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Family Caregiving And Palliative Care: Closing The Policy Gap


July 2nd, 2014

Editor’s note: Carol O’Shaughnessy also coauthored this post. This post is part of 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.

Family caregivers — what would we do without them?  So why can’t we do more for and with them?

Many studies have demonstrated that family caregivers provide a wide range of essential care to people with serious chronic illnesses or disabilities — the same people who can benefit from palliative care applied as an ongoing approach to care, not just a hospital-based intervention.

It is family caregivers who are responsible for much of the complex care at home, including managing pain and other medications, monitoring equipment, and communicating with the palliative care team.  To say that most family caregivers are not prepared to take on this demanding role is an understatement.

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“In Sickness and in Health”: A New Report on Spousal Caregiving


April 28th, 2014

“Typical” and “average” are words intended to draw an immediately recognizable picture of a population, trend, or statistical distribution. But sometimes these words conceal instead of clarify. Based on media reports and product ads, one might conclude that all family caregivers are women in their forties or fifties caring for mothers in their seventies and […]

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Families Under Stress: Reflections On April’s Narrative Matters Essay On Dementia


April 16th, 2014

Editor’s note: This post responds to the April Narrative Matters essay by Gary Epstein-Lubow, a geriatric psychiatrist, which recounts the life-changing stress experienced by relatives who care for loved ones with dementia. Epstein-Lubow’s essay is freely available to all readers, or you can listen to him read it. You can also read an abridged version of the essay published April 15 in the Washington Post.

When my daughters were five and six years old, I took them to visit my grandmother in the Rosa Coplon Home in Buffalo, New York.

“Bubbie,” I said, “These are my little girls. Do you remember when I was this age?”

She looked at me and at them and finally held out her arms to embrace us and said (in Yiddish), “I don’t know who you are, but I know you belong to me.”

That experience so affected my elder daughter that when she was a teenager she undertook a project interviewing older people and creating a radio program from the tapes.

I thought of this moment when I read Gary Epstein-Lubow’s Narrative Matters essay, “A Family Disease: Witnessing Firsthand The Toll That Dementia Takes on Caregivers,” published in the April issue of Health Affairs.

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Getting Transitions In Care Right: Two Agendas For Change


September 3rd, 2013

Big changes in health care make headlines. Except when they slip by unnoticed. A memorandum earlier this year from CMS’s Center for Clinical Standards and Quality/Survey & Certification Group to state survey agency directors fits this category. As if the agency’s title weren’t wordy enough, the subject of the memo, issued on May 17, would hardly excite the average reader, even one familiar with health policy: “Revision to State Operations Manual (SOM), Hospital Appendix A—Interpretive Guidelines for 42 CFR 482.43, Discharge Planning.”

The contents of the 39-page memo, however, are what count. The specificity and comprehensiveness of the guidelines have elevated the standards for discharge planning under the Conditions of Participation in Medicare and Medicaid from a familiar but often undervalued set of activities to a major responsibility that surveyors will review for compliance.

The revised guidelines set out clear expectations for hospitals to take discharge planning seriously by, among other actions, assigning trained professionals to the task, involving patients and families (or “representatives” or “support persons”) at every stage, and ensuring that appropriate training and referrals to community services have been completed. The guidelines also emphasize that hospitals must know the capabilities and capacities of post-discharge facilities and communicate effectively with them. When implemented by hospitals and monitored by state survey agencies, these changes will go a long way toward improving transitions in care for patients and their family caregivers and reducing hospital readmissions. Cost savings should follow.

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Your (Untrained And Scared) Family Member Will Set Up Your IV Now!


November 2nd, 2012

Time travel, both backward and forward, continues to be a favorite theme in popular culture. If we could travel back just 60 years or so, we would see a vastly different health care system, one geared to provide acute care, not chronic care, and one offering what today would be seen as rudimentary treatments. No one in 2012 would expect a surgeon to use techniques from that era or a doctor to prescribe medications long surpassed by more effective drugs. Yet one important area of health care and long-term care services and supports clings to outmoded terms and measures.

Welcome to the hidden world of family caregivers — broadly defined as the spouses, adult children, other family members, partners, friends and neighbors who provide or manage most of the care of the growing number of noninstitutionalized people with chronic illnesses and disabilities. As our recently released AARP Public Policy Institute and United Hospital Fund report (available here and here) puts it:

Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.

These tasks include managing multiple medications, not just pills but injections and infusions; wound care; operating medical equipment like feeding tubes, dialysis machines, and mechanical ventilators; and using electronic monitors and other devices.

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The Year Of The Family Caregiver — In What Country?


April 21st, 2011

President Obama has begun his campaign for re-election in 2012.  Several Republicans have declared their intention to consider the possibility of running.   Meanwhile, implementation of health care reform proceeds slowly, with threats of defunding and legal action scuttling alongside to keep up.  Policy debates about accountable care organizations, medical homes, and other attempts to bring […]

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Medicare Innovation: Whose Priorities, Whose Interests?


July 14th, 2010

Editor’s Note: In addition to Carol Levine (photo and bio above), authors of this post include Eric Coleman, Professor in the Division of Health Care Policy and Research, University of Colorado Denver School of Medicine; and Mary Naylor, Director of the New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing. The opportunity for significant […]

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The Seattle ‘God Committee': A Cautionary Tale


November 30th, 2009

As uncomfortable as it is for many Americans to accept, allocation issues are a permanent feature of our health care system, “reformed” or not.  Who should get the H1N1 flu vaccine first? In a flu pandemic or a biological disaster, who should be put on respirators and who should not?  These hard choices are realities, […]

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