Patient

October should focus more on incurable breast cancer

Carol Chaoui

Patient

October 18, 2016

Seven years ago, when I was first diagnosed with Stage 3 breast cancer, I approached it with a determination to win. As a competitive runner, that’s what I’ve always done. Cancer would be another uphill battle, with tough stretches as well as easier ones, just like my races.

My oncologist encouraged me to keep running during all my treatments, telling me it would help on many levels. He and I knew it would …

A new nurse gets a crash course in compassion

Marilyn Barton, RN

Patient

October 14, 2016

“Nursing students needed to work in the University Hospital. Good pay. Orientation.”

As a rising nursing school senior in the 1970s, I naïvely applied for the job above without getting the full details. No one mentioned that I’d be working in a psychiatric unit housing twenty-five aggressive, catatonic or schizophrenic patients, many of whom had been locked away for years.

The entrance sign, which should have read “Locked Psych/Med/Surg Unit,” said simply, …

How empathy can help physician burnout

Martine Ehrenclou, MA

Patient

October 9, 2016

By the time I reached Dr. R, I was twelve months into an undiagnosed, severe, lower abdominal pain condition. Desperate for an accurate diagnosis and treatment plan after seeing ten doctors who had misdiagnosed me, I was exhausted and beyond frustrated with the care I’d received.

Seated across from Dr. R. in her office with copies of my medical records and symptom diary in tow, I waited quietly while she reviewed …

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How empathy can help physician burnout

The value of a spiritually competent doctor

Eric Nelson

Patient

September 27, 2016

Whenever he meets with a new patient, Harvey Chochinov likes to ask one important question: “What should I know about you as a person to help me take the best care of you that I can?”

It’s a question every doctor should ask, says Chochinov, author of Dignity Therapy and director of the Manitoba Palliative Care Research Unit; a question he has found helps patient and doctor alike dial …

Death by hospital: Who’s right?

Dan Walter

Patient

September 7, 2016

Dr. Kaveh Shojania, a prominent patient safety expert who scoffs at the numbers and laughs at the tragedy inflicted on countless victims of medical error, should step down as editor of a leading hospital safety journal.

About three years ago, a scientist named John James published a study proclaiming that — at minimum — 210,000 people die every year from hospital errors, making it the third leading cause of death in …

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Death by hospital: Who’s right?

The subtle arrogance of good health

Angelika Byczkowski

Patient

September 4, 2016

Until my physical ailments began worsening rapidly in my late 40s, I was a high achiever, proud of my “kick ass” attitude, thinking I was so competent I could surmount any challenge life threw at me. Life appeared to be straightforward, and I didn’t understand why this didn’t seem to be the case for so many other less fortunate folks.

Though I worked hard for my accomplishments and sometimes struggled, there …

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The subtle arrogance of good health

This is my life with chronic illness. Tell me yours.

Ellie B.

Patient

August 23, 2016

“Get well soon!”

That’s a common saying. All of us have heard it. But what if you have an illness that you won’t ever get better from? The most horrible part of having a chronic illness is that it’s forever, or for a very long time.

Unless your personal miracle comes, your illness will always be with you. There isn’t an end in sight. There’s just adjusting to the pain, the tiredness, …

After a medical error: Here’s what clinicians should do

Betsy M. Cohen

Patient

August 14, 2016

I have been a rehabilitation specialist and case manager working with patients who have neurological and neuropsychiatric impairments for thirty years. About three years ago, my life took an unanticipated detour when I was perforated during a baseline colonoscopy. All of my experience as a case manger and patient advocate could not prevent this error or the others that followed.

Although my health, body, and life were forever altered by the …

At the end of life, searching for the right word

K. Anne Smith

Patient

August 8, 2016

During the first few days that my mother spent in hospice, I silently sat by her bed watching her chest rise and fall, listening to her moan, counting her doses of Ativan, Tylenol, and Morphine, and tallying the days she’d been without food and water.

On day five of my vigil, I asked her nurse, “How long can Mom live like this? She hasn’t opened her eyes or eaten or had …

The dilemmas faced by the chronically ill

Toni Bernhard, JD

Patient

August 8, 2016

After more than fifteen years of being mostly housebound by chronic illness (which includes chronic pain), here are a few of the dilemmas I’ve faced over and over. I’m confident that I’m not alone in my “should I/shouldn’t I?” world.

Do I accept an invitation from a friend to get together or do I refuse it?

