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The Double-Faced Pain Problem: Reflections On July’s Narrative Matters Essay


July 28th, 2014

Reading Janice Lynch Schuster’s tormented account of her persistent pain and her journey through the medical maze of care in the July issue of Health Affairs, I’m reminded of how millions of Americans are living with not one, but two, pain challenges. The first is the epidemic of over-prescription; the second is the condition of endemic under-medication.

In her essay “Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use,” Schuster herself hints at the dual issues when she writes: “pain patients like me often feel trapped between the clinical need to treat and manage pain and the social imperative to restrict access to such drugs and promote public safety.”

People coping with chronic pain confront a double-faced problem: a society simultaneously providing too much relief and too little. Which face of the American pain dilemma any patient will experience depends on where they live, who they are, and what kind of practitioner they encounter in their pursuit of relief. As Schuster writes, the situation is perplexing, maddening, and sometimes arbitrary.

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Empowering Patients As Partners In Health Care


July 24th, 2014

Recently, the National Patient Safety Foundation’s Lucian Leape Institute brought together 40 patient safety experts — health professionals, patients, advocates, and others — to develop recommendations for how best to engage patients and families in improving patient safety. They represented patient advocacy organizations, health systems, professional societies, researchers, and international safety organizations.

During the course of two lengthy roundtable discussions, participants were asked to reflect on an experience in which they or someone close to them had experienced harm at the hands of the health care system and how they responded. Among the stories we heard:

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Narrative Matters: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use


July 17th, 2014

In the July Health Affairs Narrative Matters essay, a woman living with chronic pain tries to manage her condition while maneuvering through the maze of opioid medications. Janice Lynch Schuster’s article is freely available to all readers, or you can listen to the podcast.

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The Latest Health Wonk Review


June 10th, 2014

Joe Paduda offers the latest edition of the Health Wonk Review at Managed Care Matters. Joe is “not taking any time off” and covers the latest in health policy blogging, including a trio of Health Affairs Blog posts.

Joe features HA Blog posts by Bob Berenson and Stu Guterman on provider consolidation and market power in health care; these posts were written in response to a Health Affairs Web First package on the same topic. Joe also includes Amy Berman’s post on being diagnosed with terminal cancer and choosing palliative care, written in response to the May Narrative Matters essay by Diane Meier.

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Narrative Matters Site Gets A New Look


May 28th, 2014

As visitors to the Health Affairs website may have noticed, the Narrative Matters page looks a bit different these days. That’s because we’ve redesigned the site to be more dynamic and user-friendly, making it easier to read or listen to recent essays, or search the Archives for old favorites.

In other new features, the Podcasts tab allows visitors to easily access the rich archive of Narrative Matters essay podcasts, most of them read by the author, including a recording of the moving essay “‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views On Overtreatment,” published in the May issue of Health Affairs, as read by the author, Diane E. Meier.

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The Latest Health Wonk Review


April 28th, 2014

This week’s edition of the Health Wonk Review comes to us from Louise Norris at Colorado Health Insurance Insider. In her “Ways the ACA Could Be Improved” edition, Norris offers an insightful read and mentions the Health Affairs Blog post by Ellen Goodman on her sister’s battle with Alzheimer’s disease and the importance of having a conversation about end-of-life wishes.

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Narrative Matters: Lost In Translation: To Our Chinese Patient, Alzheimer’s Meant ‘Crazy And Catatonic’


April 28th, 2014

In the April Health Affairs Narrative Matters essay, when cultural perceptions get in the way, a Chinese geriatrician and his colleagues find a way to care for a patient newly diagnosed with dementia. Xinqi Dong and E-Shien Chang’s article is freely available to all readers, or you can listen to the podcast.

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It’s Always Too Soon Until It’s Too Late: Advance Care Planning With Alzheimer’s


April 10th, 2014

Editor’s note: This post is published in conjunction with the April issue of Health Affairs, which features a series of articles on Alzheimer’s disease.

I cannot write about Alzheimer’s disease without writing about my sister. For that matter, it is probably best to begin with the building where the word was first said to her. After all, my sister Jane was an architecture critic and buildings mattered to her, as did the urbanscape, and her whole vision of a people-centered city.

