Archive for the 'Personal Experience' Category
February 6th, 2015
January 28th, 2015
The frustrating labor and delivery experience shared by physician and ethicist Carla Keirns in her Narrative Matters essay, “Watching The Clock: A Mother’s Hope For A Natural Birth In A Cesarean Culture,” published in the January issue of Health Affairs, was unfortunate. That is not debatable. That her outcome was favorable – a healthy baby ultimately delivered in the way that Keirns had hoped – does not excuse the less-than-ideal coordination, and communication, of care that she received.
Fortunately, Keirns had the tools at her disposal—such as medical training and solid relationships throughout the provider community—to help ensure that she was able to have the birth that she had planned. But few women have those tools. It is time for us to work harder to ensure that the voice of the mother is factored into the birth experience — both before labor and during delivery.Read the rest of this entry »
January 27th, 2015
In October 2014—nearly three years after an auto-pedestrian accident that left me unable to walk—I embarked on a six-day bicycle trip through the Sicilian countryside. An account of the earlier accident and my uneven care experience appeared in the June 2014 issue of Health Affairs (‘Nothing is Broken’: For an Injured Doctor, Quality-Focused Care Misses the Mark), and excerpted in The Washington Post.
Despite major improvements in my gait at the two-year mark of physical therapy, I am still cane-dependent, and my orthopedist noted to me that I would never be able to bike again.
Surely, this was on my mind when I arrived at the hotel in Sicily and was sized up and down by 22 other members of the biking group, many looking like veteran cyclists. They all watched closely as I ambled toward the hotel…with my cane. Their warm welcome belied a willing suspension of disbelief.Read the rest of this entry »
January 13th, 2015
A report on 2012 health spending by analysts at the Centers for Medicare and Medicaid Services Office of the Actuary was the most-read Health Affairs article in 2014. To celebrate the New Year, Health Affairs is making this piece and all the articles on the journal’s 2014 top-ten list freely available to all readers for two weeks.
Health Affairs publishes annual retrospective analyses of National Health Expenditures by the CMS analysts, as well as their health spending projections for the coming decade. In the latest installment in this series — which also made our 2014 top ten — the analysts reported on 2013 health spending and discussed their findings at a Washington DC briefing. The two reports documented continued slow growth in health spending; the 2013 report featured the slowest rate of health spending growth since CMS began tracking NHE in 1960.
Next on the 2014 Health Affairs most-read list was an article on PepsiCo’s workplace wellnesss program. John Caloyeras and coauthors at RAND and PepsiCo found that the diseases management component of the program saved money, but the lifestyle management component did not. This was followed by two Narrative Matters essays by Charlotte Yeh and Diane Meier; another Narrative Matters piece, by Janice Lynn Schuster, rounded out the list at number ten.Read the rest of this entry »
January 9th, 2015
December 24th, 2014
In the December Health Affairs Narrative Matters essay, a member of the Seneca Nation and a Lakota youth call for equitable child welfare for American Indians and Alaska Natives. Terry Cross’ article is freely available to all readers, or you can listen to the podcast.
In addition, Cross spoke about the issue of Native children in foster care at the recent 2014 Narrative Matters Symposium on “Vulnerable Children: Using Stories to Shine a Light on Child Health.”Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
October 23rd, 2014
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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:Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »
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.Read the rest of this entry »