Archive for the ‘Make Good Treatment Decisions’ Category

Guest Blog: Are You Afraid of Being Labeled a Difficult Patient?

Barbara Bronson Gray
Wednesday, May 16th, 2012

Barbara Bronson Gray, RN, MN is an award-winning writer and nationally-recognized health expert who blogs at bodboss.com. She has worked in hospitals, helped run hospitals, led a major healthcare magazine, wrote articles on healthcare for many national magazines and newspapers, developed a website for WebMD, served as a leader of global communications for biotech giant Amgen, and has a communications consultancy based in California.

There’s a wonderful Seinfeld episode  where Elaine grapples with being labeled a “difficult” patient. She’s on the examining table, waiting for her doctor, when she sneaks a peek at her medical chart. She discovers that she is described as “difficult” in her record. Elaine reacts to this harsh reality in later scenes: her “difficult” label is passed from one physician to the next via her patient history. Her reputation precedes her, and she gets crummy care as a result.

Turns out we’re a nation of doctor pleasers when it comes to health care.  A recent study conducted by the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science found that patients avoid challenging their physicians because they’re afraid of getting the “difficult patient” label.

Researchers conducted six focus groups, with mostly Caucasian, well educated and above average income patients.  All characteristics that might make you assume they would be comfortable and self-confident dealing with physicians. The researchers were surprised to discover that participants reported that they frequently hold back from sharing their preferred care choices with their physicians and from asking questions out of fear that it might damage their relationship with their doctor.

Have you ever felt this way?

Here’s an example of a common health care experience and some suggested replies:

You want to hear more about the pros and cons of a recommended diagnostic treatment, procedure or surgery. You’re interested in getting more information or maybe even a second opinion. But you’re concerned that pushing back a bit to get more information might hurt your relationship with your doctor.

Say something like this: “I need more time and information to help me understand and make my best choice. How can you help me learn more about my options?”

Or “This is a big decision for me. I want to get more information and talk to my family and other experts before I decide what to do next.  How quickly do you think I need to make a choice?”

The answers you get will provide you with some insights about how likely it is that this clinician will be comfortable with helping you make choices about your care that are best for you.

If your physician steps back, grumbles, resists, or worse, scribbles “difficult patient” in your chart, you might consider finding another physician.

There’s an effort underway, supported by organizations like the Informed Medical Decisions Foundation, to increase comfort with and skills in what’s called Shared Medical Decision-Making.  The Foundation (and others) is advising physicians that patients often find it difficult to express their preferences to their doctors.  They suggest doctors need to explicitly tell patients that their opinion matters and that it’s “OK to disagree.”  In addition, the Foundation is creating patient-physician decision support tools that help both walk through the pros and cons of many common medical procedures.

Changing patterns of patient-physician behavior is going to take time. In the meantime, try to see your physician as your consultant. Develop your questions in advance when possible and do ask them. Listen. Interact. And then, ultimately, decide.

Try not to worry about being called “difficult.” Your questions can help you make the best choices for you and your family. That’s worth it.

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Advice Urges Wider Sharing of Heart Care Decisions

Jessie Gruman
Wednesday, May 16th, 2012

Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

This article was written by Associated Press writer, Marilynn Marchione, and appeared on the USAToday website.

 Too often, patients with advanced heart failure don’t realize what they are getting into when they agree to a treatment, and doctors assume they want everything possible done to keep them alive, says the new advice, published Monday by the American Heart Association and endorsed by other medical groups.

It calls for shared decision making when patients face a chronic condition that often proves fatal and they need to figure out what they really want for their remaining days…The goal is “not only living long, it’s living well. People often make decisions about the ‘long’ without even considering the ‘well,’” said Jessie Gruman, president of the Center for Advancing Health, a patient advocacy group. The heart association asked Gruman, who has had several cancers and a heart problem, to review the advice from a patient’s perspective.

The worst thing is to have no plan or clear goals when an emergency occurs, she said.

“The person who’s ill may not have particular cognitive clarity and the caregivers may be upset and exhausted. They just haven’t thought it through — they haven’t had a chance to think it through. They’ve never done this before,” Gruman said.

Read the rest of this article at USAToday.

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Guest Blog: Illness is Not Discrete. On Feeling Sick, and Not Knowing What’s Next

Elaine Schattner
Wednesday, April 25th, 2012

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

A few days ago, the room around me started spinning.  I wished I were Jack Kerouac, so it wouldn’t matter if my thoughts were clear but that I tapped them out.  Rat tat tat. Or Frank Sinatra with a cold. You’d want to know either of those guys, in detail. Up-close, loud, even breathing on you. You’d hire ‘em. Because even when they’re down, they’re good. Handsome. Cool, slick, unforgettable. Illness doesn’t capture or define them.

Last Tuesday, I was feeling great. I went to the National Press Club  for the first time and was excited about some presentations I heard. I took careful notes and intended, eventually, to share those with commentary. It was a sunny day. I bought some groceries, planned a bunch of posts and to finish a freelance piece. In the evening I had dinner with my husband, and it seemed like my life was on track.

