It was an ordinary summer day. People were milling on the main thoroughfare, bikes zig-zagging through traffic, cafés and pubs spilling onto the sidewalk, patrons sipping their way through a lazy Friday afternoon.
We were ordinary that day too. Just another family, managing the hectic jumble of kids’ lessons, bills, our careers, endless streams of birthday parties, too little sleep and the occasional date night out.
But it was all shattered with …
Heard these?
Media-fueled flip-flops and research breakthroughs on lifestyle and health behaviors are wearing down my usual patience with …
The effort it takes to become an engaged patient
According to the recent Wall Street Journal article patients are encouraged to engage in care, keep track of their medical data, seek preventive care, and to manage their conditions. Studies show that if patients are actively involved in care and partner with providers, that they experience better health outcomes and lower costs.
But for patients to be active participants in care they must acquire knowledge about their diagnoses and treatment plans, …
Patients need education about their role in care
If only our lives were more predictable and certain, we’d feel a greater sense of security and safety. Yet, much of what happens to us is beyond our ability to control. This is true whether we live in a third-world country or in the most advanced scientific and technological environment. It’s also true whether we’re struggling to make ends meet or living in the lap of luxury.
No one is immune …
The uncertainty that the chronically ill face
What if healthy pregnancies were treated like special needs pregnancies?
Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.
Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.
The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing …
A normal pregnancy framed as a one with special needs
We tell ourselves many things about our health each day, every day, all day long. The vast majority are unintentional, uninspired and blunt. A particularly sinful dessert brings admonishment, “You should not have eaten that.” Panting after two flights of stairs call for an exasperated, “I am out of shape!” Receiving a diagnosis prompts mental overdrive of “What if I don’t survive this?” thoughts.
Learning my diagnosis of chronic kidney disease …
5 messages you should say about your health
Hospice is a set of services that we all may need someday — if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole …
16 questions to ask when choosing a hospice
My second miscarriage started in a Starbucks bathroom, and I couldn’t have felt more alone. Where to go from there? I drove home, took as much ibuprofen as I could stomach, and resolved to quit my stressful teaching job.
I found a new position at a nonprofit, training writers to teach in public schools. My husband, who’d always been an entrepreneur, continued to lead a startup that encouraged girls to dream …
After giving birth, the small sting that hurt the most
I know the ropes at the VA … I’ll pick up the phone in a heartbeat and call my senator and get what I need right away. A lot of guys aren’t like that.
–Max Gruzen, PTSD patient, Vietnam veteran from the New York Times
So this is what it means to be an “engaged” patient in the VA system today. You have to know a senator who will intervene …
How entitlement undermines patient engagement
Next in a series.
What are some of the characteristics of healers? They listen and do so nonjudgmentally. They respond on the patient’s terms. They are humble. They are truthful. The healer communicates on the patient’s (and family’s) own terms. The healer always explains his or her reasoning. The healer tries to diminish the information gap.
Despite all of medicine’s sophisticated technology and providers’ skills, the patient still needs the doctor …
What are some of the characteristics of healers?
Feminism is the radical notion that women are people.
– Marie Shear
Recent speaking clients know that I often note the parallels between the patient movement and other cultural revolutions: the women’s movements, civil rights, gay rights, disability rights. (I mention disability issues less often, but it was disability advocate Ed Roberts who said in the 1990s, after years of struggle: “When someone else speaks for you, you lose.”)
As anyone who’s heard me …
Women’s right to vote and the e-patient movement
When my son Ben was 20-years-old, he was finally diagnosed with schizophrenia after five years of chaos and frustration — what I later came to know had been symptoms of the gradual onset of his illness. At the time, I’d thought he was just having a tough adolescence. I’d thought perhaps he needed more father figures (Ben’s father had deserted the family when Ben and his sister were little, and …
Living with my son’s schizophrenia: From fear to hope
Recently I had dinner with a friend of mine who, decades ago, had sat on my doctoral dissertation committee. At one point we touched on my dissertation, which covered the health issues of Baltimore’s homeless teens.
“You always had an uncanny connection with homeless kids,” my friend said. “You really understood them.”
I gazed out the window, seeing the homeless people with their shopping carts in the park across the street.
Then I …
It was time to proclaim myself as a wounded healer
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When I was a little girl, my dad was my hero. He was strong and brave, and it only took his presence to make me feel safe and secure. I thought he understood everything there was to know in the world. I believed he could solve any problem, slay any dragon, protect me from all harm.
That’s the best thing about dads, …
Remember the fathers of sick children
Dr. Robert’s office felt right to me, with a musical birdsong soundtrack, soft lighting and fresh green tea, and I had my best friend in tow: piece of cake. In this serene atmosphere, I was sure that I’d find out what to do next to finish treating my endometrial cancer.
“It’s probably gone now, since my hysterectomy two weeks back,” I thought. “But let’s play it safe; he’s the gynecological-cancer guru.”
Like …
Collateral damage after cancer surgery
Are insurance companies making more decisions about the health care you receive? While a decade or two ago utilization nurses working for insurance companies had some power to approve or reject certain treatments, the reach of insurers into the patient-physician relationship is lengthening.
In March, I reported that insurers were sending questionnaires to policyholders newly insured under Obamacare asking about their health conditions and medical needs. And some people were filling them …
Who’s making the decisions about your health care?
A pediatric oncologist seems to suggest we shouldn’t be getting too upset about childhood cancer because kids and teens dying or going blind “are things that we don’t typically encounter.”
“I think the important thing to realize is that cancer in children is highly treatable and ultimately curable,” Dr. Charles Hemenway of Loyola University said in HemOnc Today, in response to the movie …
Criticizing The Fault in Our Stars does childhood cancer a disservice
In an age where technology dominates our medical world, communication between patient and doctor often leave me wanting. Over the last few years as a patient, I have learned a number of strategies to help bridge the communication gap with doctors.
For patients:
Speak up. Nobody likes confrontation, but it doesn’t have to be an argument if you are calm and respectful with your …
5 ways to bridge the communications gap with doctors
Red wine is good for you. Red wine is bad for you. News coverage of health studies can give readers cognitive whiplash, and for good reason.
“The reason the stories contradict each other is because the studies contradict each other,” reporter Virginia Hughes wrote in her blog.
In her post, Hughes explains why it can be so frustrating to write about complex health research for an audience of …
Responsible public relations for health study findings
You will never see my face or know my name. You probably won’t give much thought to what happens to your blood after your doctor says, “I think we need to run some tests,” and the phlebotomist draws it into the tubes with their colored tops. I know I never did, until I became a medical laboratory technologist.
Over the course of a normal day at the hospital lab, my coworkers …
Our unsung work is essential to treating patients
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