The building where she’d been diagnosed with “mild cognitive impairment” was a former military base now recycled into a labyrinth of medical offices, including the department where the people who clocked and studied—but could not curtail—the decline of her memory were lodged with their pencils and papers.

To get to the office, we had to drive into the imposing parking garage, take an elevator to the only floor where there was a bridge to the medical building, cross that bridge, then take a second elevator downstairs to register, get an electronic key, then ride upstairs again and find our way through a mysterious series of halls to the right door and unlock it.

This elaborate rite of passage never failed to strike me as a bizarre test in itself. Who designed this? What memory-impaired patient could remotely navigate this journey? Was this some sort of black humor, a way to triage those with or without the “executive function” to get there? Those with or without a caregiver who could lead her?

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Nine Questions About My New Medical Home


March 17th, 2014

Sometime in the past five years — it’s hard for me to say exactly when — I suddenly found myself living in a new home. I must admit I am still a bit disoriented by how this happened. But it did. People keep telling me that everything will be ok but I am not entirely sure.

For example, in my old home we had occasional family meetings; things are different now. We now have weekly (and monthly) meetings. The many new administrators ask us to complete personality surveys. Once we had to figure out what items we should take from a sinking yacht in the South Pacific (hint: the $100 bill will be useful). Another time we had to decide if we were a “Wow” or a “Thinker.” We are asked to figure out how we can do a better job for them. I guess, like all forms of therapy you don’t get better unless you change.

Despite all these meetings there are a series of things I still don’t understand. I am afraid to raise my hand at the meetings and give the impression I’m a bad sport so I have written my questions down. Please, please don’t think I am a Luddite who wants to go back to the old home. In fact, what I dislike most about the new home is precisely the way — even in its differences — it resembles the old home.

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Care Delivery And Coordination In The Accountable Care Environment


February 19th, 2014

Editor’s Note: This post is the fourth in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.

As we enter the world of accountable care, palliative care programs bring tremendous assets to our health care system. Accountable care organizations (ACOs) seek to improve quality and reduce costs for a defined population of patients, and palliative care offers value on both the quality and cost sides of the equation.

Palliative care improves quality

Patients facing a serious illness value survival, quality of life, and minimization of suffering for themselves and their families. For patients with far-advanced disease, hospice care is the “gold standard” of care in meeting these goals. Palliative care achieves these goals for patients who are living with a serious illness but may not be at the end of life. Many studies demonstrate a panoply of improved outcomes for patients receiving palliative care: improved quality of life, reduced symptoms, enhanced emotional support, improved communication with physicians, earlier and more frequent use of hospice, reductions in family distress, improved survival, and greater satisfaction with care.

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The Hidden Curriculum: Changing The Water In Which We Swim


January 31st, 2014

Editor’s Note: This post is a response to Joshua Liao, Eric Thomas, and Sigall Bell’s essay, “Speaking Up About The Dangers Of The Hidden Curriculum,” published under Narrative Matters in the January issue of Health Affairs.

As the lights in the auditorium go down, just before I flick on my microphone, I remember what media critic Marshall McLuhan once said about culture: We live “in an electric information environment that is quite as imperceptible to us as water is to fish.”

As a leader of my institution’s curriculum redesign effort, I often speak with departments and even the whole faculty about our plans for the new curriculum. These experiences have made me acutely aware of how well McLuhan’s quote applies to what has been called the “hidden curriculum” in medical education. Medical education, and the culture of medicine in which it occurs, influence personal identity and perception so pervasively that it can be a challenge to talk clearly about how to change the hidden curriculum.

Liao and colleagues overcome that challenge in the January issue of Health Affairs, making an eloquent call for better dialogue about how the hidden curriculum can undermine patient safety. They point out, rightly, that, “The difference between what we say we do and what we actually do as doctors and teachers can be stark.” Such verbal disconnects can undermine the culture of patient safety, a dilemma fixed first through awareness and then through the courage to speak up.

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Narrative Matters: Providing Dental Care In Remote Corners Of Alaska


November 21st, 2013

In the November Health Affairs Narrative Matters essay, one of the nation’s few dental therapists explains why his profession could help address dental workforce shortages in the United States. Conan Murat’s article is freely available to all readers, or you can subscribe to iTunes and listen to him read it.

