Next Step in Care: Family Caregivers & Health Care Professionals Working Together



Reporters wishing to speak with someone about Next Step in Care should e-mail Catherine Arnst,

The following chronological list includes news items about the Next Step in Care program and about transitions in care, as well as other selected pieces about family caregiving. It is intended to be informative, but not exhaustive. Featured in many of the pieces, Carol Levine, director of the Families and Health Care Project at United Hospital Fund, oversees the Next Step in Care program.

Demystifying the Language of Healthcare and Social Services,” by Carol Levine, is the lead article in a series in the September 2016 issue of Aging Today, a publication of the American Society on Aging. The article discusses health literacy from the perspective of patients and families, who are often expected to understand terminology that even professionals can’t define consistently.

On a recent edition of Caregiver's Circle,  a WebTalkRadio podcast on caregiving, Carol Levine and host Stephanie Erickson discuss the language of health care in an episode entitled "How to Make Sense of the Ever-Confusion Healthcare Terminology." 

The cover story of Generations: Journal of the American Society on Aging was the article “Family Caregiving: Looking to the Future,” which was co-written by Carol Levine, director of the Families and Health Care Project, and Lynn Friss Feinberg of AARP. (Winter 2015-2016)

Carol Levine, director of the Families and Health Care Project, was quoted in a Forbes article on why the presidential candidates are not talking about long-term care, noting that there’s not enough grassroots pressure because, “While you’re a caregiver, it’s hard enough to be an advocate for the person you’re caring for and maybe yourself.” (January 29, 2016)


Carol Levine is quoted extensively for a For the Record article about HIPAA, explaining, among other things, the law’s intended purpose and how it is often misinterpreted in practice. (November 2015)

Med City News publishes a commentary written by Carol Levine about palliative care—what it is, why it’s hard to understand, and how related communication between patients and their family caregivers and health care professionals can be improved. (October 30, 2015)

A New York Times article about senior-oriented technology referred readers to a new Next Step in Care guide—a new one about electronic organizers, monitors, sensors, and apps. (October 23, 2015)

Carol Levine writes about transitions to palliative care for a blog posting as part of Emmi’s annual health literacy month series. (October 6, 2015)

MD magazine publishes an article focused on the observations of Carol Levine about family caregiving today. (September 8, 2015)

For an article in Healthcare Call Center Times, Carol Levine emphasizes the importance of making sure patients are told that they may be getting one or more calls from care coordinators, so they aren't blindsided when multiple calls come in. (September 2015)

In a New York Times article on the "misuse or abuse" of the HIPAA law, the Fund's guide "HIPAA: Questions and Answers for Family Caregivers" is referenced, and Carol Levine observes that the law has become "an all-purpose excuse for things people don’t want to talk about." (July 17, 2015)

Offering practical tips, Next Step in Care's A Family Caregiver’s Guide to Care Coordination is featured in a New York Times story on the multiple care coordinators who may be involved in a single patient’s care yet have little coordination among themselves. (April 13, 2015)

In a U.S. News & World Report article about overprotective adult children of seniors, Carol Levine discusses the “tension” between “an older adult’s desire for independence” and the adult child’s “broader vision” emphasizing safety and risk aversion. (February 26, 2015)

In an AlzLive feature providing a range of supports, Carol Levine recommends looking for respite facilities that have a memory care unit, if needed, and making sure staff is skilled in the appropriate care. (January 2015)


In a segment on NBC's "Today" show, Carol Levine highlights the critical role family plays in long-term care. (December 10, 2014)

Carol Levine co-authors a commentary for VentureBeat that offers three ways entrepreneurs can help in the development of technologies for family caregivers. (October 24, 2014)

Health Affairs publishes an article about the special challenges facing family members caring for people with cognitive and behavioral health conditions—based on a report issued jointly by the United Hospital Fund and AARP Public Policy Institute. (October 23, 2014)

The journal CareManagement, publishes the article "Family Caregivers and Case Managers Working Together to Coordinate Care," written by Carol Levine. (August/September 2014)

For Health Affairs “GrantWatch Blog,” Carol Levine and co-author Carol O’Shaughnessy propose actions that should be considered by payers, providers, caregiver organizations, and the research community to improve support for family caregivers providing palliative care. (July 2, 2014)

Forbes reports on the publication of a new tool for health care providers, focused on family caregivers, which is now part of the Project RED (Re-Engineered Discharge) toolkit. (June 4, 2014)

For Health Affairs “GrantWatch Blog,” Carol Levine writes a commentary discussing the report Family Caregivers Providing Complex Chronic Care to Their Spouses, which was published jointly by United Hospital Fund and AARP Public Policy Institute. (April 28, 2014)

