END OF LIFE LEGISLATION: Public Policy Recommendations

In the 1960s, when state court judges refused to protect the rights of minorities within their state court systems, the federal government stepped in to make certain that a fair trial could be had in federal court.  That is exactly what the United States Congress tried unsuccessfully to do in Terri Schiavo’s situation when it enacted special legislation on Easter Sunday, 2005, to permit Terri’s case to be reheard in federal court.  The purpose of this federal legislation was to make sure the state court decision to put Terri to death by starvation and dehydration was correct. 

Unlike the 1960s, however, the federal courts in Florida’s Eleventh Judicial Circuit refused to rehear the case and the judge determined that a federal court could not review a death order by a civil court, despite the fact that federal court reviews of criminal court execution orders are routine.  The federal courts also determined that none of Terri Schiavo’s federal or state constitutional rights had been violated.  Terri had fewer legal protections in Florida state and federal courts than laboratory rats or mass murderers would have.  Therefore, the National Center for Life believes that all state legislatures should enact the following public policy considerations to prevent future termination of the lives of the elderly, disabled, brain damaged and infirm.

1. Requirement for a writing before a court-ordered death. 

At the very least, no civil court should be permitted to order an innocent person to die, particularly by the barbaric means of starvation and dehydration, something that would be illegal for a pet or a death row criminal, without first having a legally sufficient statement such as a written living will or advance health care direction in writing, with signatures and witnesses appropriate to those required for any other legal document.  Without written documents, public policy should always err on the side of life, especially when family members disagree.

State legislatures are very capable of enacting laws that require a desire to terminate one’s life by the removal of a feeding tube to be stated in writing.  Oral testimony, particularly by those who could benefit from the outcome, should not be permitted.


2. State legislatures should not permit the taking of a life merely because the patient is diagnosed as being in a persistent vegetative state (pvs). 

The category of pvs (persistent vegetative state) should not legislatively define which disabled people may live and which may be killed by a court order, particularly when their condition is not otherwise terminal.  PVS is misdiagnosed nearly 40% of the time, condemning to death even those people who may have a hope of recovery. 

Leading neurologists acknowledge that the brain is far more sophisticated than scientists originally thought.  New scientific evidence indicates that the brain can actually reroute communication and other functions when damaged.  Furthermore, as technology advances, neurologists are determining that pvs is too general a category.  Medical experts have now found that there are many more levels of consciousness, including a minimally conscious state (mcs), that offer varying improved prognoses for recovery.  As Terri Schiavo’s case was unfolding in the Florida courts, in other states where death is not so easy an option, patients who had been diagnosed as being in pvs began to recover, even decades later. At a minimum, state laws should not equate pvs with terminal illnesses when making life and death decisions regarding medical treatment.  New laws must recognize new technologies and new diagnoses and should never enact laws that make a pvs diagnosis a death sentence.


3. Guardianship law should recognize a lack of spousal commitment.

A spouse who has moved on and begun another committed relationship should not automatically be permitted to continue serving as a guardian for the other spouse, particularly with regard to making life and death decisions.  In the Terri Schiavo case, Terri’s husband, Michael, had set up a new home with another woman with whom he had two children over a ten-year period.  Michael and Terri had been married for only five years before her collapse.  When a spouse has moved on in this manner, lawmakers should recognize the potential for a conflict of interest and should provide some legislative mechanism to remove that spouse’s automatic preferential status as the guardian and sole legal decision maker. 

Several states already have laws that provide for the removal of a guardian in the event that a spouse cohabits with another person.  If that law had been in effect in Florida, the court would have been required to remove Michael as Terri’s guardian and she might still be alive today, receiving treatment and possibly improving.  It is better public policy for a spouse, cohabiting with another person or beginning a new family with another person, as Michael was doing, to be removed as the guardian, particularly when a final decision that will result in death is at issue.


4. Food and water should not be designated as extraordinary care or medical treatment, no matter what the form of administration. 

Food and water should never be considered as extraordinary medical treatment, but should always be considered ordinary care, something to which every American is entitled, unless that food and water is no longer efficacious for sustaining life.  Many states continue to legislatively recognize food and water as ordinary care and not medical treatment.  That was the law in Florida in 1990 when Terri Schiavo collapsed in her home of unknown causes.  If Florida law had not been changed late in the 1990s to define a feeding tube as extraordinary medical treatment and artificial life support, similar to respirators or heart/lung machines, Terri might be alive today and would not have endured an agonizingly slow death by dehydration and starvation.  The preferred public policy would be to distinguish artificial life support from the provision of food and water by any means.


