Is your doctor paying attention?

11 Feb

by Carolyn Thomas    @HeartSisters

When Mayo Clinic’s Dr. Mary O’Connor published her compelling essay called The Woman Patient: Is Her Voice Heard?“, she raised some frightening questions, particularly for those of us carrying the XX chromosomes.  Examples of what she calls the medical profession’s unconscious bias” against female patients include:

  • women are 22 times less likely to be referred for knee replacement surgery compared to men presenting with the same symptoms and diagnoses
  • girls on pediatric kidney transplant lists are 22% less likely to get a new kidney compared to boys
  • women in their 50s and younger are seven times more likely to be misdiagnosed and sent home from Emergency compared to their male counterparts of the same age presenting with comparable heart attack symptoms(1)

But perhaps the most disturbing lesson was the pervasive sense that somehow docs are just not getting it, and worse, that this “unconscious bias” is affecting medical decision-making – and even doctors’ ability to pay attention.

Not paying attention leads to under-diagnosis of treatable conditions, as illustrated by Dr. Dan Bennett of Denver, who is Chief Medical Officer for the National Pain Report. He warns:

“The under-treatment of women in pain is a huge concern.”

Not paying attention begets comparable lack of attention in return, and may be even more prevalent among minority women. A 2008 New York study reported in The Annals of Family Medicine found that physician qualities like compassion, caring, human interest and kindness were so important to the Latinas being studied that the absence of such qualities affected what medical information these women were even willing to share with their doctors.(2)

I’m also reminded of a University of Chicago study that explored the perceptions and attitudes of both cancer patients and their caregivers after chemo or radiation therapy when it comes to cancer-related fatigue.(3)

The researchers reported that although fatigue is the most common symptom reported by cancer patients and has serious adverse effects on quality of life, it remains poorly understood. They compared the study results from patients and caregivers to the perceptions and attitudes of the oncologists who treat cancer patients.

The results are shocking.

More than three-quarters of cancer patients (78%) reported suffering from extreme fatigue (defined as a general feeling of debilitating tiredness or loss of energy) during the course of their disease and treatment. The caregivers studied also reported observing this fatigue in 86% of the patients.

In fact, the majority of patients (61%) felt that fatigue adversely affected their daily lives more than pain did (19%).

But when asked the same questions, oncologists believed that pain adversely affected their patients to a far greater degree (61%) than fatigue (37%).

And worse, only 27% of patients reported that their oncologists had recommended any treatment for debilitating fatigue.

How is this even possible?  How can physicians whose only business is diagnosing and caring for cancer patients be this utterly unaware that patients point to fatigue – not pain – as the issue that most affects their daily quality of life?

Somebody is not paying attention.

Chances are that, had these docs asked their patients directly, far more than 37% of them could have gotten this pain vs fatigue dilemma right. And even better, far more than a paltry 27% of doctors could have recommended something to address their suffering.

But one study question missing was whether patients and caregivers are proactively communicating this suffering to their docs.

That’s the important advice to all of us patients from Drs. Leanna Wen and Dr. Josh Kosowsky, emergency physicians at Harvard University and Brigham and Women’s Hospital in Boston. The two are also authors of the book, When Doctors Don’t Listen. For example:

“Most of us have spent so long thinking of medical care as a passive process that it takes time to change our mindset to put ourselves in the driver’s seat.

“You need to speak up and be your own best advocates. You are the key to your own health, and you have to help your doctor help you.

“We have seen examples of strong, professional women and men who are outspoken in every aspect of their lives except when it comes to their own medical care.

“Trying to be the ‘good’ patient can actually lead to inferior care.”

More good advice from their book:

  • Tell your whole story: “Telling your story may be an uphill battle because the doctor, nurse, and tech may all be trying to steer away from a narrative and toward the cookbook world of ‘chief complaints’ and close-ended questions. However, it is critical that you insist on telling your story. Work on becoming a better storyteller, and make sure that your doctor understands your whole story.”
  • Insert yourself into your doctor’s thought process: “Your doctor is thinking about something while she’s with you. Assert yourself in her thought process early on. Let her know that you want to be integrally involved in every step of your care.”

