Monday, June 30, 2014

HEART OF THE MATTER: TREATING THE DISEASE INSTEAD OF THE PERSON

NPR Blog
by Leana Wen
to view in original source visit: http://www.npr.org/blogs/health/2014/06/25/324005981/heart-of-the-matter-treating-the-disease-instead-of-the-person

 
A 56-year-old man is having lunch with his wife at a seafood restaurant just outside Boston when he develops crushing chest pain. He refuses an ambulance, so the man's wife drives him to the ER.
What happens next says a lot about the difference that being a doctor or a patient can make in how one feels about the health care system.

First, how did the patient and his wife see the trip to the hospital?

When the man arrives in the ER, he is told to take off his shirt. He lies in the hallway, in pain, naked from the waist up. Strangers surround him. They don't introduce themselves, and they talk over him, at each other.

Pagers ring and there's a lot of beeping. Someone else must be really sick, he thinks; that must be why no one is paying attention.

After a few minutes, he signs some forms and finds himself being wheeled into an elevator. Masked figures enter. He feels a cool liquid flowing into his veins. The lights go out.

He wakes up hooked up to machines, uncertain what has happened. It takes several hours for the staff to find his wife, who is still waiting in the ER lobby and has no idea why her husband is in intensive care.

They are both surprised when they find out, two days later, that he's had a heart attack. As soon as they get home, they file a complaint with the hospital about their terrible experience.
Now, how did the staff at the hospital see it?

A triage nurse greets the patient immediately upon his arrival and finds out that he has chest pain. Within three minutes, he gets an electrocardiogram that shows he is having a heart attack. The ER doctor activates the special heart attack pager, which immediately summons the emergency cardiology team.

The doctors and nurses arrive and bring the patient up to the catheterization suite. There, the attending cardiologist threads a catheter through an artery in his groin and pushes it all the way to his heart, where the doctor sees on an X-ray machine that a vessel is blocked. She inflates a small balloon in the catheter, opening the artery and restoring the flow of blood to the man's heart.

All told, it took only 22 minutes from the time the man entered the hospital for the cardiology team to clear the blockage. The cardiology team is proud that they beat the national average for what they call door-to-balloon time by 42 minutes. The faster a blockage can be cleared, the better the odds are for a full recovery.

The patient gets well without complications. Two weeks later, he's back at work and exercising again. The ER and cardiology teams consider the man's case a resounding success.

Why then are there such different views of the same ER visit? Who's right? The doctors who believe they delivered exemplary care, or the patient and his wife who feel he was treated badly?

As an emergency physician and advocate for my patients, I frequently hear clashing stories like these. When I review the cases, I find that the doctors and nurses are often surprised by the patient's complaint because they did everything by the book and made no medical mistakes.

Indeed, in this case, every measure of sound medical care was met: prompt diagnosis, speedy and effective treatment and an uneventful, full recovery.

The objective measures that health care workers focus on are necessary, but they're not enough by themselves. Every provider in this man's case had good intentions and was working hard to respond to the medical emergency. But in their rush to open the blocked heart artery, they treated him as a disease to be cured, not a person to be cared for.

Would it have alleviated the patient's anxiety for the doctors and nurses to introduce themselves, and to ask if he wanted his wife by his side? Would it have helped to assure him that all the activity was happening around him because everyone was trying to take care of him?
I think those simple courtesies would have made a difference.

These instructions aren't on typical checklists for treatment of heart attack, yet they are part of caring for people as human beings. In modern medicine, we are fortunate to have incredible high-tech options available, but we must not forget the low-tech approaches that can improve communication and quality of care.

Patients and family members can also speak up when they are confused and scared. It's possible that doctors explained what was happening, but not clearly enough.

What if the patient said he didn't understand what was going on? What problems could have been avoided if the patient and his wife didn't wait until after he was discharged to raise their concerns?
The two viewpoints of this ER visit end with one thing in common. Just as the providers were surprised by the patient's complaint, the patient and his wife were taken aback when the team that I was part of presented them with their doctors' point of view.

"We had no idea they were trying so hard," the man said. "It's too bad we didn't know that at the time."

Wen is an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University. She is the author of "When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Care," and founder of Who's My Doctor, a project to encourage transparency in medicine. On Twitter: DrLeanaWen

Monday, June 9, 2014

LIVING WITH CANCER: CHRONIC, NOT CURED

By SUSAN GUBAR    
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer. 
 
 
Perhaps the concept of chronic cancer has been hard to comprehend because public discussion tends to focus on the initial diagnosis of breast cancer. Early detection of breast cancer yields good survival rates and many patients can consider themselves cured. Often we assume a clear-cut partition between survivors and the terminally ill.
    
In her book “Cancer Made Me a Shallower Person: A Memoir in Comics,” Miriam Engelberg divides a circle into two uneven segments to illustrate a divide in the breast cancer community. The larger part of the circle is labeled “Primary Diagnosis Only,” and a cartoon bubble exclaims, “I’m O.K. — Really!” The small section is labeled “Gone Metastatic,” with the caption “Damn!”
 
From the time she got her initial diagnosis in 2001 until her death in 2006, the same year her book was published, Ms. Engelberg resisted pressure to become “someone nobler and more courageous than I was.” She followed “the path of shallowness” by producing a series of droll comics on the “insanely cheerful” chemotherapy booklets and radiation technicians she encountered. She mocked her own self-absorption, trepidation and irritation as well as the social quandaries that arose as she, like her cartoon surrogate, plummeted from cancer survivor to terminal patient.
 
But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
 
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.
  
Still, quite a few patients with some types of leukemia or lymphoma, prostate or ovarian cancer live for years. While in the 1970s 10 percent of women with metastatic breast cancer survived five or more years, today up to 40 percent do. Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.
 
On a number of websites, people with chronic cancer discuss the succession of therapies in which they enlist. When one drug fails, another combination of drugs begins. Complex dosing schedules, multiple tests and hospitalizations take their toll. No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners.
 
Ms. Engelberg’s “path of shallowness” can alleviate strain, especially from disabling byproducts of persistent maintenance: sadness, anxiety, anger and then remorse about all those roiling emotions. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to adopt a healthy lifestyle, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to meditate to a state of mindfulness, to greet each day as a prized gift, to enlist the power of now. The social pressure to be upbeat can get anyone down.
 
The shallow path enables the cartoon character Miriam to circumvent the guilt trips induced by a gaggle of past and present cancer gurus. Instead of going inward, she often distracts herself: zoning out on “Judge Judy” or attaining “trivia nirvana” through crossword puzzles or joking about the need for a support group to cope with the jolly advice of her support group. Eventually she decides to make cartooning her “spiritual practice.”
 
If I am low during a yoga session, if the warrior, the goddess and the star feel impossibly strenuous, I take the shallow path with the supine pigeon and a revision of my wonderful instructor’s final words: “I am as whole, healed and healthy as I can be in this and every moment.”