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Adverse Events In Older Adults: The Need For Better Long-Term Care Financing And Delivery Innovation


November 20th, 2014

Evidence mounts that a major disconnect exists between the services most frail older adults need and what they get. The vast majority of frail older adults (around 75 percent) who face challenges in taking care of themselves live at home. According to new research from Vicki Freedman and Brenda Stillman, published in the most recent issue of The Milbank Quarterly, almost a third of these older adults report having an adverse consequence as a result of not getting the help they need. These consequences are pretty grim – the most frequently reported event being wet clothes associated with an unmet need around toileting.

But the most shocking statistic from this research is that hiring a paid helper appears to do little to protect against these consequences. Among those who hired help, nearly 60 percent reported adverse consequences. No doubt this reflects a higher level of need: paid helpers are brought in when the risk is quite high. But, it also reflects an inadequacy in support — an analogous group living in supportive housing (i.e., residential care or assisted living facilities) reported these events at a much lower rate (36 percent).

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Health Affairs Web First: In 11-Country Survey Of Older Adults, Americans Are Sickest But Have Quickest Access To Specialists


November 20th, 2014

A new survey of the health and care experiences of older adults in eleven different countries, released recently as a Web First by Health Affairs, found that Americans were sicker than their counterparts abroad, with 68 percent of respondents living with two or more chronic conditions and 53 percent taking four or more medications. Also, Americans were most likely to report cost-related expenses for care (19 percent of respondents) than residents in any of the other countries surveyed.

On the other hand, the United States compared favorably in some aspects: For example, 83 percent of US respondents had a treatment plan they could carry out in their daily life, one of the highest rates across the surveyed countries.

A few other key findings:

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Challenges For People With Disabilities Within The Health Care Safety Net


November 18th, 2014

Medicare and Medicaid were passed to serve as safety nets for the country’s most vulnerable populations, a point that has been reemphasized by the expansion of the populations they serve, especially with regards to Medicaid. Yet, even after 50 years, the disabled population continues to be one whose health care needs are not being met. This community is all too frequently left to suffer health disparities due to cultural incompetency, stigma and misunderstanding, and an inability to create policy changes that cover the population as a whole and their acute and long-term needs.

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Risk And Reform Of Long-Term Care


November 14th, 2014

Editor’s note: This post is part of a series of several posts stemming from presentations given at “The Law of Medicare and Medicaid at Fifty,” a conference held at Yale Law School on November 6 and 7.

The 50th Anniversary of Medicare and Medicaid offers an opportunity to reflect on how U.S. social policy has conceived of the problem of long-term care.

Social insurance programs aim to create greater security—typically financial security—for American families (See Note 1). Programs for long-term care, however, have had mixed results. The most recent attempt at reform, which Ted Kennedy ushered through as a part of the Patient Protection and Affordable Care Act (ACA), called the CLASS Act, was actuarially unsound and later repealed. Medicare and especially Medicaid, the two primary government programs to address long-term care needs, are criticized for failing to meet the needs of people with a disability or illness, who need long-term services or supports. These critiques are valid.

Even more troublesome, however, long-term care policy, especially in its most recent evolution toward home-based care, has intensified a second type of insecurity for Americans. This insecurity arises when someone becomes responsible for the long-term care of a loved one. In a longer forthcoming article, I argue that this insecurity—which I call “next-friend risk”—poses a serious threat to Americans and needs to be addressed. (I borrow the phrase next friend from a legal term for a person who in litigation represents someone with a disability who is otherwise unable to represent him or herself. Although not a legal guardian, the next friend protects the interests of an incompetent person.)

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Reforming Medicare: What Does The Public Want?


November 13th, 2014

Is Medicare adequately meeting the needs of seniors, or are there ways that its core attributes could be improved? Numerous elected officials, policymakers, and other thought leaders have offered perspectives on ways to change the program. Few efforts, however, have been directed at understanding how the public—given accurate information, a variety of options, and a valid structure for weighing the pros and cons—would change Medicare’s basic design.

