The Washington Post chronicles the difficult story of Michelle Mayer, a nurse who tragically passed away from scleroderma. She had blogged at Diary of a Dying Mom.
As medicine has plenty of gray areas, patients sometimes have to challenge doctors to receive the best care. That means obtaining second opinions and doing your own independent research, which risks placing some tension in the doctor-patient relationship:
There is nothing funny about being a difficult patient, or dealing with one. In an era where Americans are increasingly expected to take responsibility for their health and make complex decisions and where medical information and misinformation abound — and doctors are feeling squeezed by time pressures — the line between “assertive” and “difficult” can be perilously thin.
As Mayer pointed out, it can be a delicate situation: “You can’t make doctors too angry, because you need them.”
Excellent piece that’s well worth reading.
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- Malingering and the difficult patient.
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- The physician-patient bond
- It’s difficult to treat the morbidly obese
- How Twitter can strengthen the doctor-patient relationship
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{ 4 comments }
Try paying for additional demands on the doctor. All annoyance evaporates.
I’ve been following Michelle’s blog for a while. She was an admirable woman and is missed. I think the term “nurse” that you used, Kevin, is misleading. She was a professor with her doctorate in public health.
This quote at the end of the article says it all: “We speak English, have great insurance, money, tons of education and my husband has connections, and we couldn’t get the system to work,” she said. “I fear what happens to other people.”
Her husband is an infectious disease specialist.
i find it hard to believe that duke could not offer a satisfactory rheumatologist, especially given their connections? certainly she herself recognized that she was an unusual patient and that not all patients who are difficult would have a background that might make it reasonable to challenge decisions. her terrible circumstances aside, being educated does not exclude the possibility that she was an educated, difficult patient.
also possible is that she confused studies of populations to her specific case, and that the recommendations made, even though not shown to be effective in a generic population, might still be of use to her (which is what doctors not epidemiologists do). she ultimately found someone who agreed to treat her the way she wanted, which may or may not have been the best way to treat her.
condolences to the family.
‘Difficult patient’ is often a label used by physicians and nurses for someone who will not be docile ans subservient, someone who expects respect and involvement in his/her best interests by the health care system. As a PhD ARNP, I can assure you that I know SO much better what I need than all too many MDs I have seen. Recently a primary care MD at a major tier one research institution misdiagnosed me for months-I kept telling her this and she just became angry. When I FINALLY got her to turf me to a specialist, my originalsuspicions were confirmed-I have a serious cardiac condition AND a serious sinus condition-one requiring significant w/u and treatment and the other surgery. This is NOT uncommon…..I am a difficult patient and will continue to be so whenever I am receiving bad medical care.
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