I sat in my car, anxiously watching the minutes tick by as I ruminated over and over the words, I had prepared for this crucial meeting. I had arrived much earlier than the appointed time, knowing I would need a few moments to calm my nerves before walking into a room to face a panel of eight legal, medical, and insurance professionals.
I was pregnant with my sixth baby and was …
Home births sometimes make sense for health insurers
SNF is the acronym we use in health care for “skilled nursing facility.” Fittingly, it is pronounced “sniff,” a fact that became fitting as I watched my father die in one this past week.
My parents, 86 and 89, bought into a beautiful retirement community 10 years ago. Included was a lovely apartment, full-service dining facility, gym and health center, the last of which included an SNF.
In the past three months, …
At this skilled nursing facility, the staff was skilled but not compassionate
Today, I am a 40-year old with type 2 diabetes. I have been on glyburide since I was diagnosed four years ago and am otherwise healthy, although my blood pressure today is 140/96. I don’t check my glucose levels at home because I don’t have a monitor. Typically, I avoid sweets, but my diet is high in natural sugars, carbohydrates and starches. The only exercise I get is walking around …
I’ve seen over 8,000 medical professionals. Here’s what I’ve learned.
“Why don’t you talk loud enough for the whole damn hospital to hear you?”
I’ve just greeted my eighty-four-year-old grandmother, and now this irascible voice has erupted from behind the curtain that separates us from whoever is sharing Grandma’s room.
The nursing assistant who showed me in glares across the curtain at the other inhabitant.
“You shut up,” she tells the person firmly, “or I’ll smack you with a bedpan.”
Then, she leaves us …
A hospice worker says goodbye to a loved one
Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Another way to think of it is that pacing is a way to keep you inside your “energy envelope” — the envelope that contains your energy stores for any given day.
First, an admission: Even though pacing may be the single best …
5 effective strategies for pacing when you’re sick or in pain
I’m convinced this will be a year of reflection for our family — as we’ve witnessed so many transitions in the past year I find myself deep in thought. As I reflect, I’m full of appreciation for the journey we’re on. I’m full of gratitude for so many of the people who have helped us along the way — especially the amazing doctors who have become like family. This past …
To the doctor who saved our son’s life
Everyone immersed in the culture of medicine knows that physicians sometimes defer the discussion about prognosis to patients who are battling a life-threatening illness. Everyone, that is, except the patient. We arrive on your doorstep believing that our presence indicates the obvious. So, how are we to know that we have to ask for something as life altering and important as a prognosis? Deferring to the patient for prognostic discussion …
What patients want to know about their prognosis
Once upon a long 18 years ago, I got sick.
I was sick from a growth in my brain.
The growth was found after I’d shuttled from doctor to doctor, from appointment to appointment, from X-ray to scan. It took a year. By then, my pain was clothed in shame. Undiagnosed pain does that: It draws the gaze of friends, family and providers. Everyone looks for the cause.
“Soul pain,” said one doctor. …
A hospital, a stranger, and a bottle of beer
One of the first things they teach in medical school is that if you haven’t pretty much figured out the diagnosis by the time the patient finishes sharing their history, your doctor hasn’t done his or her job well. Certainly, this is a bit of an exaggeration, as many diseases cause similar symptoms.
As you share your background, your doctor is creating a list of possibilities of the most likely conditions …
How you can help your doctor diagnose you
When Donna Helen Crisp, a 59-year-old nursing professor, entered a North Carolina teaching hospital for a routine hysterectomy in 2007, she expected to come home the next day.
Instead, Crisp spent weeks in a coma and underwent five surgeries to correct a near-fatal cascade of medical errors that left her with permanent injuries. Desperate for an explanation, Crisp, who is also a lawyer, said she repeatedly encountered a white wall of …
These 2 words can soothe patients who have been harmed
There was a lot about that place I didn’t want to see or hear.
The buzzing and whirring of ventilators; the loud call bells; near-dead patients; nurses running around with IV pumps and tubes dangling along behind them; the heart-stopping “Code Blue” warning; or the electrical sizzle of a patient getting shocked as someone screams, “All clear!”
I didn’t want to do it.
Just a few days before, I had buried my mom.
First …
How hospice helped my mother find peace
The patient, age forty-nine, complained of abdominal pain. She was taking both slow- and fast-acting oxycodone to manage the pain, and she also took antidepressants and a sleeping aid. She’d come to the hospital several times in the past year, always with the same complaint. This time, not feeling well enough to drive, she’d come by taxi. The veins in her arms were small, threadlike and collapsed, like those of …
My mother isn’t a drug-seeking patient. She’s in pain.
Eight months into a healthy pregnancy, my belly suddenly hung lower. I noticed that the baby’s movements slowed, decreased in frequency, and seemed sluggish compared to just a few days before.
Concerned that something might be wrong, I called my obstetrician’s office and described what I’d noticed. The nurse I spoke with gave rote and reassuring advice: “Babies often get crowded near the end of pregnancy,” she said briskly. “Drink some …
Bereaved families need a compassionate presence
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An article from the Wall Street Journal caught my attention, and for all the wrong reasons. It was a review of two recent studies showing that medical trainees have difficulty diagnosing patients with complicated histories or confounding psychosocial features. At least, that’s the way I would describe those studies.
The WSJ, however, used much more pejorative language, referring to them as “difficult patients,” “a nuisance,” and “an annoyance.” …
Patients are not a nuisance to their physicians
A hospital stay is a right of passage for any patient, but the road to health is often a marathon and not a sprint. Discharge is an essential step in the patient journey, but it can be as exciting for a family as it is daunting. Families can prepare ahead and put all the right pieces in place in order for a “soft landing” home. Here are some of our …
How to ease your transition home from the hospital
Patients with extended illness or chronic conditions often acquire a communicative competence with far more complex medical terminology than their doctors realize.
This is important, given that patients are too often seen as passive recipients of medical information, or worse, incapable of understanding their own health data. Recent studies show that one of the most effective prescriptions for increasing health outcomes and reducing medical malpractice rates is improving how doctors communicate …
Understanding the language of illness
Bringing a child into the world is nothing short of a miracle. It’s not comforting to think about, but even if you do everything “right,” there can always be circumstances beyond your control. Whether you have been told to plan for a stay in the NICU or it’s unexpected, here are survival tips from nurses for orienting yourself to the NICU.
1. Try to see your baby as soon as possible. It …
8 survival tips for families with babies in the NICU
I recently consulted a specialist at a major medical center in New York, and a few days later, here came a questionnaire in the mail. “How much time did I spend in the waiting area?” it asked. How long was I kept waiting in the examining room? How close to my appointment time did the doctor see me?
The one thing it didn’t ask was whether I cared.
There’s no mystery about …
Please, doctor, don’t rush on my account
“Who’s in charge of the case?” the doctor asked a bit impatiently.
My husband was in the hospital, and his care seemed disjointed and fragmented. I was concerned and called his primary care physician (PCP) to ask advice. He hadn’t known my husband was in the hospital again and seemed frustrated.
I thought about his question for a minute and answered, “I guess I am. I am the one who talks to …
Who coordinates patient care? Maybe no one.
Obviously, chronic illness doesn’t affect everyone the same way. That said, I’ve heard from people all over the world with every imaginable chronic illness (which includes chronic pain), and our day-to-day lives are strikingly similar. And so, I thought I’d describe a typical “day in the life,” using my own experience from a few months ago as an example. My hope in writing this piece is for those of us …
A blow-by-blow account of daily life with chronic pain and illness
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