The MedCHAT Project

Recently, the American Enterprise Institute and the Brookings Institution co-hosted a briefing on the results of a California project that did just that. The “MedCHAT” project, sponsored by the nonprofit, nonpartisan Center for Healthcare Decisions, asked 800 residents—the lay public, as well as health care professionals and community leaders—to consider Medicare’s current benefits and decide if those should be changed. Respondents represented the full spectrum of age, race, ethnicity, education, and income level.

Using an interactive, computer-based system, participants were asked to respond as “social decisionmakers;” they were tasked with making Medicare more responsive to the needs of current and future generations without imposing a greater cost burden on the country. The computer-based CHAT (“Choosing All Together”) program uses actuarial estimates to show the relative costs of health care benefits, allowing participants to make trade-offs with an understanding of the fiscal impact each benefit has on the program.

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Social Insurance Is Missing A Piece: Medicare, Medicaid, And Long-term Care


November 6th, 2014

Editor’s note: This is the first of several periodic posts stemming from presentations to be given at “The Law of Medicare and Medicaid at Fifty,” a conference that will be held at Yale Law School on November 6 and 7. The issues covered in this post and in Professor Feder’s presentation at the conference will be more fully treated in Feder J. “The Missing Piece:  Medicare, Medicaid and Long-Term Care,” in Cohen AB, Colby DC, Wailoo KA, Zelizer JE, eds. Medicare and Medicaid at 50: America’s Entitlement Programs in the Age of Affordable Care. New York: Oxford, 2015.

Medicare and Medicaid are partners in providing health insurance protection to older people and people with disabilities. But when it comes to helping the very same people with long-term care—assistance with the basic tasks of daily life (like bathing, eating and toileting)—no such partnership exists.  Instead, there’s a gaping hole in protection that leaves people who need care, along with their families, at risk of catastrophe.

That hole is not an accident.  From Medicare’s inception, long-term care was explicitly excluded from its social insurance benefits, despite the close tie of many long-term care needs to medical conditions.  With some short-lived lapses, Medicare rules have restricted the program’s benefits to avoid financing long-term care, even as it has overpaid long-term care providers for medically-related “post-acute” services. Ironically, Medicare has fueled growth in expenditures on long-term care providers without actually covering long-term care.

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Examining State Prison Health Care Spending: Cost Drivers And Policy Approaches


November 4th, 2014

Health care and corrections have emerged as fiscal pressure points for states in recent years as rapid spending growth in each area has competed for finite revenue. Not surprisingly, health care spending for prison inmates—the intersection of these two spheres—also has risen swiftly.

Yet this trend of rising health care costs for prisoners may have been reversed in many states, according to a new report by the State Health Care Spending Project, a collaboration between The Pew Charitable Trusts and the John D. and Catherine T. MacArthur Foundation. Total correctional health care expenditures and per-inmate spending increased in nearly all states from fiscal years 2007 to 2011, but in most states it began declining after peaking in 2009 and 2010. Nationwide, prison health care spending totaled $7.7 billion in 2011, down from a high of $8.2 billion in 2009, after adjusting for inflation. The downturn in spending stemmed in part from a reduction in state prison populations.

As states work to manage prison health care expenditures, a decrease in spending was a positive development as long as it did not come at the expense of access to good quality care. Yet states continue to face a variety of challenges that threaten to drive costs back up. Chief among these is a steadily aging prison population.

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Turning Family Caregivers Into A Political Force


October 1st, 2014

Suzanne Mintz’s memorable Narrative Matters essay in the September issue of Health Affairs calls for attention to and support for family caregivers, and puts many important policy and practice improvements on the policy table. But the piece stops just a step short of giving voice to the fury that is needed to mobilize change. Why are family caregivers so polite? We ask for the bare essentials and say “please.” We beg for mere recognition and some honesty about the situation. Why are we so polite?

Are we waiting for hospitals, specialty physicians, health systems, pharmaceutical manufacturers, and others who are deeply invested in current patterns of care, thinking they might wake up one morning and start advocating against short-term self-interest? Or set out to learn about supportive services and family caregivers?

