Oregon's Terminally Ill Patients More Likely to Have End-of-life Choices Respected, Study Finds

04/19/99    Portland, Ore.

Research cites reasons for Oregon's low in-hospital death rates.

Terminally ill patients in Oregon are more likely than patients elsewhere to have their end-of-life wishes respected, and family survivors report a high degree of satisfaction with the care of their loved ones, according to new research published in the April 20 edition of the Annals of Internal Medicine.

Oregon's rate of deaths inside the hospital is the lowest in the nation. In 1996 more than two-thirds of deaths in Oregon occurred outside of hospitals. Roughly one-third of Oregonians died at home and another third died in a nursing home.

The Annals study explored what determines location of death and evaluated families' views of the end-of-life care provided to their deceased relatives. Researchers from Oregon Health Sciences University concluded that a high percentage of terminally ill patients had written advance directives, that these directives often helped avoid the use of life-prolonging hospital care and that in most cases, the wishes expressed in these directives were respected.

"Patients are making their wishes clear," said Susan Tolle, M.D., professor of medicine and director of the OHSU's Center for Ethics in Health Care. "They are saying ahead of time that they don't want to die in a hospital, dependent on life support."

The OHSU research covers two separate studies. The first evaluated the effectiveness of the Physician Orders for Life Sustaining Treatment (POLST) form. The bight-pink form records a dying patient's decision to have or limit life-sustaining treatment; it is signed by the patient's physician and meant to follow the patient from a home or nursing home through transport by ambulance to the hospital. The second study, Barriers to Improving Care of the Dying, covers a wide range of issues from the frequency of advance planning to whether terminally ill patients died in the location they preferred.

The POLST study, a statewide survey of nursing home residents, found nine out of ten had a Do Not Resuscitate order in place, a significantly higher percentage than in other states. The study also evaluated whether the POLST form helped patients receive the amount of medical treatment they wanted at the end of life. Of 91 persons from the sample group who died during the year, only 5 died in the hospital. The other 86 died in nursing homes in accordance with their wishes. Patients with POLST forms who later died received very high levels of comfort care at the end of life.

The Barriers study involved interviews with family members of the 475 Oregon adults who died over a 14-month period in 1996-97. One hundred sixty-one deaths occurred at home, 180 occurred at nursing homes and 184 occurred at hospitals. Family members of two-thirds of decedents reported the patient had an advance directive regarding life-sustaining treatment. This is also the highest rate of advance planning ever documented at a statewide level.

"The Barriers study shows that overwhelmingly, patients' wishes about where they wanted to die were respected," said Virginia Tilden, D.NSc., R.N., professor of nursing at OHSU and associate director of the Center for Ethics. "The study also shows a high level of satisfaction among family members about where their loved ones died. Over ninety percent of family members of patients who had an advance directive filled out were satisfied with their relatives' end-of-life experience. That is a remarkably high percentage."

The Barriers research also shows that decisions to decline aggressive life-sustaining measures were much more common than decisions to stop such measures. "In four-fifths of the cases, aggressive treatments were never begun," said Tolle. "That means dying patients more often planned for their dying and avoided being taken out of comfortable and familiar surroundings and transferred to the hospital against their wishes." Only 5 percent of families interviewed for the Barriers study reported that "too much" care was given to their relatives.

Managed care is more prevalent in Oregon than in any other state, raising questions about whether patients and families were denied treatments they wanted. Yet the Barriers study suggests families remain satisfied with the amount of care their loved ones received at the end of life. Only 2 percent of families reported "too little" care was given.

Tolle and Tilden point out that Oregon's low in-hospital death rate and high degree of respect for patients' wishes would not be possible without the state's extensive resources for in-home hospice care and adult foster care--resources that can be mobilized faster than in most other areas of the country. The researchers also credit a broad knowledge of and respect for advance directives among patients and families, nursing home personnel, emergency medical technicians, emergency room staff, physicians, and others.

"Other regions of the country have not had this kind of across-the-board commitment of resources to improving care of the dying," said Tolle. "Our research clearly shows that years of hard work by Oregonians on this issue are bearing fruit."