If I refuse the invitation, depending on who issued it, it may be the last one …

Don’t secretly record your doctor. Do this instead.

Martine Ehrenclou, MA

Patient

July 14, 2016

I accompanied my husband to an office visit with his orthopedic surgeon. Jamie had been experiencing setbacks in his recovery from major surgery. I went with him because I understand how hard it can be to distill medical information on the spot, much less remember it. Documenting what the surgeon said would allow us both to reference it later. The more information Jamie had about his condition, the more of …

How cash-pay patients can beat high-deductible plans

Martine Ehrenclou, MA

Patient

July 9, 2016

Many of us now have high-deductible health insurance plans, which makes us “cash-pay” patients until we meet our deductibles. According to a Health Affairs health policy brief, high deductible plans are now much more prevalent in both individual and group markets.

The higher the deductible, the lower the monthly premium. If you have a high deductible plan and don’t consume much medical care, you are most likely a cash pay …

I live a life in which pain plays a constant role

Ronna Edelstein

Patient

July 3, 2016

When my friend Madeline turned seventy, she celebrated in a big way: She walked a half-marathon; she hosted a cabaret for family and friends at which she sang and told stories; she traveled to China. Now, six years later, this dynamic woman has become a virtual prisoner in her apartment. She has undergone back surgery, suffered a nearly fatal intestinal infection and, after a fall, had bolts and screws placed …

PTSD was the illness I couldn’t see

Amy Oestreicher

Patient

June 25, 2016

I grew up thinking an “illness” was either a fever or croup. Illness was a stuffy nose — a sick day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure …

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PTSD was the illness I couldn’t see

Doctors need to partner with families to save lives

Bonnie Friedman

Patient

June 22, 2016

“Hey, doc, you’re killing me.” Or, more specifically, us.

A recent report from researchers at the Johns Hopkins University School of Medicine points to medical errors as the third leading cause of death in this country. Despite the many safeguards put in place by the government, hospitals, and doctors, themselves, more than 250,000 people a year in the U.S. die from hospital-acquired infections, wrong-site surgeries, medication mistakes and a host of …

The tears flow after chemotherapy

Rick Monteith

Patient

June 15, 2016

One weekend about nine-and-a-half years ago, I flew from Minneapolis, where I live, to Atlanta for a publishing conference. A colleague and I were to make a presentation to the vice-president of one of our major customers.

For a couple of weeks, I’d been plagued by a sore throat, but I’d written it off as allergies or a virus. When I tried to begin the presentation, though, all that came out …

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The tears flow after chemotherapy

I didn’t get to say goodbye

Debbie Moore-Black, RN

Patient

June 9, 2016

I slipped and fell. My hip fractured, surgery would make it better. But it didn’t. My body was too weak to fight. I couldn’t cough and deep breathe; I stayed in bed. I had nausea and vomiting. I couldn’t breathe. I became weaker and weaker, until my family noticed. The medics rushed me into the ER. My blood pressure was 62/34. For how long? The ER nurses and doctors tried …

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I didn’t get to say goodbye

The first shower after surgery

Kristen Knott

Patient

June 7, 2016

“Do you need help getting undressed?” Jon asks from the doorway of our bedroom, one hand holding his BlackBerry, the other tucked into the front pocket of his baggy jeans. His head is slightly tilted, his eyebrows arched, highlighting his forehead wrinkles.

His phone vibrates, drawing his eyes from me to the incoming message. I wait.

Jon reads, ponders and then looks up, half-absorbed in what he’s just read, and registers that …

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The first shower after surgery

10 indispensables for those with chronic pain and illness

Toni Bernhard, JD

Patient

May 30, 2016

This piece is based on personal experience and on the thousands of emails I’ve received from those who live day-to-day with chronic illness (which includes chronic pain).

1. Email. I know the joy of hearing the actual voice of a loved one. That said, email is the principal way I communicate with people.

It’s hard for me to talk on the phone. It saps my energy quickly, partly because of the need for …

Your medical records are a gold mine for cybercriminals

Martine Ehrenclou, MA

Patient

May 27, 2016

Some say privacy is an illusion. I hope that isn’t true, but I do know that our medical records are not safe. Why should you care? Because our medical records contain our social security numbers, health insurance information, our home addresses, phone numbers, emergency contacts and their phone numbers, our email addresses, possibly our driver’s license numbers, and likely credit card payment information. Ever paid your co-pay with a credit card?

Your …

Patient

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