Bright pink forms began showing up a year ago in the medical records of patients shuttled between UPMC St. Margaret and nearby nursing homes. The forms can mean the difference between life and death, but not in the conventional choice usually given for those.
The 8-by-11 sheets, colored so as to stand out, detail whether patients, as their conditions decline, would want cardiopulmonary resuscitation, feeding tubes, antibiotics, ventilators and other special means to sustain life. A doctor or nurse practitioner fills out the form jointly with the patient.
The forms give doctors, nurses, paramedics and other health professionals across different settings a quick, standardized way to see whether they should refrain from certain life-saving techniques at modern medicine's disposal. It's a way of acknowledging that some terminally ill or otherwise frail individuals prefer dying comfortably rather than fighting it to the last breath. Hospital personnel pursue the latter option, after all, unless they receive instructions otherwise.
"It basically gives the person the ability to make a decision as to what medical treatment to receive, and the dignity of making their care needs known," said Rod Rutkowski, UPMC St. Margaret's manager of social work. "We don't want a situation where a person doesn't want a ventilator or life support, and then find out their preference only after they're already on life support."
"You're going to see more and more facilities incorporating this," he added.
State officials are launching a review, in fact, to determine whether such a system to proactively get late-life patients' wishes into medical records should be standard statewide, as it is in West Virginia, Oregon, Washington and New York.
The Pennsylvania Health Department is setting up a public committee to determine whether all medical facilities should use a similar form to "detail the scope of medical treatment for patients' life-sustaining wishes." Legislation approved in November covering living wills and other end-of-life issues included the mandate that the department consider implementing the standardized forms, taking the advice of doctors, lawyers, hospital officials and others into account through membership on the committee.
Meanwhile, when a public Task Force for Quality at the End of Life released a wide-ranging report for the Rendell administration last week, one of its clearest recommendations was that a form like the one used at UPMC St. Margaret be implemented statewide. The prior legislation recommended that the health department consider adopting the forms, but did not require that it do so.
Such forms go by different names in different states. In West Virginia, they are Physician Orders for Scope of Treatment, or POST orders. In Oregon, they are POLST orders, for Physician Orders for Life-Sustaining Treatment.
"Some have joked they should be called Physician Orders Against Life-Sustaining Treatment," said Dr. Alvin Moss, executive director of the West Virginia Center for End-of-Life Care, "because most of the time people are completing the form because there's one or more life-sustaining treatments they don't want."
As West Virginia's distributor of the forms, Dr. Moss' center issued 26,076 of them to physicians who requested them last year. There's nothing mandatory about obtaining them, but a public education program attempts to convince doctors that they're something that should be completed for all of their patients whose health seems headed inevitably downhill.
"I don't encourage these forms for healthy people," Dr. Moss said. "We encourage health care professionals to use the 'surprise' question, as in, 'Would I be surprised if this patient died in the next year?' If the answer is no, we would suggest a POST form be completed."
The forms do not substitute for other documents that public officials suggest adults fill out, such as living wills and health care powers of attorney, although they're useful in part because so many patients haven't filled out those other advance directives.
Because unexpected health crises can arise, it's recommended that people provide their families or doctors some general idea in a living will of the extent of life-saving treatment they want if brain-damaged. They should also designate someone they trust to make health care decisions for them if incapacitated. The new state law clarified some of the procedures for use of surrogate decision-makers, especially if the patient designated no one.
The POST or POLST forms are to supplement the other advance directives, doing so in a clear, specific, transportable manner, their proponents say. In a common example, a terminally ill nursing home patient might state they're willing to accept intravenous fluid, if needed, but not a feeding tube. Or they might have determined they don't want CPR performed if their heart stops.
The pink form covering such issues in their file at the nursing home is supposed to accompany the patient if an ambulance is summoned to take her to the hospital, so emergency medical technicians don't take any unwanted steps. It is then supposed to be part of the hospital file upon arrival, so emergency room personnel and other staff know of any limits on treatment.
Dr. Moss said researchers in West Virginia, Oregon and Wisconsin, where the forms are used regionally but not statewide, are gathering data on what choices people make most often about life-sustaining treatment. His guess is that, because the forms are filled out by people so late in life, most of them decline CPR, feeding tubes and other measures of intensive care.
Pennsylvania does have a narrower way for people with end-stage illnesses to limit certain treatment -- primarily CPR. By law, the health department contracts with a vendor to sell Do Not Resuscitate order forms, bracelets and necklaces to physicians, who distribute them to patients who want them. Physicians have ordered 15,900 of those since they became available in 2005.
The bracelets and necklaces are effective for people still living on their own, but with conditions that may be irreversibly in decline. If they collapse somewhere, they have some something around their wrists or necks that clearly tells respondents not to revive them.
"For the EMS system that is pretty helpful," said Ken Brody, chief counsel for the Pennsylvania Health Department. "The business of EMTs and paramedics is generally to keep people alive. The only way they would not do that before is if someone in a medical command position said stop providing treatment, and they would not say that before until there was no use in continuing."
Dr. Judith Black, medical director of senior products for Highmark Blue Cross Blue Shield, said the advantage of having a POST/POLST system in Pennsylvania would be to cover many more categories of care than the DNR orders and bracelets.
She has been working through a local group, the Coalition for Quality at End-of-Life, to urge as many institutions as possible to voluntarily use the pink forms while awaiting possible statewide adoption of the system. She said 22 area nursing homes were using them as of late last year, in addition to UPMC St. Margaret, and a similar effort has been conducted among medical institutions in the Williamsport area.
Any implementation of the forms requires a good education campaign, Dr. Black said, to help both health professionals and patients understand the usefulness.
More information on the forms, and a copy of the one used in Oregon, is available at www.polst.org.