Patients and caregivers writing on KevinMD about the experience of illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, and what patients want physicians to understand. Physicians who have become patients write here too. For the record of what pain patients and physicians have said to each other about opioids and chronic pain since 2007, with patient authors cited at the same weight as physicians, see Opioids: what physicians and pain patients say, in their own words. For what patients, families, and physicians have said about dying, hospice, and the decisions families face at the end of life, see End of life: what physicians say, in their own words. For what women and the physicians who treat them have said about pregnancy, menopause, and the conditions dismissed for years, see Women's health: what physicians say, in their own words. For what physicians have said about consent, honesty, and who decides, see Medical ethics: what physicians say, in their own words.
“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”
A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement.
For a few minutes, I was inclined to agree with her. I thought back over the previous three months: the passive aggressive (and aggressive-aggressive) responses of some of my clinicians to my …
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Does patient engagement set patients up for failure?
You’ve heard all of the advice about backing up your computer regularly, making sure that you have your passwords stored in a safe place, protecting yourself against digital identity theft, but what does that have to do with providing care for a person with special needs?
Let’s count the ways.
First: Resources. Much of the information you need is online, and your personalized data may be password-protected. Anyone who has ever been …
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Why caregivers should care about digital backups
When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after twelve years of illness, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we …
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What chronic pain and illness make me miss the most
No one goes to a hospital to heal. They go because they must–as I did three years ago, when a one-hour colonoscopy turned into a four-day surgical sleepover.
My grandfather had warned me long ago against hospitals. “You don’t want to go there,” he said. “That’s where the sick people are.” Pop died at the age of ninety-four, at home.
His warning came strongly to mind as I walked into the place …
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It took cancer surgery to see a more profound dimension of life
The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service. Two phrases commonly used to describe us …
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Don’t call me a health care consumer
I empathize with people who don’t take an active role in their health care decisions. There are real barriers to any of us really getting engaged: limited information about price and quality, a perpetuated culture of “doctor knows best,” and a daunting and confusing set of rules about coverage. Who wants to think about it?
There are only so many minutes in the day or neurons in the brain. So, we …
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Patients: Play the role of a consumer who has choices
For the past fifteen years, I have had an incurable form of leukemia.
Such diseases used to be called terminal illnesses, but we don’t hear that term as much anymore. With all the new drugs and treatments available, doctors have become more reluctant to refer to diseases they can’t cure yet as “terminal.”
In the years just after my diagnosis, when friends and family would ask what could be done for it, …
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Living with an illness for which there is no cure
Don’t get me wrong, it’s huge to see patient safety evolving to be a front-burner issue. After beating the drum for years, the National Patient Safety Foundation and other groups are seeing progress, with meaningful use, electronic health records, pay for performance, and the patient-centered medical home.
Medicare innovation grants and the Partnership for Patients are chipping away at medical harm and 30 day readmissions. Empowered patients are test-driving their choices …
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Measuring patient engagement: What would Ken Schwartz think?
When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.
At the age of 55, after a lifetime of seemingly …
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In today’s society, chronic illness is viewed as a personal failing
“Have you ever been told you have a heart murmur?” a young doctor gently asked my friend, Ben. Ben’s mind reeled. Ben was in his early 30s, relatively young and healthy. But his father had died from a heart attack before age 50. And his mother had a heart problem. What did this question signal for him, he worried.
“Um, ah, no, I haven’t,” …
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It’s natural to skimp on care when it’s costly
As doctors, we’re typically compensated for the work we do, not the hours we spend. Our jobs are structured so that we’re taxed for time, making even the most routine office visit feel like a race against the clock. Trying to develop a long-term strategy with a patient in this context is not time-efficient. It is, in fact, incredibly frustrating.
Yet medicine is a team effort, and we understand that we’re …
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4 ways to beat time constraints and guide patients to better health
We in the press are accustomed to PR folks “advising” us of all the good things that hospitals do. They open new pavilions named for wealthy benefactors of new cancer and heart centers and children’s care, with media coverage of the ribbon-cutting ceremonies attended by famous faces. They buy big new machines that smash and diagnose illness and want the world to know about that, too.
But a press release that …
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You can’t judge a hospital by its press releases
As an employee of the ABIM Foundation, I’ve batted around the phrase “medical professionalism” for several years but it didn’t really hit home for me until I encountered it – and the lack thereof – as a patient.
Over the past six months, I’ve logged a few miles in the frequent patient program. I underwent a 13-hour craniotomy to resect a meningioma and woke up from surgery with nerve damage to …
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What medical professionalism means to me as a patient
Growing up, I am sure you heard many “why” questions, such as: “Why is your room so messy?” and “Why didn’t you eat your vegetables?” I am quite certain those questions made you feel defensive. Patients also feel defensive when we ask them ”why” questions. In other words, “why” questions set people off. These types of questions can turn a usually-friendly patient into an angry nightmare.
Here is an example. Your …
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Stop asking why and strengthen your relationships with patients
“I HEAR THEM! THEY ARE CALLING ME A CHEAP PROSTITUTE!”
Her shouting is like a gas: It completely fills the space, regardless of the size of the container. The sound originates deep in her abdomen and bellows from her mouth before reverberating throughout the room.
“THESE DISGUSTING MEN,” she shouts, “KEEP CALLING ME A WHORE! I AM NOT A WHORE!”
Her wrinkled hands flecked with liver spots loosely hold a fashion magazine open. …
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The other people in the waiting room
An important study in the Journal of the American Medical Association finds that misdiagnosis is more common than you might think. According to the study, almost 40% of patients who unexpectedly returned after an initial primary care visit had been misdiagnosed. Almost 80% of the misdiagnoses were tied to problems in doctor-patient communication, and more than half of those problems had to do with things that were missed in the …
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Misdiagnosis is more common than you think
As of late, patient engagement has been laudably deemed a “miracle drug,” a silver bullet slicing through the tangled morass that is our American healthcare system. The comparison may be hyperbole, but the potential impact of patient engagement does have merit. With engaged patients, medical problems can be diagnosed swiftly and treated with higher success rates. Illness can be prevented and emergency department usage can be abated. Care can be …
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Patient engagement: What doctors can learn from teachers
