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 percent 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 rooms compared to their male counterparts of the same age presenting with comparable heart attack symptoms1.
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 willing to share with their doctors2.
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 fatigue3.
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 percent) 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 percent of the patients.
In fact, the majority of patients (61 percent) felt that fatigue adversely affected their daily lives more than pain did (19 percent).
But when asked the same questions, oncologists believed that pain adversely affected their patients to a far greater degree (61 percent) than fatigue (37 percent).
And worse, only 27 percent 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 percent of them could have gotten this pain versus fatigue dilemma right. And even better, far more than a paltry 27 percent 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 Dr. Leana 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 lessons 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 percent 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.
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.
This post originally appeared on Carolyn's Heart Sisters blog on February 11, 2014.