Archive for the ‘GoodBehavior’ Category

Patient-Centered Care Should Minimize Post-Surgical Surprises

Jessie Gruman
Tuesday, August 17th, 2010

Jessie GrumanRick Hamlin, in an op-ed essay last week, recounted how his surgeon assured him that he would be able to go on a family vacation to Spain three weeks after his open-heart surgery.  In the New York Times piece, Rick described his disappointment and despair at the unexpected six months of fatigue, pain and depression that constituted his recovery.

Letters from patients and physicians alike confirmed that a six-month recovery from such surgery is pretty typical.  They also noted that the surgeon’s unrealistic prediction about Rick’s recovery is fairly common.

I’ll leave it to others to speculate about why a physician would so mislead his or her patient.

My concerns, rather, are (1) that we patients — along with our loved ones — must now assume considerable responsibilities following surgery; (2) that all of us are poorly prepared to do so; and (3) that such optimistic predictions about our recovery hurt us by undermining realistic planning.  Minimally invasive techniques and other advances in surgery mean we leave the hospital quicker but sicker and find ourselves managing drug, wound-healing, dietary and rehabilitation recommendations on our own with only the help of our family and closest friends.

This largely unrecognized burden on families is beginning to be addressed through regulations that require that we are provided with information about our care upon discharge after surgery BUT only to some of us…only if we ask…only some of the time. One example: a new regulation for meaningful use of electronic health records.

This is an important gesture, but only a small one.

If you have ever come home from the hospital after surgery worried that the pain will be too much to bear, that you won’t be able to get to the bathroom, that your coughing will split your incision open, that there is no one to help you during the day when your spouse is working — or if you have ever cared for someone with even one of these concerns, you know how critically important it is to be prepared.

We need to know what is normal and what dangers to look out for.  We need to know if we can care for ourselves.  We need to know when and how to take the drugs, what to eat and drink, what to strive for in our breathing and mobility, how to take the drugs and use the devices —  the list goes on — if we are going to benefit from the surgery and recover optimally.

Current efforts to deliver care that is “patient-centered” pay little attention to ensuring that we have the knowledge, skills and support required to care for ourselves and our loved ones once we leave the doctor’s office or hospital.

Upbeat, positive surgeons who blithely assure us we’ll be back on our feet in no time constitute one more signal that providers fail to recognize our growing responsibilities for post-surgical care and the impact of those actions on our recovery.  Such messages obscure our need to prepare for a convalescence that can last for months and affect our abilities to fulfill work and family responsibilities.

There is no way we can prepare for every contingency.  But there is a big difference between preparing for a vacation in Spain in three weeks and a slow six-month recovery.  We need to know which it is.

You Want Me to Discover WHAT on My Personal Health Record?

Jessie Gruman
Tuesday, August 3rd, 2010

Jessie GrumanThe Robert Wood Johnson-funded Project HealthDesign primer on Personal Health Records (PHRs) describes the new PHR both as a repository for information related to one’s health care and a way to record observations about daily living (ODLs).  We’re meant to track these observations  –  the amount and quality of our sleep; what we ate; our blood pressure; our symptoms – in the belief that such information will “shape daily decisions”… and allow for “a more productive discussion with (our) clinician.”

One piece of good news:  The initiative is taking an approach that Apple, for example, has perfected but which seems only now to be dawning on health technology developers: asking potential users what they need help with and testing new approaches with them.    This plea is not new, but is heeded only sporadically.

More good news: People are telling developers how little interest they have in monitoring their health-related activities.  For example, investigators hoped that individuals with diabetes would be interested in taking a picture of everything they ate and e-mailing it to their doctor. “People just wouldn’t do it…They felt it was invasive or that it stigmatized them,” reported principal investigator, James Ralston, MD, PhD.

The lack of enthusiasm on the part of participants didn’t discourage the scientists, however.  Rather, it merely convinced them that they hadn’t found the right hammer with which to pound the nail of dietary monitoring for people with diabetes.

And the investigators may be right.  While new technologies now make it possible to track many aspects of our behavior and physiological processes, our lack of interest in using those technologies may be due to their intrusiveness or clumsiness.  Or maybe it’s just a matter of time – maybe we are late adopters of some types of technologies. A recent report by the California HealthCare Foundation found that the biggest users of personal health records right now are college-educated men under the age of 45 – not the average person in their late 50s with diabetes, hypertension or sleep problems.

I’m bemused, though, by this assumption among some that just because we can monitor various aspect of our health means that we eventually will.

The Data-Driven Self,” a recent New York Times article, discussed this assumption in depth and concluded that “Self-tracking … is not really a tool of optimization but of discovery.”  As someone with a number of chronic conditions who has talked with hundreds of others with the same, I can say that our appetite for “discovery” about our diseases and symptoms waxes and wanes: the demands of our lives – our work, our worries, our enthusiasms and our responsibilities – often make it difficult for us to do the basic tasks of caring for ourselves, much less track them with the aim of discovery.

