OHSU Study Shows Bright Pink Form Effective In Helping Patients Communicate End-Of-Life Care Wishes

September 02, 1998

(Portland, OR) -- A bright pink form conveying specific information about a dying patient's end-of-life care wishes has been effective in helping Oregonians avoid unwanted treatments, according to a study being published this week in the Journal of the American Geriatrics Society.

The Physician Orders for Life-Sustaining Treatment form was developed by a statewide task force and is distributed by the Center for Ethics in Health Care at Oregon Health Sciences University. The form is a medical order and must be signed by the patient's physician after discussion with the patient and his or her family. It enables patients to state wishes on whether or not to have specific treatments. It was designed to record patients' wishes not about their future health care, but rather to set limits in the form of medical orders in the present. Some frail elderly people do not wish to return to the hospital as long as their comfort can be addressed. The POLST form contains specific orders on whether the patient wishes to be resuscitated, what degree of medical interventions (such as pain medication, suction, CPR or defibrillation) should be used, antibiotic use and feeding procedures. The form is designed to follow the patient across different treatment settings (for example, from home hospice to an emergency room). Nationally, advance directives are often ignored. the OHSU team conducted this study to see if the POLST form would be more effective.

In stark contrast to the national experience, this study showed that among 180 patients who had indicated "Do Not Resuscitate" on their POLST form, not a single patient received CPR, intensive care unit admission or ventilator support. And only 2 percent were hospitalized to extend life. Of the 38 subjects who died during the year of the study, 63 percent had an order for narcotics and only two died in an acute care hospital. "What this study shows is that the POLST form focuses efforts on the patient's comfort, creating a positive plan that serves the patient," said Susan Tolle, M.D., director of the Center for Ethics in Health Care at OHSU and lead author on the study. "Nursing home patients in the study received remarkably high levels of comfort care and low rates of aggressive life-extending treatment."

The POLST form was developed to help correct serious deficiencies in the way patients' wishes are communicated. Several states have developed ways to alert emergency medical personnel to a Do Not Resuscitate order, such as bracelets, wallet cards and advanced registration. But beyond that issue, there has been little effort to develop a system of orders communicating a patient's desire for limits on other life-sustaining treatments and transfer to the hospital. "We all have heard tragic stories about patients whose wishes weren't respected," said Tolle. "Patients who had requested palliative care in a nursing home but after they break their hip end up in a hospital intensive care unit on a ventilator."

Tolle was part of a multidisciplinary task force that drafted, refined and tested the POLST form over a five-year period. "The form was designed to give specific guidance to physicians," said Tolle. "But it also helps patients, families and health care providers discuss these critical end-of-life issues." That discussion appears to take place not only when the POLST form is completed, but throughout a patient's stay in a nursing home -- and it appears to benefit not only the patient but also the family. For example, in 67 percent of cases where a study patient died, an additional family conference was held with nursing home personnel shortly before death. A third of study records documented specific efforts to accommodate families and approximately one-quarter of records specifically mentioned efforts to meet privacy needs, such as private rooms allowing families to be with patients near the end of life.

Tolle said several features appear to add to the effectiveness of the POLST form.

So far 175,000 of the forms have been distributed around the state. Hundreds more have been distributed to interested parties throughout the United States.

But Tolle expressed a strong note of caution. "POLST works in Oregon because we have had a five-year, statewide educational effort and more resources to support those dying at home than most other states," said Tolle. "Nationwide, though, in states that don't have this structure it could backfire. Good patient care requires that the total system be in place. Anyone who looks at the POLST as just a way to limit care -- and cut costs -- is playing an unethical game. You can't let people choose to limit care unless they have other real choices too."

The study followed patients at eight long-term, adult-care facilities in Oregon. The nursing homes in the study routinely ask patients and their families about their wishes regarding CPR and other life-sustaining treatments as part of their admission process. All the study subjects had indicated "Do Not Resuscitate" and "transfer only if comfort measures fail." Tolle points out that the POLST form is meant specifically for terminally ill patients who want medical orders written to set limits in the present. It is different from an advance directive, which allows individuals to describe their wishes about future health concerns.

Other contributors to the article include Virginia P. Tilden, D.NSc., R.N., and Christine A. Nelson, M.S., R.N., of OHSU's School of Nursing and Patrick M. Dunn, M.D., of the Clinical Ethics Program, Legacy Portland Hospitals. The project was supported in part by a grant from the Greenwall Foundation and by gifts from Maribeth Collins and Cherida Collins Smith of the Collins Foundation.

Oregon Health & Science University

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