Clear communication can make a meaningful difference during AML treatment. Dr. Anand Patel, an AML specialist, explains why patients should never hesitate to report symptoms, ask questions, or speak up about concerns during care. Dr. Patel also shares how care partners and loved ones can play a vital role in advocating for patients, helping communicate what matters most throughout AML care.
Dr. Anand A. Patel is the Medical Director of the Inpatient Leukemia Service at the University of Chicago Medical Center. Learn more about Dr. Patel.
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Transcript
Katherine Banwell:
Dr. Patel, we know how important it is for patients to speak up and advocate for themselves. If something doesn’t feel right, whether it’s side effects, the treatment plan, communication, or lack of, what should patients do?
Dr. Anand Patel:
I don’t want to speak for all of my AML-treating colleagues out there. But I would say, at least for my colleagues at the University of Chicago, we very much communicate. We would much rather hear about something and be able to reassure a patient, than not hear about it, and then find out that they needed to go to the ER or got sicker.
So, in my mind, overcommunication, rather than under-communication, is key. Early communication of symptoms is essential, because for a lot of the symptoms that may pop up, for example, nausea, we kind of have a standard anti-nausea regimen, but there are various levels that we can step up to, if needed. We can add more of these, what we call “as-needed medicines.” We can come across a more standardized anti-nausea scheduled regimen. So, taking these medicines on more of a daily or couple times a day basis, if the nausea is prevalent. But we can only do that if we know that these symptoms are happening.
The other kind of alarm bell symptom that we always want to hear about is fevers in our patients with AML. So, a fever is almost always a medical emergency, meaning antibiotics need to be initiated, patients need to go to their closest ER, be observed in the hospital, if they’re having high fevers while undergoing AML treatment.
In that same way, we can only know to pass on that kind of advice if we hear about someone having a fever at home. And the other example I’ll mention is mucositis, or rawness of the mouth. Oftentimes, patients feel like they have to kind of just deal with it, but we do have good opportunities, whether it’s mouthwashes or otherwise, to help kind of control the symptoms related to mucositis. And it’s so essential, because you want patients to be able to maintain eating as well. And if your mouth is raw, you’re not going to want to eat. And as you don’t eat, you may not maintain that strength that you need to continue with treatment and kind of get through treatment safely.
Katherine Banwell:
Yeah. Yeah, that’s good advice. Care partners play an important role in helping patients during their treatment. How can they support patients in advocating for the best possible care?
Dr. Anand Patel:
I always try to communicate to my patients that, when possible and when able, going through the journey of AML alone is incredibly daunting and very difficult. So, leveraging that support system around you, whether it’s friends, families, other sorts of advocates that may be in your life, that is key and essential. And the reason for that is, when patients are feeling at their worst, is when it’s the hardest to do those sorts of things like communicate, or pick up the phone call, or push for something specific to be done.
Having a care partner, someone who is there with you that knows what your preferences are, that knows, through years of interaction with you – again, whether it be a spouse, a family member, a close friend, whoever it may be. Having that person, and really empowering them to say, “If I’m not feeling well, if I’m not feeling like myself, I know that you will be able to speak up for me and be able to communicate what is important to me.” I think that is incredibly valuable.
With that, the earlier those discussions happen with a patient and the support system around them, the better it is. Because when you are at your sickest, again, is when it’s hardest to make sure that the people around you know exactly what it is that is important to you, versus not. So, oftentimes, I encourage patients to have these conversations, even when the diagnosis is first made. That, “Who do you see as your support system around you?”
“Who are the people in your life that you see as your best advocates? And have you had the opportunity, either before this diagnosis or since, to communicate with them what all it is that’s most important to you? And when you want them to kind of step up for you and be your primary communicator if needed or make sure to voice concerns that you have, if you aren’t comfortable voicing them.”