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Inside the Gray Zone: Reflections on Gautham Suresh’s Narrative Matters Essay


October 21st, 2013

Note: This piece was written in collaboration with John. Lantos, director of the Bioethics Center at Children’s Mercy Hospital.

“I just caution you that we don’t know what we don’t know.”

These words came from one of my senior faculty members at Children’s Mercy Hospital in Kansas City, Mo. The context and tone of her warning made me clench my teeth. As a young neonatology fellow, I wanted to think that we did know.

But it turns out, the senior faculty member was right. Her words may have been the most important lesson I’ve learned during my neonatology fellowship. When it comes to the most premature of babies, there is far more uncertainty than certainty. I have learned to recognize this, and believe that it is the key to being a good neonatologist.

In the October Health Affairs Narrative Matters Essay, Dr. Gautham Suresh recounts the tension that he experienced when resuscitating an infant at the borderline of viability. The essay raises the issues of parental decision making, the high rate of premature birth in the United States, and the always touchy issue of resource allocation.

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Narrative Matters: A Doctor Faces Tough Decisions On Infant Resuscitation


October 16th, 2013

In the October Health Affairs Narrative Matters essay, a neonatologist must decide whether to revive a premature baby on the borderline of viability. Gautham Suresh’s article is freely available to all readers; or you can subscribe to iTunes and listen to him read it. Next week on Health Affairs Blog, another neonatologist will react to Dr. Suresh’s thoughts and describe her own experiences grappling with the difficult decisions that too often accompany the treatment of very premature babies.

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Will Health Insurance Exchanges Work?


September 30th, 2013

Tomorrow, the doors will open for consumers to enroll in health insurance exchanges in all fifty states and the District of Columbia. With the opening of exchanges, the burning question on everyone’s mind is this: Will health insurance exchanges work? To help answer this question, we need to have a better understanding of what makes an exchange work and what some of the metrics are that will be used to measure how an exchange is performing.

The establishment of health insurance exchanges is one of the most complex information technology (IT) projects ever initiated by the federal government. (See figure 1 at the end of this post.) This is true in part because insurance exchanges have to integrate disparate data sources at the state and federal levels and share data with each carrier participating on a health exchange. As the former Director of Technology of Avenue H (formally the Utah Health Exchange), I can tell you from first-hand experience that building a health exchange is a very complex process and requires clear lines of communication and collaboration from both state and federal stakeholders.

The primary goals of a health exchange as specified in the Patient Protection and Affordable Care Act (PPACA) are to provide consumers with a sufficient choice of affordable health insurance products while also providing them with intuitive decision support tools. To assist consumers with obtaining affordable coverage, exchanges will provide some consumers with an Advanced Premium Tax Credit (APTC), commonly referred to as a premium subsidy. Premium subsidies are available to consumers whose income level falls between 133 percent and 400 percent of the federal poverty level (FPL) and are available to these consumers to help offset the cost of an insurance plan. However, in order to accomplish this, many complex processes, calculations, and verifications have to take place behind the scenes.

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Against All Odds: What One Family’s Experience Tells Us About Medicaid’s Enduring Role


September 27th, 2013

Medicaid is nearly 50 years old. Is it a relic of a different era that should be repealed and replaced, or does its importance endure?

Ann Yurcek’s moving “Narrative Matters” essay in the September issue of Health Affairs demonstrates Medicaid’s vital role in health care. Re-imagined a quarter century later, her story underscores just how much this vital role endures. Indeed, Becca Yurcek’s very life is emblematic of the degree to which Medicaid goes where other payers fear to tread.

Ann’s Story

The events Ann Yurcek relates began nearly 25 years ago in 1989.

For readers familiar with Medicaid’s role in American life — especially its role in that incredible space in which health and disability policy intersect — Becca’s story is hardly uncommon. It started with young parents of a healthy and growing family, who were struggling to make ends meet even as a new baby was on the way. The father had begun a new job, but as a result of the peculiarities (a polite term under the circumstances) of the pre-reform insurance system, he was forced to pay for COBRA coverage at his old job even as he paid premiums at the new job — the new employer-sponsored health plan refused to cover Ann.