We fail to follow these important steps at our peril. Even small slips in medical attention can lead to prescriptions errors, missed diagnoses and erosion of trust.

Here’s a small but significant personal example: I have an $800 bottle of meds in my bathroom cabinet. It’s a powerfully expensive reminder of my (former) family physician’s lapse in attention – and my own lapse in catching her error.

While writing a routine refill prescription during my appointment, my doctor had somehow accidentally doubled both the dosage and the number of times per day to take these meds, thus turning an already-expensive $200 prescription drug into a wasteful and potentially deadly product. She’d been casually chatting with me while writing this prescription refill instead of paying attention to what she was writing. Because my prescription drugs (up to a maximum annual amount) are paid for under my Extended Health coverage here in Canada, I didn’t even notice the error when I picked up refills of my cardiac meds at the pharmacy later that day.  The pharmacist had caught the big discrepancy since my last refill, however, and had phoned me before filling the prescription. But without having even glanced at the error-filled prescription while in my doctor’s office, I mistakenly reassured this sharp-eyed pharmacist that, no, this couldn’t be an error – because I trusted my physician.

It wasn’t until I was back home unpacking all of my new meds that I realized the pharmacist had been right – and my doc had been terribly wrong.

But what if I hadn’t noticed?

This was a drug overdose waiting to happen – and all because of a distracted doctor not paying attention to what she was doing – and an equally distracted patient who failed to notice that her doctor was not paying attention.

This error taught me some valuable lesson that other patients might heed:

  • review your prescriptions very carefully
  • keep a written list of all your medications and their current dosages
  • always compare your list to each prescription refill before you leave your doctor’s office

And never distract your doctors while they are trying to pay attention to writing prescriptions.

Not paying attention is how doctor-patient trust is eroded. Many doctors are already feeling this erosion. In a 2012 Consumer Reports survey, 70% of doctors felt that since they began practicing medicine, their bond with patients has steadily decreased.

What can patients do to make paying attention more successful for both parties? Some basics include:

  • Bring someone with you who can help communicate your health concerns.
  • Write down your thoughts and stay on topic.
  • Consider seeing another physician.

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(1) Pope JH, Aufderheide TP, Ruthazer R, et al. Missed diagnoses of acute cardiac ischemia in the emergency department. N Engl J Med. 2000;342:1163-1170.
(2)  Kell Julliard et al. What Latina Patients Don’t Tell Their Doctors: A Qualitative Study. Ann Fam Med. 2008 November; 6(6): 543–549.
(3)  Vogelzang NJ et al. “Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey.” Seminars in Hematology. 1997 Jul;34(3 Suppl 2):4-12.

Q:  How closely do you pay attention to what your doctor’s paying attention to?

See also:

  Next Heart Sisters post on February 19, 2014: “Confessions of a Non-Compliant Patient”  

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10 Responses to “Is your doctor paying attention?”

  1. Doug Della Pietra February 12, 2014 at 4:58 pm #

    Reblogged this on Optimizing Healing Healthcare and commented:
    An excellent blog by Carolyn Thomas on the importance of paying attention — both by physician and patient alike.

    Like

  2. Denise Scanlan February 11, 2014 at 10:23 pm #

    Not only have I had a recent heart attack, but I also have several other medical conditions, one being fibromyalgia.

    One doctor whom I tried desperately to understand that the fatigue is debilitating, that it made me unable to think and process information, it was all too hard. He referred me to a psychiatrist. I didn’t go. What could they do for the extreme fatigue?

    I know that doctors really do not understand the impact of fatigue, listlessness, lack of energy, no motivation, how your body basically shuts down on non-essential actions. I have felt like this for so long, I am really used to it.