5. The danger of the “futile care” doctrine. 

Whether a person will ever “get better” should not be a valid reason to end a life under the law.  Neither should a “quality of life” determination provide a reason for inducing death in a patient.  It is very dangerous public policy to permit a judge to determine the quality of life a disabled person must attain in order to be permitted to continue to live.  Many people with disabilities will never see their physical condition improve according to standards of the able-bodied.  Nevertheless, for millions of disabled Americas, their “quality of their life” in the eyes of others should never be a reason to deny their basic right to life or any other liberty under our Constitution.

This public policy debate is farther down the wrong side of the road than many people realize.  In England, for example, the futile care theory permits a physician who believes the quality of a patient’s life is too low to justify life-sustaining treatment, to refuse care even if the patient’s written advance care directives or health care surrogate want treatment to continue.  (See, e.g., an article by Wesley Smith in the Weekly Standard: “Futile Care and its Friends: They Want to Decide Your Life is Worthless,” 07/23/2001, Volume 006, Issue 42.).

Lest we think this theory only prevails under a government controlled health care system such as currently exists in England and will soon be part of American health care law, we should be alarmed by the acceptance of a “futile care” standard currently followed in many American medical facilities under another name---“quality of life.” That was the standard Florida Judge George Greer used to determine that Terri Schiavo would not benefit by testing or treatment to the extent that she would want to continue medical treatment, including food and water.  Similar decisions have been made by health care professionals in other states to discontinue medical treatment for patients who, a judge or medical doctor determines, will never improve.  The trend in such situations in America is already to disregard a patient’s written health care directives if those directives indicate that the patient wants to live rather than die.

California passed the Uniform Heathcare Decision Act during the 1999-2000 legislative session, which among other things, delineates the duties of healthcare providers in the Probate Code, sections 4730, et seq.  The language of 4730 and 4734 is especially chilling:

4730.  Before implementing a health care decision made for a patient, a supervising health care provider, if possible, shall properly communicate to the patient the decisions made and the identity of the person making the decision.  (emphasis added)

4734(a).  A health care provider may decline to comply with an individual health care instruction or health care decision for reasons of conscience.

This language implies that a hospital may post a sign stating, “We retain the right to refuse service,” no matter what the patient or the patient’s health care surrogate wants.  This legislation provides for a right of conscience for a health care provider who may oppose health care decisions to end a life in violation of the patient’s own wishes to continue to receive treatment.

In England, 43-year-old Leslie Burke went to court to fight for his own life after Britain’s’ National Health Service indicated that his wish to continue receiving food and water after he required a feeding tube could not be carried out under British national health care guidelines.  Burke suffers from a disease that will eventually leave him completely paralyzed. When that eventuality occurs, Burke would not be permitted to determine for himself whether he lives or dies.  The government would then make that decision for him—most likely, a decision to terminate his life.

The same national health care policy is now set to become the norm in America, as is already the case in some states.  What is the point of encouraging people to make living wills or appoint health care surrogates if medical health care providers have the option to disregard them upon a determination that further medical care (including the provision of food and water) is futile?


6. The requirement for a federal “civil habeas” cause of action. 

If a state civil court sentences to death an innocent, disabled person like Terri Schiavo, who cannot speak for herself, the law should provide at least the same federal judicial review that a convicted death row prisoner would be entitled to receive.  Such laws do not currently exist in America, although Congress attempted to give Terri that right in its legislation enacted on Easter Sunday, 2005.  Ted Bundy, a convicted mass murderer in Florida, was far more protected under the Florida legal system than was Terri Schiavo as an innocent disabled woman.  Ted Bundy would automatically have the right to have his case reconsidered under a federal court habeas action, while federal courts in Florida denied that right to Terri, even when Congress to authorized a civil habeas-like review for her.  There is no rational basis for this fundamental unfairness. 

When Congress passed a civil “habeas-like” statute seeking to grant Terri a rehearing in federal court, the law was specific only to her situation.  Congress was reluctant to consider passing a law that would have provided a civil “habeas-like” federal review for any patient given the equivalent of a death sentence by a civil state court judge or a hospital ethics or futile care committee.  Legislatures should not permit health care providers to terminate “futile care” against the patient’s own wishes or those of his healthcare surrogate.

Enacting such Public Policy in state legislatures will become increasingly important as the federal government seeks to standardize all health care under a federal system.  As this system becomes increasingly expensive, the government will attempt to use the elderly and disabled, those considered to lack a certain “quality of life” or  to be receiving “future care” to cut medical cost