Terri Schiavo's legacy.

"Guilt is perhaps the most painful companion of death."
--Dr. Elisabeth Kubler-Ross

Imagine Terri Schiavo, Nancy Cruzan, and Karen Ann Quinlan together in heaven playing themselves in a VH1-like Surreal Life television episode. What would they want to tell us about the accidents that sealed their fates--about their loving families, their faith, the legal system, and their untimely deaths?

After all, in 1975, at age 21 Quinlan fell into a coma after having mixed alcohol with Valium at a party. Her devastated parents eventually went to court to win the right to remove the respirator that kept her a live. Life support was eventually removed in 1976, and she managed to live until 1985 but never came out of her coma.

In 1990, there was Cruzan, who at age 25, was thrown from her car in an accident in Missouri and suffered severe brain damage. Her parents went to the Supreme Court in their fight to let their daughter die. The high court's decision provided a path for Cruzan's parents to prove her desire not to live in a vegetative state. A state court agreed with their argument, and she died a few weeks after life support was removed.

Then, of course, there was Schiavo. She had been in medical care since her heart stopped in 1990, and her brain was permanently damaged by a lack of oxygen at age 26. Her husband first sought the removal of her feeding tube in 1998, while her parents opposed it. Her case eventually moved Florida lawmakers and Gov. Jeb Bush to pass a state law that let courts reverse an earlier order and kept her fed against the wishes of her husband, a law ultimately judged unconstitutional by the Florida Supreme Court. Other courts declined to review that decision. Then Congress, after an emotional weekend session, passed a law that let her parents take their fight to federal courts, although the U.S. Supreme Court ultimately declined to take the case. Schiavo finally passed away on March 31, 2005, 13 days after a feeding tube had been removed (see the Schiavo case timeline, p. 10).

Over the course of 30 years, the tragedies of these three women not only captured our sympathy and attention, but they produced new laws, new medical practices and, ultimately, changes in the ways that society views death. Now every state recognizes a person's legal right to choose the medical measures they may want under defined circumstances.

This debate is currently taking place against the backdrop of an aging baby-boomer population and medical advances that are allowing people to live longer. Clearly, many more of us will confront death at the end of a prolonged illness, forcing loved ones to make difficult decisions.

We've all had the opportunity to follow the long and painful journey of Schiavo's family as it played out in the media, in the courts, in the Florida legislature, and in the governor's office, in Congress and the White House, and at the front steps of her hospice. As unwilling voyeurs into the tragic private affairs of this family, we have all witnessed family members behaving so badly to each other, with an entire planet watching, that it was almost Jerry Springer-esque. Add to this legislation (considered by many in the field to be a direct intrusion into a family's private affairs), along with years of court decisions, accepted recommendations from various state panels on end-of-life care, and decades of consensus in medical ethics regarding a patient's right to refuse unwanted medical intervention, and you have a sure recipe for emotionally wrenching drama.

How sad it was for Schiavo and her husband, parents, and siblings. While the focus was supposed to be on what should have been in Schiavo's best interest, it almost seemed as though her needs took a backseat to the various special interest groups that fueled and funded this seven-year battle royal.

I could easily have written a 500-page book, delving into each and every nuance of the events that took place in the Schiavo case. I've decided, instead, to see if there were some important lessons to be learned from this. The most obvious one: Never let deteriorating family relationships get so bad that you end up in the court system, or worse, on the evening news.

If you have not done so already, execute a living will. Just imagine if Schiavo had done this before she became incapacitated. Also, look into advance directives and other mechanisms for letting your end-of-life wishes be known.

The basic concept behind the advance directive is straightforward: It is a set of written instructions, signed by a competent adult, that may include a living will or durable power of attorney assigned to a healthcare surrogate, and is recognized under state law as it relates to the provision of medical care when an individual is incapacitated.

A living will generally states the kind of medical care that an individual finds acceptable, or wishes to refuse, if he or she becomes unable to make his or her own medical decisions. A durable power of attorney for healthcare surrogate is a signed, dated, and witnessed statement naming another person (e.g., spouse, significant other, child, parent, or other person) as qualified to act on the individual's behalf should he or she become unable to make those decisions.

During a person's incapacity, the surrogate has the duty to consult with appropriate healthcare providers, provide informed consent, and make the healthcare decisions he or she believes the incapacitated person would have made under the circumstances, if capable. If there is no indication of what direction would have been chosen, the surrogate may consider the best interest of the subject of the surrogacy in deciding on a course of treatment.

Depending on the laws of each state, both the living will and the designation of healthcare surrogate may be revoked by their maker at any time by a signed and dated letter of revocation, by physically canceling or destroying the original document, by an oral expression of one's intent to revoke, or by means of a later-executed document that is materially different from the former.

Now, there is some good news. The Schiavo case has generated a strong new public interest in living wills. The bad news is that after more than a decade of advocacy, less than 20% of Americans have executed living wills. In addition, even when completed, there is some concern that a living will may not be specific enough to guide healthcare providers through complex end-of-life decisions. In truth, we may not know what we will deem appropriate in a medical crisis years or even decades after having executed a living will.

Physicians and others have long advocated a twofold approach: In addition to a living will, one should also designate a healthcare surrogate to make decisions in the event of incapacity. This designee should be someone who knows the person well and can advocate for his or her interests while sitting across the table from a primary care physician or a quarreling family. Another complementary approach gaining attention is the use of forms, prepared by people when still at full mental capacity, defining the type and extent of specific physician orders for life-sustaining treatment (POLST) they wish to receive. This form has been widely used in Oregon and adopted by a handful of other states, and it has achieved significant levels of compliance, at least with treatment refusals. (Physician compliance with affirmative requests for treatment has occurred less than half the time for reasons still unknown.)

