Survey shows patients, families lack education on end-of-life issues

November 13, 2000

Patients may be making crucial choices to direct their care at the end of their lives without adequate information. Many patients in Oregon do not know that under current Oregon State law and legal precedent, they can refuse life-saving care or have treatment stopped once it has begun. Most do not know the difference between assisted suicide and euthanasia.

A survey conducted by Dr. Maria Silveira and her colleagues showed that while patients in Oregon have had extensive exposure to arguments about assisted suicide, and voted on it twice, many do not understand their basic rights regarding end-of-life care. Silveira, a Robert Wood Johnson clinical scholar at the University of Washington, writes in the Nov. 15, 2000, edition of the Journal of the American Medical Association that the survey results showed a need for health-care providers to actively educate patients about their options in end-of-life care.

She added that doctors should not assume their patients know all the options, from refusal to withdrawal of care. These rights existed before the passage of the Oregon Death with Dignity Act in 1997.

"The ignorance regarding end-of-life care options found in this survey - especially following so closely on the heels of the 1997 referendum and the surrounding media campaign - suggests that even the extraordinary public discussion about these issues fails to educate typical patients about their basic health care rights," Silveira said. She added that doctors and other health workers bear the responsibility of assuring that patients understand these options before writing a living will or making any critical health-related decision.

The survey was conducted by providing questionnaires to outpatients visiting clinics at Oregon Health Sciences University. The results suggest that people outside the state of Oregon, who have had less exposure to the issue of assisted suicide, may know even less about it.

One thousand patients were offered the questionnaires, and 728 completed them. Sixty-nine percent of the patients answered the question about refusal of treatment correctly, 46 percent correctly on withdrawal of treatment, 23 percent correctly on assisted suicide and 32 percent correctly on euthanasia. Forty-one percent answered the question about double effect (giving pain medications with the goal of relieving pain and suffering even if death may occur as a result) correctly. Only 18 percent of the patients questioned were able to answer both the question about assisted suicide and the one about euthanasia correctly.

Silveira became interested in how much patients know about their health care rights when the son of a critically ill man in a Portland hospital asked her to terminate his father's life by lethal injection, only a few months after the passage of the Death with Dignity Act. The younger man was surprised to learn that euthanasia was still illegal under the new law authorizing assisted suicide.

Definitions at the end of life: is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to