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Pennsylvania has new blueprint for a better death
Monday, February 05, 2007

Pennsylvania has a new blueprint for how death might become a less painful and uncomfortable experience for its residents.

The Rendell administration today is expected to release a 40-page report called "Improving End-of-Life Experiences for Pennsylvanians," which has been two years in the making. A wide-ranging group of health professionals, social service leaders, consumer advocates and others produced 160 recommendations covering how to expand hospice and palliative care, advance directives, medical training and more aspects related to patients' late-life treatment.

"The current health care system evolved to provide care for acute illnesses, but it is poorly prepared to provide comprehensive, coordinated care for those with a serious chronic illness or at the end of life," the report states. "To maintain their best possible health-related quality of life for as long as possible, seriously ill Pennsylvanians require proactive efforts to achieve a better balance between acute, cure-oriented approaches and supportive palliative care."

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.

Among the broad goals, the task force recommends:

Development and widespread use of a state form accompanying patients among care settings -- such as between nursing homes and hospital emergency rooms -- that makes clear what kind of life-sustaining treatment they want if incapacitated.

New steps to make sure a broad range of health care professionals -- from physicians down to aides -- in all types of settings receive and make use of training in palliative care, which is comfort-based treatment and medication to reduce patients' pain.

New financing and incentive methods that compensate medical professionals for time they spend with patients on alternatives to life-prolonging technology.

A statewide public education program to promote use of living wills, hospice care, palliative services and other end-of-life resources that are considered under-utilized.

Though the report is being issued about a year behind an initial goal -- administration officials said early drafts had to be whittled and revised for easier public understanding -- those involved said the timing is good because it coincides with a new state law covering living wills and powers of attorney that took effect last week. The statute helps clarify procedures for decision-making involving terminally ill patients.

In addition, Mr. Rendell recently announced a package of health care initiatives, known as the Prescription for Pennsylvania, that aims to expand palliative care training by health care providers and use more palliative care specialists in nursing homes.

State officials note that less than 1 percent of health care providers are certified in palliative care and fewer than one in four Pennsylvania hospitals have hospice programs. About half of Pennsylvania's deaths occur in the hospital, even though nine out of 10 people say they want to die at home.

David Barnard, director of the Institute to Enhance Palliative Care at the University of Pittsburgh, said the new end-of-life report reflects a broad approach that will be required. It will be up to patients and families to make changes as much as health professionals and the state.

"If people really do start talking with their families and filling out advance directives, the rest of us in the health system and society had better be ready to respond to the desires and needs of people for a different way to approach end of life," said Dr. Barnard, co-chairman of a subcommittee that wrote the task force report. "The default position has been to go to the intensive care unit and use all the medical technology."

The governor is not expected to attend a news conference today to endorse the report, but Pennsylvania Department of Aging Chief of Staff Ivonne Guitierrez-Bucher said the blueprint serves the purpose he sought.

State officials will study the recommendations and figure out which of the 160 should be addressed first, she said, though she cautioned that implementing them will take years rather than months.

"It gives us a lot to work with, which is only good," she said. "They're not as onerous as they seem, because they're all related to various pieces. They kind of link to one another."

For example, the task force wants professional licensing boards covering nurses, therapists and social workers to make sure that people entering those fields have received end-of-life training before they're certified. Similarly, it wants the regulators who monitor delivery of care by nursing homes and home health services to ensure that patients in those settings can access palliative care as easily as in hospitals.

Among other recommendations of the task force:

State government and the private health care system should collaborate and fund demonstration projects showing how to improve care focused on end-of-life comfort rather than life-extending procedures.

Special attention has to be given to directing palliative and hospice care in a reassuring way to groups that have been wary of it, such as racial minorities and people with disabilities.

The state needs to start collecting data that will enable officials to measure progress in the various areas being targeted.

First published on February 5, 2007 at 12:00 am
Gary Rotstein can be reached at grotstein@post-gazette.com or 412-263-1255.