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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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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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Is Bias A Source Of Unmet Needs For Medically Complex Kids?


February 2nd, 2015

A study on the “Inequities In Health Care Needs For Children With Medical Complexity,” published in the December 2014 issue of Health Affairs on children’s health, supports a suspicion I have had for some time. Children with medical complexity face the possibility of unmet health care needs simply because of who they are.

Dennis Kuo and colleagues found that children with medical complexity had higher unmet needs than children without medical complexity. The authors describe medical complexity as “children who require medical services beyond what is typically required by children with special health care needs.”

This inequity holds regardless of race, ethnicity, insurance coverage, and household income in relation to poverty level. In other words, unmet needs remain high even among those who have favorable social determinants of health care. The authors conclude that medical complexity itself may be an independent determinant of health care inequity for children.

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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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Implementing A Care Planning System: How To Fix The Most Pervasive Errors In Health Care


January 2nd, 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.

In the course of a single life time, medical science has made unprecedented strides in managing advanced illness. As good as the United States health care system is, it is nonetheless prone to serious error. In 2000, the Institute of Medicine estimated that as many as 268 patients die each day due to preventable hospital errors.

Although many safety issues are being addressed successfully, a significant safety concern remains. We know that many of the sickest patients suffer needlessly in their final weeks and months of life because they receive treatments that offer little benefit but great burden — treatments that are not aligned with patients’ values and goals. Although the vast majority of health care professionals are well trained and compassionate, they often work in systems organized for productivity — systems that simply do not provide sufficient opportunity for health professionals to get to know a patient and develop relationship-based perspectives. Even when patients’ perspectives become known, few mechanisms exist to document and communicate them across settings of care and over time.

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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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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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Improving Access To High Quality Hospice Care: What Is The Optimal Path?


September 9th, 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.

High quality hospice care is consistent with the country’s stated health care reform goals: hospice is person-centered, improves clinical outcomes such as pain and satisfaction, is provided by a multidisciplinary care team, is coordinated across care settings, reduces unnecessary hospitalizations, and saves health care dollars. Studies have consistently shown that hospice improves quality for patients and families by reducing symptom distress, improving caregiver outcomes, and reducing hospitalizations near the end of life, including emergency department visits and intensive care unit stays and hospital death.

But what about access? Fortunately, hospice care in the United States is growing rapidly and there is much to celebrate in terms of the increase in the number of hospice agencies, the number of patients and families served by hospice, and the breadth of conditions and diagnoses of patients receiving hospice care. In 2011 there were more than 3,500 hospice providers — an increase of 53 percent from 2000 — caring for 1.2 million Medicare beneficiaries.

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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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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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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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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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Good Palliative Care Requires Good Long-Term Care: A Medicare Strategy To Strengthen Both


March 10th, 2014

Editor’s NoteThis post is also coauthored by Robert Berenson, an Institute Fellow at the Urban Institute. 

This post is the fifth 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.

Alongside the challenge of improving insurance coverage for palliative care, caregivers and practitioners face a continuing challenge in mobilizing long-term services and supports (LTSS), that is, personal assistance to those unable to perform basic tasks of daily living.  These services are an essential part of palliative care.  Whatever a patient’s wishes, unless LTSS are available to support patients and caregivers at home, the emergency department and the hospital become the only option when a symptom or caregiver exhaustion crisis occurs.

But identifying, accessing and coordinating long-term care services are not easy.  Further, financing to support these services is beyond the scope of standard insurance. Few people have private long-term care insurance, and Medicare’s coverage of nursing homes and home health is contingent on the need for skilled nursing or therapy care. MedPac reports that in 2011, Medicare-covered nursing home stays averaged only about 27 days and home health aide (personal care) visits averaged only about five per home health user.  Although a recent legal settlement has required CMS to clarify that coverage is not contingent on evidence of patient improvement, the skilled care requirement remains intact.

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Care Delivery And Coordination In The Accountable Care Environment


February 19th, 2014

Editor’s Note: This post is the fourth 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.

As we enter the world of accountable care, palliative care programs bring tremendous assets to our health care system. Accountable care organizations (ACOs) seek to improve quality and reduce costs for a defined population of patients, and palliative care offers value on both the quality and cost sides of the equation.

Palliative care improves quality

Patients facing a serious illness value survival, quality of life, and minimization of suffering for themselves and their families. For patients with far-advanced disease, hospice care is the “gold standard” of care in meeting these goals. Palliative care achieves these goals for patients who are living with a serious illness but may not be at the end of life. Many studies demonstrate a panoply of improved outcomes for patients receiving palliative care: improved quality of life, reduced symptoms, enhanced emotional support, improved communication with physicians, earlier and more frequent use of hospice, reductions in family distress, improved survival, and greater satisfaction with care.

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Measuring Quality of Care for Older Adults With Serious Illness


January 22nd, 2014

Editor’s Note: This post is the third 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. This post describes the Advanced Care model, a delivery system approach that includes palliative care and coordinates services for people with serious chronic illness across hospitals, medical groups, homes, and the community.

