Archive for the ‘PPF SECTION’ 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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Reading, Writing…Weight Control?

Conversation Continues
Tuesday, May 15th, 2012

Conversation Continues feature ongoing discussions or news on current health topics with links to related materials.  They are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  By Kelly Malcom, Editor, CFAH’s Health Behavior News Service.

A recent report by the Institute of Medicine has called on the nation’s schools to play a key role in stemming the steady increase in childhood obesity by requiring physical education and including food literacy along with other staple subjects such as reading and math. In a Wall Street Journal article, Dan Glickman, chairman of the panel that wrote the report, said, “If you believe this is a massive national problem, you have to deal with it in a systems way.” Yet, the article continues, the challenge is in making the changes.

Schools in Massachusetts are going so far as to ban bake sales and limit access to junk foods during the school day. While it may seem like a lot for schools to take on, many health policy experts see schools—where kids spend much of their day—as a prime target for the fight against obesity.

Earlier this year, the Obama administration unveiled changes to the federally-funded National School Lunch Program to upgrade nutritional standards and ensure that kids receive more fruits and vegetables while at school.  California has already begun to address the way kids eat at school by banning soda and offering low calorie foods.  The changes seem to be working. New research shows that, compared to teens in 14 other states, California students consumed on average 158 fewer calories per day.

New research also suggests that gym class and recess are a benefit to kids mentally as well as physically, by encouraging cooperation and conflict resolution. Esther Entin, M.D., a pediatrician and clinical associate professor of Family Medicine at Brown University’s Warren Alpert School of Medicine, reports on research in The Atlantic that “suggests that recess time can be considered a potentially influential part of the school day that can foster important skills in individual students and in school communities.” Despite this, continues Entin, academic, budgetary and overcrowding issues have conspired to reduce recess.

Case in point: A recent study in the American Journal of Preventive Medicine reveals that in California, where there is a mandate requiring 200 minutes of school physical education every ten days, kids in districts that offered phys ed performed better on fitness tests.  Surprisingly, only half of the CA school districts studied fulfilled the state mandate for PE.

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Guest Blog: What Fuels Patients Searching Online

Andrew Schorr
Thursday, May 10th, 2012

Andrew Schorr is the founder and host of Patient Power ®, a website and radio program designed to connect people with news and experts on health. Want to know more about Andrew Schorr and Patient Power? Go to: www.patientpower.info or follow him on twitter. This post originally appeared on the Patient Power Blog.

From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That’s one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here (click here to see the up-to-date results) . If you haven’t already participated in the survey, please add your voice right now.

  • While 94 percent of survey respondents who visit Patient Power are confident in their knowledge about their health concern, 9 percent are not confident their doctor is knowledgeable. And 26 percent say they doctor does not do enough to help them as patients be more knowledgeable or in control.
  • 35 percent say they look for updates on their condition every day.
  • The number one reason they come to Patient Power is to see or hear interviews with experts in their condition.

When we asked them to rank the sources of their information:

  • Doctor or Nurse was number one but Patient Power was a very close second followed by patient advocacy groups.
  • Pharmaceutical company websites were at the bottom of the list and the general news media was only slightly higher.

When you wonder what people do with the information, the survey told us:

  • 84 percent said they have or will discuss what they learned from Patient Power with their doctor and the number one benefit they cite is that it gives them more confidence in their discussions
  • 97 percent have or will recommend Patient Power to others

My takeaways from this:

Among patients with serious illnesses, like those we serve, patients are becoming very savvy and active as they search for information frequently. They wish their doctors would do more, but since they don’t patients go searching themselves and become confident in what they know.

Despite millions spent by pharmaceutical companies and general health sites, patients eventually zero in on sources that are the most specific and current for them. That remains their doctor or nurse or niche websites or advocacy groups that speak directly to them. Then they depend upon these sources as their “radar” to tell them when there is something new and to put it in perspective.

I am gratified Patient Power ranks so highly and that visitors recommend us to others. If you are one of them, thank you! And you can be sure we are noting your suggestions and will improve with your guidance. We know what we do can make a huge difference in your health and we honor the trust you put in us.

Wishing you and your family the best of health!

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