When I'm helping a patient who's angry about an aspect of care, the most important thing I do is listen, just sit quietly and listen. Often patients just want to be heard. Listening and repeating back their concerns lets them know they've been heard.
It’s difficult to describe a single approach to care. I spend much of my time explaining to other providers that lumping all people with sickle cell disease is a very bad practice. I believe in the need for individualized care, understanding from day to day what brings patients to my office or to the infusion clinic. I tell anyone who will listen that I have the most rewarding clinic – few believe me because of the patient population that I take care of, but most of those providers are jaded by having only met people with sickle cell disease while they were hospitalized. My sickle cell clinic is full of people who work, take care of their families, live with a dreadful, life threatening disease, and are rarely in the emergency room.
There are two important tenets of my approach to working with patients. The first is that until I walk in their shoes (and I never will), I can’t judge their behavior. Whether it’s the young patient with iron overload who is going to die from heart failure if she doesn’t take her chelation, or a patient who is inappropriately self-medicating, my job is to problem solve around these issues and educate, not to abandon or judge.
The second tenet is the importance of listening during a visit. Listening well serves two important purposes: it is the key to determining the cause of most patients’ complaints. The diagnosis is usually in what the patient tells me, so careful history taking is imperative. Listening is also the key to gaining the trust of patients. As with any conversation, attentiveness demonstrates respect for the speaker and I think this is particularly important in the clinic setting.
For my patients trust in the medical system can be quite limited, so I see as part of my mission as a sickle cell provider, the need to educate other clinicians about the importance of believing patients when they present in pain. When I teach the medical students, residents, and providers at other hospitals, one of my most important goals is to help providers overcome their negative attitudes towards people with sickle cell disease.
Unfortunately, negative attitudes towards those with sickle cell disease are pervasive, but my colleagues and I have identified interventions that can improve attitudes. It really is about education – those with negative attitudes towards people with sickle cell disease just need more education about the disease and those that live with it every day.