In a recent 24-hour period, Dr. Chris Hughes of St. Clair Hospital put three newly arrived, struggling-to-breathe patients on life support, since that's what hospitals are obliged to do unless told otherwise by patients or their designated surrogates.
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Within hours, he learned that none of the three wanted to undergo extreme life-saving measures, and they were all removed from ventilators. They died, and their relatives deemed them better off without painful efforts to prolong their weakened lives, according to Dr. Hughes, who specializes in intensive care.
A report released yesterday by The Hastings Center, a bioethics think tank, said unnecessary and costly medical procedures -- like having patients first on life support, then undoing it -- occur too often in America because the system for end-of-life decision-making is disjointed and inadequate.
The think tank called for new efforts to bring death-related discussions into the open and to involve health care professionals, terminally ill patients and relatives.
It's a cause backed by Dr. Hughes, Gov. Ed Rendell, the Pennsylvania Department of Aging and a cross-section of local health-care providers. They are all linked to a state task force examining procedural, legal and ethical issues affecting dying patients.
The task force grew out of a 2002 national report called "Last Acts" that labeled Pennsylvania less effective than most states in handling end-of-life issues.
Whether in providing people with hospice care and pain management or assuring them they won't be kept alive in a vegetative state if they don't want that, the state was deemed inadequate. The report caught the attention of Mr. Rendell, who appointed a 56-member Task Force for Quality at the End of Life in Pennsylvania. It first met last January and intends to complete a report with recommendations for the governor by Jan. 26.
"There is an enormous gulf between what we know how to do to treat people's symptoms, to support families, to modify home environments that allow people to live with autonomy and dignity for long periods of time, compared with what is actually done around the state," said Dr. David Barnard, director of the University of Pittsburgh Institute to Enhance Palliative Care. He is co-chairman of the task force committee writing the report.
One of the key issues the task force will deal with, and which was also a focus of The Hastings Center report, relates to advance directives -- the living wills and durable powers of attorney by which individuals spell out what life-sustaining measures they want undertaken on their behalf, while also identifying who should make health care decisions if they're incapacitated.
The new report noted such documents have never been widely adopted -- only 20 percent to 30 percent of adults have them -- and that they're not necessarily useful even if everything seems to have been spelled out.
The necessary communication about the patient's wishes frequently doesn't take place among the patient, family members, personal physicians and institutions like hospitals and nursing homes. The written preferences are often unhelpful as new circumstances arise because they're either too vague or overly specific.
"The problems are legion," said the report's concluding chapter. "We rarely foresee in accurate detail the circumstances of our dying."
The Hastings Center researchers recommended that health care providers expand efforts to counsel family members and involve them more actively in discussions with patients about their futures. In fact, the report contended, too much autonomy has been given to the patients themselves, who have a hard time detailing their wishes. Relatives are often clueless about what to do once they're needed.
The report noted several state and regional efforts around the country that have effectively addressed the issue, including an Oregon program known as Physician Orders for Life-Sustaining Treatment, or POLST. A Western Pennsylvania partnership of health and senior citizen providers and advocates has encouraged use of the system, adopted by 16 nursing homes thus far, in the absence of any widespread effective procedures in Pennsylvania.
Using the POLST process, patients and doctors have a discussion of what level of treatment would be welcomed if certain needs arise. Limits like do-not-resuscitate orders are then put into writing on bright-colored paper by the doctor, and the sheet is supposed to accompany patients and be recognized by medical personnel wherever they go: nursing homes, hospitals, ambulances, etc. The living wills used now lack the consistent wording and medical backing that health care professionals prefer to have in making life-or-death decisions.
Dr. Hughes said he expects a recommendation for a POLST-like program in next year's report, as there's less value in institutions adopting such policies individually now. A provision to establish widespread advance directives, under doctors' supervision, was contained in legislation approved in Harrisburg last year but ultimately vetoed by Mr. Rendell because of separate objections to the bill. Advocates are hoping a new version of the bill will pass next year, using the pending state task force report to help educate lawmakers and the public.
