My mother couldn’t advocate for herself when she needed it the most

My mother 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 wantour 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 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.

Leana Wen is an emergency physician who blogs at The Doctor is Listening. She is the co-author of When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests.  She can also be reached on Twitter @drleanawen.

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  • http://www.facebook.com/dorothy.snyder.56 Dorothy Snyder

    Sitting in my chair, here I am baffled by your comment. Wow! The problem with this is that doctors have egos. They have time issues. They don’t like to be questioned. I will say the good doctors wouldn’t mind so much if their diagnosis was questioned, oh, but question even a border line good doctor and things go sour. This goes along the lines of why when a nurse gets hospitalized they don’t tell the medical staff that they are a nurse. You know why? The staff gets mean with the nurse if they find out. They start to feel as if they are being watched and to a certain extent they are, but they don’t want to watched and questioned. Most doctors want compliant patients. If you went through what I just went through maybe you would understand. And guess what? Doctors may even lie, yes lie, when their incorrect diagnosis gets clearer and clearer and the patient was right all along. Sorry your post just feels like some movie where every one dances around singing La, La, La. That isn’t what happens in the real world. I am not saying a patient shouldn’t mention they have issues with the diagnosis, but goodness they better proceed lightly if they want to see that doctor again.

    • http://www.facebook.com/profile.php?id=881580563 Kristy Sokoloski

      Dorothy, you make some excellent points. One of my friends who is an RN that has had a number of health problems has told me that when she goes to the hospital she does not let them know that she’s an RN. Also, with what you said about the issue of questioning doctors it is why in many cases the patients that decide to get a second opinion will not tell that doctor they are doing so. For fear of the problems that it will create.

      • Molly_Rn

        I do the opposite. I tell them that I am a nurse and my husband is a physician so that we can discuss my problems using my background. I also have no problem reminding the physician that I came to them for help and am not there to challange them but for their help and understanding. Years of being my patient’s advocate in ICU and CCU helps me to do this. Patients must be their own advocates or bring someone with them to be their advocate and help them not only to ask questions but also help them remember what was said. I am a believer in written instructions for patients because especially if the diagnosis is bad, your brain checks out and you remember nothing that was said except “cancer”. With written instructions as to what you need to do and definitions and explainations for your diagnosis, you can sit and think once you recover from the shock. This would help to improve compliance and follow up.

  • Jenn

    When my dad got sick I always questioned the nurses, doctors etc when I was there. There were a lot of times I wasn’t there due to having to work but I can tell you, I made a big point to make sure my dad was being taken care of correctly when I was there with him. I had a nurse who came in to change his dressings (he had sores on his legs from a fall and bedsore) and she stated she was just going to wing it since she didn’t even look at the wound care instructions. I looked at her and said I would feel more comfortable you helping my dad if you looked at the order (it was put on the wall in the room so she didn’t even have to walk far). She seemed more surprised by my asking and playing my part as an advocate than angry at me questioning her skills. If she was angry at me she never showed it. She did look over the orders and followed them to the letter. I never hesitated when it came to questioning what they were doing, looking at his sores and I even had nurses ask me if they were getting better as I was there every evening, sometimes all day with him. I was never rude and I always asked them and my dad if it was okay before asking etc and no one told me no. I think it is all a matter of how you approach them as they are supposedly the professionals but I know my dad well enough to know if something is wrong and I know enough about the medical community to never full trust them as they are human and mistakes happen. I also never hesitated to call his doctor and NP to talk over things and they never ignored me.

  • petromccrum

    Bear in mind also; that some patients are just too ill. My husband was seriously ill and I was confused by the fact that he did not ask more questions. In many other aspects; his personality was not the same as before he becam ill. So in hindsight I do believe that the problem was his illness. I try to encourage anyone who is ill to have someone else go to all doctor visits with them. A second voice is always a good thing in this situation.

  • http://www.facebook.com/carol.levy.336 Carol Levy

    Some people are completely alone (I was and am – family abandened me years ago none there for 9 of my 12 brain surgeries – and was in new city so no friends available). It is such a benefit when someone else can be there with you in the office. If not, for whatever reason, having a diary about your symptoms, when happens, what feels like etc, as well as a list of questions can be a big help.
    Part of the problem, (and Dorothy is spot on – ego too I have also seen be an issue – don’t challenge me, I am the DOCTOR!) is often that the information is given too fast, in technical terms, or is too overwhelming to be assessed in a timely enough fashion to formulate the questions. I have had doctors walking out the door as they finish imparting the information to me, the dismissal an implicit “I don’t have time to talk with you or find out if you understand what I said or if you have questions.”
    The irony is that if your patient understands and has had all the questions asked, and answered, they will be most probably more compliant with treatment plans (because they understand the reasoning) and require less of your time over time.
    Carol Levy
    author PAINED LIFE, a chronic pain journey

  • http://twitter.com/DrLeanaWen Leana S. Wen MD

    Thanks, everyone, for the insightful comments. Doctors don’t like being questioned–yet, it is only by advocating for yourself can you make sure that you get the care you deserve.

    Of course, there are better ways than others of doing this. “Stroking the ego” may be important as @facebook-881580563:disqus and @facebook-1007979303:disqus mention. Sometimes it may help to mention that you are a health professional, as
    @Molly_Rn:disqus says, but if you are not, I would recommend to avoid jargon and just speak like you are a normal person. Sometimes this jargon is what turns the doctor off. @petromccrum:disqus, I very much agree with bringing a friend or loved one, and @facebook-743152265:disqus, with writing a diary. I talked about this: http://www.youtube.com/watch?v=mjwmPW_0faM&feature=plcp.

    There is no easy solution, but it’s only by having more patients standing up for themselves that change will happen.

    thanks,
    Leana
    http://www.drleanawen.com

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