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Narrative Matters: On Our Reading List


March 20th, 2015

Welcome to “Narrative Matters: On Our Reading List,” a monthly roundup where we share some of the most compelling health care narratives driving the news and conversation in recent weeks.

End Of A Life

In a moving first-person essay in The New York Times, writer and neurologist Oliver Sacks details his diagnosis of terminal cancer and his adjusted outlook toward his remaining time.

“I shall no longer pay any attention to politics or arguments about global warming,” he writes in “Oliver Sacks on Learning He Has Terminal Cancer.” “These are no longer my business; they belong to the future.”

Sacks’ works include The Man Who Mistook His Wife for a Hat, which described various neurological conditions and introduced the world to Temple Grandin, a woman with autism who is a bestselling author, autism activist, and professor of animal science.

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What Kind Of Advance Care Planning Should CMS Pay For?


March 19th, 2015

Currently, Medicare does not offer a paid benefit for advance care planning (ACP). As a result, health care providers who want to assist Medicare enrollees with ACP do so voluntarily and neither they, nor their institutions, are compensated for their time and efforts. This is not only an unfair expectation on individual practitioners or health institutions, it is also medically and ethically unsound. Fortunately, two recent events have the potential to reshape the landscape of advance care planning in the U.S.

Cultural And Policy Evolution In Advance Care Planning

On September 17, 2014, the Institute of Medicine (IOM) published Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The report is built on two basic premises:

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New Narrative Matters: How Health Care Fails Older Patients, And How It Can Be Done Better


March 13th, 2015

Health Affairs‘ March Narrative Matters essay features a chance meeting between an octogenarian and a geriatrician that shows how the US health system focuses on medical care at the expense of older adults’ well-being. Louise Aronson’s article is freely available to all readers, or you can listen to the podcast.

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Physician Aid In Dying: Whither Legalization After Brittany Maynard?


March 12th, 2015

Editor’s note: This post is part of a series stemming from the Third Annual Health Law Year in P/Review event held at Harvard Law School on Friday, January 30, 2015. The conference brought together leading experts to review major developments in health law over the previous year, and preview what is to come. A full agenda and links to video recordings of the panels are here.

Brittany Maynard’s highly publicized decision to end her life under Oregon’s Death With Dignity law has given a new face to the American right to die movement. It is that of a young, attractive, athletic newlywed, who would not have considered herself as having a stake in the movement until the day she learned a brain tumor was the cause of her severe headaches. She was terminally ill and faced a future of six months of increasing pain, debilitation, and severe seizures before dying.

A video of Maynard’s story produced by the non-profit advocacy organization Compassion and Choices has reached many millions of viewers. Extended coverage of her decision-making process by People Magazine resulted in record numbers of hits to the publication’s website. During her illness, Maynard moved from California to Oregon and on November 1, 2014 took barbiturates to end her life. In her memory, her husband and mother have become prominent activists in the effort to legalize physician aid-in-dying (PAD).

Is all of this likely to advance the PAD movement and, if so, through what legal processes?

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New Health Policy Brief: Right-To-Try Laws


March 10th, 2015

A new policy brief from Health Affairs and the Robert Wood Johnson Foundation (RWJF) looks at so-called Right-to-Try laws. For patients with serious, potentially life-threatening diseases, current federal regulations offer two routes to gain access to experimental drugs not yet approved by the Federal Drug Administration (FDA): participation in a clinical research trial, or, if not possible, applying to the FDA for use of a drug under the expanded access (also known as compassionate use) program.

While the FDA has approved nearly all of these applications, the process is widely thought to be overly cumbersome. Since last year, five states have enacted their own Right-to-Try laws, with the aim of giving critically ill patients the treatments they seek. This health policy brief provides background on the federal regulations of expanded access and the recent involvement by many states.

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Effective Public Engagement To Improve Palliative Care For Serious Illness


March 10th, 2015

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 a recent 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.

Public engagement is necessary to improve care for individuals suffering with serious illness. Fortunately, several drivers of potential change exist for advocacy. In the following blog post, we outline some areas for change and specify advocacy efforts we can undertake to improve the overall face of palliative care.

First, palliative care here is defined as being a type of specialized medical care for people with serious illness. Its goal is to improve quality of life for both person and family. It is provided by a team of doctors, nurses, and other specialists who work with the patient’s other providers to provide an extra layer of support. Although some people think palliative care is only for those at the end of life, it is actually appropriate at any age and at any stage in a serious illness and can be provided together with curative or disease-modifying treatment.

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New On GrantWatch Blog


March 4th, 2015

Health Affairs GrantWatch Blog brings you news and views of what foundations are funding in health policy and health care.

Here are the most recent posts:

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Last Year Was A Wild One For Health Law — What’s On The Docket For 2015?


