“Improving End of Life Experiences for Pennsylvanians”
On February 5, 2007, the Pennsylvania Department of Aging delivered to Governor Edward G. Rendell, and made public through a Press Release found here, "a series of policy recommendations that are designed to improve the quality of life for seriously ill and dying Pennsylvanians, as well as their families and caregivers."
The Quality at the End of Life Report, entitled "Improving End of Life Experiences for Pennsylvanians" (40 pages, in PDF format), was transmitted by PA Department of Aging Secretary Nora Dowd Eisenhower from the Task Force for Quality at the End of Life. That group is described as "a diverse panel of experts assembled at the Governor’s direction".
Eisenhower said the task force outlined a series of challenges that exist in Pennsylvania today. Most Pennsylvania residents do not have a living will, which guides family members and doctors on the level of life-sustaining treatment that individuals wish to receive. Nearly half of all deaths in Pennsylvania occur in hospitals, despite the fact that nine-out-of-10 people say they would prefer to die at home. Less than one percent of health care providers are certified in palliative care. Only about two-in-10 Pennsylvania hospitals report having hospice programs.The Task Force also provided "Supporting Documents" for the Report, posted by the Department, including:
“When we consider that 27 percent of Medicare expenditures pay for health care during the last year of life, it would seem prudent to invest in systems of care that makes efficient use of our limited resources, while maintaining patient preference for care,” Eisenhower said.
• Adopting and adhering to quality standards. Health care facilities around the state should adopt and adhere to the national standards set forth by the National Consensus Project and the National Quality Forum.
• Designing and implementing demonstration projects. Public/private partnerships should test new and innovative delivery and reimbursement systems to improve quality and continuity of care across health care delivery settings including home-based care.
• Documenting treatment preferences. In accordance with Act 169, the state should explore ways to adopt a tool to document people’s treatment preferences consistently across care settings.
• Improving education through licensing/accrediting/regulatory bodies and professional organizations. The core elements and principles of palliative care should be incorporated into health professions curricula and enforced by appropriate regulatory, accrediting, and professional licensing bodies.
• Engaging underserved communities. To meet the palliative care needs of underserved populations, such as ethnic minorities, individuals with disabilities, and children, members and advocates of these communities should be actively engaged in needs assessment and program design activities.
• Raising public awareness. A statewide public awareness and education campaign should be undertaken to improve Pennsylvanians’ access to palliative care and end-of-life services, to help them become more informed about palliative care, and to encourage planning around end-of-life issues.
Eisenhower said the report also offers a solid framework that will help policymakers and legislators consider a broad range of options to improve end of life care and family supports.
“Enhancing the quality of life, including end of life experiences, for all Pennsylvanians is a challenge of increasing urgency,” Eisenhower said. “By involving everyone with a stake in this process – medical professionals, educators, government policymakers, advocates, and the public – we can address these most basic conditions of human life with intelligence and compassion.”
• Dr. David Barnard, director & professor of medicine, Institute to Enhance Palliative Care, University of Pittsburgh
• Steve Suroviec, executive director, Arc of Pennsylvania, Harrisburg
• Darlene Sampson, executive director, Pennsylvania Council on Aging
• Dene Liott, consumer advocate, Pottstown
• Nancy Zionts, Vice President of Program & Planning, Jewish health Care Foundation, Pittsburgh
The Press Release was the subject of a news article published in the Pittsburgh Post-Gazette on February 5, 2007, entitled "Pennsylvania has new blueprint for a better death", by Gary Rotstein.
He noted that the Report was developed over two years by a wide-ranging group of health professionals, social service leaders, consumer advocates and others who "produced 160 recommendations covering how to expand hospice and palliative care, advance directives, medical training and more aspects related to patients' late-life treatment."
About 128,000 Pennsylvanians died in 2005, with at least 100,000 of them over 65 and 41,000 over 85. The report assumes that for many, death was more impersonal and painful than it needed to be.
A 2002 national report card on death-related issues rapped Pennsylvania, as it did many states, for lagging in key areas such as guiding late-life patients into hospice services instead of intensive care units. The low grades from the Last Act group prompted Gov. Ed Rendell to create the Task Force for Quality at the End of Life to recommend solutions.
The panel had no shortage of possible improvements to suggest. The daunting task for state officials and health-related groups, in fact, might be sorting out which of the 160 recommendations to tackle, and when and how to do so.