Finding the Right Words for My Patients’ Hard Questions

Finding the Right Words for My Patients’ Hard Questions

Prateek Mendiratta, MD

@cancerdocinevo
Jun 26, 2017

On a recent visit to DC, I found myself feeling inspired—regardless of your politics, it’s almost impossible not to. At each monument, museum, memorial, and government building, I stood in awe of the boldness, faith, hope, and determination of our founding fathers and their unwavering belief in the future success of their American experiment. So many of these sites are inscribed with famous quotes from leaders who inspired generation upon generation with their words, quotes that laid the foundation of our country. The pen is indeed mightier than the sword.

Words matter. We use words every day with our patients along their cancer journey, and we can’t forget that our patients hang on to every word we use. These words can heal, provide comfort, and embolden hope; our words can also cause harm and be misinterpreted, leading to damaged relationships with our patients. As oncologists, we need to embrace our words and make efforts to better communicate with the people we care for.

Good communication isn’t learned overnight. It takes many years of watching and modeling mentors who are blessed with this subtle skill, as well as training and practice. Even the most seasoned attending will admit that this is a skill that they never stop honing.

By the time the patient is sitting in your waiting room, their life has already been altered by a word, just one word: cancer. They need a compass for the journey they are about to undertake, and we as the oncologists must be that compass and guide the patient regarding the next steps. And this can be hard for us, no matter how knowledgeable we are.  Unlike actors, we don’t have scripts that we can fall back on or a director who can prompt us with a line. When we are speaking with a patient, the words come from our heart, spirit, soul, and are shaped by our past experiences and an understanding of the individual in front of us. Sometimes we connect and build the bond needed to take care of the patient, and others time we fail. Just like we can’t accept the status quo of cancer treatment failures, I feel we can’t accept failing our patients with our words.

After 8 years in practice, there are still questions that I struggle to answer. They unfortunately find a way into my clinic daily.

“Doc, so are we going to cure this cancer?” When I was an internist, I wasn’t curing patients diagnosed with hyperlipidemia, diabetes, or coronary artery disease. I was controlling their diseases and trying to prevent future complications. But cancer is different. Telling my current patients that my hope is to control their cancer and turn it into a chronic long-term disease that can be managed with medications that cause low toxicity and minimal cost usually isn’t the answer they want to hear.

“Doc, if this was you, what treatment—if any treatment—would you choose?” Even though I know this question is coming, the answer is always a moving target. Every patient has their own desires and wishes based on their faith, family, socioeconomic background, and their different attitudes and biases about life and death. Any answer I give to this question would be colored by my own biases, which doesn’t sit well with me. When I’m inevitably asked, I seek to find words that support them through the decision-making process and convey comfort and solace that they are making the right decision for them.

So where can we go to fine-tune our words to help our patients? I have been blessed to have many mentors from med school, residency, fellowship, and partners who have taught me how they connect with patients. The words matter, and so does the delivery. Turning the computer off, listening, following your patient’s cues, and reacting to their emotions demonstrate that you sincerely mean the words you’re saying.

Luckily, there are people smarter than me who have mastered this fine art of communicating with patients. I strongly recommend Oncotalk. It is really an amazing resource for oncologists in all types of practices to learn how to communicate more effectively to enrich the patient experience. I have worked at institutions, such as the Cleveland Clinic, where all physicians are encouraged to step outside their comfort zone and take dedicated classes where tools for effective communications are given in practical ways that we can take back to the clinic and improve our visits with our patients.

Although it is very hard to pick one, my favorite memorial in our nation’s capital is the Jefferson Memorial. It is secluded and isolated in the Tidal Basin, yet from that vantage you get a view of every important place in the capital: The White House, Washington Monument, U.S. Capitol, and Lincoln Memorial. Thomas Jefferson knew that the infant country would grow over time and wrote that “laws… must go hand in hand with the progress of the human mind.” His words remind me how we as oncologists must continue to evolve to serve our patients well. Just as we keep with up the groundbreaking scientific advances that are occurring daily in diagnosis and treatments, let us also work to improve the words we speak and how we deliver them. Take time in every clinic day to reflect on your patient interactions. Hopefully, you will be surprised to see how well you are doing, and maybe you will discover something that you have the ability to change and improve. Your patients will thank you for it in the long run.

Originally published on Cancer Doc in Evolution; reprinted with permission.

Read more about provider-patient communication on ASCOconnection.org:

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Comments

Debra L. Madden, BA

Jun, 29 2017 1:13 PM

Dr. Mendiratta,

I can't thank you enough for the thoughts you've shared here with your colleagues.  As a two-time cancer survivor who is also an active cancer research advocate and blogger, I couldn't agree more with what you've written here.  I've been blessed to have two superb oncologists, my first when I was diagnosed with stage III Hodgkin's lymphoma at the age of 22 years, and my second following my diagnosis of breast cancer secondary to the chest radiation I'd received 20 years earlier.  Both of my oncologists knew that words truly do matter, as did their remarkable staff.  In both cases, it was my oncologists' truthful, direct, comforting, and reassuring words that helped me and my family get through these truly life-altering periods.  My second oncologist recently retired, and I now have a third oncologist.  Although she is a good person who has dedicated her life to helping cancer patients, unfortunately, she does not seem to recognize just how important every word is--how as patients, many of us examine every word said by our oncologists, evaluating all nuances of their meanings and the tone with which they are said.  Due to my history, including additional late effects secondary to my treatment for Hodgkin's, I'll need to be followed by an oncologist perhaps for the rest of my life.  Sadly, if my new oncologist doesn't learn just how much her words matter, I'll need to search for my fourth oncologist. 

