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Patient-Physician Communication Tips From a Leukemia Specialist

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Published on January 21, 2020

Key Takeaways

  • A cancer diagnosis may force you to repriortize what is important in life. 
  • Don’t assume your provider knows what your short- and long-term goals are – communicate them before making treatment decisions.
  • Being both physically and emotionally ready for treatment are very important when making treatment decisions - both can impact your medical outcomes.

“What are you hoping to get out of this? What are your goals over the next six months?” Those are just two of the questions Dr. Mikkael Sekeres asks patients when he sits down with them to discuss their treatment options. Dr. Sekeres, a leukemia specialist at the Cleveland Clinic and published author, is an expert on wellness and the patient-physician relationship. Here, he discusses the importance of setting treatment goals, and how and why cancer patients should communicate those goals to their care team. Dr. Sekeres also introduces his latest book, When Blood Breaks Down: Life Lessons from Leukemia. Watch now to learn more.

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Transcript | Patient-Physician Communication Tips From a Leukemia Specialist

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Esther Schorr:

Hi there.  This is Esther Schorr in Orlando at ASH 2019, and I'm here with Dr. Mikkael Sekeres from the Cleveland Clinic. 

And I'll let you give your credentials so we know who you are.  

Dr. Sekeres:

Just another guy, but I guess—I'm also Professor of Medicine and Director of the Leukemia Program. 

Esther Schorr:

Thank you.  So what prompted me to get together with you today was hearing about a book that you've written.  I know that you've written a lot about wellness and about patient experiences and patient journeys in the past and short form, but you're about to publish a book about patients and doctors together and how they work together, leukemia patients. 

And I just felt that that would be an interesting thing to share with our patients from Patient Power who come to our website.  So maybe we could start—could you just talk a little bit about the inspiration for now writing a book like this from your experience with your patients. 

Dr. Sekeres:

Sure.  It's a great question.  The name of the book is When Blood Breaks Down, and the subtitle of it is Life Lessons from Leukemia, because I think there are a lot of lessons that I've learned from getting to meet so many incredible people with leukemia and that my patients have also learned.  It stemmed from—I’ve been writing now for six years for the well section of the New York Times, short for essays, as you mentioned, about patient experiences and about the special people I meet. 

You know, a lot of times we talk about the privilege of practicing medicine, and it is a privilege that I get to meet so many incredible people who are often at a crossroads of their life, not all the time but often when somebody's handed a cancer diagnosis that person's entire world shifts, and that person tends to reprioritize what's important in his or her life.  

My patients don't often complain about the traffic on their drive in to Cleveland to see me or the awful quality of the coffee that we have in our waiting area.  They're focusing more on being with their family, their friends, again reprioritizing what's important in their lives, and no individual journey is the same as another one. 

So in this book ,I write about three patients.  I write about an older gentleman who has a diagnosis of acute myeloid leukemia and who has a family who wants him to get treated for his leukemia, and he's not so sure that that's something he wants to do.  I write about a woman who is in her 40s who also has a diagnosis of leukemia, and her support system is a little bit different.  She's a single mom with a couple of teenagers, and it's her friends who come with her to all of her appointments and during her stay in the hospital.  

Esther Schorr:

So that's her support system. 

Dr. Sekeres:

So that's her support system, right.  And we create support systems that are not the same as the support system for somebody else.  

Esther Schorr:

Right. 

Dr. Sekeres:

And I write about a younger woman who's pregnant who has leukemia, and that's a real toughie, because she has to make a really hard decision about whether to take therapy that may put her baby at risk or not.  So she's thinking about not just one life but two. 

Esther Schorr:

Right.  So in those scenarios, what are the sort of the through-line of the relationships that has worked best for you as a physician and seems to work for the patients?  What's the dynamic there that patients should look to establish with their physician?  

Dr. Sekeres:

Yeah.  It's a great question.  The most important thing that I try to do when I first meet a person is to assess what that person's goals are, and everybody's goals are different.  If at my age I were diagnosed with acute leukemia and someone said, “Do you want therapy or not?” I would say, “Of course I do.” And the reason is that my goals right now with a stage of my life are to see my young children to adulthood, and I think anyone who's a parent—and it doesn't just have to be a parent.  Anyone who's a parent, though, knows that that's your job.  As a parent you've got to see your kids safely through to adulthood.  

If I were in my 70s, my decision might not be the same.  If my kids were already adults, if I had grandkids, if I'm satisfied with the things that I've done in my life, I might choose a different direction that keeps me out of the hospital a lot more.  So I look at that as my job as a doctor. 

But as a patient, if you feel as if your doctor isn't getting your goals or you haven't figured out what your goals are, it's worth taking a step back and figuring that out and communicating that effectively. 

Esther Schorr:

Right.  And I can imagine that that doesn't always happen, and sort of from the patient's perspective the shock of a diagnosis you're thinking just about, “What am I going to do about the disease,” and not necessarily what comes next.  So it sounds like having that dialogue even with the emotional stuff that's going on, whether it's you or it's a care partner, to try to engage with your physician about, “I need to figure out my goals before we can have a dialogue about what to do.”  Is that right? 

Dr. Sekeres:

Right.  There's almost this proscribed way that we interact in an examination room, right, where a doctor starts off with, “How have things been going for you?” Patient responds.  The doctor then volleys back and asks specific questions, and there's a rhythm to it and almost like a set of rules.  It's okay during that interaction to say, “Wait, I—you know, I don't want to go down this path yet.  I need to stop and figure out what it is that's important to me and if we've established that or not.” 