Over the past few years, we have made real strides in improving decision making for end-of-life care. Who knows what impact the recent actions of elected officials, especially during the Schiavo case, might have had? One thing is certain: The apparent consensus of most Americans is that government has no place meddling in the private affairs of its citizens.

Now that Schiavo is resting peacefully, we can thank her for reminding us that we are all mortal and vulnerable to the world around us. Above all, we thank her for elevating the discussion about death and dying, hospice care, and living wills to a new level of urgency in this country.

Ian L. Cordes, MBA, NHA, is President of Corecare Associates, Inc., West Palm Beach, Florida, a long-term care consulting firm. He is also a member of Nursing Homes' Editorial Advisory Board. For further information, phone [phone] or visit www.corecare.net. To send your comments to the author and editors, e-mail [e-mail]. To order reprints in quantities of 100 or more, call [phone].

Editor's Note: This article is for general information only. You may wish to familiarize yourself with the appropriate state and federal statutes and/or seek the advice of a knowledgeable attorney.

BY IAN L. CORDES, MBA, NHA

RELATED ARTICLE: Key Dates in the Schiavo Right-to-Die Case

1990

* February 25: Terri Schiavo collapses in her home from a possible potassium imbalance, cause unknown, temporarily stopping her heart and cutting off oxygen to her brain.

* May 9: Schiavo is discharged from the hospital and admitted to a nursing home.

* June 18: Michael Schiavo, Terri's husband, becomes her court-appointed guardian.

1992

* November: Michael Schiavo is awarded more than $1 million in a malpractice suit related to her collapse.

1993

* February: Michael Schiavo has "do not resuscitate" added to Terri's chart.

* July 29: Upset over Terri's care and dispersal of the lawsuit money, her parents, Mary and Bob Schindler, try to have Michael removed as her guardian. Their case is dismissed.

1998

* May: Michael Schiavo petitions the court to allow the removal of her feeding tube.

2000

* February 11: Circuit Judge George W. Greer approves Michael Schiavo's request to have Terri's feeding tube removed.

2001

* March: Michael Schiavo petitions the court again, requesting that the feeding tube be removed immediately. Greer concurs.

* April: Terri's parents file a motion requesting that Greer recuse himself from the case. Greer denies their motion.

* April: State and U.S. Supreme Courts refuse to intervene, and Terri's tube is removed, but Circuit Court Judge Frank Quesada orders the feeding tube reinserted two days later based on an allegation by the Schindlers that Michael perjured himself.

2002

* February 13: Mediation attempts fail, and Michael Schiavo again seeks permission to remove the feeding tube.

* November 22: After hearing medical testimony, Greer finds no evidence that Schiavo has any hope of recovery and again orders the tube removed.

2003

* October 15: The tube is removed for the second time.

* October 21: Florida Gov. Jeb Bush signs hastily passed state legislation, later to be called "Terri's Law," allowing him to issue an executive order directing that the feeding tube be reinserted. In addition, Bush appoints a guardian ad litem.

* December 2: A court-appointed independent guardian finds "no reasonable medical hope" that Terri will improve.

2004

* September 23: Florida Supreme Court strikes down "Terri's Law" as unconstitutional.

2005

* February 25: After declining to give the Schindlers more time to pursue other legal and medical options, Greer gives permission for tube removal at 1 p.m., March 18.

* March 16: U.S. House of Representatives passes a bill aimed at keeping Terri alive.

* March 17: Florida House passes a bill intended to keep Terri alive; U.S. Senate passes a bill different from U.S. House version.

* March 18: Feeding tube is removed. Greer rules against congressional Republicans who had tried to put off tube removal by seeking her appearance at hearings.

* March 19: Congressional leaders from both parties agree on a bill that would allow the tube to be reconnected while a federal court reviews the case. The White House says President Bush will sign the bill when it is passed.

* March 20: The Senate passes the bill, but Democrats in the House delay passage.

* March 21: By a vote of 203-58, the House passes the bill after members scramble to return to Washington for an early morning vote. President Bush signs the bill outside his White House bedroom. Terri's parents file an emergency request with a Tampa federal judge to have the tube reconnected.

* March 22: U.S. District Judge James Whittemore refuses to order the reinsertion of the tube. The judge says the Schindlers failed to establish a "substantial likelihood of success" on the merits of their arguments. The parents appeal to the U.S. Circuit Court of Appeals in Atlanta.

* March 23: The 11th Circuit Court declines to order the reinsertion of the tube. The Schindlers vow to appeal to the U.S. Supreme Court.

* March 24: The U.S. Supreme Court declines to hear the case brought by the Schindlers.

* March 27: Gov. Bush decides not to take Terri into protective custody.

* March 30: The 11th Circuit Court refuses the Schindlers' motion for a new hearing. The U.S. Supreme Court declines to review the Circuit Court decision, thus ending the Schindlers' legal battle.

* March 31: Terri passes away, 13 days after her feeding tube was removed, ending what was probably the longest, most bitter, most heavily litigated right-to-die dispute in U.S. history.

* June 15: An autopsy found no evidence to contradict the diagnosis that Terri was in a persistent vegetative state after her 1990 collapse, supporting her husband's contention that she would not have recovered if she had been given additional therapy, as her parents requested. Despite these autopsy findings, Gov. Bush pushes the local state attorney to open an investigation into her death. No wrongdoing is found.

--Ian L. Cordes, MBA, NHA