In the world of health care, as in most enterprises where we must interact with one another for mutual benefit, we need words to describe one another. And the words we have for us people who use/need/want health care frankly don’t cut the mustard.
We need a new one.
The French gave us tasty food, the Statue of Liberty, and the wonderful phrase, “le mot juste.” Translated literally, it means “the exact …
We need a new word for patient
Recently, both my husband and I came away from a conversation with my doctor positive that we understood my new weight gain plan. Funny thing: Each of us recalled a different plan. I am always struck by how our memories of the words spoken by my doctor can be so dissimilar. No, not all of them, but enough of them to be wary of going to any appointment without a …
Is the time right for e-caregiving?
The cold ultrasound probe pressed uncomfortably onto my abdomen. “It looks like an ovarian cyst,” the pleasant technician told me, “But of course we’ll run it by the radiologist.”
For the past few months, I had felt a dull, heavy pain in my right lower quadrant that sharpened when I coughed. I’d put off having it checked during my busy schedule as a third year medical student. However, the nagging knowledge …
I felt abandoned by the system to which I had committed my career
We never know how high we are
Till we are called to rise.
-Emily Dickinson
It could be suggested that the “good death” is falsely named in the field of thanatology and in the popular press. It implies an ideal state, one which of course we cannot have. Never agonize over ideals when the problem is as urgent as death. Perhaps it should be renamed “the good-enough death,” one that is …
There is a cure beyond saving a life or the curing of an illness
One of my doctors always asks if he can examine me before he starts. He identifies each body part he is going to touch as a question. I feel like I can always say, “No ear exam today, thank you.” Or alternately, “I’ve been having a little pain in my left ear. Can you check it?”
Tiny point. Subtle. But by merely asking me, my doctor signals that I am not …
How choice can drive patient engagement
My right eye had a blackout in September 2010 when I stepped onto our deck. I didn’t pay much attention to this episode as my vision zoomed back into focus within seconds. But several months later, my eye was playing tricks with me when the only way I could read was with my right eye closed.
Back in 1981, I had lupus though I didn’t know it at the time. My …
A love affair between big healthcare and big insurance companies
Patients continue to teach me new things about medicine and a woman named Bonnie has been one of my best teachers yet. I met Bonnie last month in an online community where she was sharing with other ovarian cancer patients her decision to transition to home hospice.
While explaining that this is of course an intensely personal decision, she wanted her community to understand this option, which we physicians are often …
When a patient teaches you to tango
I love to-do lists. I depended on them when I was working outside the home. I’ve depended them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.
A few weeks ago, I realized I could benefit from a not-to-do list that would …
A not-to-do list for those with chronic pain or illness
I met Dr. Stulbarg when I was twenty-two, and had just moved in with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy until now, when his lung collapsed on the way to a party. Then, in the hospital, his lung collapsed a second time. We sat on his bed together, talking with Dr. Stulbarg about what would happen next.
Stephen had told me about Dr. Stulbarg already. …
“Health care costs are sky-rocketing!” “The percentage of the U.S. GDP devoted to heath care costs is the highest in the world.” “The cost of Medicare is unsustainable.”
For most of us, the cost of health care (i.e., the dollars required by the system to produce and deliver care) isn’t what brings us the most anxiety.
It’s when we’re patients or helping a loved one find care that so many of us are deeply …
Finding out the price of health care should be a realistic expectation
Recently, I was bemoaning the fact that while the first conference specifically addressing diabetes and depression was a good start, there really wasn’t a significant patient presence. Lots of experienced professionals in the field, but startling few people who had actually walked-the-walk with significant depression for years, decades even.
While this format will surely offer a lot of information from the professionals viewpoint, it seems that it would be a bit …
Are patients marginalized at health conferences?
As a nursing student, I have always enjoyed the opportunity to see firsthand new procedures, treatments, wounds, and wound care on patients. Many of the patients were older and resided in the nursing homes where we conducted our clinical rotations. It was not unusual for several of us to gather around a patient while the wound care nurse or doctor cleaned, debrided, and dressed a pressure ulcer. For us students, …
Our patients are more than the sum of their parts
Have you noticed that most sick characters on TV shows look pretty good and are coherent — often feisty — even when they are in the hospital?
Have you caught the number of ads for drugs and health plans showing happy, vigorous people that dominate the major consumer health websites and are common on TV?
Have you noted that websites of disease voluntary organizations (lung, cancer, Crohn’s disease, arthritis) tend to show healthy people participating in “fun runs” or other …
The image of illness in the media
ADVERTISEMENT
“Did you sell the business yet?”
I marvel at my patient Jack: despite his breathlessness, he’s somehow managed to greet his wife Sara with a complete sentence. Given his condition, it’s truly amazing.
Most of his lung function has been devastated by his forty-year, pack-a-day smoking habit; the rest has been demolished by cancer. The easy, automatic breathing he once took for granted is just a memory. He can’t even lie down …
Some people choose the time of their death
An excerpt from Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital.
At last through the broken windows, the pulse of helicopter rotors and airboat propellers set the summer morning air throbbing with the promise of rescue. Floodwaters unleashed by Hurricane Katrina had marooned hundreds of people at the …
Life and death in a hospital ravaged by Hurricane Katrina
Hospitals struggle to get doctors and nurses to wash their hands. That’s a serious problem, since hand washing is one of the keys to reducing healthcare acquired infections that afflict more than a million patients a year and kill over 100,000. And it’s one of the reasons you should try your best to stay out of the hospital.
For the past few years …
Should patients be responsible for physician handwashing?
I often read advice to doctors about how to screen for domestic violence. I was that woman for many years. I was that child and I know for a fact my pediatrician knew but was afraid to report it. And then I grew up and became that woman.
Physical violence while brutal, doesn’t compare to the controlling, creeping intimate fear sustained in such relationships. My then husband came with me to some of …
A patient’s perspective on domestic violence
The lyrics to Janet Jackson’s song, Nasty, includes this line, “No, my first name ain’t baby, it’s Janet. Ms. Jackson if you’re nasty.” Miss Jackson doesn’t like being called, “baby,” and neither do a lot of patients.
Many healthcare professionals call patients by nicknames, such as, “honey” and “sweetie.” I believe these are terms of endearment and in most cases meant with genuine warm feelings toward patients. However, from interviewing hundreds …
A primer on addressing patients
Yesterday, I went with my friend to meet his new nephrologist and receive an unwanted diagnosis. I went with my friend because I have a unique skill set at meeting new doctors and healthcare providers and dealing with unfamiliar health situations. I know this routine.
I know after awhile any diagnosis at all, no matter how awful or serious, becomes a rhythm. I’ve done this as a patient and I’ve done it …
How to meet your doctor and receive your diagnosis in a better way
Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable — squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.
But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and …
I’ve unintentionally made most of my doctors uncomfortable
Get free updates delivered free to your inbox.