The rash was the first thing. Just some red, itchy bumps on the back of my neck. And then fatigue. Not just a little tired, but like I couldn’t write a sentence. And since then I’ve been in the center of a kaleidoscope, everything moving clockwise around my head. It’s not bright purple or hot pink and blue and stained glass-green kinds of colors circling, but the drab objects in the bedroom: the lamp, the shadow cast by the top of the door, the rows of light through the blinds, the brown and beige sheets, the back cover of last month’s Atlantic and my reading glasses on the nightstand, the gray bowl I’ve placed at hand, just in case I barf again. Walking is tricky. I’m dehydrated and weak, and my vision’s blurred.

This is not a pretty scene, if you could sf you could see it. And that’s the thing. The point.

Because in my experience, which is not trivial, people on both sides of illness – professionals and people you just know — are drawn to healthy people. A broken arm, a low-stage breast cancer that’s treated and done with, a bout of pneumonia – these are things that a career can afford, an editor can handle, friends can be supportive. But when you have one thing, and then another, and then another, it gets scary, it weighs you down. Just when you start feeling OK, and confident, something happens and you’re back, as a patient.

In the apartment on a spring day, with fever and fatigue, I’ve got no choice. I am not a consumer now. Not even close. That is my role, maybe, when I go to the dentist and decline having x-rays or my teeth whitened. No choice, except if I go to a hospital, to have a bunch of blood drawn and my husband would fill in the forms before the doctors who don’t know me in this city inform me I’ve got a viral infection, and labrynthitis as I’ve had a dozen times before, all of a sudden, disabling. Nothing to do but rest and hydrate. And wish I’d gotten some other work done, but I couldn’t.

I’ve got to go with it, my health or illness, be that as it is. No careful critiques of comparative effectiveness research today. No reading about the Choosing Wisely  guidelines. No post on Dengue, as I’d planned for yesterday.  Like many people with illnesses — and many with far more serious conditions — I’m disappointed. Maybe because I was sick as a child and missed half of tenth grade, I have trouble accepting these kinds of disruptions. Illness represents a loss of control, besides all the physical aspects.

I might try to watch TV, but more likely I’ll just fall sleep again. That happened yesterday. And for those of youhealth IT  or gadget guys  reading, who talk about smart phones and how useful they are for patients seeking info, or maybe even checking vitals, I’ll say this: I’m just glad I’ve got such a device, simply that I can call for help, that I can be in touch,  call my doctor and family. That makes being sick less scary.

This is a drag of a post, but it’s real. No point in blogging if I don’t say it like it is, what I am. If nothing else, this proves I’m alive.  So there!

Better tomorrow.

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Guest Blog: The Trouble with Trust

Barbara Bronson Gray
Thursday, April 19th, 2012

Barbara Bronson Gray, RN, MN is an award-winning writer and nationally-recognized health expert who blogs at bodboss.com. She has worked in hospitals, helped run hospitals, led a major healthcare magazine, wrote articles on healthcare for many national magazines and newspapers, developed a website for WebMD, served as a leader of global communications for biotech giant Amgen, and has a communications consultancy based in California.

A good friend with a chronic healthcare condition has over the last few years had a series of invasive procedures that have still not solved her problems. When I talk with her about seeking a second opinion at a time when she’s not in crisis — just to be sure — I see a wall come up between us. “I like my doctor,” she says. “I have to trust him.”

Should she? Should you?  I say: It’s not about trust.

Sure, when you’re in the air at 30,000 feet, you want to trust the pilot. I know I do.

But there’s usually just one commonly-accepted way to fly the plane. With most healthcare decisions these days, there are often a couple of different paths your treatment could take.

If you’re faced with a healthcare decision of some significance and have the luxury of even a few days to consider options, you can do some homework, get educated about choices, and ask your doctor some questions. Based on what you learn, you may want to get a second or third opinion to be sure you have considered the best option given your situation.

It’s not that your physician isn’t trustworthy, smart, committed, experienced or caring.  You’re not expected to know more than your doctor does about medicine, either. But you have a crucial role in deciding the path you’ll take.

Trust means “total confidence in the integrity, ability and good character of another.” When you’re making a decision about your health, your physician — no matter how well intentioned — may not be aware of other alternatives, or may have not seen all the research or be familiar with a new diagnostic approach or treatment. Your doctor may even have a blind spot, a preconceived notion that could go back to his or her experience years ago in medical school or residency.

It’s not uncommon for two physicians to disagree with each other. Who is to say, if you have physician A, that physician B might not offer a better approach to your situation?

Which is why when it comes to getting critical advice about your health, know that physician recommendations can vary greatly.  Find out what’s available for you, learn the pros and cons and explore why physicians disagree about what is right for you.  Discover what evidence is available to suggest a particular approach is good, better or best.

Then, and only then, you can trust that you’ve done all you can. In consultation with your family and your doctor or doctors, you’re far more ready to make a decision.

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