Update 029: Volume 17, Number 3 (2003)

Special Edition

With intent to kill

The battle over Terri Schiavo’s life continues

According to the Chicago Tribune (10/23/03), hers is “the face that moved a nation.” Images of Terri Schiavo’s beaming response to her mother’s presence, her ability to track a balloon with her eyes, and visually follow family members as they moved about her room, convinced hundreds of thousands of Americans that Terri is not the “vegetable” her husband Michael, his lawyers, and more than one Florida judge would have everyone believe. What those images reveal is a disabled human being whose civil rights have been grossly violated.


As was previously reported in the Update earlier this year (see 2003: no.1, p.1), Terri collapsed about 5 am on 2/25/90 while at home, and the oxygen supply to her brain was cut off causing brain damage. Exactly what caused her to fall to the floor has been the subject of some speculation.

Her husband, Michael Schiavo, who witnessed her collapse, says that Terri, then 26, had a heart attack caused by a low potassium level—possibly due to an eating disorder. This is the theory Michael, a nurse and respiratory therapist, successfully presented in a malpractice suit against Terri’s doctors. The jury award was over $1 million: $300,000 for Michael’s loss of companionship and $750,000 for Terri’s ongoing care and rehabilitation.

Another theory as to what happened is based on a recently discovered 1991 total-body scan, taken after her collapse and resultant brain damage. That scan reveals a history of severe physical abuse. “Somebody worked her over real good,” concluded a doctor after reviewing the scan. During a court hearing, another doctor testified that, when she was brought into the emergency room, she had a “suspiciously rigid neck” and that the only other time he had seen this in a cardiac patient was in the case of an attempted strangulation. Despite the doctors’ findings, Pinellas County Circuit Court Judge George Greer—who has consistently ruled in Michael’s favor—refused to allow discovery of this body-scan evidence during the November 2002 hearing. Greer ultimately ruled that Terri is in a permanent vegetative state (PVS) and, therefore, there is no hope of recovery. The judge also granted Michael’s petition and ordered the removal of Terri’s feeding tube. He later stayed that order pending an appeal filed by Terri’s parents, Robert and Mary Schindler, who had obtained numerous opinions from neurologists and therapists that Terri is not PVS. (See Terri’s Fight website for more information.)

Yet, when Michael testified at the malpractice proceedings in hopes of getting a sizable financial settlement, he gave no indication whatsoever that he would ever want to cause Terri’s death. Instead, he told the jurors, “I believe in the vows that I took with my wife, through sickness, in health, for richer or poorer. I married my wife because I love her and I want to spend the rest of my life with her. I’m going to do that.” [St. Petersburg Times, 11/8/03]

As soon as he received the financial settlement, however, he placed a “Do Not Resuscitate” (DNR) order on her and would not permit any therapy or antibiotics for infections. He has denied Terri all therapy since the fall of 1991.

Michael claims that Terri once said she wouldn’t want to live in her current state (a claim her parents reject and Judge Greer accepts). The fact is that Michael never once mentioned Terri’s “wish” until after he had received the malpractice settlement.

And as far as his marital vows are concerned, Michael abandoned those almost 8 years ago when he began living with a woman with whom he now has one child and another on the way.

Michael’s credibility suffered another blow when three of Terri’s former caregivers revealed a husband who often acted against his wife’s best interest. According to one sworn affidavit by nurse Carla Sauer Iyer, Michael has said things like: “Has she died yet?” “When is that bitch gonna die?” and “Can’t anything be done to accelerate her death—won’t she ever die?” [Affidavit, 8/29/03]

Jeb Bush moves to protect Terri’s rights

Florida Governor Jeb Bush first entered the fray on 8/26/03 when he sent a letter to Judge Greer asking him to get a fresh assessment of Terri’s situation by appointing a guardian ad litem for her before issuing any order to end her life. (Michael’s power over Terri’s life rests in the fact that he is her legal guardian—not because he is her husband.)

But Judge Greer summarily rejected Bush’s request, saying, “it is going in the file.” Instead, the judge set 10/15/03 as the target date for the surgical removal of Terri’s feeding tube.

Facing the prospect of their daughter dying slowly from dehydration, the Schindlers begged the governor to stay Terri’s court-ordered execution—a power governors have to save even guilty death row inmates. Terri’s only crime was being cognitively disabled.