    I also agree that the fatigue can outweigh the pain. I have said it often but have often read medical posts saying that pain is made worse because of the fatigue.

    They just do not know at all as they really don’t listen to us.

    There is still a lot to learn for them but I don’t think it will be in my life time.

    Like

    • Carolyn Thomas February 12, 2014 at 5:30 am #

      Thank you so much, Denise. Your story is maddeningly common. I suspect that the word “fatigue” itself is the culprit. When patients like you talk about feeling fatigued, what many doctors hear is just “I’m tired”. They don’t even begin to understand the bone-crushing debilitation of real fatigue. I once had one way-too-perky therapist advise me: “I have a great idea! Why don’t you sign up for a really interesting course at the university?!!” in response to my post-MI fatigue. If only I’d had the strength, I would have thrown something at her head…

      In the Chicago study cited here, docs can often DO something to help address pain – which may be why they mistakenly cling to that as the presenting issue, despite the reality of fatigue as the far bigger problem for their patients.

      Like

    • Barbara Keddy February 13, 2014 at 1:55 pm #

      Hi Denise:
      I can relate to your issues. I have fibromyalgia/chronic fatigue which has been lifelong. Accompanying this is my year ago heart attack and all the meds, aging, thyroid issues, tight chest muscles, freezing cold weather, anxiety, and increased exercise resulting in more pain.

      I am perplexed about the shortness of breath which can be caused by all of the above. Physicians don’t know nor do they often bother to spend time helping us sort out these concerns.

      Doctors would be most comfortable in attributing this to anxiety when it is so much more complex than that. See some of my blogs on fibro and heart disease. Frustrating indeed! Like you, sometimes the fatigue is so overwhelming I just want to wallow.

      I suspect if men were more prone to fibromyalgia and chronic fatigue than women, answers might be more forthcoming!

      Like

  3. valdagarner February 11, 2014 at 6:51 pm #

    Hi Carolyn,
    Thank you for such a wonderful post about a critical subject. I am a retired RN with a masters degree and worked tirelessly to advocate for my patients. I have seen horrendous treatment of women in the past 30 years and I too have been the victim of many doctors’ bias. I would fire those doctors and find a new one. I recently moved to Arizona and have found wonderful, empathetic doctors here which has been such a blessing.

    I am finding out that I have medical problems that were previously undiagnosed and I am now finally getting the treatment I need.

    Thank you for all that you do to help those with heart disease, especially women!
    Warmly,
    Valda

    Like

    • Carolyn Thomas February 11, 2014 at 9:04 pm #

      So glad you took the time to share your perspective here, Valda. I always love hearing from RNs (some of my closest friends are nurses!) – you can almost always count on them to accurately assess both good and bad quality care when they see it. I’m also glad you found yourself some wonderful doctors in your new Arizona home.

      Like

    • Denise Scanlan February 11, 2014 at 10:14 pm #

      Like Valda, I was an RN for nearly 40 years and I have seen this appalling attitude by some doctors.

      I am not bragging but I have had to step in for the patient at times to ensure the doctor did listen. Being a patient advocate is difficult but we have to do it.

      Like

  4. Leslie Kernisan, MD February 11, 2014 at 10:55 am #

    Good post on an important topic!

    It’s unfortunately often hard for doctors to pay attention these days, so I think it’s good for patients to come to a visit prepared.

    Specifically, come prepared to say what is bothering you most and what you want to make sure the doctor helps you with. And then don’t leave without making sure the doctor explains what the plan is for addressing your top concern.

    Like

    • Carolyn Thomas February 11, 2014 at 2:59 pm #

      Hello Dr. K – such good advice! Thank you for that. Every patient should arrive at appointments as prepared as you suggest here, and asking about THE PLAN is a key step. A further step to help attract a doctor’s attention is simply raising one’s hand. (I’ve found this to be immediately effective with docs who, for example, do not introduce themselves when they enter the exam room, or don’t make eye contact).

      Like

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