Okay, all you doctors and nurses and physician assistants and nurse practitioners and physical therapists and social workers and even medical receptionists taking messages: Listen up.
That’s it. That’s all I need to say. In fact, I could shorten this post to one word: Listen!
As far as I know, it is not a universal requirement that med schools, nursing schools, etc., include in their programs a course in “Listening 101.” It should be, though. Any professional program that purports to educate health care clinicians should teach its students how to listen to and communicate with patients. In fact, you might think that anyone intelligent enough to get into med school or nursing school or physical therapy school would figure out by the end of it that listening is crucial to being a competent diagnostician — and you’d be wrong. In a 1996 article by Chuck Appleby in Managed Care Magazine, Appleby describes a phenomenon many of us have observed as patients — the tendency of doctors to act like mechanics, to demonstrate
“a ‘find it, fix it’ mentality that impedes building relationships with patients. Doctors see their role as identifying the problem quickly, correcting it and moving on instead of creating a long-term relationship that in the end results in more accurate information and better patient adherence to treatment regimens….”
Not to put too fine a point on it, but a graduate science-based education often attracts those of us who are better at geeking out on science than at having a meaningful conversation. It also doesn’t help that our healthcare system seems to contribute to this by a tendency to reward practitioners for quantity rather than quality. And then there’s the fact that most of us really just want to help our patients feel better, as soon as possible. As a clinician myself, I have to admit that, even from the best of intentions, I find it all too easy to get into a blinkered headset when I am focused on helping a patient prevent another fall.
Unfortunately, the system we have almost forces clinicians to behave this way. But when you are a patient dealing with the possibility or the fact of cancer, it’s not just frustrating when clinicians don’t listen to you. It can also be life-threatening. In her book Cancer Schmancer, actress Fran Drescher describes how it took “two years and eight doctors before finally being told I had a gynecologic cancer. I felt betrayed by not only by my own body, but the medical community.” After finally getting treatment for and surviving uterine cancer, she started a movement to keep this experience from happening to other women.
Unfortunately, it’s not an uncommon experience. The only good thing about that fact is that a lot of people can commiserate, and some of them have put together some good advice. In her book, Angels and Bolters: Women’s Cancer Scripts, Dr. Karen Ritchie, a psychiatrist, validates the experience women with cancer frequently go through, not only with their doctors, but with friends and family. The book cover will link you to Amazon.com. The text link will take you to an excerpt in which she muses about why doctors don’t listen, and why they should. In her introduction, Dr. Ritchie writes, “If you go to an expensive restaurant and pay $100 for dinner, you should not have to choose between good food and good service. For that much money you should get both.” The same, she says, should be true of medicine, but for a whole host of reasons, the system itself “seems to be unable to improve this situation, so it is up to patients and potential patients, who are paying the bills, to demand change. If no one is listening, you may have to shout.” In addition to Dr. Ritchie’s book, the web link that follows lists a dozen practical tips about improving communication with your doctor so that you don’t have to shout — literally.
All right, that’s the patient side of the equation. What about the docs themselves? As I plowed through the usual research before writing this post, I was pleasantly surprised at how many resources are out there to help teach clinicians how to communicate. Honest to god, most docs are not mean, feckless nitwits. They do want to help people. They can be trained. After all, they did get that big fat degree in the first place. And after we get our degrees, we’re all of us required to do continuing ed to keep our various licenses, and there’s no reason we can’t get CEU’s learning how to listen better. One online resource I found was a course developed by the National Health Service in Scotland. A downloadable book in PDF, called Talking Matters, was assembled as part of the course to teach doctors (and other evaluating clinicians) how to improve their people skills. The introduction points out that listening is “a clinical technique like any other, and getting it wrong is dangerous.” Yes, indeedy! And this book is free, for heaven’s sake! No excuses now, fellow clinicians! And if you’re a patient and you really need to rock some nasty doctor’s world, go right ahead and make a copy of this and give it to him or her. (And take a cell phone photo of the reaction you get. I really want to see that.)
I was astonished recently when I came upon a research study involving radiation oncologists and their patients, which demonstrated that Cancer Patients Want Honesty, Compassion From Their Oncologist. All right. I know what you’re saying. I try to keep cuss words to a minimum here, but the only reasonable response to that is, “No shit, Sherlock!” Another study, presented to the 42nd annual meeting of the American Society of Clinical Oncologists, attempted to explain why oncologists often fail to provide honesty and compassion. The surveyed physicians admitted that they “find it difficult to give patients negative information about their prognosis and many battle with their own emotions during these exchanges.” Well, duh. Of course they do! They’re only human, just like the rest of us. There are certainly a lot of retro-thinking folks who regard their doctors as gods, but most of us would far and away prefer them simply to act like they were human. Sure it’s hard to tell someone the truth. But that’s not a reason to avoid it or deliver it with coldness or insensitivity.