On the sixth day of Terri’s starvation and dehydration, Jeb Bush and the Florida Legislature took definitive action. In part as a result of over 160,000 calls and e-mails from people across the country, the legislature passed a one-page bill (HB 35-E) giving the governor authority to order a one-time stay in certain cases involving the withholding or withdrawing of food and fluids from a PVS patient who has no written advance health care directive and there is disagreement among family members as to the patient’s wishes. Bush quickly issued Executive Order No. 03-201, ordering the immediate reinsertion of Terri’s feeding tube.

Angered by the legislature’s action and Bush’s order, Michael and his lawyers issued a warning that any doctor who reinserts Terri’s feeding tube or gives her intravenous hydration would be sued. [Tampa Tribune, 10/23/03] But this bullying tactic proved ineffective. On 10/22/03, her feeding tube was replaced and her food and fluids slowly reinstated.

Claiming that Terri was “abducted from her deathbed,” Michael’s lead lawyer, George Felos (a right-to-die proponent), vowed to fight what has been dubbed “Terri’s Law.” “It is so repugnant to so many provisions of Florida’s constitution, we are all certain that it will be overturned,” he explained. [AP, 10/23/03]

A recent letter to the editor of the Weekly Standard put Florida’s legislative action into perspective. “While Florida’s passage of ‘Terri’s Law’ opens the possibility for state intervention to ensure ‘nutrition and hydration’ under limited circumstances, it does not go as far as Pennsylvania’s House Bill 840 of this year,” wrote Dr. Mel Kulbicki, professor of political science at York College of Pennsylvania. “This bill makes it an offense to deny ‘necessary sustenance, drink, shelter’ to those over whom one has ‘duty to care,’” he explained. “Lest hope be raised regarding the sanctity of human life, however, this bill applies only to pets. It is a sad commentary on our times when animals are given more protection under the law than humans.”

Litigation continues

The American Civil Liberties Union (ACLU) has joined Michael and his lawyers in filing suit against the governor and challenging the constitutionality of “Terri’s Law.” They contend that the new law violates Terri’s right to refuse treatment as well as the separation of powers doctrine contained in the state’s constitution. [Tampa Tribune, 11/6/03]

Schindler family spokeswomen, Pamela Hennessy, said she was “outraged” over the ACLU’s intervention. “I’ve been contacting the ACLU since the beginning of my involvement in this case to have them speak out against what’s going on with Terri,” she said. “It’s going on against her will. She’s had her religious freedoms stripped from her. She’s had her civil liberties stripped from her. And they’re defending the husband?” [Sun-Sentinel, 10-24-03]

Gov. Bush has been steadfast in his quest for justice. He has called for a jury trial to determine what Terri’s wishes really were regarding her current disability and to defend “Terri’s Law.” He also sought the court appointment of a new guardian ad litem for Terri. Once Univ. of South Florida professor Jay Wolfson was appointed, Gov. Bush immediately asked to meet him to determine “the scope” of Wolfson’s investigation. [Miami Herald, 11/7/03]

The Schindlers have filed another lawsuit to remove Michael as Terri’s guardian and to enter into evidence the 1991 body scan showing that Terri had been physically abused. Michael attempted to block that evidence, but he was unsuccessful.

Meanwhile, the Advocacy Center for Persons with Disabilities, a state mandated and federally funded agency, has launched an investigation into the physical abuse and neglect allegations against Michael. The agency’s findings could trump any court ruling to the contrary. [Chicago Tribune, 10/23/03]

According to Not Dead Yet spokesman Stephen Drake, 12 national disability organizations have filed amicus briefs on Terri’s behalf. “What ultimately happens to Terri Schiavo will affect countless other people with disabilities in this country,” he said. [Los Angeles Times, 10/29/03]

Schiavo case: Who makes death decisions?

Florida creates protections for disabled patients who don’t
make wishes known in advance

Rita Marker

When Terri Schindler-Schiavo was moved to a hospital for reinsertion of her feeding tube, attorney George Felos was outraged, saying she had been kidnapped from her deathbed. His fury was surreal since Terri was only on her deathbed because his client, husband Michael Schiavo, had ordered her death by dehydration.

Some pundits were also angry about the law that lets Terri receive food and fluids. They said the Legislature was pandering to radical right-to-life activists. Sure, there are the Johnnies-come-lately who push their own agendas. But that should not obscure the real issue.

Lost in the cacophony is the fact that 12 national disability rights groups filed “friend of the court” briefs opposing Terri’s starvation and dehydration. Terri’s case is a disability rights case.

Many who rail against the new law say it will force Floridians to undergo treatments they don’t want. False. The law only applies to people who have not expressed their wishes to forego food and fluids or named someone to make their health care decisions. Even without such advance directives, food and fluids can still be withdrawn unless a family member disagrees.

