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How Can AML Patients Benefit From Shared Decision-Making?

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How Can AML Patients Benefit From Shared Decision-Making? from Patient Empowerment Network on Vimeo.

How can shared decision-making benefit AML patient care? Expert Dr. Sara Taveras Alam from UTHealth Houston explains how she works to set patient expectations from diagnosis and throughout the treatment journey and patient factors that play into decision-making.

[ACT]IVATION Tip

“…patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, how do you involve your patients and families in the shared decision-making process, both at initial diagnosis and then going forward?

Dr. Sara Taveras Alam:

From the initial diagnosis, I do try my best to explain what the life of an AML patient looks like. This can be very overwhelming and we tend to need to repeat ourselves throughout the patient-doctor relationship, most of our patients unfortunately, require a one-month-long admission initially at diagnosis, most of our patients receive diagnosis and remain in the hospital while they get their first treatment and recover from that. And that’s a very big journey to go through, and we want to make sure that the patients themselves are well-informed and their family and caregivers are well-informed of what this will mean for them as well.

Many of my patients may have children or parents or spouses that they themselves are the caregivers for and then they need to make arrangements for that while they’re going through their health process. So I believe that the decision to receive treatment is not a decision that doctors make for the patients. It’s a decision that should be made by the patient, and although most people will choose to receive treatment offers for acute myeloid leukemia, I will have some patients that may have been older and may have gone through other health issues and do not want to spend the rest of their lives in this process and that is their choice to make.

So I really do try from the very beginning to make sure I set an expectation of what life will look like with acute myeloid leukemia, and what that looks like initially is about a one month long hospitalization with chemotherapy, a lot of transfusions, monitoring for infections, and after that time period, it will have a lot of clinic visits, sometimes twice a week, and possibly re-hospitalizations for treatment depending on the treatment decided upon. We have more intensive chemotherapies or aggressive chemotherapies and lower intensity chemotherapies, that’s also a shared decision. 

There may be patients who are appropriate for intensive chemotherapy in terms of their fitness or age, but may be afraid of the side effects that that could entail, and it may be appropriate for them to go with a low intensity, and that’s an option for them. So I think that ultimately, my activation tip for the question is that patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.

One example is, we’ve had a patient whose daughter had a sweet 16 and her re-admission was scheduled during that time, but it was really important for that patient to be with her daughter on her birthday, and we just pushed on the admission. If the patients bring up what their concerns are, we’ll do our best to accommodate as long as it’s not a risk to them.

Lisa Hatfield:

Great, thank you. And for all the patients listening, it’s nice to know that we can ask our providers if we have a special event, can this be changed, is there any chance of altering the timeline just a little bit. So thanks for that tip. We appreciate that.

Dr. Sara Taveras Alam:

You’re welcome.

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Empowering CLL Patients for Treatment and Survivorship

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Empowering CLL Patients for Treatment and Survivorship from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) experts help empower patients? Expert Dr. Danielle Brander explains ways that she helps her patients prepare for treatment and survivorship.

Dr. Danielle Brander is an Assistant Professor in the Division of Hematologic Malignancies & Cellular Therapy at Duke University Medical Center. Learn more about Dr. Danielle Brander.

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Transcript:

Lisa Hatfield:

“As a CLL expert, how do you help empower your patients so they can get the most out of their CLL treatment and survivorship? How do you work with them as a team to make sure, I guess they’re having the best outcome they can?”

Dr. Danielle Brander:

Absolutely. So it starts at the start. I guess so for conversations, meaning for those that don’t need treatment right away building the relationship, understanding how I can help patients and their caregivers help, for example, they like to learn how much they want to know, what resources can I connect them with. And then I think it’s important for them to have other team members that they can go to and talk to and hear it from, because sometimes the same information we can just share in different ways or approach differently. The nurse on our team or our pharmacist or I work with a wonderful group of nurse practitioners and physician assistants as well. And so from the beginning, I want patients to feel free to ask the questions that come to mind.

It’s amazing, of course, during the course of the visit when you’re going over your labs and that, that sometimes it’s easy to forget the questions you came in with. So, of course, anytime you can write them down before coming in, write them down and then maybe prioritize because all of us…I think it’s hard to remember everything. So prioritizing the questions we want to make sure we get to and go over as well as know that these same questions are going to mean different things to you the longer you’re living with your CLL. And so it’s okay to ask the same questions. Again, there’s never a question that any of us mind going over several times. And then just know how the team can help you. You know, are you coming? How much information do you want?

How much input do you want us to put? And what is your importance and priority? At the end of the day, I want all patients to know no one knows what it is, like living with it. No one knows what’s most important as much as you and your family or your caregiver team does. And I learn just as much from patients and the way they share their experiences. There’s a lot we can look at a group of patients with CLL and say how different each patient’s experiences, who needs treatment or not, who has side effects or not. But no one’s going to know as much as as you do living with it. And it’s our hope to help you wherever you are in your journey or whatever ways that we can help you.

Lisa Hatfield:

Well, and I appreciate your comment that we can ask the same questions over and over if we need to. I know my oncologist when I first met with him, I felt guilty taking in more than two questions, but right before he moved, I took in a long, I rolled up a piece of paper, a long scroll, and I said, I have some questions for you, but I knew they were all repeat questions. But it does give us a little bit of peace of mind just hearing it again from somebody, especially in those initial phases of treatment, just hearing it, even if you have to hear it again and again. So thank you for mentioning that. It makes us feel a little more confident in taking those concerns to our providers, even if they’re repeated concerns. 

Lisa Hatfield:

Dr. Brander, it’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you very much for joining us.

Dr. Danielle Brander:

Thank you for having me.

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Who Is on a Patient’s CLL Care Team?

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Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.