Schiavo: The case for privacy

This is a piece that was published by Roger Blackburn and I in the Gainesville Sun on 22 March, 2005.  It was after a huge outcry by – primarily – so-called “right-to-lifers” who insisted that Ms. Schiavo was not in a vegetative state, but was responsive.  This was particularly voiced by then-Senator (and Doctor) Frist.  In fact, this case was one of a tragic family disagreement that was turned from tragedy to a sad farce by the over-wheening arrogance of our Government, both state and federal.  After Ms. Schiavo was allowed to die, a post-mortum examination showed, as well as can be, that she had been in persistant vegetative state.


Over the past several months, we have witnessed, as have fellow citizens throughout our country, the debate about life-prolonging therapy for Ms. Terri Schiavo. Is it not possible that the agony suffered by the individuals closest to Mr. Schiavo – her parents and husband – has been made unimaginably more painful by the interventions of the governor and Legislature of Florida, and more recently, members of the United States Congress?

Proponents of continuation of support assert that Ms. Schiavo can recover with “therapy”; they also say that the interventions of multiple politicians is of significance as “America should be a society that is built on a culture of life.”

Those who wish to cease life-prolonging measures claim that Ms. Schiavo had expressed to her husband a desire not to be kept alive by artificial means and that her right to die with dignity is being trampled by individuals whose actions are like those taken by “Stalin’s politburo.”

Is it possible that reasonable people might disagree on the issue of the withdrawal of life-sustaining therapy from an individual who has not suffered brain death? We think the response to this query is affirmative. There is, however, some background necessary to rationally discuss Ms. Schiavo’s plight.

• Prior to the major medical technological advances of the mid-20th century, there was and could have been no issue such as we see today with Ms. Schiavo’s case:

Medical science was incapable of providing the kind of intensive care support that we take for granted today. Not only so-called “wonder drugs,” but mechanical ventilation, prolonged nutritional and intravenous fluid support, even the very beds that allow one to be immobile for prolonged periods without the formation of pressure sores were not available. Thus, death was – however grudgingly – accepted as a fact of life.

From the late 1950s to mid-1960s, our ability to use medical technology to prolong life became very much a part of medical culture. We found, beginning around this same time, that while we could keep the human body functioning, there were times when this led not to recovery or even to regaining awareness, but to a state where only the basic vegetative bodily functions appeared to be present.

This was later termed the “persistent vegetative state.” In this state the brain functions only at the brainstem level: eyes open and blink, the lungs exchange gas, the heart pumps blood, and blood vessel “tone” is maintained, but the part of us that makes us who we are, the cortex of our brain, is not functioning. We are, in a sense, a shell of our former selves.

This happens, often, due to a severe injury to the brain in which that organ becomes oxygen-starved; there is often no meaningful recovery. Many situations can lead to this persistent vegetative state: near drowning, traumatic brain injury or cardiac arrest. Cardiac arrest is a common cause of death, and persistent vegetative state, and is the reason Ms. Schiavo is in the headlines today.

Brain death is different conceptually and functionally. While with persistent vegetative state it is possible that an individual might be kept “alive” for many years, this is not so in brain death. Some think, in error as it turns out, that brain death means the entire brain is gone; this is not so.

Brain death refers to the death of the brain stem, the regulatory center of the body and the pathway through which all nerve impulses are routed. If the brain stem dies, persistent vegetative state functioning is not possible; all organs will fail and cease functioning over a relatively brief period of time. In the recent past, it was enough to recognize that death would come soon. The precise determination of brain death was not needed. However, with the advent of organ transplantation, determination of brain death is of critical importance.

If, as happens in brain death, there is no chance of any recovery and, moreover, within days to weeks all organs will fail and cease functioning, the determination of this state becomes vitally important if organ donation is to occur. Even though the organs in the brain dead person will ultimately fail, they may be, depending upon many factors, of sufficient quality to transplant into another individual who lies in a hospital bed dying of liver, heart, lung, kidney, pancreatic or small intestinal failure. The determination of brain death is critical because in our dying, we may save the life of another, if we allow one or more of our organs to be utilized for transplantation.