This adds protection for vulnerable people who could be subjected to a dehydration death ordered by a court-appointed guardian. It should be noted that Michael Schiavo’s power over Terri’s life and death is based on his status as her court-appointed guardian. The law also calls for appointment of a guardian ad litem (not the same as the guardian) whose role includes determining whether conflicts of interest exist. In Terri’s case, that is certainly necessary.

For example, Michael says he took Terri to doctors and aggressively sought treatment for her after her collapse in 1990. But he doesn’t say that this took place before he won a 1993 malpractice judgment on Terri’s behalf. The jury awarded $750,000 for Terri’s care based on Michael’s testimony that she had a normal life expectancy and that he would follow a detailed plan for her therapy.

Yet, as soon as the ink dried on the check, Michael placed a do-not-resuscitate order on Terri and refused to permit therapy, antibiotics for an infection or even routine gynecological exams. As her guardian, he had the power to deny her care. And he did. But Terri continued to live.

In 1998, with more than $700,000 still in Terri’s guardianship estate, Michael “remembered” Terri had said she’d never want tubes. And he sought to have her feeding tube removed even though, during a 1993 deposition, he had said, “I couldn’t do that to Terri.”

The court appointed Richard Pearse as guardian ad litem to determine whether there were any conflicts of interest.

In his 1998 report, Pearse noted that Michael’s credibility was “adversely affected by the obvious financial benefit to him of being Terri’s sole heir at law in the event of her death while still married to him.” Michael successfully sought to have Pearse removed as guardian ad litem.

Although he remains married to Terri, Michael has gone on with his life. He has a fiancée with whom he has one child and another due soon. Most of the money awarded for Terri’s care has been used for Michael’s attorneys’ fees. A small portion has been set aside for Terri’s immediate cremation.

Other troubling questions remain. Bone scans taken soon after Terri lapsed into her current condition were not examined until recently. According to forensic pathologist Dr. Michael Baden, Terri’s injuries suggest trauma caused by a car accident or a beating. And last week Florida’s state and federally funded protection agency for disabled persons announced that it was launching an investigation into alleged spousal abuse in Terri’s case.

The Schiavo case shows why the Florida Legislature was wise to pass a law adding necessary protection for vulnerable, disabled patients.?

Rita L. Marker is an attorney and executive director of the International Task Force on Euthanasia and Assisted Suicide. She is the author of numerous articles, legal briefs, and the book, Deadly Compassion. Her article appeared in the Detroit News, 11/2/03, and is reprinted here with the author’s permission.

The Guardian

In 1998, Terri Schiavo’s first guardian ad litem filed a report on her case.
It cites husband’s conflicts of interest.

Wesley J. Smith

The Terri Schiavo case continues to take dramatic twists and turns. Even as Michael Schiavo attempts to have Terri’s Law declared unconstitutional, pursuant to the law’s requirements, a judge has appointed a guardian ad litem–Professor Jay Wolfson, of the College of Public Health at the University of South Florida in Tampa–to represent Terri’s interests.

There has been some confusion as to whether Wolfson replaces Terri’s quasi-estranged husband Michael Schiavo as guardian of Terri’s person. (I use the term “quasi-estranged” because Schiavo effectively shattered the sanctity their marriage years ago by entering a committed relationship with another woman and starting a family with her.) He does not. Wolfson’s sole responsibilities are to determine whether Terri should be allowed a swallow test, whether she should be provided rehabilitation, and to write a report with his recommendations about these matters–all within 30 days. In the meantime, Schiavo remains fully in control over Terri’ life and care (or the lack thereof)–with the exception that he cannot, for now, remove her tube-supplied food and water.

A little known but interesting facet of this case is that Wolfson is not the first guardian ad litem appointed to represent Terri’s interests. When Schiavo first petitioned the court for permission to dehydrate his wife in 1998, he properly admitted that he had two significant conflicts of interest: He was likely to want to remarry and if Terri died, he would inherit the more than $700,000 then on deposit in her trust account. (For those who have not followed this case, Terri received the money in a medical malpractice lawsuit.)

Because of these conflicts of interest, the Probate Court appointed Richard L. Pearse Jr. of Clearwater, Florida, as Terri’s guardian ad litem and instructed him to investigate the matter and report back with a recommendation. Pearse filed his report with the court on December 28, 1998 urging that the court deny the petition to remove Terri’s food and water.

