In a recent editorial published in the New England Journal of Medicine, "Good" Patients and "Difficult" Patients—Rethinking Our Definitions, Dr. Louise Aronson tells what could have been a tragic story about her sick father, had she not been at his bedside, advocating on his behalf.
While his blood pressure was dropping precipitously, the nurses were ignoring Dr. Aronson’s polite requests for assistance. Afraid of being perceived as the "sort of family member that medical teams complain about," she kept quiet for a while, until his blood pressure dropped even further.
Suspecting that her physician father was bleeding internally, this doctor wound up performing a rectal exam on her own father, then marched up to the nurse’s station with blood on her glove and finally got someone’s attention. Minutes later, he was rushed off to the ICU.
She concludes, “8 years later, the most vivid image I have of that night is not my father wobbling in the bathroom surrounded by cold, hard tile and angular metal structures, or a mustard yellow bedpan filling with bright red blood. The image is this, a worst-case might-have-been scenario had I not been there, had I not had medical training, had I not spoken up: my parents, sleepy because it was by then late at night, snuggled up together at the top of the gurney, my mother resting her head against my father's chest, their eyes closed, their faces relaxed. His systolic blood pressure, usually 130, dropping to 80 and then 70. The monitors turned off or ignored. The lights dim. A short nap and they'd feel better. A little rest and maybe it would be time to go home.”
Being The “Difficult” Daughter
My own mother recently had a cancer scare, and her doctor handled it atrociously. (You can read about his abominable behavior here.) After scaring my mother with the threat of metastatic cancer, he announced that she had a Schmorl’s node, a benign condition that needed no follow up.
I was griping about the scenario to the group of MDs I gather with monthly at Dr. Rachel Naomi Remen’s house, and Rachel pulled me aside and asked why I didn’t call that doctor and give him a piece of my very troubled mind. I explained that, although I had advised my mother to find another doctor, she didn’t want to, and I was afraid that if I spoke my mind, I’d be perceived as one of those “difficult” family members. I feared that it might damage my mother’s relationship with the doctor she intended to keep seeing. So I kept quiet.
Rachel pointed out that if I, as an intelligent, outspoken physician, feel inhibited about speaking my mind with another physician, imagine how powerless someone feels if they don’t even speak English, or if they can’t read, or if they come from a culture where women are meant to be seen and not heard.
It made me realize that we have created a culture where, when a patient or patient’s family member questions physician authority, we label them “difficult.” And yet, the patient and the family members that know them best can be our greatest allies when it comes to serving the needs of the patient.
Time for a paradigm shift.
Listening Is Medicine
While patients and their families must stop bowing at the feet of doctors, handing over all power to them and keeping their mouths shut when they have something important to say, doctors and nurses must also stop behaving as if the thoughts, concerns, intuitions, and fears of the patients and their families are nuisances.
I’m ashamed to say that I can recall more than a few times when I simply didn’t have the time to deal with families of someone sick. My pager was going off. The ER was calling me. The nurses were hounding with requests for interventions. And honestly, family members- and even the patients themselves-sometimes seemed like the lowest rung on the totem pole of my limited attention span.
But if I had only taken a moment to listen, how many crises might I have averted? How many bad outcomes could have been avoided? How many hearts might I have healed?
“Difficult” or “Empowered?”
I just had lunch today with CNN Senior Medical Correspondent Elizabeth Cohen, author of The Empowered Patient, who pointed me to this New England Journal of Medicine article. We had a conversation about the difference between a “difficult” versus “empowered” patient.
Sometimes the difference lies only in the perception of the physician. Some docs view any patient or family member who questions them as difficult. Others appreciate having partners in health care and view the empowered patient who questions and speaks their truth as essential members of the health care team. You can’t change how your doctor perceives you, but you can change how you show up.
Here are 7 tips for how to advocate for your health care or the care of a loved one by being “empowered” but not “difficult.”
1. Be empowered, but not entitled.
Understand that your doctors and nurses are swamped. Pagers are beeping constantly, and we’re always trying to triage the true emergencies. If you need our attention, please speak up, even if you think we’ll be annoyed. Try to be kind, but not meek. While rude people are more likely to be labeled as difficult, sometimes that’s what it takes to get our attention. But more often than not, we’ll respond better to a genuine plea for help delivered in a compassionate way.
2. Ask if it’s a good time.
Unless someone’s unstable, you’ll help disarm a grumpy doctor or nurse by expressing your desire to talk and asking if it’s a good time. If it’s not, ask when a good time would be.
3. If your need can wait, try to be patient.
Yes, you deserve immediate attention. We all do. But sometimes it’s impossible. Ask for what you need, and if nobody is meeting your need, be persistent. But remember, we’re all doing the best we can. Try to avoid getting angry, and appeal to the humanity of the health care provider who can help you.
4. Find doctors who welcome collaborative, patient-centered health care.
If your doctor is an ego maniac, I don’t care how skilled your doctor is—find another doctor. If your doctor considers you difficult any time you question an order or ask for a second opinion, your doctor cares more about being in control than doing the right thing. As a physician training other doctors to partner with patients, I guarantee there are wonderful physicians who welcome the partnership of empowered patients and their families.
5. Be the squeaky wheel.
I know it’s hard to question your health care providers. It’s ingrained into us to trust our doctors and refrain from questioning them, especially among the older generation. But as a doctor, I can tell you that, sad but true, the squeaky wheel really does get the grease. If you know you or a family member needs help, don’t give up until you get it.
6. Be willing to fire your doctor or transfer hospitals.
If nobody will listen when you need help, go to the top. If the head of the department can’t help you and you’re stable enough to seek care elsewhere, be kind and respectful, but remember that your life is more important than being Mr. Nice Guy. Doctors hate it if a patient leaves one doctor and transfers care. They have to start from scratch, and especially if you’re in the middle of an emergency, you may find it hard to find another doctor or hospital willing to accept you as a patient. But remember: health care is a service industry. And this is your life we’re talking about.
7. Don’t forget to praise a job well done.
A difficult patient complains about everything. An empowered patient asks for what they need—and doesn’t give up until their needs are met—but an empowered patient also expresses gratitude for a job well done. Remember to thank those who support you and acknowledge the many sacrifices they make on your behalf.