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Our AML: The Importance of Partnership

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Published on March 30, 2021

How Can Partnership and Communication Improve AML Care?

The topics of onco-psychology, mental health, and the trauma that can be experienced by patients with acute myeloid leukemia (AML) are often overlooked. Keep watching to hear AML patient, reporter and patient experience advocate Loriana Hernandez-Aldama talk with AML expert, patient experience researcher, and palliative specialist Dr. Tom LeBlanc from the Duke Cancer Institute to bring attention to these issues. They discuss the importance of partnership and communication with your medical team, how to talk about anxiety and your mental state with your doctor, and what care partners can do to help their loved ones through this process. Ms. Hernandez-Aldama and Dr. LeBlanc work together on patient experience research and have first-hand knowledge to share about what is working and where the field still needs to improve.

Support for this series has been provided by AbbVie Inc. and Genentech, Inc. Patient Power maintains complete editorial control and is solely responsible for program content.


Transcript | Our AML: The Importance of Partnership

Loriana Hernandez-Aldama: Thank you so much for joining us. My name is Loriana Hernandez-Aldama, and I'm a former news anchor, two-time cancer survivor, and also former medical reporter who really found myself on the other side of healthcare when I was diagnosed with AML leukemia, and five years later with breast cancer. So today, I want to join and introduce Dr. Tom LeBlanc, who I had the honor of meeting when we co-authored an abstract on shared decision-making, which as we know is so important when we're talking about any cancer, but specifically AML. Tom?

Dr. LeBlanc: Thanks so much, Loriana. Hi, everybody. I'm Tom LeBlanc from the Duke Cancer Institute in Durham, North Carolina. I'm a leukemia doc and also a patient experience researcher. I see and treat and study patients who have acute leukemias like AML, which we will be talking about today. And I'm really delighted to be here with you, Loriana, to be talking about partnering together—patients, doctors, and their entire cancer care team—to achieve the best outcomes.

How Can Partnership and Communication Improve AML Care?

Loriana Hernandez-Aldama: And it's not that I have my care team, it's that we're all on a team together. And it is the importance of shared decision-making, especially when you're diagnosed with AML leukemia. It's one of the type of cancers that in an instant, I think within 48 hours of my diagnosis, I had chemo running through my veins. There's not a lot of time to really think. It's important to, what I say, get a pit crew around you to support you and really with the wraparound services to get through this.

Dr. LeBlanc: Absolutely. I like the pit crew analogy.

Loriana Hernandez-Aldama: I was hospitalized for a year, separated from my then two-year-old son, and I said, "I need a pit crew, not a tribe with the same skills. I need a pit crew to help me successfully get to this finish line." Because it wasn't just a medical fight, it was an emotional fight. It wasn't just physical. It was emotional, and the trauma just never seemed to stop. I couldn't lean on my doctor for everything. And I say that with respect because you have so many patients and there's so many other issues that we're facing as a patient.

Dr. LeBlanc: Oftentimes doctors and other kinds of clinicians don't know how to attend to those really important person-centered kinds of issues. What you're describing is very, very common. We often hear from patients and families that they were completely shocked that this diagnosis is so sudden, that they were feeling well a few weeks earlier.

They might've been out running a marathon or biking or doing whatever it is they do in their daily life, being a normal, happy, healthy person. And then all of a sudden, they are sort of abducted by this illness and admitted to the hospital. Oftentimes not always knowing exactly what's going on right away, but getting little bits of information that are really scary over the course of a couple of days.

And then all of a sudden having to make this sometimes really life-or-death treatment decision like you're describing, and then maybe being stuck in the hospital for the next month or more. It is so unlike so many other cancer scenarios and so distressing that it really takes that pit crew. It takes a village to support the patient and their family through it.

Loriana Hernandez-Aldama: I often said, and I agree with you on every bit of this, that I had to find out how to be an equal partner in my own success. The psycho-oncology side is one of the biggest voids, even though I was at a well-respected institution with incredible doctors and I'm alive here because of them, the biggest void was the psycho-oncology. Are you seeing a shift in that? Because I still suffer to this day with PTSD.

Dr. LeBlanc: Psycho-oncology services are so incredibly important and really helpful for so many of our patients and families dealing with AML and really any kind of cancer. And yet, they are probably quite under-utilized for various reasons. But what you're describing around really what I would call medical trauma, this idea of having post-traumatic stress because of such a difficult experience, in some ways, maybe it's not that different from other traumatic experiences like a car accident or being in war. They’re different experiences, but they're all traumatic.