Here’s an amazing example of how one cancer patient addressed the issue, by putting her money where she felt doctors’ mouths should be. “The Ruth Hillebrand Clinical Skills Center, dedicated by the [Medical School of Ohio] this month, was borne of the estate of a New York psychologist who felt she had bad experiences with rude doctors.” She received her own initial diagnosis of cancer when “her doctor called her late one night and told her she had mesothelioma. He said there was no treatment and no cure. Then he hung up.” When Dr. Hillebrand died of her cancer, her $1.9 million estate went to the Toledo school specifically to be used to teach doctors how to communicate with their patients. Wow. I’d like to win the lottery just to be able to do something like that.
But you know, there are just some doctors, nurses, PT’s, PA’s and others, who are flat-out mean, feckless nitwits. We’ve all met at least one. You know the type. If they’re not rushing you out the door, then they have all the personality of wet cement. And if they have a personality, then it’s an arrogant one. And if they’re not merely arrogant, then they deny responsibility for any problems, side effects, options or any other items that may arise that don’t conform to their my-way-or-the-highway version of treatment. And if they’re not in denial, then they’re so hateful and miserable that you wonder if they picked medicine as a profession because they absolutely hate people, or if they’re just burned out and need a ten-year-long time-out. I once stumbled upon an old post on a blog called The Happy Hospitalist, in which a doctor, addressing the reasons why patients don’t think their doctors listen to them, asserted that “90% of the information presented to me on a daily basis is garbage. That means 90% of what you [patients] tell me is garbage.” Well! I guess that explains it! Unfortunately, that post link is buried somewhere in the blog archives or was possibly deleted, so you’ll just have to imagine what kind of comment you might have added to the 48 vigorous remarks that were already left.
No matter what their behavior stems from, there are doctors who say such idiotic, hurtful, unhelpful things to us sometimes, you can’t believe you heard them correctly. The following examples represent only a teeny portion of these remarks. All of them have been said to cancer patients I know personally, all of them by their oncologists or surgeons, except for one, which was said to me by a mammography radiologist who was sticking pre-op localization wires into my breast at the time, without using enough topical anesthetic. It hurt so much, I passed out. But that’s another story. Six of these statements have been said to me personally. Thank heaven, none of them has ever been said to me by my primary care doc. (Thank you, Stu, for not being a jerk.) But primary care doc’s, especially when they’re following cancer patients, sometimes say things like this, too. Please feel free to cuss with righteous rage while reading them and do submit your own favorites so I can update the list.
Ten Stupid Things Doctors Have Said To Cancer Patients:
- “It’s probably nothing. Come back in six months.”
- “Oh. Is this hurting you?” Said by the aforementioned radiologist.
- “This is your only option.”
- “You don’t need to know that. That’s my job.”
- “Well, if that’s your decision, then you’ll have to deal with the consequences.”
- “Most of my patients don’t have those problems.”
- “I can’t help you with that. You need to see your primary care doctor.”
- “Oh, no, that had nothing to do with the [radiation/surgery/chemotherapy/hormone therapy/implant/post-surgical infection].”
- “I don’t believe in pain medication.”
- “Well, what do you want? We did save your life.” My personal favorite.
Yikes. Well, I can’t leave on this note, so I’ll close with an example of a physician who cares and helps other doctors care as well. In 1998, Dr. Rita Charon, a professor of clinical medicine at Columbia University’s College of Physicians and Surgeons, began her Program in Narrative Medicine. Third and fourth-year medical students in the program are required to write a narrative — a parallel ‘chart’ — about at least one patient’s entire hospital experience, from admission to discharge. Student doctors are asked to maintain traditional charting records on their patients’ progress, but also to track the emotional toll the hospital experience takes on them. Once a week, the students meet and read their accounts to one another. The entire experience prompts the students to realize things about medicine’s impact on an individual’s life that might never have occurred to them otherwise, and that affects the way they function as physicians. Charon, who regards listening as an intrinsic part of being a doctor, wants to help med students become compassionate, empathic doctors who feel the same way about the value of listening. And apparently, she is succeeding. “In a recent study, the parallel-chart method was rated by 82 percent of the participating students as beneficial, both as a therapeutic outlet for the emotional trials of residency and as a more effective preparation for conversations with patients and their families.” [Fall, 2003, Columbia Alumni Magazine]
In the meantime, it often falls to the individual patient to learn to be a savvy consumer of healthcare, frequently and most urgently when she is feeling most vulnerable. Sometimes, I swear, some of the clinical and administrative people I’ve encountered during my own cancer odyssey acted like sharks smelling blood in the water. Most of them were lovely, but the ones who failed me when I most needed them have irrevocably changed the way I deal with my own healthcare. I trust no one more than I have to. I get copies of everything. I write myself notes before and after a doctor visit, and if I’m not comfortable with the person who takes messages for my doctors — or even if I am — I write down what I need to impart and send a concise fax. If necessary, I bring someone with me to my visits, to bear witness and to deconstruct afterward. And I ask all my questions until I feel that they’ve been answered.
Tell you what. Bugs Bunny said a mouthful.
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