Of course, everyone loves family caregivers. Virtually anyone over the age of 50 can share tear-inducing stories of someone’s devotion to a frail elderly parent or a long-term disabled friend or relative. But we, the public, respond to the despair and frustration of family caregivers with the same shrug we give to young mothers whose lives are suddenly governed by feedings and changings. Our response to family caregivers has to change. The challenges are so great, and the level of support so deficient, for so many family caregivers.

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Reconceptualizing Health and Health Care: Why Our Cancer Care Delivery System Is In Crisis


September 23rd, 2014

Cancer Care System in Crisis

Americans fear cancer. In a poll for MetLife, when participants were asked which major disease they feared most, 41 percent said cancer, 31 percent said Alzheimer’s disease, and small percentages of other respondents said other diseases. Not surprisingly, The National Institutes of Health has a budget allocation of $4.9 billion for 2014 to The National Cancer Institute, far more than any other Institute and over 25 percent of the NIH’s total funding to study organ-based diseases ($19.2 billion).

Despite this longstanding commitment to cancer research, the Institute of Medicine (IOM) reported in September 2013 that America’s cancer care delivery system is “in crisis.” The IOM determined that physicians ask for patients’ preferences in medical decisions only 50 percent of the time and that 25 percent of patients report that their clinicians fail to share important information, such as test results or medical history, with other care providers.

Of bankruptcies in the U.S., 33 percent are related to medical concerns, and many people are referring to the astounding cost of cancer therapies as another “toxicity” of the disease. Patients are too often prescribed cancer treatments that can cost double the conventional treatment options but have no evidence-based incremental benefits.

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Disparities In Access To Palliative Care


July 30th, 2014

Editor’s note: Otis Brawley also coauthored this post. This post is part of a periodic Health AffairsBlog 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.

Racial and ethnic disparities in health care have been well documented among minority groups with respect to access to care, receipt of care, and quality of care. As a result of these disparities, minority populations are often diagnosed with late stage illness and have inferior outcomes likely leading to increased suffering.

Little is known, however, about disparities in access to and use of specialty palliative care. Palliative care is medical care aimed at relieving suffering and providing the best possible quality of life for people facing pain, symptoms, and stresses from serious illness. Palliative care is appropriate for patients at any age or illness stage and can be provided along with curative or life-prolonging therapies.

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Payment And Delivery Reform Case Study: Cancer Care


July 3rd, 2014

Editor’s note: In addition to Darshak Sanghavi, Mark McClellan, and Kavita Patel, this post is also authored by Kate Samuels, project manager at Brookings. It is adapted from a forthcoming full-length case study, the second in a series from the Engelberg Center’s Merkin Initiative on Physician Payment Reform and Clinical Leadership designed to support clinician leadership of health care delivery, payment, and financing reform. The case study will be presented during the Merkin Initiative’s “MEDTalk” event on July 9 from 10:30 AM to 12:30 PM EDT, featuring live story-telling and knowledge-sharing from patients, providers, and policymakers.

Oncology practices and hospitals across the nation struggle with providing sustainable, comprehensive, and coordinated cancer care. Clinical leaders with strategies and models to improve the quality and value of health care often don’t know how to navigate the landscape of payment and delivery reform options to sustain their innovations.

We use a case study approach to investigate and tell the story of the New Mexico Cancer Center (NMCC), an independent cancer center that is experimenting with innovative ways to improve patient-centered oncology care. We identify challenges for creating sustainable and supportive payments models, and we share the broader strategic and policy lessons for adopting alternative payment models.

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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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Call For Papers: Care Of Older Adults


June 27th, 2014

Health Affairs encourages submissions from authors on topics surrounding the care of older adults, including new models of care and the management of multiple chronic conditions among this population. We are interested in work that spans the full range of care settings, including primary care and specialty practices, hospitals, nursing homes and other long-term care settings.

In addition to exploring topics that are directly related to the provision of care, we also welcome papers on a broad array of related dimensions that affect care, access, and affordability, such as financing models, coverage, and size and composition of the workforce. We are grateful to The John A. Hartford Foundation for providing support for our ongoing coverage of these topics.