We have found actually that by adding extra support to the cancer care team by way of a palliative care specialist, we have found in some trials that we've done in AML patients or in patients undergoing STEM cell transplants that we have been able to reduce post-traumatic stress symptoms and post-traumatic stress disorder even six months later after the hospital stay—by adding a specialist to the cancer care team who is more expert at dealing with these kinds of important person-centered issues that maybe the leukemia doctor, or the nurses or the other folks on your pit crew aren't as adept at dealing with. And maybe it's not their top priority when they're worried about the medical complications, the infections, the chemo dosing and the monitoring, and so on.

Loriana Hernandez-Aldama: Right. I agree, because I would always say, if you can't give me the mental state to stay in the game, you're going to lose me. I said, "I don't need a therapist to stop by my room for five minutes. I need an hour. I need someone to help me really stay in the game," and it's a win-win for everyone. If you can help me mentally want to stay in the game, then you could help the patient outcome, the compliance, and overall, everybody wins. What can patients do? I know I'm so type A, I drove my doctor crazy, and I love him and I know I'm his favorite pain in the neck.

But what can patients do to...I know as a patient, when you come see us on rounds and we don't want to burden you with, "Listen, I'm mentally cracking," how do we not feel like we're burdening you, but can you connect us to the right people for that emotional state?

What Are Some Strategies to Improve the AML Patient Experience Physically and Emotionally?

Dr.  LeBlanc: Yeah, it's such an important question, and it's also unfortunately a difficult one to answer. But what I think is most helpful is to ensure that patients and families know that we want to hear their concerns. We want to know how they feel and what they're going through, and we really need to be prompted sometimes to do something about it. A good example might be to say expressing an emotional concern to a physician or to other clinicians on the cancer care team could be done in a few different ways.

And maybe the way that you do it is much more likely to be associated with a meaningful response. What I mean by this is if you say that you're scared, that you're upset, that you're tired, whatever it is that you might be feeling, the natural response from an oncologist might be to say, "It's going to be okay. I'm with you. I hear you," and to validate that emotion. And that's really great, but maybe that's not actually what you're wanting and needing. You're not asking for validation, but really asking for help and what can we do about it.

So maybe encouraging patients and families to be more direct about these kinds of concerns and to not just say what the issue is, but then to ask for something specifically. It really, I think, forces the cancer care team to respond in that type of a way. So for example, to say, "I'm really having a lot of difficulty with anxiety, and I think I need to talk to somebody. Who could you get in here to talk with me specifically about this problem?" That makes it much more concrete.

And then the clinicians are thinking, "Can I call a consult? Is there a family therapist here?" You think it would sound really obvious that you might make those sorts of connections, but actually most of the time when patients and families express these kinds of emotional concerns, we try to just reassure them and that's where it ends. And as you're describing, that's usually not enough or often it's not enough.

Loriana Hernandez-Aldama: I would always tell my doctors, "If you could help me remove the noise so I could focus on the fight, I can be fully in this game." You're saying rather than saying, "I'm stressed, and I'm anxious," like saying, "My 72-year-old mother is taking care of my two-year-old and I can't find childcare, what social worker or who can help me with that, so I could get off the phone and focus on the chemo and the walking and really being in this game so I can get out and be with my family eventually?"

Dr. LeBlanc: Yes, absolutely. Yeah, being more direct and more concrete about it. I'm having this issue. Who can I talk to about this? And sometimes, especially in hematology, we often feel like we have to be responsible for everything. That we have to fix all the problems. We have to attend to all of the issues. We have to cure all of the diseases, and one person can't do it all. I'm going to go back to the pit crew analogy. You need somebody changing the tires. You need somebody filling the fuel.

There are all different jobs, and there are different people who are equipped to do those jobs better than others. And it often is not going to be the leukemia doctor who's the right person to deal with some of these person-centered issues. They're the ones you want prescribing the chemotherapy and monitoring the medical complications, but maybe they're not the best or right person to help you with the coping aspects that are really more longitudinal.

This is where we have seen psychiatrists, psychologists, palliative care specialists, and other kinds of specialist clinicians be more helpful and adding them to the pit crew, to the cancer care team, to the leukemia care team can really improve patients’ and families’ experiences of illness.

Loriana Hernandez-Aldama: Dr. LeBlanc let's talk about caregivers, because a lot of times, and especially during COVID, it's been difficult. I get calls all the time when the caregiver needs help of, when am I bugging the doctor? How much do I share with the doctor? Do I just talk about the medical issue or the full picture? When should caregivers reach out, and what do you want to hear from them?

What Advice Would You Share with AML Caregivers?

Dr. LeBlanc: Yeah. Well, it's tough to balance these different concerns. On the one hand, you don't want to be a bother, but on the other hand, you're taking care of a person, usually somebody who you really love, and you might be their only advocate and their mouthpiece if they can't speak for themselves. You have to feel comfortable speaking up when you're not sure what to do or when you're really worried about something. I would bet that most or all physicians and other clinicians would really, really want to know.

