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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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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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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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Health Affairs Entry Point: The Science Behind Alzheimer’s Disease


April 30th, 2014

The Department of Health and Human Services (HHS) recently released the 2014 update on its National Plan to Address Alzheimer’s Disease, including strategies for identifying and expanding research in the prevention of Alzheimer’s. In the April issue of Health Affairs, senior editor Jonathan Bor reports on the science behind the disease and the implications for future funded research.

In “The Search For Effective Alzheimer’s Therapies: A Work in Progress,” Bor illustrates that in the thirty years since research began on the disease, no one has discovered a cure or effective ways to chronically manage the condition. Regardless, HHS intends to find a suitable treatment by 2025, as outlined in its National Plan, reports Bor.

Even though research suggests a protein is to blame for altering the brain’s make-up and therefore contributing to the onset of Alzheimer’s, there’s disagreement on which protein bears the responsibility. Furthermore, the results of clinical trials aimed at combating the negative effect of protein plaque buildup, have been surprisingly disappointing, says Bor.

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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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(Only) Evidence-Based After-Hospital Care: Where Should the Savings Go?


April 24th, 2014

Medicare 2014 has achieved the main goal of Medicare 1965: Access to medical treatment for older Americans. That, and advances in medicine, public health, and technology, have led to long lives and better health. Nevertheless, the system designed for the priorities of 1965 does not match the needs of 2014, and beyond.

What very old and frail people need — whether to ease the fears of a 90 year old woman living alone in a second-floor walk-up apartment or the burdens on the family of an 85- year old slowly drifting into the haze of dementia — goes without Medicare coverage. Addressing those needs and correcting course to change habits of overtreatment and cost inflation for older people living with multiple chronic conditions is a historic opportunity — to build Medicare 2030.

With what we know today, we could actually right-size the medical services, generate the savings, and re-design the delivery system to ensure reliability and supportive services. And more: we could pay for all or most of that vastly improved system with the savings we achieve from optimizing medical care.

But will the nation pursue that reinvestment? Will policymakers insist upon it? Will the public demand it? To do so would mean major changes in how we operate health care.

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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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Companies Must Approach Advanced Health Events As A Business Issue


April 16th, 2014

Editor’s note: In addition to J. Brent Pawlecki, this post is also coauthored by Dan Morhaim. For more on this topic, see the April issue of Health Affairs, which features a series of articles on Alzheimer’s disease.

In the corporate world, every company has a chief financial officer charged with ensuring that the organization meets all tax and accounting mandates and to report the data to officers of the company, shareholders, employees and the general public.

Yet, while organizations expend great effort addressing these matters, many miss another opportunity to protect their employees’ well-being by failing to talk about end-of-life care.  Most companies consider advanced illness to be a private matter. But in fact, this hands-off approach most assuredly affects the financial health of any organization – and the emotional well-being of its workforce.

Beyond its direct impact on individuals’ health and well-being, advanced illness can take a heavy economic toll, including its effects on productivity, health and benefits costs, employee potential and engagement.  According to the MetLife Mature Market Institute study, the total estimated cost to employers for all full-time employed caregivers is a staggering $33.6 billion.  The average cost per employee for caregiving responsibilities ranges from $2,100 to $2,400.

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It’s Always Too Soon Until It’s Too Late: Advance Care Planning With Alzheimer’s


April 10th, 2014

Editor’s note: This post is published in conjunction with the April issue of Health Affairs, which features a series of articles on Alzheimer’s disease.

I cannot write about Alzheimer’s disease without writing about my sister. For that matter, it is probably best to begin with the building where the word was first said to her. After all, my sister Jane was an architecture critic and buildings mattered to her, as did the urbanscape, and her whole vision of a people-centered city.

The building where she’d been diagnosed with “mild cognitive impairment” was a former military base now recycled into a labyrinth of medical offices, including the department where the people who clocked and studied—but could not curtail—the decline of her memory were lodged with their pencils and papers.

