The Center publishes State Initiatives in End-of-Life Care, a policy series that reaches 25,000 end-of-life coalition leaders, policymakers and healthcare professionals.
The publication advances balanced approaches to pain management policy, consumer protection and professional development. Myra Christopher is executive director of the series.
Links to pdf copies of this series can be found below. For additional hard copies, contact the Center at email@example.com.
Issue 1- Using Qualitative and Quantitative Data to Shape Policy Change
Describes how Oregon leaders have used data and personal stories to create a climate of change, effect changes in medical school curriculum and clinical practice, and policy changes.
Issue 2- Oregon Health Decisions: Lighting the Way to Common Ground
Summarizes Oregon Health Decisions’ efforts to improve (OHD) end-of-life care policy, examines the workings of its rational partnership model, and offers several assessments of its work by citizens and policy makers.
Issue 3- Implementing End-of-Life Treatment Preferences Across Clinical Settings
The Physician Orders for Life-Sustaining Treatment form is widely used in Oregon to insure continuity of care and adherence to advance care planning across settings.
Issue 4- Advances in State Pain Policy and Medical Practice
Because of cultural misperceptions and ignorance about opioids, patients and their families are often reluctant to accept them and physicians are reluctant to prescribe them early and aggressively. The result is widespread under-treatment of pain.
Issue 5- Promising Educational Initiatives for Staff, Regulators and Families
The first of four briefs examining different approaches to long-term care reform.
Issue 6- How Regional Long-Term Care Ethics Committees Improve End-of-Life Care
Although nursing homes and other long-term care facilities are regularly confronted with wrenching bioethical dilemmas, few have the resources to establish real, in-house ethics committees. Regional longterm care ethics committees are one way to fill this gap.
Issue 7- Facts and Controversies about Nursing Home Reimbursement
The proportion of deaths occurring in nursing homes has steadily increased over the past few years. This trend is spurring interest in an agenda to improve the quality of end-of-life care in these facilities.
Issue 8- Developing Quality Indicators for End-of-Life Care in Nursing Homes
One in five Americans died in a nursing home in 1993, and recent data indicate, that in some states, as many as one-third of citizens die in nursing homes.
Issue 9- How End-of-Life Care Can Be a Positive Issue for Policy Leaders
Political leadership exists that has found end-of-life care a positive issue with virtually no political downside, because every single constituent in these leaders’ districts benefits from good end-of-life-care policy.
Issue 10- Preparing Future Nurses and Doctors to Care for the Dying
Access to good end-of-life care depends on the availability of trained health care professionals. While there are a handful of medical and nursing schools that share a commitment to producing future practitioners who are familiar with the basic tenets of palliative care, comprehensive coverage of end-of-life issues in health care curricula remains the exception.
Issue 11- A Policymaker’s Primer on Hospice Care
This Hospice Primer, the first in a two-part series about hospice, is designed to educate policymakers about what hospice is and, optimally, what it can do for dying Americans.
Issue 12- Approaches for Patients from Marginalized Groups
This issue and a sequel on the guardianship system focus on people in several marginalized groups: very elderly Americans with diminished capacity and no family or advanced directives, those with severe and persistent mental illness, adults with developmental disabilities, inmates in prisons and jails, and people isolated by urban poverty.
Issue 13- Guardianship: A Neglected Piece of the Surrogate Decisionmaking Picture
This issue surveys major policy achievements and gaps, summarizes the Wingspan recommendations for change, and offers stories about reformers, guardians, and their wards.
Issue 14- Pain Management- An update
Chronic pain patients continue to have unduly limited access to opioids. Chronic pain—whether malignant or nonmalignant— remains a major public health concern, with more than 50 million American sufferers.
Issue 15-Paying for Care Needed by Children with Life-Limiting Conditions
Seriously ill children live all across America—from inner cities to remote rural areas. Because most medical providers see so few dying children, they have a hard time developing expertise in pediatric end-of-life care. And experience in treating sick and dying adults does not always translate into good treatment for children.
Issue 16- Creating A New Policy Framework for Pediatric Palliative Care
This issue explores the ways Medicaid and private insurance reimbursement policies could be improved to ensure that children with life-limiting conditions get the care they need.
Issue 17- Barriers to Hospice Care and Some Proposed Policy Solutions
This brief explores the major policy barriers to patient access and the financial viability of what is universally recognized as the gold standard for end-of-life care.
Issue 18- Using Statistics to Shape Agendas and Measure Progress
While reformers continue to draw inspiration from their own personal and professional experiences, the use of statistics to shape agendas and measure progress is becoming more
widespread. This publication provides examples of data-driven reform, lists good sources of data on end-of-life care, identifies some of the data gaps that remain, and shares practical advice from data experts across the country.
Issue 19- Championing End-of-Life Care Policy Change
This issue of State Initiatives in End-of-Life Care explores the program’s primary policy accomplishments, as well as the nontraditional activities and processes that enabled the coalitions to engage their publics and to change policy and culture in their communities and states.
Issue 20- Maine’s Legislative Approach to Expanding Hospice Access
A poor and largely rural state, Maine seemed destined to remain at or near rock bottom nationally for hospice utilization—until the spring of 2001 when bold action by the state legislature laid a foundation for change.
Issue 21- Barriers in Medicaid Reimbursement
This report provides an in-depth examination of barriers to Medicaid reimbursement and treatment, offering policy solutions that could help bring more comfort to dying Americans.
Issue 22- Examining New Knowledge and Controversies about Serious Disorders of Consciousness
Helping policymakers prepare for the challenge of increasing numbers of patients and families who face decisions about withdrawing artificial life-support from patients in minimally conscious states or suffering from other severe brain disorders.
Issue 23- New Directions in Policy and Practice
Advance Care Planning, part 3. This brief examines advance care planning as a critical process that too few of us carry out and surveys the history and ethical principles involved in the process. It also includes guidance for caregivers, a survey of planning tools, and tips for state policymakers.
Issue 24- Policies to Address Disparities in End-of-Life Care
Dedicated to the memory of Marion Gray Secundy, this issue explores gaps in care and policy that lead to unequal treatment. People of color, people with disabilities, and people living in poverty or rural areas experience barriers that often prevent them from getting adequate care at the end of life.
Issue 25 - Thirty-Five Leaders Map the Future of Reform
To provide a forward-looking conclusion to the State Initiatives series, we asked 35 recognized and emerging leaders to answer this question – what must be accomplished in the foreseeable future to ensure quality care for most Americans? Their responses indicate the broad challenges that lie ahead.