Tuesday, October 28, 2008

Narrative Medicine: Better Doctors, Better Patients?

One of the best classes I’ve ever taught—and by “best” I mean the most interesting, engaging, and rewarding, the class I learned the most from as an instructor—was a writing course for pre-med and health sciences students. It was called “Constructions of Health in Contemporary Literature” and it contained various essays from physicians, writers, and patients about illness, healing, social justice, etc. I was so fortunate to have the chance to read these types of works with a class of future health professionals and see the way they responded to these personal stories and how their readings might inform their identities as they develop their careers.

Of course, physician-writers are hugely popular outside the classroom; the best-selling work of authors like Atul Gawande and Jerome Groopman are probably the most well known examples of this. Narrative medicine is an important topic (now more than ever, I would argue), which is why I was so pleased to come across Dr. Pauline Chen’s article on combining literature and medicine on Tara Parker-Pope’s Well blog in the New York Times.

Among other things, the article discussed how incorporating literature and writing workshops during residency can help doctors view patients with more empathy and compassion—and by extension, it can help them provide better care. It is no easy thing for the well to be able to understand what it feels like to be sick, and no insignificant thing when doctors can do this. As a patient, I am encouraged by programs that incorporate literature and medicine and as a writer I am appreciative of the value others see in studying these works.

Perhaps it is from the dual point of view that I see another strong benefit to narrative medicine beyond fostering more empathy and compassion in doctors: I think it makes us better patients, too. It is useful for me to see the other perspectives, the thoughts and fears and reflections of the people charged with healing (not curing) me. I hope it makes me more understanding and more open-minded, too.

Between writing about illness, living with it, and teaching it for a living, I’ve done my fair share of reading. Here’s a short list of some of the best examples of both narrative medicine and all-around riveting health writing I’ve found:

A Life in Medicine: A Literary Anthology, edited by Dr. Robert Coles and Randy Testa. I’ve used this book as a basis for undergrad and grad classes and have even given it as a gift. It’s a great mix of classic and contemporary pieces.

The Tyranny of the Normal: An Anthology (Literature and Medicine, Vol 2), edited by Carol C. Donley and Sheryl Buckley. An interesting combination of scholarly and personal essays and poetry on illness and disability.

Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande.

How Doctors Think, by Dr. Jerome Groopman. I loved this book so much and it made me think about so many things that I quoted it in my own book when discussing the doctor-patient relationship.

Mountains Beyond Mountains: The Quest of Paul Farmer, a Man Who Would Cure the World, by Tracy Kidder. I was originally assigned this book in graduate school, where the obsession began. It is one of my favorite books of all time, and one I recommend to students, family, and friends every chance I get.

The Spirit Catches You and You Fall Down, by Anne Fadiman. An utterly engrossing and emotional narrative about one family’s quest to cure their daughter and what happens when Western medicine and other cultural ideals and norms clash. I’ve used excerpts of this in classes and recommend it to everyone.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sontag. Every time I read it and teach it I come away with something new.

Have you enjoyed any of these titles? Have any more to suggest? I am always on the lookout for new material!

Speaking of writing about medicine, another fantastic edition of Grand Rounds is up today at Emergiblog. Check it out!

Tuesday, October 21, 2008

Politics, Sports…and Chronic Illness?

I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

In other news, a new edition of Grand Rounds is up at Pallimed—check it out!

Tuesday, October 14, 2008

Women, Health Care, and the Presidential Election: Why Our Vote Matters

In an election where economic woes dominate the conversation and health care platforms are discussed in terms of polarity rather than specifics, it is easy to see how the importance of the female vote when it comes to matters of health is undervalued.

But it shouldn’t be. After all, women make two-thirds of health care decisions and are consistently health care voters. They also constitute a key swing vote—60 percent of undecided voters are women.

In advance of the upcoming election and on the eve of the next presidential debate, the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.

The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues.

Candidates, are you listening?

What’s more, the target voter, the independent female voter (I count myself in this population), is especially focused on health care—65 percent of female voters say it is the major or one of the major issues in the presidential election.

While I found all of the results interesting, as a young woman, an independent voter, and a patient with multiple chronic diseases, some of the ones highlighted in today’s press conference call were especially resonant. Not only did 83 percent of voters express familiarity with chronic disease, indicating a marked increase in awareness of chronic disease, but when given a long list of items on a health care agenda, treating and preventing chronic disease is at the top of this list. That means chronic disease factors more prominently than such hot button issues as electronic medical records or medical malpractice.

Policy makers, are you listening?

As I know all too well, managing health is a costly endeavor. These days I flirt with postponing appointments and tests to save money, and spend more time paying and filing medical bills than I do any other kind. The fear of losing existing health insurance and the rising cost of health care that is the number one issue for me in this election—indeed the number one issue in most of my personal and household decisions—is also an especially intense concern among younger female voters polled(defined as women under 50).