January 22nd, 2015

Everywhere we look, we see the tremendous impact of new legal developments—whether regulatory or statutory, federal or state—on health and health care. These topics range from insurance to intellectual property to religion to professionalism to civil rights. They remain among the most important questions facing Americans today.

This post is the first in a series that will stem from the Third Annual Health Law Year in P/Review event to be held at Harvard Law School on Friday, January 30, 2015. The conference, which is free and open to the public, brings together leading experts to review major developments in health law over the previous year, and preview what is to come.

The event is sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the New England Journal of Medicine, and co-sponsored by Health Affairs, The Hastings Center, and the Center for Bioethics at Harvard Medical School. Below, we will highlight a few themes that have emerged so far. The conference’s speakers will author a series of posts that follow on more specific topics.

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CMS Spending Report Leads Health Affairs 2014 Top-Ten List


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.

The full top-ten list is below. And check out the 2014 most-read Health Affairs Blog posts and GrantWatch Blog posts.

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The Challenge Of Financing Sustainable Community-Based Palliative Care Programs


December 29th, 2014

Since its publication in September 2014, there has been widespread praise for the Institute of Medicine (IOM) report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. It is a masterful piece of scholarship that summarizes the spectrum of issues facing palliative care.

We hope the report will influence key decision-makers in medicine and various legislatures to promote the many changes outlined in the document, enabling palliative care to further improve the quality of life for those with advanced illness.

Yet, despite the encyclopedic scope of Dying in America, the report did not make suggestions about how to achieve sustainable funding for community-based palliative care. Freestanding programs provide special value to some of the sickest members of the population who struggle with their serious illness while living in the community, outside any facility or hospice program.

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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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Whose Costs Are Saved When Palliative Care Saves Costs?


September 29th, 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 the 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.

As is well-known to most readers of Health Affairs, specialist palliative care is, and has always been, about helping seriously ill patients and families determine what matters most to them, and then helping them achieve their goals. Research demonstrates the beneficial impact of palliative care services on quality of life, survival, family caregiver outcomes, and symptom burden.

As an epiphenomenon or side-effect of the improved quality resulting from these models, multiple studies demonstrate lower intensity and costs of health care. Palliative care can make enormous contributions to health care value because by improving patient- and family-centered outcomes, it leads directly to reduced costs, for both payers and providers.

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IOM Report Calls For Transformation Of Care For The Seriously Ill


September 24th, 2014

The new Institute of Medicine (IOM) report on care near the end of life in the United States was released last week. I had the privilege of serving on the Committee for the last two years, involved both in the writing of the report itself and in coming to consensus on its recommendations.

The name of the report and the charge to the Committee from the IOM was focused on “end of life.” However, the title, “Dying in America,” is something of a misnomer. The report itself focuses extensively on people with serious and chronic illness with indeterminate prognoses, why the current health care system fails so consistently to meet their needs, and what must change to improve the situation.

Hospice is the gold standard of care quality for those that are predictably dying and clearly at the end of life, and we are fortunate as a nation to have such a strong (mostly home) hospice infrastructure, but that’s not where most of the problems lie. The problems lie in the lack of options for people who are either not hospice-eligible (prognosis uncertain or continuing to want and benefit from disease treatment) or are referred to hospice much too late in their disease course to influence their experience and their families’.

The new report builds on the 1998 IOM report “Approaching Death” and goes well beyond the usual nostrums of calling for reimbursement for advance care planning and decrying all the “waste” in health care spending during the last year of life.

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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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Health Affairs Briefing: Advancing Global Health Policy


August 22nd, 2014

Please join us on Monday, September 8, when Health Affairs Editor-in-Chief Alan Weil will host a briefing to discuss our September 2014 thematic issue, “Advancing Global Health Policy.”  In an expansion of last year’s theme, “The ‘Triple Aim’ Goes Global,” we explore how developing and industrialized countries around the world are confronting challenges and learning from each other on three aims: cost, quality, and population health.

A highlight of the event will be a discussion of international health policy—led by Weil—featuring former CMS and FDA administrator and current Brookings Institution Senior Fellow Mark McClellan and Lord Ara Darzi, surgeon, scholar, and former UK Health Minister. Additional panels will look at how countries are transforming chronic care, lowering costs, and redesigning delivery systems.

WHEN: 
Monday, September 8, 2014
9:00 a.m. – 12:30 p.m.

WHERE: 
National Press Club
529 14th Street NW
Washington, DC, 13th Floor

REGISTER NOW!

Follow Live Tweets from the briefing @HA_Events, and join in the conversation with #HA_GlobalHealth.

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Disparities In Access To Palliative Care


July 30th, 2014

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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Family Caregiving And Palliative Care: Closing The Policy Gap


July 2nd, 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.

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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The Latest Health Wonk Review


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.

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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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