Note, if you will, that we point out in persistent vegetative state, that there is often no meaningful recovery. Our brains are remarkably “plastic,” in the sense that important functions can be, over time, shifted from a damaged area to one that remains functional, even if only partially so. While the precise neurophysiology is not known, this “shifting” is an observed phenomenon. The ability to recover, however, is not limitless over time. For example, in an individual who remains persistently vegetative for more than about six months to one year after severe traumatic brain injury, we can with great confidence tell the family that they will not recover.

In the case of Ms. Schiavo, we can and do assume that the physicians, nurses and therapists caring for her have left no stone unturned in looking for reversible conditions. This said, after 15 years, there is no “therapy” that will allow her to recover. Ms. Schiavo is doomed, if her husband is not allowed to withdraw nutritional and fluid therapy, to “live” in a nether-state of neither being nor not-being. The person that her parents and husband loved, and so much want to embrace, caress, and talk to, is gone, never to return. We can feel much sorrow, even angst, at this; after all, each of us will face death sooner or later. We may even rage at the unfairness of death. What we cannot and should not do, however, is to demonize those who disagree with us on this.

• Legal issues and withdrawal of therapy in the context of persistent vegetative state:

Adults in the United States have long enjoyed the common law right to refuse medical treatment even if it is life sustaining. Usually, the question of whether to remove life support equipment or therapies from one in a persistent vegetative state takes place in the medical setting. Although the question may involve one or many health-care providers and perhaps the hospital’s ethics committee, this difficult end-of-life decision ultimately must be made by the patient, the patient’s surrogate or, on occasion, a guardian.

This final decision regarding acceptance of an inevitable death is made thousands of times daily in hospitals and hospice facilities around the country – a decision that is presumed to be in the best interests of the patient. This private, personal, and agonizing decision is usually the final one, acceptable to the family, the community and society.

Rarely, there may be some doubt about this decision for a variety of reasons. In such a case, the decision-making process is removed from the medical facility and the family and placed with the state court system. For five years, that is where the Schiavo matter has been reviewed. Ms. Schiavo’s husband, Michael, has asserted in legal proceedings, as he did in the hospice setting, that his young wife had expressed to him her wish not to be medically maintained in the event of a tragedy leaving her unable to function. Such a decision should not be surprising, since 87 percent of Americans have expressed similar wishes if they found themselves in a persistent vegetative state, like Ms. Schiavo’s.

The parents have not rebutted that assertion, but have maintained that Ms. Schiavo’s vegetative state might be improved with some “therapy.” The conflicting positions have been given a full hearing at the trial level, with the court deciding that the original decision by the husband reflected the best interests of Ms. Schiavo. As a safeguard, that decision was evaluated by the appellate courts on several occasions and there appeared to be no error in the process or in the application of the law.

If the state court had ruled differently, intervention by the executive and legislative branches of state government would never have occurred. Because some disagree with what, traditionally, would have been a final decision, much has transpired and all of it has been in uncharted waters – some would even say dangerous waters.

In unprecedented fashion, the other two branches of state government became involved in this case. At the urging of Gov. Jeb Bush, the Florida Legislature passed a special bill to override the decision of the Florida courts. Not surprisingly, this bill was found to be unconstitutional by the Florida Supreme Court, allowing the original court decision to be implemented.

The Florida Legislature attempted to cure the unconstitutional deficiencies by passing another bill which would be less specific in its scope, but retroactive in its application in order to override the decision of the state court and its jurisdiction to decide the matter. Although spending an estimated 25 percent of its entire legislative time on the Schiavo matter, this maneuver by the Florida Legislature also failed.

There already has been an attempt remove Michael Schiavo as guardian and to move the matter from state court to federal court. These attempts have all failed.

In what should be a private, family-centered end-of-life decision – a decision that was reviewed exhaustively by state court judges and found to be appropriate – the federal government has now attempted to intervene. Both houses of Congress have attempted to subpoena Ms. Schiavo and others involved in order to further delay implementation of the decision to remove her feeding tube and allow death to intervene.