To get to the office, we had to drive into the imposing parking garage, take an elevator to the only floor where there was a bridge to the medical building, cross that bridge, then take a second elevator downstairs to register, get an electronic key, then ride upstairs again and find our way through a mysterious series of halls to the right door and unlock it.

This elaborate rite of passage never failed to strike me as a bizarre test in itself. Who designed this? What memory-impaired patient could remotely navigate this journey? Was this some sort of black humor, a way to triage those with or without the “executive function” to get there? Those with or without a caregiver who could lead her?

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What’s Past Is Prologue: Making The Case For PET Beta-Amyloid Imaging Coverage


April 9th, 2014

Editor’s note: This post is published in conjunction with the April issue of Health Affairs, which features a series of articles on Alzheimer’s disease.

In September of 2013, CMS issued its final decision memo that concluded positron emission tomography- amyloid beta (PET Aβ) imaging is “not reasonable or necessary”, finding “insufficient evidence” that use of this diagnostic tool would improve health outcomes for patients with dementia or neurodegenerative disease. As such, PET Aβ imaging to help diagnose Alzheimer’s disease (AD) is not a covered service for Medicare beneficiaries except for those enrolled in CMS-approved clinical trials.

CMS’ final decision underscores the emerging new paradigm for coverage decision-making, requiring innovators not only to demonstrate to FDA’s satisfaction that their products are effective, but also to prove to CMS and other payors that their use will improve clinical outcomes. This paradigm will increase confidence in the value and health benefit of new technologies, although it will make the path to coverage more difficult and uncertain for diagnostic developers.

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New Health Affairs: Implications Of Alzheimer’s And The State Of Research


April 7th, 2014

Health Affairs’ April issue addresses the litany of public and personal ramifications of Alzheimer’s disease—the most expensive condition in the United States both in terms of real costs and the immeasurable toll on loved ones. Articles examine best practices and models of care; a global view of the disease; the effects on caregivers; and what may lie ahead for a disproportionately underfunded research community.

Unnecessary hospital and emergency department (ED) visits are particularly difficult on people with Alzheimer’s—and costly to the health care system—but they experience them more often than their counterparts without dementia. Zhanlian Feng of RTI International and colleagues examined Medicare claims data linked to the Health and Retirement Study to determine hospital and ED use among older people with and without dementia across community and institutional settings. They found that in the community older people with dementia were more likely to have a hospitalization or ED visit than those without dementia, and that both groups had a marked increase in health care usage near the end of life.

Specifically, they found significant differences in hospitalizations and ED visits among community-dwelling residents, with 26.7 percent of dementia patients versus 18.7 percent of non-dementia residents experiencing hospitalization, and 34.5 percent versus 25.4 percent experiencing an ED visit. Differences were less pronounced among nursing home residents and tended to even out among all groups in the last year of life. The researchers suggest that policy makers consider promoting the use of alternative end-of-life options such as hospice care and providing supportive services and advance care planning to Medicare beneficiaries that can help reduce avoidable hospital-based care.

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Health Affairs Briefing Reminder: Long Reach Of Alzheimer’s Disease


April 4th, 2014

Despite decades of effort, finding breakthrough treatments or a cure for Alzheimer’s has eluded researchers. In the April 2014 issue of Health AffairsThe Long Reach Of Alzheimer’s Disease, we explore the many subjects raised by the disease: the optimal care patients receive and the testing of new models, international comparisons of how the disease is treated, families’ end-of-life dilemmas, a new public-private research collaboration designed to produce improved treatments, and others.

Please join us on Wednesday, April 9, at W Hotel in Washington, DC, for a Health Affairs briefing where we will unveil the issue.  We are delighted to welcome Dr. Richard Hodes, director of the National Institute on Aging at the National Institutes of Health to deliver the Keynote. Read the full briefing agenda.

WHEN:
Wednesday, April 9, 2014
8:30 a.m. – 12:30 p.m.

