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Why I Write: A Doctor's Tribute to Her Mother

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My mother, Sandy Ying Zhang, is my role model and my inspiration for what I do every day. She was diagnosed with breast cancer when she was in her forties, and fought it courageously for seven years until she passed away in 2010.

There are so many stories I can tell about my mother and her battle with cancer. Let me start with just one. Whenever she'd go to her oncologist, she would go armed with a list of symptoms. To his credit, the oncologist was always good about giving her a working diagnosis that made sense of her symptoms. Still, though, she often called me to complain that she didn't understand the diagnosis and how her symptoms could possibly be attributed to it. For example, she went to her doctor once because her stomach was hurting. He thought it was due to constipation caused by her 'medications', and asked her to take some stool softeners. She couldn't understand why'if her 'medications' were the cause of her problems, why was he telling her to take more of them?

I knew that what her doctor meant was that he suspected her abdominal pain was due to constipation, which was caused by the pain medications she was on'but either he didn't explain this to her, or she didn't understand what he said. 'So why didn't you ask the doctor about it?' I would ask.

She never had an answer to this, and it took me a long time to see her perspective'the patient's perspective'about why she was so reticent. Asking her doctor questions just wasn't something she thought she could do, and no amount of cajoling on my part could get her to change her mind. That didn't mean she would eventually agree with the doctor; actually, she often disagreed, and often didn't follow his treatment recommendations. Throughout the entire time she was ill, I didn't understand the logic, and attributed her reticence to her having come of age in China. However, I didn't quite understand, because she was a schoolteacher in some of the roughest parts of Los Angeles and never had trouble standing up for her students. So why couldn't she advocate for herself when she needed it the most?

As a doctor, now, I see that my mother was hardly alone: many patients are genuinely afraid to challenge their doctors. And I don't mean challenge the doctor as in pick a fight with them, but even to ask basic questions. When I talk to patients about their diagnosis, they tend to nod and agree with almost anything I say. Sometimes, they'll ask a question or two; very infrequently does someone actually stop me and say, 'Hmm, that doesn't sound quite right'. In speaking with patient advocates about this, it seems that patients think they would be rude or presumptuous to question a diagnosis, especially since they think they know so little. It's quite the opposite: doctors should WANT our patients to ask questions and help us perform a final reality check! In my practice, I've taken to asking patients specifically if they think the diagnosis I had in mind makes sense to them, because it encourages them to bring up any concerns or questions. Not infrequently, these questions lead to a real breakthrough and really change their diagnosis and management.

My mother is my inspiration for writing this book because she had gone through many misdiagnoses: initially a missed diagnosis of cancer and then multiple other misses along the way, including, eventually, a missed diagnosis of pneumonia that led to her death. There is nothing I can do bring her back now, but she always believed that one person can make a difference. I want to make a difference to my patients and encourage all of you to make a difference in your healthcare. Speak up the moment you have a question, the moment you don't understand something the doctor said. Don't let more time'and more opportunity for misunderstanding'pass by. The work that you do will revolutionize your interactions with your doctor, and potentially change how your doctor interacts with future patients as well.

More Blog Posts by Leana Wen

author bio

Leana S. Wen, M.D., is an attending emergency physician and Director of Patient-Centered Care Research at George Washington University. She is the author of the critically-acclaimed bookWhen Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. For more information, visit her blog The Doctor is Listening, check out her website or follow her on twitter @DrLeanaWen.


Tags for this article:
Patient Engagement   Leana Wen   Communicate with your Doctors   Cancer   Inside Healthcare  


Comments on this post
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katellington says
July 23, 2012 at 2:31 PM

Wow! Like my mother (see my Summer Palpitation story), your mother has moved you to telling stories for health. Looking forward to reading the new book

Carolyn Thomas says
July 23, 2012 at 3:32 PM

LOVE this article and your blog - and can't wait for your new book to be released. I think you are so right - many patients seem genuinely afraid to ask their doctors even basic questions about their care.

I once met a woman who attended one of my presentations on women's heart health who fit this illustration perfectly. An elegant and articulate older lady, well-dressed, lovely hairstyle (the type of woman who must have been described as a "knockout" in her earlier days!) - at the very end of my talk, she raised one beautifully manicured hand to ask: "My doctor told me that I have a 'heart rhythm' problem. What does that mean?"

What does that mean? I was gobsmacked, not because she clearly did not know the answer herself, but because she had not thought to even ASK HER DOCTOR at the time he had first told her this. Patients like this must drive doctors mad: sitting there politely smiling and nodding just as if they DO understand.

But as one of your other blog posts observed, the solution is not solely in the hands of patients to become more assertive if/when they have questions or concerns about their care. There are considerable studies on doctor-patient communication that tell us doctors make (wrong) assumptions about patients' comprehension of complex medical terminology, for example. Docs must become more pro-active in making sure that patients don't leave the office/hospital without confirming that they do in fact understand what's going on.

Keep up the great work here!

Joan Hill says
July 23, 2012 at 9:48 PM

I was very moved by your blog Dr Wen. I lost a very close relative a while ago in a similar way. I wish I had read this blog before she was eventually diagnosed. Keep up the powerful writing. Very much look forward to reading more of your blogs and your upcoming book.

DrLeanaWen says
July 24, 2012 at 12:56 AM

Thanks so much, Kate. I loved your story as well, and strongly believe that it's only by sharing our stories that others will learn and feel empowered to change. Hope to read more from you in the future too--and to hear from more patients and families.