Bless you, and thank you for everything you do every day for your patients and their families. 

My very best wishes,

Debra Madden

Musings of a Cancer Research Advocate: https://draemadden.wordpress.com/

@AdvocateDebM

Prateek Mendiratta, MD

Jun, 29 2017 3:08 PM

Ms Madden,
 
Thanks again for taking the time to read my blog and for commenting.  It is deeply appreciated.  Your courage and strength remain a testament to all cancer patients and happy to hear you have successfully battled your cancers.  I am glad you had wonderful oncologists in the past guide you , and hopeful that you can find some balance with your new oncologist.  I will definitely read some of your blogs and thanks again for your kindness and continued success and happiness.
 
Best,
 

Prateek Mendiratta

Brenda Denzler

Jun, 30 2017 9:09 AM

I can think of a few hints for the "learning to communicate better" part of oncology practice.

(1) Never dismiss a patient's concern by saying, "Oh, that's easily managed," as if the thing about which the patient is concerned is inconsequential.  It **is** consequential to the patient, and should be treated accordingly.  In my experience as a cancer survivor mentoring new cancer patients, I try to begin my answers to such questions with an acknowledgement that what they've brought up is a good issue, or an important issue, or a worrisome issue.  I try to legitimate their concerns--not dismiss them by saying, "Oh, that's easily managed."  I try to indicate that I don't blame them for being concerned or scared or uncertain.  That it is entirely reasonable to feel that way.  If I felt the same when I was in active treatment, I say so.  But, I say, here's what we know about that.  Or I say that there are some things we can do to try to address it. And I tell them frankly if our ability to respond to the issues they've brought up is only partial, medically.  I say I'm really frustrated that it's not better, but....(Get the picture?) 

(2) If the patient keeps asking you about the same issue over and over, on repeated visits, realize that the same answer you have supplied over and over is not doing the job, and start engaging in very, very active listening to figure out why it's not, and what the patient needs to hear from you instead of your typical, tried-and-true response. 

(3) Understand that you use words, in Cancer Land, in a very different way than they are used in the "real world."  Don't forget what it was like NOT to have the vocabulary of cancer in your head--because that's where your patients are.  They don't have that vocabulary.  You think you are communicating, using common words, but you forget that those common words have very distinctive meanings in the world of oncology.  Words like "survival," for instance.  Or "treatment." 

(4) This is really a corollary of (3) above, but.... 

When you have to tell a patient that they have terminal disease, do NOT rush on to say, "But we do have some treatment options."  If you stop and think about it, you know good and well that what they are hearing is, "I have what they say is incurable cancer but my doctor doesn't believe that.  He's treating me and trying to save my life.  I'm going to believe in my doctor.  He thinks one of these treatments will save my life, and so do I!!"  Uncomfortable as it is for you, you need to linger a bit over the "incurable" message.  Express your sorrow at this announcement.  Explain that medical science just doesn't know--yet--how to cure most cancer when it has reached this stage.  AND you need to explain very explicitly that "treatment," in the case of people with a terminal diagnosis, does not imply an intent to cure.  THEN you can deliver the hopeful message that a series of different treatments, over time, may not cure them, but they should help to extend their lives *to some degree.* Explain that the best case scenario would be that the treatment would shrink the cancer and make it less troublesome, but this doesn't always happen; next-best outcome would be that it will stabilize the cancer so that it doesn't grow any more; an acceptable outcome would be that it will slow the progress of the cancer so that it doesn't grow so rapidly.  You must explain that sooner or later, cancer is wily enough to figure out how to overcome the treatment.  It will start growing again, because it's Stage IV cancer, and then you will move to a different treatment, with the same goals in mind. 

(5) Try very hard to resist the urge to use the word "chronic" when you are talking about treatment for Stage IV disease.  This word has a heck of a lot more currency and panache with health care providers than it does with patients, I can assure you.  In fact, many of us find it rather offensive because it's dismissive of our experience--and our prospects.  When cancer patients can routinely expect to live decades with their disease, with minimal side effects from the drugs they take to control it -- like patients with type II diabetes do, for instance -- at that point the medical profession will have truly earned the right to use the word "chronic" to describe treatment for terminal disease.  I understand that from the provider point of view, because even end-stage disease is no longer immediately fatal, it may seem TO YOU as if cancer has been turned into a chronic disease that you have to manage.  But I ask you: Are we going to have a cancer vocabulary that reflects the providers' experience--or the experience of the patients who have it?  A lot of the terminology in Cancer Land of necessity has to reflect the provider's view of things.  This is not one of those situations. 

(6) Don't forget how smart you are.  I sometimes have to tell my doctors, "Talk dumb to me!"  They forget that the words they use and the concepts they are trying to explain to me are sophisticated things that I sometimes don't have the background to be able to understand on their own terms.  At this point in time, I can often tell when I'm getting lost in the weeds, during a discussion, and call a time out.  And I know what questions to ask to try to get clarity.  But in the early days of my diagnosis, I didn't always know.  I knew I was confused and wasn't getting it.  But I couldn't explain what part was confusing or why it was confusing, or where we were not communicating effectively.  I would often fall back on asking my doctors to explain it to me like I was a 5-year-old--it wouldn't insult me!  And if that was too simple, we could ramp it up from that point. 

I hope these suggestions help you -- and others -- in their quest to become oncologists with better communication skills. 

Prateek Mendiratta, MD

Jun, 30 2017 2:08 PM

Ms Denzler,

 

Thanks again for taking the time to respond and comment on my recent blog.  Your suggestions and comments are right on and truly will help me with my communication skills in the future.  Your recommendations are deeply appreciated.

Best,

Prateek Mendiratta

 

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