meditation, deep breathing, and visualization can help manage stress.
- Massage and Aromatherapy: Some patients find relief in therapeutic massage and calming scents like lavender.
- Support Networks: Engaging in support groups, whether in-person or online, can help patients connect with others who understand their experiences.
Improving Emergency Care for Sickle Cell Patients
To improve emergency care experiences for sickle cell patients, hospitals and healthcare providers must:
- Educate Medical Staff: Training programs on sickle cell disease and its treatment should be mandatory for emergency department personnel.
- Implement Standardized Protocols: Hospitals should adopt the NIH and ASH guidelines to ensure consistent and effective care.
- Reduce Wait Times: Patients experiencing sickle cell crises should be seen within 30 minutes of arrival to prevent complications.
- Track Patient Outcomes: Hospitals should monitor how quickly sickle cell patients receive treatment and make improvements as needed.
“There needs to be more education on cultural competency and sickle cell treatment guidelines. ER providers should be trained on how to properly triage and manage sickle cell pain,” Dr. Merriweather notes. “Ideally, hospitals should implement mandates requiring Sickle Cell patients to be seen within 30 minutes of arrival. Institutions like Johns Hopkins have already tracked and improved their response times. More hospitals need to follow suit.”
Resources for Sickle Cell Patients
Several organizations provide valuable information and support for sickle cell patients and their families:
- Sickle Cell Disease Association of America (SCDAA) – Offers resources on patient advocacy and self-care.
- Sickle Cell 101 – Provides education and awareness materials.
- Centers for Disease Control and Prevention (CDC) – Features guidelines and recommendations for managing sickle cell disease.
- National Institutes of Health (NIH) – Provides research updates and treatment guidelines.
- American Society of Hematology (ASH) – Offers the latest clinical guidelines for sickle cell care.
Final Thoughts
Sickle cell patients deserve compassionate and timely medical care when experiencing a crisis. While advocacy and education can help patients navigate the healthcare system, systemic changes are needed to ensure that all individuals with sickle cell disease receive the care they need without stigma or delay. By raising awareness, improving medical training, and implementing standardized treatment guidelines, we can work toward a healthcare system that truly supports sickle cell patients. “Remember, Sickle Cell patients are not drug seekers, they are seeking treatment”. Dr. Merriweather notes.
If you or a loved one has sickle cell disease, consider reaching out to local support groups, staying informed about your treatment options, and advocating for better care. Together, we can help create a more equitable and compassionate healthcare experience for all Sickle Cell patients.
Medically Reviewed By:
Dr. Brenda Faye Merriweather
Dr. Brenda Merriweather is a Clinical Nurse Specialist who recently earned her Doctorate of Nursing Practice from Walden University. With a deep passion for improving care for individuals with Sickle Cell Disease, she has held several key roles in prominent healthcare institutions, including Baptist Health System, Vanderbilt University Medical Center, Johns Hopkins University, and the National Institutes of Health.
