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Better communication at the end of life

New form ensures that dying patients' wishes are carried out as medical orders

From the July-August ACP Observer, copyright 2007 by the American College of Physicians.

By Stacey Butterfield

Better communication at the end of lifeAt Oregon Health & Science University Hospital (OHSU), it has been four years since a terminally ill patient who had asked for limited, palliative care was inadvertently resuscitated.

Not long ago, an unwanted resuscitation might have been considered a common and unavoidable occurrence, but now such an error draws the attention and concern of the whole health system, said Susan W. Tolle, FACP, director of the Center for Ethics in Health Care at OHSU.

"I'm old enough to be from the ages when it just happened all the time and we said, 'Well, there's nothing I can do about it. I didn't know.' There's none of that anymore. There's a sense that we should be able to communicate, and we should be able to respect this [the patient's wishes], and it's wrong that we didn't," said Dr. Tolle.

The change in perspective is due, in part at least, to the efforts of Dr. Tolle and other health care leaders to construct a new model for end-of-life treatment. Through years of study and experimentation, they have developed a standardized form called Physician Orders for Life-Sustaining Treatment (POLST) that clearly conveys dying patients' wishes to all health care professionals.

Converting wishes to orders

A POLST is a bright pink form that lists various levels of medical care, ranging from full treatment to comfort measures only. The form, which is signed by a physician (or in some cases, a nurse practitioner or physician's assistant), asks patient preferences about CPR, antibiotics, artificially administered nutrition and general medical interventions.

POLST formThe form is significantly different from a living will or other types of advance directives that everyone is advised to complete, Dr. Tolle said. "A POLST form is not designed for the healthy. It's designed for persons with advanced chronic illness who are not talking theoretically. They're speaking about a condition that they already have."

Another unique aspect of the POLST is that it is an actual medical order, meant to be applied across health care settings, said Alvin H. Moss, FACP, director of the Center for Health Ethics and Law at West Virginia University and a member of the National POLST Paradigm Initiative Task Force.

"The problem with advance directives is that when the patient is picked up by the rescue squad or arrives in the emergency room, advance directives need to be interpreted," said Dr. Moss. In an emergency situation, physicians or emergency medical technicians (EMT) often lack the time to look through a legal document and determine how it applies to the current situation before treating the patient.

"You don't have those problems with the POST [physician orders for scope of treatment, the West Virginia version of the form] or POLST because they are a medical order that is to be immediately followed," Dr. Moss said.

As signed and dated medical orders, POLSTs provide the legal authority for physicians, nurses or EMTs to give or withhold treatment according to the patient's pre-established wishes. Intrinsic to the system is agreement among medical professionals, facilities, and state agencies to honor each other's POLST orders—for example, a participating hospital will follow a POLST signed by a nursing home physician whether or not that physician is credentialed at the hospital.

Standard of care

Nursing home residents and hospice patients are some of the most common users of the forms, although it is equally applicable to anyone with a terminal illness. “We ask doctors to ask themselves, ‘Would I be surprised if this patient died in the next year?’ If the answer is no, then we recommend that the physician have a discussion about end of life treatment preferences and work with the patient to see that a POST form is completed,” said Dr. Moss.

In outpatient practice, oncologists are some of the most frequent users of the forms, but the POLST is useful to any physician with very ill patients, said Dr. Tolle. At a recent family practice convention in Oregon, she asked attendees how many had used the form, and everyone in the room raised a hand.

The discussion and form completion is also often handled by other health care professionals, including nurses, hospital discharge planners or social workers, noted Bud Hammes, PhD, director of medical humanities for the Gunderson Lutheran Medical Foundation and the Wisconsin representative on the National POLST Task Force.

After the form is filled out and then signed by a physician, it stays with the patient at all times. Nursing homes keep the form in the resident’s chart and patients living at home are instructed to stick the POLST on the refrigerator where EMTs can easily find it. Patients can also carry wallet-sized summaries of the forms for emergency reference.

In Oregon, where the POLST program originated and has been most widely adopted, EMTs have been some of the most enthusiastic supporters of the system. “They are sick and tired of breaking the ribs on a 90-year-old woman who weighs 80 pounds. They think it’s wonderful that they don’t have to attempt resuscitation on people they will fail to help and who don’t want CPR,” said Dr. Tolle.

Since 1996, the Oregon Board of Medical Examiners has instructed EMTs to ask about and comply with physician orders for life-sustaining treatment. At that time, the POLST form was in its infancy. A group of medical ethics leaders from across the state had come up with the idea and was testing out versions of the form at various sites. In 2000, with the support of various health care organizations and state agencies, the form was disseminated statewide.

“Patients and families in Oregon responded positively to the opportunity to clarify their treatment wishes," said Dr. Tolle. “It came as a surprise how many people took advantage of the intermediate options on the POLST form,” she added.

About half of form users mark a choice other than comfort measures. "They might say they want a feeding tube, antibiotics, an intermediate level of treatment. DNR does not mean do not treat," Dr. Tolle noted.

Today, every Medicare-certified hospice program in Oregon uses the form and all but seven of the state's nursing homes offer their patients the opportunity to complete POLSTs. Hospitals in Portland encourage physicians to complete a form before discharging them to a nursing home or hospice program.

Trend growing state-by-state

Recently, other states have begun to follow Oregon's lead. At least 15 states have "POLST Paradigms" as the forms are called in recognition of how different formats have been developed to match state laws. In some states, like Oregon, POLST was instituted through medical board regulation while others, such as West Virginia, used state legislation to legalize and mandate use of the forms.

In Wisconsin, a regional POLST program developed out of health care professionals' desire for a better system. State law provided for do-not-resuscitate bracelets, but in addition to only addressing the issue of CPR, the bracelets were little-used. "For the large majority of people out in the community who didn't want resuscitation, having them wear a bracelet wasn't practical and it wasn't acceptable to patients," said Dr. Hammes.

The two main hospital systems of the LaCrosse, Wisc., area—one of which ran the ambulance service—agreed to begin using POLSTs and encouraged nursing homes in the area to do the same.

Because Wisconsin's program is regional instead of statewide, POLST advocates don't have the ability to influence the practices of every health care professionals. But the program appears to be making a difference locally, said Dr. Hammes. A study is currently underway in several states, including Wisconsin, comparing outcomes for patients who have POLST forms to those who do not.

Many regional POLST programs have begun on the initiative of just a few physicians or nursing homes, said Dr. Tolle. Even within a single nursing home, the forms can be used to decide whether to call 911 for a patient.

She and other experts provide legal and logistical advice to start-up POLST programs through their Web site, which describes efforts around the country. "You can go shopping to see what pieces will match for where you are," Dr. Tolle said. The Oregon program also provides copies of, and permission to duplicate, the original pink form, although it is copyrighted to maintain the original content.

The Oregon POLST experts also are continuing to work on perfecting the system. An online database of completed forms is the next proposed project. It would enable EMTs to call in from the field to check on a patient's treatment requests, and avoid the problem of misplaced forms. The technology is ready, but the funding is still needed. "I don't know if there's the political will to do that, but it would solve the last little step," Dr. Tolle said.

Efforts are ongoing to raise awareness of POLSTs among health care professionals as well as politicians and the general public. Widespread, effective education about the program is the key to getting patients to complete the forms and professionals to use them, Dr. Tolle said. "You reach a critical mass and suddenly it is what everyone expects."

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