Health Affairs Narrative Matters

An abortion care provider shares stories from the front line and urges physicians to defend abortion care access within their communities. Read by author Rachel Jensen.If you enjoy this essay, order the Health Affairs February 2023 issue.

Failing to protect people at risk for genetic disease from discrimination may have a silencing effect and erode trust in the patient-provider relationship. Read by author Susanna Smith. This article is a reworked excerpt from an unpublished book manuscript. If you enjoy this essay, order the Health Affairs March 2023 issue.

Older Americans’ experiences of the COVID-19 pandemic, including social isolation and loneliness, generosity, and resilience, must be studied and addressed. Read by authors Louise Aronson and Ashwin Kotwal.If you enjoy this essay, order the Health Affairs December 2022 issue.

Integrating family caregivers into the health care team is particularly important for patients with intellectual disabilities. Read by author Duke University's Courtney Van Houtven.If you enjoy this essay, order the Health Affairs theme issue on disability and health.

When a patient dies from a medical error, there often is no recourse for the family. Read by author Chandra Keller.If you enjoy this essay, order the September 2022 Health Affairs issue.

Post–intensive care syndrome affects many patients discharged from the acute care setting. Read by author Joanna Bayes.If you enjoy this essay, order the August 2022 Health Affairs issue.

During the COVID-19 pandemic, a narrow view of patients’ and families’ preferences has led to the unjust application of policies meant to accommodate dying patients and their families. Read by author Nora Osman Segar from Yale New Haven Hospital and Yale Medical School.If you enjoy this essay, order the June 2022 Health Affairs issue.

A physician seeks respite from the injustice of US care delivery but encounters familiar signals of system failure abroad. Read by author Jason Prior.If you enjoy this essay, order the May 2022 Health Affairs issue.

A Washington insider discusses lessons learned from communicating about the HIV/AIDS pandemic and current failures to talk effectively about COVID-19. Read by author Richard Sorian from 340B Health.If you enjoy this essay, order the March 2022 Health Affairs issue.

Shalon Irving’s 2017 death brought national attention to maternal mortality among Black women in the US. This essay remembers her life and legacy. Read by Wanda Irving, chair of the board of Dr. Shalon’s Maternal Action Project.If you enjoy this essay, order the February 2022 Health Affairs Racism and Health theme issue.

A mother whose son was stillborn at thirty-six weeks is working to import stillbirth prevention policies from abroad. Read by author Marny Smith, assistant director of Graduate Career Services at the Austin W. Marxe School of Public and International Affairs at Baruch College.If you enjoy this essay, order the January 2022 Health Affairs issue.

A genetic counselor uses her own resources to identify the root cause of her mother’s changing personality. Read by author Shivani Nazareth, certified genetic counselor and product manager at Invitae, and a visiting lecturer at the Icahn School of Medicine at Mount Sinai.  When Nazareth’s mother became ill, symptoms pointed to dementia but potentially something more, and she suggested genetic testing to find the root cause of her mother’s illness. The fields of genomics and precision medicine are advancing rapidly, and many older adults are interested in genetic testing to help guide medical diagnosis or treatments when possible. Yet genetic counselors are not recognized as Medicare providers and cannot bill for their services under the program. Proposed legislation could change this. If you enjoy this essay, order the December 2021 Health Affairs issue.

A health care leader shares her story of living with major depression and calls for better treatments. Read by author Nora Super, senior director of the Milken Institute Center for the Future of Aging and the executive director of the Milken Institute Alliance to Improve Dementia Care.“I decided to share my story because I think so many of us who live with depression live in the shadows,” Super says. “We’re afraid to tell our stories because of the tremendous stigma associated with depression and afraid something might happen to our career or our personal lives if others around us know that.” If you enjoy this essay, order the November 2021 Health Affairs issue.

A psychiatry professor’s recovery from perinatal depression drives her research to facilitate practice and policy change. Read by author Kara Zivin, a research career scientist at the Veterans Affairs Ann Arbor Healthcare System, and a senior health researcher at Mathematica. Order the October Perinatal Mental Health Theme Issue.