Carol Levine is interviewed on WCNY radio's "Capitol Pressroom" about the UHF/AARP report Family Caregivers Providing Complex Chronic Care to Their Spouses. (April 17, 2014)

Living in the Land of Limbo—an anthology of fiction and poetry about family caregiving compiled and edited by Carol Levine—is very favorably reviewed in the “Science Times” section of The New York Times. (March 31, 2014)

For an Associated Press story about a volunteer caregiver coach program—an article picked up by media outlets nationally—Carol Levine is quoted, noting that such programs require strong supervision to ensure that boundaries between professional staff and volunteers are observed. (March 30, 2014)

Carol Levine is quoted in a New York Times “Your Money Adviser” article about the difference between being admitted to a hospital, for which Medicare Part A covers patients with a one-time deductible, and being under observations, for which, “Each charge is separate, and it adds up.” (March 18, 2014)

A blog entry posted by AARP on Medicare’s rule clarification about rehab coverage identifies two Next Step in Care guides—Home Care: A Family Caregiver’s Guide and Planning for Inpatient Rehab Services—for their up-to-date information about the policy. (January 23, 2014)


In an article on an Alliance for Health Reform event focused on what it means to be "admitted" to the hospital, Marketplace quotes Carol Levine, an event speaker, discussing the case of a woman who spent two nights in a hospital room but was never admitted. (December 6, 2013)

A blog summarizes findings from a report published jointly by the United Hospital Fund and AARP Public Policy Institute that shows the intensity of caregiving responsibilities varies little between family caregivers who are employed and those who are not. (November 20, 2013)

In a New York Times' "New Old Age" blog about the federal rule intended to clarify the difference between inpatient stays and observation status in hospitals, Carol Levine is quoted, noting that there's unanimity of dislike for the new rule. (October 29, 2013)

An AARP blog by Dr. Barry J. Jacobs focuses on the Next Step in Care family caregiver guide to doctor visits, providing concrete examples of the kinds of problems the guide aims to address. (October 15, 2013)

McKnight's Long-Term Care News publishes a commentary by Carol Levine on a new federal rule intended to clarify the difference between inpatient stay and observation status in hospitals, and the new rule's impact on nursing homes. (September 23, 2013)

Health Affairs Blog posts a commentary by Carol Levine, in which she discusses the importance of getting transitions between health care settings right, highlighting the United Hospital Fund's "Action Agenda" that outlines ten recommendations for change. (September 3, 2013)

The American Society on Aging's Aging Today publishes Carol Levine's interview of Leon Rodriguez, the director of the Office for Civil Rights (the governmental body that oversees the enforcement of the Health Insurance Portability and Accountability Act, or HIPAA), about misinterpretations of the HIPAA law and their impact on patient care. (August 26, 2013)

The Advocate Tribune publishes advice from Carol Levine on how to be prepared to leave the hospital and avoid a readmission. (June 30, 2013)

The United Hospital Fund issues a ten-step action agenda to improve transitions in care by involving family caregivers in more thoughtful and effective ways. The agenda outlines specific recommendations designed to lay the foundation for health care professionals and administrators to work more effectively with family caregivers, make family caregivers part of the care team, and align financing and accreditation policies. The agenda also calls for actions by payers, regulators, accreditation organizations, educators and training organizations, and patients and family caregivers themselves in support of provider changes. (May 14, 2013)

The report Engaging Family Caregivers as Partners in Transitions, which highlights a three-year Fund initiative—Transitions in Care–Quality Improvement Collaborative, or TC-QuIC—involving 45 health care provider teams in the New York area, who worked to engage and support family caregivers as a core strategy for improving patient transitions from one care setting to another is published. More than 200 team members from the participating providers—hospitals, home care agencies, nursing home rehab programs, and hospices—developed and tested changes that went beyond a sole focus on the patient to look at family caregiver strengths, needs, and limitations in the transition process. The report details what participants did, what they learned in the process, and the impact of their efforts. A summary report is also available. (May 14, 2013)

Written by Carol Levine, the article "Understanding HIPAA: What It Protects and What It Permits" is published in Care Management Journal, examining the Health Information Portability and Accountability Act, or HIPAA, and discussing how the law is frequently misapplied. (February/March 2013)

Bioethics Forum publishes a Carol Levine-penned article—"Goldilocks and the Three Hospice Patients"—which notes that hospice care is not the right type of care for patients admitted too early or too late. (February 19, 2013)

Generation, the journal of the American Society on Aging, publishes an article, "Transitions in Care: Are They Person- and Family-Centered?" co-written by Carol Levine and Lynn Feinberg, of AARP. (Winter 2012-2013)


AARP publishes a series of monthly essays by Carol Levine. (June-October 2012):
"Can I Get Paid as a Caregiver?"
"My Father Won't Take His Meds"
"Hiring Someone to Help With Home Care"
"My Mother Doesn't Like Her Nursing Home"
"I'm a Caregiver, but Feel Like a Nurse!"