If a caregiver is genuinely worried or concerned about something, I think probably we're all going to say, "Call us. Don't have any doubts about that, and it's not a bother. That's why we're there." The challenge then is to know what should you worry about, what do you ask about, what do you not. And that's where it gets a lot trickier to really know what to do. But if there's ever any uncertainty, always ask.

What I see is that most places, most clinics, most institutions are structured in a way that when you call and ask for help, there's somebody who you get to pretty early on whose job it is to figure out who to pass that onto, who's the right person. It's like triage when you come to the emergency room. Are you a level one trauma? Are you a level five who just needs a medicine refill and maybe you don't really need to be in the ER, but you didn't have anywhere else to go? Is it somewhere in between? Is it maybe a heart attack or stroke, where we really need to move quickly?

Loriana Hernandez-Aldama: And it seems on some of the calls, because of the pandemic, because of visiting hours, that caregivers can't be there as long as they feel left out of the loop. Again, recently I had a call, "I don't know how my husband's doing. I don't feel like I'm getting answers. Who do I bug?" What do you make of that? I'm sure you've seen the challenges over the year.

Dr. LeBlanc: Yeah. This has been a particular problem and challenge during COVID. And I think actually we at Duke have been a bit more fortunate in this regard that the pandemic hasn't hit nearly as hard in this area as in some of the other larger Metro areas, where we never completely shut down visitors in the hospital. We restricted hours. It's a little more liberal at this point. We're limited in numbers of people, certainly still doing the right thing and keeping people safe.

But we are allowing some family members and caregivers into the clinics and to the inpatient units, because this is a problem and issue. It's so important. For example, when there couldn't be visitors until the afternoon, well, all of the doctors would round in the morning and they'd be done seeing patients, and then the family members would come in and wouldn't know what was going on. What I usually encourage patients and caregivers to do is to just be really clear about it at the start of a clinical encounter, whether it's in the clinic or something happening in the hospital room. When the doctor or the nurse practitioner or the PA, whoever it might be, comes in to say, "Hold on a moment. Before we get started, let me get my caregiver on the phone." So, hearing that kind of a request, it makes you stop and say, "Oh, hold on a second. Let's let this happen and let's reset and do this in the right way." I think most people will be very accommodating of those really important requests, because they're the right thing to do for everybody.

Loriana Hernandez-Aldama: I think it's great advice to be able to call your caregiver and have a phone handy so they can FaceTime or do some sort of virtual visit so they could take notes. One other thing I wanted to mention, and I mentioned that I went from AML leukemia and then on the fifth anniversary, which was a big deal after surviving leukemia, thinking I'm having a big gift, but I got a phone call saying I had breast cancer. And when I went over to the breast cancer space, while I'm so in awe and so happy they've made so much progress, I get choked up saying it.

But when I walked within the same medical institution to the breast cancer side, the patient navigators, the parking help, the food help, this help, it was like going to Disney. And I walked in and I sobbed, and I cried. And I said, "Where are all of you in the blood cancer space? Because we need you too." And I realized at that point that all cancers are not equal, and all resources are not equal, and I am still in awe. I'm happy because we need to make progress in all cancers. But are you seeing any more progress, more patient navigators, more resources, support, for AML patients and blood cancer patients?

Dr. LeBlanc: Not enough. Yeah. What you're describing is I think unfortunately very, very true, and there are certain diseases that get a lot more attention and funding. So, there are unmet needs around research dollars to improve outcomes. And some of that is about treatments, but some of it about supportive care services and resources and things like navigators. We definitely need more investment in this area.

Loriana Hernandez-Aldama: We need more funding, more navigators. I'll take some. We'll all take some, I think it's so important, and I'm hoping that we start to see that change in the years to come.

Dr. LeBlanc: Me too.

Loriana Hernandez-Aldama: And I feel like I have an obligation to be transparent, having been on the air and having the spotlight on me from viewers, and I feel like if I can be open about my life and the trauma, I feel like I've been through the trauma Olympics, and I've had to be transparent because people reached out and they don't feel comfortable talking publicly about the depression and the PTSD and the suffering. And I feel like I have an obligation. I said, if I lived, I would do this and pay it forward forever. But I went from living the life with a great career to fighting for my life, and then at some point with the PTSD wanting to take my own life. We have to do better; we can do better.

Dr. LeBlanc: Thank you for all that you're doing to help beat this drum because it's really, really important, and it's not talked about enough.

Loriana Hernandez-Aldama: As an AML survivor and advocate, I have never been more hopeful about the progress we are seeing now in the field of AML leukemia. I want to thank you all for joining us for this great discussion. And as we say at Patient Power, knowledge is the best medicine of all.

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