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Narrative Matters: Shining A Light On Child Health

December 15th, 2014

Last month, a group of writers, clinicians, policy makers and other experts gathered at Airlie House in Warrenton, Virginia, for the 2014 Narrative Matters Symposium. About an hour outside the city, the scenic fall setting—rolling farm land and trees with auburn and gold leaves—was the perfect backdrop to take attendees outside of their normal day-to-day work and introduce them to others who also are deeply passionate about improving the health of vulnerable children.

The focus of this year’s symposium was “Vulnerable Children: Using Stories to Shine a Light on Child Health.” Manuel Pastor, professor of Sociology and American Studies & Ethnicity at the University of Southern California, delivered a keynote address in which he discussed the changing demographics of the United States, which by 2043 is projected to be a “majority minority” nation — driven, not by immigration itself, but by the rising number of children born in this country to immigrants. Economists have noted that inequality in the nation causes slower economic growth, Pastor pointed out, concluding that if we reduce income disparities, we are actually contributing to national prosperity.

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Narrative Matters: Connecting With Community Health Workers

November 19th, 2014

The November issue of Health Affairs features two Narrative Matters essays.

A program connecting community health workers with patients in Boston shows benefits but is shuttered after funds dry up. Heidi L. Behforouz’s article is freely available to all readers, or you can listen to the podcast.

A community health worker and his patient share stories to create an empowering narrative of diabetes and treatment. Samuel Slavin’s article is freely available to all readers, or you can listen to the podcast.

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Narrative Matters: Sensitizing Doctors To Patients With Disabilities

October 23rd, 2014

In the October Health Affairs Narrative Matters essay, a doctor who stutters confronts the stigma against patients—and providers—with disabilities. Leana Wen’s article is freely available to all readers, or you can listen to the podcast.

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Engaging Patients: Interviews With Patients, Providers, And Communities Across The Country

September 25th, 2014

As the Affordable Care Act (ACA) reaches deeper into the daily lives of Americans, one impact is sure to hit home. The ACA encourages patients and providers to become more active partners in making the crucial strategic decisions over improving individual health. Three new videos, produced in partnership with Health Affairs and the Patient Centered Outcomes Research Institute (PCORI), show how people all over the United States are learning that involving patients – teaching them, soliciting their input, and communicating with family-members and other caregivers right from the start – can result in better, more efficient health care outcomes.

There is growing evidence that patients, once engaged, take better care of themselves. They’re more likely to monitor their own health, take their medicines, and communicate more thoroughly with their care providers. They have a better understanding of the treatment strategy. And they are more likely to participate in clinical studies or other research to find better, more efficient treatments.

I was privileged to report on and host these videos on the new era of patient engagement. I interviewed nearly two dozen people across the country – patients, doctors, researchers, care-providers, academics and community activists – all of whom have inspiring stories to tell about the benefits of focusing on patient centered outcomes. Time constraints meant that many of their important points landed on the cutting-room floor during the video editing process. It’s another privilege to be able to offer some of those additional insights in this blog.

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Narrative Matters: When The System Fails The Intertwined Needs Of Caregiver And Patient

September 15th, 2014

In the September Health Affairs Narrative Matters essay, when a family caregiver becomes injured, she learns the difficulties—and costs—of caring for herself and her chronically ill husband at the same time. Suzanne Geffen Mintz’s article is freely available to all readers, or you can listen to the podcast.

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Remembering Jessie Gruman

August 15th, 2014

Jessie Gruman, founding president of the Center for Advancing Health, died on July 14 after a fifth bout with cancer. Jessie was a hero to patients, families, and health care providers for her selfless work to help people better understand their role and responsibilities in supporting their own health.

Jessie was an extraordinary soul and a pioneering activist in the person-centered care movement. She used her personal experience with illness to inspire a life’s work aimed at developing practical resources that support peoples’ engagement with their health care. She improved care and improved lives.

Jessie was first diagnosed with cancer at the age of twenty. She was thrown into a world that spoke in a foreign tongue: “medicalese.” She was expected to self-administer a complex medication regime, which she openly admits she sometimes skipped. Jessie described the hard-working health care professionals who fought to make her better all relying on her, a scared twenty-year-old, to understand what they said and implement their plan. She realized the enormous power of people who are engaged in their own health, while also recognizing the challenges to such engagement.

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Narrative Matters: How Acute Care Training Is Failing Patients With Chronic Disease

August 8th, 2014

In the August Health Affairs Narrative Matters essay, a doctor questions how well acute care medical training serves those with chronic disease while watching the decline of two patients with kidney failure, one healthier and one frail. Dena Rifkin’s article is freely available to all readers, or you can listen to the podcast.

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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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