So I can claim solidarity with these likely voters on so many levels: chronic disease is the dominant issue in health care (remember, 130 million Americans have at least one chronic condition and it costs us $1.1 trillion annually in lost productivity); like most likely voters I am insured but not confident in my coverage; and like 92 percent of voters, I believe that early diagnosis, education, and prevention of chronic disease will make a difference.

Despite the recent crisis on Wall Street, increasing energy prices, and so many other strains, many voters polled supported increasing access to health insurance to all Americans even if it meant raising taxes, even if those dreaded words “federal government” were involved. Since access to insurance means access to education and prevention, that says a lot about our priorities.

Health care reformers, are you listening?

Most voters surveyed didn’t think health care is enough of an issue in the presidential campaign. I agree, and like so many of them, I see this election as a real opportunity to address it.

For what it’s worth, being a younger chronically ill patient who cannot afford to lose my health insurance, someone who is in no way a desirable candidate for insurers, means Barack Obama’s health care platform is more appealing to me. In short, the mix of existing private insurance and expanded government programs for those without access is a much better position for me than the free market would be. Check out their platforms and make your own informed personal decision.

More than anything else, timing is critical here. The female voter matters so much in this election, and chronic disease is what matters most to this important demographic when it comes to health care. It’s time to make our vote count, and it’s time for our leaders to demonstrate that when it comes to chronic disease and prevention, they are listening.

Wednesday, October 08, 2008

Language and the Patient Experience: The Follow Up

I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

Wednesday, October 01, 2008

The "Other" Crisis

Like many of you, I’ve spent the past couple weeks scanning news sites and listening to the television and radio, bracing myself for the next business collapse. Like many of you, my stomach churns when I think of the hit we took on Monday when the Dow dropped a staggering amount.

When I first heard about the proposed $700 billion bailout, my reaction was along the lines of, “Where’s the urgency and where’s the money for health care?”

How about you?

Against the backdrop of recent months where, despite paying a lot for health insurance, the bills are piling up while the range of services covered has steadily decreased and the thought of cutting back on tests and medicines to save money is fleeting yet tantalizing, this juxtaposition was—and is—particularly compelling.

While the financial crisis looms large and spans so many industries, livelihoods, retirement plans, and households, we’re already in the midst of what is arguably an even larger crisis, one of healthcare and chronic disease. And, as former Secretary of Health and Human Services Tommy Thompson and Dr. Kenneth Thorpe of the Partnership to Fight Chronic Disease discussed in a press conference call I participated in yesterday, it’s a crisis that threatens billions of taxpayer dollars—not to mention our health and quality of life.

Just as I can relate to the ensuing credit crunch and the aftermath of the market’s volatility because I own a house and a car and have retirement accounts tied up in stocks, I can clearly relate to this crisis. In my own circumstances I’ve seen how much more effective and economical preventative care (chest PT, for example) is, and access to quality health insurance is the most significant financial and lifestyle issue in our household.

A healthy population and healthy workforce equal more productivity and a better economy. Better health and wellness (though I could write an entire post on what exactly “wellness” means) are achieved through prevention and disease education. While this should be obvious and should be reflected in health policy, as most of us 130 million patients with chronic disease know too well, this isn’t often the case.

Just to give some context, consider some of the chronic disease statistics Thompson and Dr. Thorpe mention and ones that appear often in this discussion:

--Treatment of chronic illness accounts for over 75 percent of the more than $2.2 trillion the nation spends annually on health

--Treatment of the seven most common chronic diseases, coupled with productivity losses, cost the U.S. economy more than $1 trillion dollars annually

--Health care costs for people with a chronic condition average $6,032 annually - five times higher than for those without such a condition

And of course, these are just some of the numbers. We can’t forget about the millions who are uninsured, the many, many patients with inadequate health insurance, and the economic, physical, and emotional toll chronic disease takes on caregivers and family members.

But as we’re beginning to see in pockets, wellness and prevention programs do work—they improve health outcomes and disease progression and cut down on consumer and employer spending.

So while we can’t avoid Wall Street woes, we also can’t lose sight of the fact that this is an economic situation that’s been building for decades. One of the most interesting questions posed yesterday in the conference had to do with when we would see a “$700 billion moment” in terms of health care. News flash: millions of people are already living those moments already (and have for a long time), and millions of people can speak to the urgency of the situation.

The good news is that despite their vast differences (more on that later, I promise!), both presidential candidates’ platforms address chronic illness and prevention and wellness. Maybe this election will be the time when all the “billion dollar moments” and the urgency so many of us feel will translate into results…and like this current financial debacle, it will have to happen across party lines.

Switching gears, I want to point out that September’s Pain-Blog Carnival is up at How To Cope With Pain. Check it out, and remember that new contributors are always welcome!
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