WHERE:
W Hotel Washington
515 15th Street NW, Washington, DC (Metro Center)
Great Room, Lower Level

 REGISTER ONLINE

Follow live Tweets from the briefing @HA_Events, and join in the conversation with the hashtag #HA_Alzheimers.

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The Manifest Destinies Of Managed Care And Palliative Care


April 2nd, 2014

Editor’s Note: This post is also coauthored by Karol DiBello and is the sixth in 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.

Two unremitting forces are shaping changes in the U.S. health care system: (1) the graying of America or “silver tsunami,” in which 10,000 individuals are now turning age 65 each day and (2) the cost trends associated with caring for seniors and those with multiple chronic and often life-limiting conditions. Health care experts have identified palliative care and managed care as essential ways to address the special needs of an aging population and for providing care that can lower the rate of national health expenditures.

The complex set of clinical demands of this growing wave of Medicare members includes multimorbidity, frailty as well as functional and cognitive decline.  To effectively and cost-efficiently manage the needs of this population, Managed Care Organizations (MCOs) as well as other risk assuming entities must address the quality and cost of the most expensive segment of this group of seniors.

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Health Affairs Briefing: Long Reach Of Alzheimer’s Disease


March 26th, 2014

Despite decades of effort, finding breakthrough treatments or a cure for Alzheimer’s has eluded researchers. In the April 2014 issue of Health Affairs, The Long Reach Of Alzheimer’s Disease, we explore the many subjects raised by the disease: the optimal care patients receive and the testing of new models, international comparisons of how the disease is treated, families’ end-of-life dilemmas, a new public-private research collaboration designed to produce improved treatments, and others.

Please join us on Wednesday, April 9, at W Hotel in Washington, DC, for a Health Affairs briefing where we will unveil the issue. We are delighted to welcome Dr. Richard Hodes, director of the National Institute on Aging at the National Institutes of Health to deliver the Keynote.

WHEN:
Wednesday, April 9, 2014
8:30 a.m. – 12:30 p.m.

WHERE:
W Hotel Washington
515 15th Street NW, Washington, DC (Metro Center)
Great Room, Lower Level

REGISTER ONLINE

Follow live Tweets from the briefing @HA_Events, and join in the conversation with the hashtag #HA_Alzheimers.

Read the rest of this entry »

Ethical Dilemmas In Prison And Jail Health Care


March 10th, 2014

Editor’s note: This post is published in conjunction with the March issue of Health Affairs, which features a cluster of articles on jails and health.

Prison and jail health care, despite occasional pockets of inspiration, provided by programs affiliated with academic institutions, is an arena of endless ethical conflict in which health care providers must negotiate relentlessly with prison officials to provide necessary and decent care.  The “right to health care” articulated by the Supreme Court pre-ordained these ongoing tensions.  The court reasoned that to place persons in prison or jail, where they could not secure their own care, and then to fail to provide that care, could result in precisely the pain and suffering prohibited by the Eighth Amendment to the Constitution.

Good reasoning was followed by a deeply flawed articulation of the “right” that defines the medical care entitlement as care provided to inmates without “deliberate indifference to their serious medical needs.” By forging a standard which was, and remains, unique in medicine and health care delivery — designed to avoid intruding on state malpractice litigation regarding adequacy of practice and standards of care — the court guaranteed that dispute would surround delivery.  That first framing, which did not establish a right to “standard of care” or to care delivered according to a “community standard,” set the stage for endless ethical and legal conflict.

The Eighth Amendment’s deliberate indifference standard, forbidding cruel and unusual punishment, presents a relatively demanding standard for proving liabil­ity.  The Eighth Amendment, as interpreted by the federal courts, does not render prison officials or staff liable in federal cases for malpractice or accidents, nor does it resolve inter-professional disputes — or patient-professional disputes — about the best choice of treatment. It does require, however, that sufficient resources be made available to implement three basic rights: the right to access to care, the right to care that is ordered, and the right to a professional medical judgment.

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