Yet despite all of the review and discussion of this very personal matter, despite the urgent national matters involving our country’s security, our Congress met on Sunday to pass legislation that will strip the Florida courts of jurisdiction and allow review in the federal court system. The president is said to have cut short his Texas vacation to sign the legislation.

These unusual moves by the highest levels of government raise questions: Does the routine end-of-life decision need yet another review in the federal system after being given a thorough review by the state? Should our under-funded medical system and over-extended families continue to bear the burden (both medical and legal) of the resulting delays? However tragic and traumatic this end-of-life decision might be, do we really want to make a federal case out of it?

• An American death:

To return to the principal in this discussion, Ms. Schiavo, we must again turn to what we believe to be her central moral wish: to not be kept alive artificially. Of course, here we have to suppose that this was stated in the context of an inability to recover, for what is it we do in the intensive care unit but keep individuals alive by artificial means, except that they have a chance to recover and reclaim their former lives.

If it is the case that Ms. Schiavo’s husband is trying to fulfill her wishes, why do we see such conflict between those who would allow Ms. Schiavo to die, and those who would keep her in a persistent vegetative state? Of course, if we assume bad faith, there are many ways we could interpret the debate. However, assuming good faith on all sides, we can come to only one conclusion: that we Americans have insufficient understanding of life, and a poor understanding of death with which to discuss this very powerful issue.

Death will come to all of us in one manner or another, at a time we neither know nor can control. While medicine has powerful tools that allow us to prevent and cure disease, we cannot prevent death, only postpone it in some cases. When we are unable to cure and when death is inevitable, or when meaningful recovery is not possible, our society generally agrees that cessation or withdrawal of therapy is appropriate. Withdrawal of therapy may entail removal of a mechanical ventilator or the powerful medicines that keep the heart functioning. Withdrawal may also entail the removal of a feeding tube or intravenous fluids, as has been requested by the husband of Ms. Schiavo.

Suffering is not pain, although it may be associated with pain. Suffering is a feeling that is integrated and made into the sensation we recognize by our central nervous system; in the persistent vegetative state, such integration is thought not to occur. However, to be absolutely sure that an individual is not made to suffer, when a feeding tube is removed, physicians most often administer a small dose of narcotic as an intravenous infusion. The idea is, again, to ensure as much as is possible that no suffering is caused when attempting to follow a previously stated central moral belief of an individual who is to die.

Ms. Schiavo’s situation highlights the frailty and temporal nature of life. To proclaim that one is “pro-life” in this context is logic-defying. There is no recovery possible for Ms. Schiavo, despite the wishes of her family; this very sad woman can never again be what she was before her cardiac arrest. If we in our country have respect for life, for the individual, for humans as autonomous actors on the stage of life, we will allow Ms. Schiavo her final request; we ought to have enough respect for her family to allow them to grieve.

The rest of us, however we describe ourselves, then need to redouble our efforts so that our living fellow humans receive the attention and support that many have offered Ms. Schiavo and her family.

Despite our many miracles, medicine never truly conquers death. Indeed, death is a part of life, an indispensable part of it. In medicine we fight death, but sometimes, death is no longer an enemy. This is one of those times.

Dr. A. Joseph Layon is a professor of anesthesiology, surgery and medicine in the University of Florida College of Medicine and Chief of the Division of Critical Care Medicine

Roger Blackburn, who resides in Gainesville, graduated from the UF College of Law in 1971.

About AJ Layon

AJ Layon was, for 28 years, at the University of Florida College of Medicine, in the Division of Critical Care Medicine, in Gainesville, FL. For the approximately 10 years until September 2011, he was Professor and Chief of Critical Care Medicine at UF; In September of 2011 he became System Director and Co-Chairman of Critical Care Medicine in PA; this ended in 2017. He served as a Physician in the Surgical Group with Médecins sans Frontières (MSF, Doctors without Borders) through 2018 and is presently an intensivist in Florida, struggling through the SARS-CoV-2 crisis. While his interests are primarily related to health care, health care reform, and ethical issues, as a citizen of our United States and our world, he will occasionally opine on issues of our "time and destiny". Follow on Twitter @ajlayon
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