Listening to Sickle Cell Patients Is Crucial During a Crisis
I have experienced many things as a sickle cell disease patient. I have had pneumonia more frequently than I can remember, suffered collapsed lungs, had deep vein thrombosis and pulmonary embolisms, spent weeks on end in intensive care, and been intubated a number of times. But this latest admission was the most traumatic of my life.
After being in the hospital for two weeks, I decided to discharge myself. It was a difficult decision, because as a sickle cell patient, statistically I have a higher risk of developing life-threatening complications from COVID-19.
Based on this experience, I’ve come up with some advice for healthcare providers about ways to better care for and support sickle cell patients when we are ill. I hope you find my suggestions helpful.
Open and honest communication between healthcare providers and patients is vital. This includes during diagnoses, while issuing referrals to other teams, when prescribing and withdrawing medications, when delivering test results, and everything in between.
Care providers should keep patients updated and accurately informed, and involve them in care planning and decision-making. They should avoid making key decisions without involving the patient. Doing so can be disheartening to a patient and can weaken their trust.
Communication includes listening to the patient. For example, although I was given an exchange transfusion recently, a few hours later, I was still in pain. Doctors removed the pain relief I was prescribed, despite my objections that I was still in pain. My pain team also thought I should remain on pain relief medication.
But a doctor didn’t think it was possible for me to still be in pain because I had just received an exchange blood transfusion. Yet I still was in excruciating pain and couldn’t even move.
Doctors should remember that patients are unique and might not always follow textbook examples. In my experience, it’s possible to have a blood transfusion and still experience sickle cell crises. This is not the first time it’s happened to me, and I am sure it won’t be the last.
Care providers should think holistically when dealing with sickle cell patients. Treatment goes beyond administering pain relief and antibiotics. High-level body pain makes simple daily tasks a struggle for patients. This means we may require assistance with things that others might be able to do independently. Please ask us if we need help.
One example I often struggle with is lifting my body while in bed, because I often slide down. When I’m in a crisis, I can’t move my body up or roll from side to side, so I need assistance. The same is true for personal care tasks.
It is important for care providers to be patient (no pun intended). When dealing with high levels of pain, most people are not themselves. I am certain this is true not only for sickle cell patients, but others as well. The effects of a chronic condition can be physically, emotionally, and psychologically overwhelming.
Being in an excessive amount of pain, taking some of the strongest opioid medications available, and still having pain fail to dissipate can leave patients feeling frustrated, upset, and angry. This certainly is the case for me. Be patient with your time and kind with your words to sickle cell patients while we battle through this difficult time in our lives.
Based on conversations I’ve had, some doctors might seem cold and disconnected because it could be a coping mechanism for them. I am not a healthcare professional, so I can’t speak to effective or ineffective coping mechanisms for doctors. But I can say that patients are people, too, and we’re often in our most vulnerable state when you see us. The best advice is to treat us with dignity and respect, and offer and deliver the type of care you would hope to receive yourself if ever seriously ill.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.