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.
Countless times as a patient both at two hospitals in New York City, I have witnessed doctors arrogantly waltzing into an examination room and arriving not alone but with an entourage. Like Greeks bearing gifts, they arrived with something unwanted and threatening: medical students, interns, residents, and fellows. And not once, in all the many times that I have been subjected to this ignominious practice, was my consent ever obtained …
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Is physician shadowing immoral?
I am sitting in my hospital room in a bone marrow transplant unit in a European city. I am a patient who has recently received a stem cell transplant. I am U.S. citizen, but I am a resident of a country with a single-payer health system. The insurance system here covers 85 percent of the population. And participation is mandatory, although high earners can opt out by purchasing private insurance. …
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A first-hand account of single-payer health care
I have a very interesting job: I travel around the country providing neuromonitoring to surgeons in the operating room. I’m also an anesthesiologist assistant, certified and licensed to provide anesthesia. Throughout my ten-year career in the OR, I’ve been the guest of nearly a hundred hospitals in the U.S. and the UK. No two hospitals are the same. My career has allowed me to meet hundreds of incredibly caring doctors, …
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Here’s how your attitude affects patients
Imagine driving through an unfamiliar area, and there are no street signs. How would you feel? Frustrated? Scared? Angry? You would feel these emotions because you had no direction or guidance. Patients need direction when they enter the health care system. Signposting is a tool to provide direction.
On the streets, there are posts that have signs. They provide direction; they tell us where we are going. Hence, the name, “signposting.” …
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3 ways to better communicate with patients via signposting
In the past few weeks, there has been a question regarding my use of the hashtag #Nof1 along with how I end the majority of my posts and tweets: Health care is delivered at the N of 1.
One person even believed there might be a trademark infringement with the company N-of-1 who provides molecular testing for patients and then delivers evidenced-based medical recommendations for oncology patients. The reality is that, …
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Health care at the N of 1
My older sister, Jan, visited me in San Francisco last spring. “You look great,” I told her, noticing that her clothes were hanging loose; she’d been heavy most of her life. “I’ve lost 60 pounds,” she said, and I automatically congratulated her.
“I wasn’t trying,” she replied.
It hit me then that something was very wrong, first with …
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Can doctors see beyond a patient’s weight?
Last night, my son was reading a book that was required summer reading for 6th grade. This book was published over 30 years ago. When he got to a sentence that used the word “retard,” he stopped and innocently asked, “Mom, what does that word mean?”
At first, I was shocked that he did not know the meaning, but as I thought about it more, I realized this term was no …
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Food allergies are frightening, not funny
On a daily basis, I am introduced to new people from all walks of life. Some sit on the board of directors, some are CEOs, some are presidents, some are middle managers and other administrators, some are investors, others are entrepreneurs, and some are physicians, nurses, case managers and even patients.
I listen to people talk about the big challenges in health care. It costs too much, we have a shortage …
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Let’s change the mediocre status quo of health care
In 1996, I had an illness that nearly killed me. I was exhausted, felt awful, could barely stand up and had trouble remembering things. Yet, I somehow had to find the energy not only to take care of my newborn and 5 year old, coordinate our upcoming move, consult with doctors and other medical providers on my condition and treatment, and receive treatments that might or might not help me …
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8 ways to be your own health advocate
At 3 1/2 years old, my son was the picture of health. I have an actual picture. He is in jammies, wearing my sunglasses, laughing and chalk coloring the driveway while the sun is shining on his blond hair. That picture frequently flashes in my mind. I posted it on Facebook, my happy, healthy boy. There was no warning and nothing to prepare me for the months ahead.
First, it was …
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How Frozen saved my son in a way medicine couldn’t
The impact of the opioid crisis struck home within the Missouri physician community on Dec. 15, 2014. That’s the day when, just two months shy of his 30th birthday, Derek succumbed to an opioid overdose.
The news was devastating for his mother, Kelly O’Leary, a longtime volunteer with the St. Louis Metropolitan Medical Society Alliance, and her husband Timothy O’Leary, MD, a radiation …
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Physician spouse speaks out against dangers of prescription opioids
From the wrong diagnosis to the incorrect medication, medical mistakes kill as many as 250,000 people annually in the United States — and injure thousands more. This figure could be much higher, considering there’s never been an actual count of how many patients experience preventable harm. We only have an approximate figure, which may indeed be very far off from the truth, considering the inaccuracies in …
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We need a more comprehensive approach to investigating medical mistakes
“Doctors are not the problem. Patients are.”
Anyone who has ever thought the above statement is true has not tapped into the vast well of knowledge and intellect found in their own patients. Training patients to be better patients brings the joy of medicine back into your practice.
All of us, at one time or another, sat in a classroom. The teacher spent the first day going over the rules of the …
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Are patients really the problem?
An open letter to doctors still prescribing opioid medication when necessary:
Thank you so much for standing up for us pain patients. My chronic pain comes from a genetic connective tissue disorder (Ehlers-Danlos Syndrome), so there is no treatment or cure for my slow, but relentless, physical deterioration as the collagen holding my body together falls apart.
I, like so many other pain patients, spent years (1982-1995) trying other therapies (yoga, acupuncture, …
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Stop the war against patients with intractable pain
At the 8th Annual Patient Experience Summit, Adrienne Boissy, MD, MA, Chief Experience Officer at Cleveland Clinic Health System, encouraged conference attendees to “dream bigger.” So here goes. It’s time for you to invite patients to speak to promising young doctors during their time at your respective schools. You need to invite patients for regularly scheduled story sharing. Don’t roll your eyes at me just yet. It’s time to invest in …
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Every medical student needs to hear patient and caregiver stories
After sixteen years of chronic illness and even after writing a book titled How to Be Sick, I still can feel sick of being sick. (When I use the word “sick,” I’m including chronic pain.) If you’re as intimately familiar as I am with sick of being sick, you know it how unpleasant it feels.
Here are ten strategies to help you through this difficult emotional time.
1. Start by acknowledging how …
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10 strategies to try when you’re sick of being sick
We were brand new to the clinic, looking for a new doctor after our beloved pediatrician had retired. Our three living children are healthy as galloping horses — a simple fact made astonishing after the deaths of their two sick sisters. But they still need well-checks and vaccines and strep tests and a place to call about rashes and fevers and flu.
So here I was, hugely pregnant, waddling in the …
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What one good doctor taught this mother about grief
I had my first outpatient surgical procedure when I was still in high school and needed a plantar wart removed from the sole of my foot. As the doctor injected the area with a local anesthetic, he explained he did these procedures all the time, and I wouldn’t feel a thing. After a short wait, he began to dig out the deeply embedded wart with a hooked scalpel.
With the first …
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When impossible pain is, in fact, possible
Now more than ever, health insurance is a staple story in the 24-hour news cycle. Opinions vary widely on the issue, as do politician’s thoughts on the matter. Debates rage, tensions grow, and deeper divides are formed as our government wrestles with this colossal dispute. Nestled at the heart of it all though is a basic question:
Is health insurance a right or a privilege in the United States?
I’m alive today …
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Having access to health care saved this patient’s life