Who’s Got My Back?

Jessie Gruman
Tuesday, July 27th, 2010

Jessie GrumanLast week The New York Times published a front-page feature about how diagnosing breast cancer “can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.” The article goes on to discuss how advances in imaging present serious challenges to pathologists, particularly with borderline breast lesions, for example, resulting in both over-treatment & under-treatment.  It recounts the stories of women who unnecessarily underwent surgery and radiation treatment as the result of what appears to be some combination of ambiguous findings and pathologist error.

What does this report mean about the diagnosis of other irregularities and malignancies, breast and otherwise?  Do I need to seek a pathology second opinion? Can I trust a negative mammography report?

This article comes a couple months after another front-page feature in the NYT about the danger of poorly calibrated radiological equipment that has delivered dangerous – in some cases fatal – doses of radiation.  Loose regulation and monitoring resulted in devastating injuries to a number of people across the country.

Guess I should be checking up on that too when next I’m scheduled for radiation – Hey!  I wonder if this lax attention extends to X-rays and MRIs?

It comes two days before the Journal of the National Cancer Institute published a study showing that the relevant major peer reviewed journals published information required for a physician to prescribe and monitor new cancer therapies  was included in only 11 percent of the articles on cancer treatment in articles appearing between 2005-2008.  http://www.ncbi.nlm.nih.gov/pubmed

Well then, where does my doctor get the information she uses to treat me?

And all these news reports drop into a constant stream of new revelations that pharmaceutical companies are hiding data showing that commonly used drugs pose serious health risks…the past few months the focus has been on Avandia, but that is only the latest in a long series of disclosures about new and old drugs.

What do you make of this?

The uncertainty and risk are probably the same as they have always has been. They’re only now being measured and documented and reported on.  Even so, when I view these reports cumulatively, the self-interest of each of the players – health plans, doctors, safety monitors, pharmaceutical companies – is evident.  Conversely, these reports reveal how the responsibility of each player for the safety and health of the public is of lesser concern to them…but more, apparently, to us.

Because by implication, once we know about these deficits and dangers in health care, it is our responsibility to track them carefully and then try to reduce them for ourselves and for those we love. We have to do the research, get the second opinions, and double-check every treatment plan, every drug prescribed, every X-ray machine and every pathology report or we risk adding injury to our illness. We have to ask these questions and resolve disparate answers.

Is there an alternative response?  This is a heavy lift for most of us.  Who has got our backs?

Will I Do it for My DNA? Can Personalized Medicine Spark Healthier Behavior?

Jessie Gruman
Thursday, July 15th, 2010

Jessie GrumanThe 10th Anniversary of the decoding of the human genome has prompted a whole new round of media coverage on progress toward “personalized medicine” – i.e., approaches that “use genetic information to prevent or treat disease in adults or their children.” Not only will drugs be carefully tailored to our individual genetic profile, we will also be able to reduce risks and enhance our health by taking specific lifestyle-related actions that are determined by our unique constellation of DNA.

While I like the sound of these promises, I’m not impatient for their arrival.  We’ve got some work to do to get in shape for the demands personalized medicine will impose on us.

To date we don’t have a great track record for making changes in our behavior for the benefit of our health in general – witness the levels of physical activity and obesity that persist in this country despite persistent and inescapable messages that more of the former and less of the latter make a big difference to our health.  Similarly, many of us are not particularly assiduous in performing actions that have been shown to be effective in reducing symptoms and arresting the progress of our chronic conditions, like diabetes and heart disease.  It’s even tough for some of us to maintain our regimens even when the consequences are dire: we cheat on our chemotherapy, lag in our compliance with anti-rejection drugs following transplants and refuse surgery that has a good chance of keeping us alive following a lung cancer diagnosis.

We have had years of health risk appraisals and cool online tools like Your Real Age…all designed to personalize our risk profile and offer guidance on healthy behaviors.  But these seem to have mainly appealed to those worried well who are already pushing back from the all–you-can-eat buffets and taking the stairs instead of an elevator.  David Ropeik, a consultant in risk perception and risk communication, and author of the new book, “How Risky Is It, Really? Why Our Fears Don’t Always Match the Facts” shares in a recent Boston Globe article, “It’s about how a risk feels, not what the statistics or the science say.’’

What makes anyone think that our current lack of action to minimize our unique risks and get the most from effective treatment will be different in response to personalized medicine based on our genes?  We don’t seem to be able to think our way to good health behavior…. will knowing the risks embedded in our genetic composition lead us to feel – and then act — differently?