So there are oftentimes if I'm in a room with patients and their families and I see there's—they're just not there yet, right?  They haven't talked with each other and haven't heard—maybe it's the first time I'm presenting, wait a second.  There are options.  There's this spectrum of options that you may not have considered.  And I will say to a lot of my patients, I actually don't want you to make a decision right now.  I want you to drive home, sit across the table with your family, have a cup of coffee and talk this through, and here are the things that I would consider in that conversation. 

It's okay—you know, you hear a diagnosis of cancer, of leukemia, and immediately everyone in the family goes, “Okay, how can we get rid of it?  What's your treatment going to be?  Let's get started on the treatment as soon as possible.” Sometimes that is the right thing to do.  Sometimes it's not.  And it's okay as a patient or as a family member to put the brakes on that and say, “We need a couple days.”

Esther Schorr:

So what about a parent having to make a decision either about an aging parent or a child where there's someone in the middle who is a caregiver that has to in a sense help make or drive the decisions.  Is there—what happens in that dynamic where a child's too young to make a decision, and maybe an older person is not—doesn't have the capacity to?  How does that change the dynamics for the physician? 

Dr. Sekeres:

Ah, the sandwich generation, yes.  

Esther Schorr:

Yes.  

Dr. Sekeres:

A lot of us are in the sandwich right now. 

Esther Schorr:

Right.

Dr. Sekeres:

Well, I don't treat children, so I don't have the interaction at that level, although I do treat people who have children.  

Esther Schorr:

Okay. 

Dr. Sekeres:

And part of what we talk about deliberately is how do you talk to the children about a leukemia diagnosis, and probably most importantly inviting them to bring the child in to the examination room or in to the hospital, because invariably kids are imagining worse than what's actually going on.  So then it becomes a reality instead of this abstract awful name that everyone keeps talking about.  

Esther Schorr:

Got it.  Got it. 

Dr. Sekeres:

When it comes to a parent, once again, it's sitting down with that person and being deliberate.  And this is hard in some families.  Some families don't talk to each other.  Some cultures don't talk to each other.  But asking deliberate questions about goals: “What are you hoping to get out of this treatment?”  “What are your goals over the next six months?”  “You've just been given this diagnosis.  What does it mean to you? “ And it can mean different things to different people. 

Esther Schorr:

Well, and I would think the quality—what's the definition of quality of life for somebody, you know?  Do you want to go through six months of a difficult treatment, or is it this six months or can it be delayed a little bit, because there are certain things you want to accomplish in that time?  I would think that would be part of a conversation as well, timing, if you have the luxury.  

Dr. Sekeres:

Absolutely.  You just hit the nail on the head.  So there are some things that people want to get done, and they're not ready to take on cancer until those things are done.  And it can be something that seems relatively banal, like I have to get my finances in order at the bank.  I've heard that before.  Or it can be something really important.  I've got a wedding coming up in two weeks.  I have to attend that wedding, then we can deal with this.  

I have one patient who was just—wasn't ready to take on chemotherapy for his diagnosis and wasn't ready, and finally he said—he came in on the day when we had agreed that he would start therapy and he said, “Doc, I've been up all night long.”  And he looked it.  He looked just a mess.  And said I've been thinking about this.  I just can't do this today.  And I said okay.  Well, what do you want to do?  He said, honestly, I want to go to our beach house, I want to sit in a chair, and I want to stare at the ocean and think about where we all came from. 

Esther Schorr:

Okay.  

Dr. Sekeres:

And for him that was really meaningful, that he was able to take control of that, put a stop to the cycles we were going on, just heading down towards chemotherapy, and really think about his place in the world before jumping into chemotherapy.  And when he came back he was ready. 

Esther Schorr:

And do you think that affects outcome if somebody comes in to treatment and has their head on right about it?  

Dr. Sekeres:

So affecting outcomes, I'm going to interpret two different ways. 

Esther Schorr:

Okay.  

Dr. Sekeres:

We had a deliberate conversation in that instance about whether he would have a worse prognosis if he waited for his chemotherapy.  And sometimes you can't.  Sometimes…

Esther Schorr:

You can't wait. 

Dr. Sekeres:

…if you have a very aggressive cancer, if we're going to take chemotherapy we need to get started now.  Sometimes that happens.  But sometimes it doesn't, and you have the luxury of waiting a week or two.  I wouldn't have been comfortable with him waiting a month or two, but a week or two we could do.  

I will also tell you in my experience if somebody isn't ready to take on chemotherapy that that person is going to experience every side effect in the book that you could possibly experience with the chemotherapy. 

Esther Schorr:

It's where your head's at. 

Dr. Sekeres:

It's where your head's at because you don't want—you're not ready at your‑‑psychologically, you're recoiling against it.  Physiologically, you're recoiling against it.  You're just not ready to go there yet. 

Esther Schorr:

Mind‑body connection maybe?  A little bit?  

Dr. Sekeres:

I absolutely believe in that, I really do. 

Esther Schorr:

So I guess in summary what would you—you know, our audience is mainly patients and their care partners, and we call care partners are anybody who is concerned about or cares for a patient, in this case with leukemia.  What would you say to them?  You know, they're going to look at‑‑they may read your book.  They may have a relationship with their specialist.  What should they take away from all of this discussion we've just had?  What's the nugget there for them going into this? 

Dr. Sekeres:

So I would go with a couple of nuggets from this.  The first is don't assume that your healthcare provider knows what your goals are and what you want to accomplish with any type of treatment.  Make it crystal clear.  

The second is to establish those goals and to be deliberate in having a conversation that's very direct about what a person with a new cancer diagnosis wants to get out of the next few months. 

Esther Schorr:

Perfect.  Doctor, thank you so, so much for taking time to talk to me. 

Dr. Sekeres:

Of course.  Thanks for having me on. 

Esther Schorr:

No, it's our pleasure.  This is Esther Schorr, and just remember that knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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