Among those writing articles about the landmark report Home Alone: Family Caregivers Providing Complex Chronic Care, based on a national survey of family caregivers conducted by the United Hospital Fund and the AARP Public Policy Institute, are:
Washington Post (October 2, 2012)
New York Times (October 9, 2012)
Forbes, article 1 and article 2 (October 5 and 12)
Huffington Post (October 9, 2012)

An essay by Carol Levine titled “How HIPAA Misunderstandings Impede Transitional Care” is published by Hospitals & Health Networks Daily. (May 24, 2012)

Carol Levine wrote an article, published in Readmissions News, about how family caregivers can play an important role in medication reconciliation, which can help prevent avoidable hospital readmission, among other benefits. (May 2012)

Carol Levine interviewed renowned palliative care physician and author Dr. Ira Byock in Aging Today about how end of life decisions are not just about medicine, but about people and how they want to live. (March/April 2012)

For the blog “Vitamin W,” Carol Levine pens an essay noting that overly rosy or pessimistic views can get in the way of “honest discussions, careful planning, and follow-up” involving family caregivers. (February 21, 2012)


The U.S. Administration on Aging's Eldercare Locator and Next Step in Care release a consumer guide to facilitate family discussions about potential hospital visits and planning ahead for a smooth transition from the hospital to the home. (December 21, 2011)

The Family Caregivers Alliance features a guest-blogger a day throughout November 2011, spotlighting different points of view on family caregiving. The November 16 blog is written by Carol Levine. (November 16, 2011)

American Journal of Nursing publishes an article written by Carol Levine—along with a video and podcast featuring Carol—about hospital nurses' assessments of family caregiver needs. (October 2011)

The cover story of Aging Today is an article by Carol Levine— “Emergency! Yes? No.”— that reviews the benefits and downsides of urgent care centers for elderly people. (September/October 2011)

An AARP Bulletin article about how to avoid hospital readmissions quotes Carol Levine about the importance of “fine-tuning” medication lists. (August 26, 2011)

Carol Levine's mini op-ed on clarifying “medically necessary” as “medically beneficial” is published in the New York Times' “Room for Debate.” (June 1, 2011)

Health Affairs publishes an essay by Carol Levine that looks at the role family caregiving is playing as an issue in Canada’s national elections. (April 21, 2011)

In response to a new state law requiring end-of-life care discussions for patients whose life expectancy is less than six months, Carol Levine is interviewed on WNYC radio. (February 9, 2011.)

Carol Levine is quoted In a Wall Street Journal article about the costs of end-of-life care: “Whatever you think health-care costs are going to be toward the end of life, you’ve probably underestimated.” (January 29, 2011)


Bioethics Forum publishes an essay by Carol Levine on the proposed federal regulations banning discrimination in allowing visitors access to patients in hospitals and Emergency Departments. Comments to the proposals from advocacy groups suggest there is room for improvement. (October 4, 2010)

In her Huffington Post blog, Andrea Chalupa explores family caregiver stress as a factor in the recent JetBlue flight attendant meltdown. The blog features an essay on the topic by Carol Levine. (August 19, 2010)

A column in upstate New York’s Post-Journal about health care-related websites prominently features the Next Step in Care, calling it a “wonderful” resource. (August 2, 2010)

The Health Affairs Blog publishes an essay—co-written by Carol Levine, Eric Coleman of the University of Colorado Denver School of Medicine, and Mary Naylor of the University of Pennsylvania School of Nursing—that makes a strong case that "patient-centered care and coordination should be foundational, not optional." (July 14, 2010)

Carol Levine is interviewed on PRX radio’s “The Recovery Room”  about new rules on hospital visitation. (June 25, 2010)

A New York Times article focuses on hospital discharge planning offers guidance on how to pave the way for smoother transitions, including mentions of the Next Step in Care website for assistance with medication management and with creating your own discharge plan. (June 18, 2010)

Bioethics Forum publishes an essay written by Carol Levine that puts into context President Obama's new directive to issue rules for hospitals that establish rights for non-relative patient visitors and surrogate decision-makers. The essay also identifies two related areas of concern. (April 19, 2010)

In the first of a two-part interview conducted by the Alzheimer's Association, Carol Levine discusses the status of family caregiving today, the impact of cognitive impairment on caregiving, and the Next Step in Care Campaign and the new TC-QuIC collaborative project. In the second part, she explains, among other things, the importance of self-identifying as a family caregiver. (Spring and Summer 2010)

