Do We have a Right to Die With Dignity?

By Alan S. Miller

March 22, 2005

The awful plight facing the family of Terri Schiavo, the brain damaged woman now the center of national attention, is something that need never have happened.

Unfortunately, the President and the Republican majority in the Congress have seemed eager to take advantage of Terri's plight and use the issue for ideological purposes.

However one may feel about the issues of death and dying, there is a simple mechanism—the Advance Directive for Health Care—enabling people most everywhere in the U.S. to control the end of life decisions that will sooner or later affect them.

Terri Schiavo had made it clear to her husband Michael that she would not want her life to be artificially sustained by "extraordinary" medical procedures should she ever become unable to function.

Unfortunately for everyone involved, Terri had never filed an advance directive nor put her desires in writing. The consequences of that omission have been devastating.

Having been medically determined after heart failure and a variety of related complications to be in a "persistent vegetative state," Ms. Schiavo has been unable to receive adequate nourishment by mouth.

After years of litigation, and under a Florida court order on March 18, the tube that has provided food and liquids to Terri for many years was removed.

Unfortunately, the President and the Republican majority in the Congress have seemed eager to take advantage of Terri's plight and use the issue for ideological purposes.

Senate Majority leader Bill Frist has now acknowledged that an unsigned memo was recently sent to all Republican members of Congress calling the Schiavo case a "great political opportunity." That memo seems to have been prophetic.

Mr. Bush and the Congress have now ignored the dominant medical opinion that Terri Schiavo has been in a vegetative state for several years. They have ignored the many subsequent decisions by the Florida courts upholding Michael's desire to honor Terri's wish that she be allowed to die with dignity. Even the Supreme Court of the U.S. refused to debate or reverse the lower court decision.

Within 24 hours of the court directed removal of Schiavo's feeding tube, as ordered by the Florida court, the Congress passed emergency legislation to transfer authority in the case from the state to federal courts.

The President then made a dramatic return from Texas to sign the legislation. This "Palm Sunday Compromise" has not only prolonged the agony for Terri Schiavo but has also moved the matter of end of life decision making from her legal guardian and next of kin (husband Michael) into the political arena.

Most of us believe that we should have the right to have some control over the manner and timing of our own death. To that end, the state of California has long provided the right for a person 18 years of age or older to register an "advance directive for health care" with their medical provider.

Every provider should have the advance directive forms. Each person has the right to name the person or persons who will have the legal right to make decisions in the event they cannot make the decisions for themselves.

These designated "agents" will have the legal right to make all medical decisions for the patient: consenting or refusing consent for medical procedures, providing for or withholding artificial nutrition, hydration, and/or resuscitation efforts.

Terri's case has also fed the maw of the extremist "right to life" politicians and those desiring to use the issue to serve their own political agendas.

Just in the past year, then U.S. Attorney General John Ashcroft filed legal proceedings intended to invalidate Oregon's 1997 "right to life" law providing for strictly monitored and controlled physician assisted suicide.

Oregon's Death With Dignity act allows patients with a terminal illness and less than six months of expected life to request a lethal dose of drugs after two doctors have confirmed the diagnosis and determined the person's medical competence to make the request.

Although a lower court earlier ruled against Ashcroft 's interpretation of the Oregon law, allowing the act to remain in place, the Bush administration has now asked the U.S. Supreme court to overturn Oregon's decision.

Although a popular law in Oregon, only 171 persons have chosen to use it in the first six years since its passage. The Schiavo case has refocused national attention on the rights of terminally ill patients and their families to control the important decisions everyone must sooner or later make about death and dying.

California Assembly members Patty Berg and Lloyd Levine have now announced hearings to craft a law similar to Oregon's legislation. A 1992 ballot initiative and an attempt in 1999 to enact an assisted suicide act both failed. Recent polls, however, indicate that 70% of Californians favor such legislation.

It is not only young people like Terri Schiavo who dislike thinking about and planning for their future health care needs. We all prefer to finesse that issue.

As a kind of "lesson in life", I always distributed copies of the California Advance Directive to hundreds of students in my Bioethics courses at Cal.

One of the class assignments was for the student to either fill out the forms or share them with their family. That was a good exercise for them. It is a good exercise for everyone.

A helpful supplement to the advance directive option is the Robert Wood Johnson Foundation's Five Wishes: Aging with Dignity pamphlet. The five issues we are urged to consider are:

Terri Schiavo had made it known verbally that she would not want to live in a vegetative state. Her husband (and legal guardian) knows that she would not want the "treatment" she has been getting. The courts and most of the medical profession agree with Terri and Michael.

The politicians and religious ideologues think they know better. They are wrong!

Alan Miller taught bioethics for more than 20 years at U.C. Berkeley. He is a resident of Marinwood.

Copyright © 2005 Alan S. Miller
Last updated: March 23, 2005