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Palliative Care: A New Direction For Education And Training


May 28th, 2014

Editor’s note: 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.

If the needs of older adults with serious illness are to be met in ways that are different from today, then the education and training of physicians and nurses will need to be different.

The fundamental approach to decision-making for the older adult with serious illness needs to change from the standard approach to the palliative care approach. In the latter, overall goals of care are established for the patient in the context of his or her family. These goals take into account what is known about the illness, what is inevitable versus what is modifiable, the prognosis, and patient and family preferences. Then, plans to achieve these goals are established.

In contrast, the standard approach is to first, identify all of the problems through diagnostic testing and then to solve each of the biological problems. This approach has guided American medicine since the 1970s and assumes that a person’s health is the sum of the component biological parts.

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Narrative Matters, The Next Chapter: Amy Berman Reflects On ‘Living Life In My Own Way’


May 22nd, 2014

Almost four years ago I was diagnosed with terminal cancer. And yet, as devastating as the diagnosis was, I have a great story to share, a success in every sense. I did something so simple yet so rarely done. I chose the road less taken, and it led to better health, better care, and significantly lower cost.

In October 2010 I was diagnosed with inflammatory breast cancer, a rare and incurable cancer. I saw the red spot on my right breast and immediately went to my doctor. Unfortunately, this type of cancer typically spreads before it appears on the skin. In my case it spread to my lower spine before it was ever noticed. I felt fine. I did everything right. But my prognosis was bleak and devastating; only 11-20 percent of people like me survive five years.

In April 2012 I wrote about my treatment decisions in the Narrative Matters section of Health Affairs, in the essay “Living Life in My Own Way—and Dying That Way as Well.”

Most people react to a cancer diagnosis with a familiar knee jerk response. Get the cancer out. Opt for full-bore treatments such as chemotherapy and radiation. When one treatment fails, they search for another. Fight. Fight. Fight.

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Exhibit Of The Month: Effects Of Dementia On Hospitalization


April 29th, 2014

Editor’s note: This post is part of a new “Exhibit of the Month” series. Readers who’d like to highlight other noteworthy exhibits from the same issue are encouraged to make their pitch in the comments section below.

This month’s exhibit, published in the April issue of Health Affairs, looks at the effects of dementia on hospitalization and emergency department use among fee-for-service Medicare beneficiaries from 2000-2008.

These findings are consistent with previous research that looked at rates of hospital and avoidable hospital use among community residents with dementia and those without, according to authors Zhanlian Feng, Laura Coots, Yevgeniya Kaganova, and Joshua Wiener in “Hospital And ED Use Among Medicare Beneficiaries With Dementia Varies By Setting And Proximity To Death.” But, as demonstrated in this month’s exhibit of the month, Feng and coauthors are the first to compare community residents and nursing home residents.

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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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When Less Is More: Issues Of Overuse In Health Care


April 25th, 2014

Editor’s Note: This post is part of an ongoing 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.

About 18 months ago, Daniel Wolfson, president of the American Board of Internal Medicine (ABIM) Foundation began asking audiences of clinicians if any of them had ever seen a patient subjected to unnecessary medical care. As one of the architects of the Choosing Wisely campaign, an initiative of the ABIM Foundation intended to reduce overuse of medical services, Wolfson had a particular interest in the answer to this question. He was surprised to find that in some of his audiences, a majority of clinicians have personal experience with overuse.

Clinicians’ newfound willingness to concede that overuse is a problem comes as good news for people who have long labored to increase awareness of this aspect of medicine in America, including the authors of this blog and many of the readers of Health Affairs.

Overuse is costly, pervasive, and causes harm to patients, yet it has been remarkably difficult to get the medical profession, health care industry, and general public to take note of it, much less take steps to reduce it. Today, however, there are multiple efforts underway that offer hope for real change, including Choosing Wisely, the growth of palliative care, and the Lown Institute’s Right Care Alliance; but until now, the most difficult step has been the first: for patients, payers, physicians and policymakers to acknowledge the scope of the problem.

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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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