After recovering from acute COVID-19 infection, a physician is stricken with the debilitating symptoms of long COVID. Read by author Maria Victoria Bovo, a pediatric gastroenterologist at the Hospital Germans Trias i Pujol, in Badalona, Spain.Order the September issue of Health Affairs.

Después de recuperarse de una infección aguda por COVID-19, un médico sufre los síntomas debilitantes del COVID prolongado. Leído por la autora María Victoria Bovo, gastroenteróloga pediátrica del Hospital Germans Trias i Pujol, en Badalona, España.Solicite la edición de septiembre de Health Affairs.

Two families’ stories—a separation at the border and an assault in a migrant shelter—show the horrific dimensions of US migration policy. Read by co-author Alfonso Mercado from the University of Texas Rio Grande Valley.Order your copy of the July 2021 issue of Health Affairs.

Childbirth can be an extremely stressful time in any period. Imagine delivering a baby during a global pandemic, just hours after testing positive for COVID-19 despite taking public health precautions.In this episode of the Narrative Matters podcast, Sara Edmond talks about testing positive for COVID-19 shortly before the birth of her daughter, and facing suspicion and stigma from her providers as a result. Edmond, a clinical psychologist at the Veterans Affairs Connecticut Healthcare System, and an associate research scientist in the Department of Psychiatry at Yale School of Medicine, talks about why it’s so important not to “blame” COVID-19 patients for their diagnosis and instead support them.Following an interview, Edmond reads her essay “As A Mother With COVID-19, I Faced Stigma And Shame.”

Hospice care is meant to optimize quality of life and minimize sources of distress at the end of life. In theory, enrollees are entitled to an unlimited number of days of hospice care, though they have to be recertified after 6 months. But in practice, some patients end up discharged alive rather than re-enrolled.In this episode of the Narrative Matters podcast, Health Affairs’ Jessica Bylander talks to Krista Lyn Harrison, an assistant professor of geriatrics and health policy at the University of California San Francisco. In this month’s essay, Harrison writes about her stepfather’s experience with the hospice care system at the end of his life, and how the model ultimately failed their family and how it fails other patients who die more slowly than expected. After being discharged alive from hospice, Harrison’s stepfather’s health soon declined again and he died nearly eight months after his initial hospice admission.  Harrison, a former hospice administrator, says she has the utmost respect for her hospice clinical colleagues, but that the hospice system is not quite keeping up with what’s best for patients and families. Hospice, or its alternative, should better support different disease trajectories and functional needs for patients who are dying, she says.Following the interview, Harrison reads her essay “The Hidden Curriculum Of Hospice: Die Fast, Not Slow.”This podcast is part of Health Affairs' Age-Friendly Health series, with support The John A. Hartford Foundation.Related Links: The Hidden Curriculum Of Hospice: Die Fast, Not Slow (Health Affairs) 2020 Edition: Hospice Facts and Figures (National Hospice and Palliative Care Organization)  A Positive Association Between Hospice Profit Margin And The Rate At Which Patients Are Discharged Before Death (Health Affairs)

Charity care is health care that is provided for free or at a reduced cost to eligible patients, with no expectation that the patient will pay. Under the Affordable Care Act, nonprofit hospitals are required to provide charity care to eligible patients, or risk losing their tax-exempt status. But data show large variation in how much charity care hospitals actually provide.  In this episode of the Narrative Matters podcast, Health Affairs’ Jessica Bylander talks to David Velasquez, a student of medicine, public policy, and business at Harvard University. In this month’s Narrative Matters essay, Velasquez writes about navigating the unclear system of charity care after his father’s costly hospital stay for a heart attack. Velasquez says he wishes that low-income patients knew they have a right to ask hospitals to provide them with information about charity care. Ultimately, he hopes more patients gain access to health insurance coverage through actions of the Biden Administration, making the need for charity care less pressing. Following the interview, Velasquez reads his essay, “Charity Care Needs To Be Better Than This.”Related Links:Charity Care Needs To Be Better Than This (Health Affairs)Analysis Suggests Government And Nonprofit Hospitals’ Charity Care Is Not Aligned With Their Favorable Tax Treatment (Health Affairs)Patients Eligible For Charity Care Instead Get Big Bills (Kaiser Health News)