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Doctors And The Bully(ing) Pulpit


August 29th, 2013

For busy and opinionated physicians, online comments are both catharsis and a form of self-expression. After all, doctors are in the thick of it. We see how policies affect our patients. We know how politics affect our profession. While traditional editorials require time, editing, and an editor’s decision to publish the piece, online comments provide an easy and instantaneous way for even the most overworked and harried physicians to vent publicly. Seeing one’s opinion stream smoothly from brain to fingertips to computer screen feels good.

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It is miraculously simple, but it can be problematic. Amid the stresses of patient care in an increasingly complex health care system, the temptation to unleash anger online can be hard to resist. Making sure our voices resonate with equanimity, with professionalism, with decorum, respect, and tolerance takes work.

In some online discussions, the voices have become ugly.

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Narrative Matters: A Safety Net Tale Of Ticking Clocks And Tricky Diagnoses


August 27th, 2013

In a time-crunched clinic, physician Maria Maldonado and her resident battle the clock to uncover a potentially fatal diagnosis. Maldonado tells this story in her August 2013 Health Affairs Narrative Matters essay. The essay is freely available in full to all readers; you can also listen to Maldonado read it by visiting iTunes or the free Narrative Matters archive.

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Narrative Matters, The Next Chapter: ‘As She Lay Dying’


July 3rd, 2013

Editor’s note: With this post Health Affairs Blog launches a new series: “Narrative Matters, The Next Chapter.” Narrative Matters essays often capture part of a larger, ongoing story; in this periodic series of HA Blog posts, Narrative Matters authors will update readers on the “next chapter,” discussing personal, professional, and policy developments that have occurred since – and sometimes as a result of – their “policy narratives” published in Health Affairs. First up: Jonathan Welch, a physician who told the story of his hospitalized mother’s death of an untreated infection in “As She Lay Dying.”

In an earlier Health Affairs Blog post, S. Allan Adelman and Lewis Morris set forth the questions that hospital leaders should ask themselves to prevent the sort of substandard care that Welch’s mother received.

When we fail to form partnerships with patients and families within the health care system, we squander opportunities to improve. I’m a physician, but I learned this devastating lesson from an outside perspective, when my mother died of an untreated systemic infection while admitted to my hometown hospital. I wrote about the experience in the Narrative Matters essay “As She Lay Dying” in the December 2012 issue of Health Affairs. While I was shocked to witness multiple errors in the course of my mother’s care, afterward I was equally surprised at how difficult it was to partner with the hospital where she died to make it a safer place. Since writing “As She Lay Dying,” I’ve continued to work toward bringing patients, families, and the healthcare community together on a path toward improvement.

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Saving Grady: Reflections On Kate Neuhausen’s Narrative Matters Essay


June 10th, 2013

In the past 12 years, several of our nation’s most storied public hospitals have closed, including DC General (2001), New Orleans’s Charity Hospital (2005), and Martin Luther King, Jr. hospital in Los Angeles (2007). When Atlanta’s Grady Memorial Hospital was featured on the front page of The New York Times on Jan 8, 2008, it was widely assumed it would be the next to go. However, at its darkest hour, Grady received help from an unexpected quarter.

In the June issue of Health Affairs, a young physician, Dr. Kate Neuhausen, describes how she and other leaders of a little-known student organization mobilized hundreds of health professions students from around the state of Georgia to join the fight for Grady’s survival. It is difficult to overstate how perilous the hospital’s situation was at the time. Because Grady provides such a disproportionate share of uncompensated care in the state of Georgia, it would have been impossible for metro Atlanta’s hospitals and private health care providers to absorb the sudden loss of more than 900 inpatient beds; the highly specialized trauma, burn and psychiatric services Grady provides; or the displacement of tens of thousands of inpatient days and hundreds of thousands of outpatient visits. The resulting social, medical and financial upheaval would have sent shockwaves throughout the region—the economic engine for the state and a vital financial, commercial and transportation hub for the Southeastern United States.

Fortunately, Atlanta’s business community and philanthropies grasped the gravity of the situation. So did Georgia’s governor, the leaders of Georgia’s General Assembly, the Commissioners of Fulton and DeKalb Counties, the appointed members of the Hospital Authority that ran Grady, the leadership of Emory University and Morehouse School of Medicine (which provides the hospital’s medical staff), Grady’s employees, and its patients. But each group had a different concept of what needed to be done. Urban-rural, partisan and racial politics came into play. Time was running out.

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