In the United States, value is the new health care imperative – improving quality while controlling costs.  We spend nearly twice the rate of comparable nations, yet have poorer health outcomes.  In 2010, President Obama signed the Patient Protection and Affordable Care Act (ACA), mandating a new emphasis on paying for value, not volume.

Our greatest opportunity to enhance value in US health care is to improve quality of care for older adults with serious illness – the group who uses the most health care services. Serious illness, in which patients are unlikely to recover, stabilize, or be cured, is life-altering for patients and family caregivers.  It includes advanced, symptomatic stages of diseases such as congestive heart failure, chronic lung disease, cancer, kidney failure, and dementia. Serious illness may also refer to the cumulative consequences of multiple conditions progressing over time, causing functional decline or frailty.

We’ve made important progress in understanding high quality care for this population of patients.  Researchers have asked patients with serious illness and their families how they define high quality care.  Especially in serious illness, patients want control over treatment through shared decision-making.   Even when there is no cure, most patients still want health care that helps them live longer – but only if they can also get help with function, physical comfort, and attention to family, emotional and spiritual needs.

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Advanced Care Model Honors Dignity, Integrates Health System For Seriously Ill People And Loved Ones


December 23rd, 2013

Editor’s Note: This post is the second 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. This post describes the Advanced Care model, a delivery system approach that includes palliative care and coordinates services for people with serious chronic illness across hospitals, medical groups, homes, and the community.

Like other initiatives to reform American health care, the movement to improve care for patients with advanced illness does not suffer from a lack of new ideas. The real barriers to improvement lie in replicating innovative models that have already addressed the problem and found scalable and sustainable solutions. Fortunately, promising initiatives are now prepared to transform care on a national scale. These developments are timely because reform is badly needed.

Our fragmented approach to advanced illness exacts a terrible toll from our sickest and most vulnerable citizens and their families. It also places a growing burden on our health care system. Hospital treatment of advanced illness absorbs a large fraction of the Medicare budget. Over one quarter of all Medicare expenditures pay for care in the last year of life, a proportion that has not changed in 35 years.  CMS research shows that about 30 percent of this final-year spending is concentrated in the month prior to death, and 80 percent of Medicare dollars spent during that final month go toward hospital treatment.

People suffering from advanced illness – multiple chronic conditions with declining function and poor prospects for full recovery – often fall through the cracks between current programs and providers.  Like patients under disease management, people with advanced illness have multiple chronic conditions, but their decline in health and function is more pronounced, faster, and in many cases, irreversible. In short, a person with advanced illness has entered the “gray zone” between treatable and terminal illness.

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Integrating Palliative Care Into Nursing Homes: Challenges And Opportunities


December 2nd, 2013

Editor’s note: The following post, on palliative care in the long term setting, is authored by Mary Ersek and David Stevenson (photos and linked bios above) and by Justine Sefcik, MS, RN, a fourth year doctoral student at the University of Pennsylvania School of Nursing, a 2012-2014 National Hartford Centers of Gerontological Nursing Excellence Patricia G. Archbold Scholar, and a previous Jonas Hartford Scholar. The post is the first in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series will feature 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.

As we begin the series, we offer the following short introduction from Diane Meier and Amy Kelley: “Because of its focus on quality of care, the Affordable Care Act is poised to expand access to palliative care services for the sickest, most vulnerable, and therefore most costly, 5 percent of patients, who drive about 50 percent of all healthcare spending. Palliative care is specialized medical care for people with serious illnesses that focuses on providing relief from symptoms, pain, and stress, whatever the diagnosis or stage of illness. Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival. Because patient and family needs are met, crises are prevented, thereby directly reducing need for emergency department and hospital use and their associated costs.”

Around a quarter of older Americans die in nursing homes each year, including nearly 70 percent of individuals with advanced dementia. For these individuals, the delivery of coordinated, person-centered services at the end of life is a central component in the array of supportive and therapeutic services they receive. Although growing numbers of nursing home residents are accessing Medicare’s hospice benefit before death, substantial barriers continue to impede the meaningful integration of palliative and hospice care into the long-term services and supports that most nursing home residents receive. These barriers range from the orientation of nursing homes — and the regulatory standards that govern them — toward rehabilitative care, to the fragmented approach of Medicare and Medicaid in financing acute, post-acute, palliative, and supportive services.

The challenge of improving end-of-life care in nursing homes is broad, and no single policy reform or intervention alone will be sufficient. Nonetheless, there are several mechanisms by which policymakers and practitioners could improve end-of-life care in nursing homes. Importantly, these mechanisms align broadly with the guiding principles for long-term services and supports (LTSS) outlined by the US Commission on Long-Term Care in their final report to Congress. Specifically, the Commission concluded that there is an urgent need to enhance the quality of LTSS and improve the coordination among the providers that deliver these services. While emphasizing the need to finance and deliver services in a fiscally sustainable way, the Commission called for improving “the integration of LTSS with health care services in a person- and family-centered approach.”

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