An essay written by Carol Levine titled "Taking the First Step in Your Own Care" is published on the new National Parkinson Foundation website. The essay—the website's first blog on caregiving—offers self-care tips to help family caregivers, especially those new to caregiving, in their daily lives. (March 18, 2010)

A blog titled “Opening the Door to Partnerships with Family Caregivers,” by Carol Levine, is published on the Collaboration for Home Care Advances in Management and Practice (CHAMP) website. The website also includes several Next Step in Care guides in its "Resources" section. (February 17, 2010)

The federal Agency for Healthcare Research and Quality (AHRQ) features the Next Step in Care website as a “Quality Tool” in an issue of Innovations Exchange focused on care coordination. (February 3, 2010)

Aging Well, a magazine for health professionals, publishes an article, “Monitoring Care Transitions—Make Sure the Next Caregiver Knows the Patient’s Needs,” coauthored by Carol Levine and Jennifer Rutberg, senior project manager for the Families and Health Care Project. (Winter 2010)

The peer-reviewed journal Health Affairs features a United Hospital Fund staff-written article titled “Bridging Troubled Waters: Family Caregivers, Transitions, and Long-Term Care,” which calls for greater integration of family caregivers into transitional care. The full article is available courtesy of the Fund through a link on its website until July 8, 2010, after which it will be available only through subscription to Health Affairs. (January 2010)


In a New America Media article about efforts in California to make patients' discharges from hospital to home safer, Carol Levine is quoted: "Successful programs for assuring a smooth transition from hospital to home must involve the patient's family caregivers." (December 21, 2009)

In this podcast, Helen Osborne, a health literacy expert and creator of the website Health Literacy Out Loud, interviews Carol Levine, director of the Families and Health Care Project, about how the Next Step in Care guides were developed.  Ms. Osborne was a consultant on Next Step in Care.  (September 22, 2009).

In response to a USA Today article about the increasing number of discharged patients who are returning to the Emergency Department, Carol Levine penned a letter to the editor underscoring the critical role family caregivers can play in reducing unnecessary readmissions if they can be trained more effectively. (September 11-13,2009)

In a guest commentary on the New America Media website, Carol Levine observes that long-term care and the essential role of family caregivers are striking omissions from current discussions of health reform.  She writes, “As long as family caregiving is described and measured as ‘informal’ domestic chores, the traditional dismissive view of women’s work, it will not be appropriately valued.”  (August 13, 2009)

The Family Caregiver Alliance, a community-based nonprofit organization that addresses the needs of family caregivers, has issued a new fact sheet on hospital discharge planning. The fact sheet covers the basics of a discharge plan, why it is important, and the family caregiver's role in the process. It includes questions about  discharges to home, follow-up care, and a caregiver's self-assessment, adapted from Next Step in Care,  as well as additional references.

PainPathways, a magazine for acute, chronic, and cancer pain management, provides information and resources to patients and family caregivers. The summer issue features Carol Levine's caregiving journey, which led to the creation of United Hospital Fund's Families and Health Care Project and the Next step in Care campaign.

A New York Times column by Maggie Jones summarizes advice from experts, including Ariella Peist of the Fund's Families and Health Care Project, about planning for hospital discharges. Ms. Jones concludes that Next Step in Care is "one of the best" websites that offers resources about discharge planning. (May 13, 2009)

A front-page New York Times article by Pam Belluck, "In Turnabout, Children Take Caregiver Role,"  looks at America's child caregivers, focusing on several living in Florida and quoting Carol Levine about opportunities and challenges facing these children. (February 23, 2009)

A New York Times column by Jane Gross focuses on the launch of the Next Step in Care website and concludes, "I suspect many caregivers will find the new Web site extraordinarily useful." (January 15, 2009)

A Wall Street Journal column by Melinda Beck offering advice for family caregivers quotes Carol Levine and identifies the Next Step in Care website as a resource. (January 13, 2009)

United Hospital Fund issues a press release announcing the launch of the Next Step in Care website. (January 13, 2009)


Warning that the troubled economy will hit family caregivers hard, an essay written by Carol Levine is published in Albany’s Times-Union. (December 5, 2008)

From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns includes a chapter, “Family Caregiving,” written by Carol Levine. The chapter is one of 36 in the book, which is available online in its entirely. (December 4, 2008)

Carol Levine is interviewed on WAQY-FM’s “Bax & O’Brien Show” about the growing presence of men as family caregivers. (December 3, 2008) [Note: The interview runs approximately 15 minutes.] interviews Carol Levine: “What Policymakers Can Do for Caregivers.” (December 3, 2008)

The New York Times publishes its article “More Men Take the Lead Role in Caring for Elderly Parents.” (November 29, 2008)

Next Step in Care materials are included in the Upstate New York Transition Care Collaborative. (November 10, 2008)

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