Session Date: August 17, 2005

Annual Meeting Session Summary: Beyond the Schiavo Case: Revisiting End-of-Life Issues

By Ken Camp
Communications Officer, Washington Legislature

This summary is provided for information purposes only. NCSL does not endorse any views it contains.

SEATTLE - With the Terri Schiavo case still fresh in their minds, state legislators engaged in a discussion of end of life care planning at the National Conference of State Legislatures' Annual Meeting on Tuesday.

Jack Schwartz, Maryland assistant attorney general and director of health policy development, and Jonathan Keyserling, vice president of public policy analysis and strategy for the National Hospice and Palliative Care Organization, presented lawmakers with an overview on end of life care and various policy options.

“There exists a gap between what patients expect with regard to end of life care and what actually happens, Schwartz said. "The policy task is getting the care delivery system to give people what they want."

Both Keyserling and Schwartz cautioned lawmakers that care should be taken to ensure that the wishes of the patients and families are carried out and not the wishes of outside forces. To make sure that happens, Keyserling and Schwartz stressed that directives or living wills should be drafted while the patient still has the capacity to make decisions.

Patients should also make sure their family members know their wishes. “Documents should not be considered sacred and locked in a box somewhere where nobody can find them,” Keyserling said.

There is federal legislation on this issue pending, but Keyserling does not expect it to pass in the near future. In the states, Keyserling noted that no significant end of life care legislation has passed since the Schiavo case. Keyserling said the National Right to Life Coalition has some legislation regarding feeding tube removal, which has not met with success yet. In a few other states, groups have brought forward legislation in a few states regarding spousal behavior in an end of life care case. However, difficulties in defining when a spouse is behaving badly in an end of life case have been problematic for the legislation.

A number of states have validated the use of a “portable physician’s order”, which reflects the end of life care decision making when a patient is transported from a nursing home to an emergency room, for example. In addition, a number of states have passed legislation establishing Advance Directives registries, which allow a doctor to log in to a computer to determine what decisions a patient has made. Keyserling cautioned that while these registries are good, there are issues regarding patient confidentiality and whether or not the version of the advance directive that the doctor is reading is the most recent one.

For more information on end of life care issues and advance directives, from the National Hospice and Palliative Care Organization, go to http://www.caringinfo.org/.

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