Considering that Pearse’s report was written long before the Schiavo case became an international cause celebre, it makes interesting reading. The guardian ad litem supported Schiavo’s position on some points and the Schindlers on others. The following are its pertinent portions:

Pearse unambiguously accepted the diagnosis that Terri is in a persistent vegetative state (PVS) based on the opinions of two doctors, one who treated her and one who consulted on the case. This diagnoses was–and remains– disputed by Terri’s parents, Bob and Mary Schindler. Indeed, subsequent to Pearse’s report, the Schindlers energetically attempted to garner evidence that she is conscious. To some degree, they have succeeded: Four board certified neurologists, two board certified internists, one neuro-psychologist, and two speech pathologists have testified in person or by affidavit that Terri is not PVS. These opinions were reinforced by the affidavits of three nurses who cared for Terri in the mid-1990s and who claim to have observed her being interactive. Moreover, millions have viewed videos of Terri and been shocked by the extent to which she appears to be aware and awake. (The courts have ruled consistently that Terri is PVS.)

Pearse claimed that Terri has muscle contractures despite receiving “regular physical therapy.” He may have assumed that she received such care–it is routine for bedridden patients, after all. Yet, according to Patricia Anderson, the Schindler’s attorney, there are no entries indicating that PT was ever performed in Terri’s chart after 1992. Indeed, in 1998, when a new doctor urged Schiavo to approve an evaluation of Terri so that a plan of physical therapy could be developed, he refused to permit it.

Pearse confirmed the charge by the Schindlers that once the medical malpractice money was in the bank, Schiavo began to refuse medical treatment for Terri, writing:

After February 1993, Mr. Schiavo’s attitude concerning treatment for the ward apparently changed. Early in 1994, for example, he refused to consent to treat an infection from which the ward was then suffering and ordered that she not be resuscitated in the event of cardiac arrest. The nursing home where she resided at that time sought to intervene, which ultimately led the ward’s husband to reverse his decision and authorize antibiotic treatment.

Perhaps because of the intervention by the home, Schiavo soon moved Terri to a different nursing facility.

Schiavo admitted to the guardian ad litem that he had at least “two romantic involvements” after Terri’s collapse. “It is apparent to me,” Pearse wrote the court, “that he has reached a point that he has no hope of the ward’s recovery and wants to get on with his own life.” (To say the least. At the time of Pearse’s investigation, Schiavo was already living with the woman who would become the mother of his children.)

Contrary to Schiavo’s allegation on Larry King last week that the Schindlers “really basically didn’t have any care with Terri,” Pearse painted a vivid picture of parents worried deeply about the quality of care their daughter was receiving and profoundly committed to remaining involved in her life:

From the time of the ward’s accident, the ward’s parents have been vitally interested in her welfare . . . After the falling out between the ward’s parents and her husband, Mr. and Mrs. Schindler pursued removal litigation in an effort to have Mr. Schiavo removed as their daughter’s guardian and to have themselves appointed guardians of her person . . . They have also pursued litigation against him to gain access to medical and financial information concerning the ward which was withheld by the ward’s husband, with only partial success. They express extreme frustration with the current situation in which they have virtually no input into the decision making process concerning their own daughter. The ward’s parents visit her regularly but at times when they won’t have to confront Mr. Schiavo.

Moreover, rather than the Schindlers not being interested in seeing Terri, as was asserted on Larry King, Pearse noted that it was Schiavo who “has isolated the ward from her parents.”

As of April 4, 1998, Terri’s trust fund held $713,828.85. “Thus,” wrote Pearse, “Mr. Schiavo will realize a substantial and fairly immediate financial gain if his application for withdrawal of life support [tube-supplied food and water] is granted.” (Schiavo now claims that there is only $50,000 left in the account, the bulk of the money having gone to pay his attorneys.)

At the time of the report, only Schiavo claimed that Terri would not wish to be kept alive if severely incapacitated. “However,” Pearse opined, “his credibility is necessarily adversely affected by the obvious financial benefit to him of being the ward’s sole heir at law in the event of her death while still married to him. Her death also permits him to get on with his own life.” (Subsequent to the filing of the report, and perhaps in response to it, Schiavo’s brother and sister-in-law came forward to claim Terri made similar statements in their presence. In this regard it is worth noting that no member of Terri’s family, or any of her friends, recall her ever making any such statements to them.)

Pearse concluded, “Given the inherent problems already mentioned, together with the fact that the ward has been maintained by the life support measures sought to be withdrawn for the past 8 years, it is the recommendation of the guardian ad litem that the petition for removal be denied.”

Unfortunately, Pearse’s opinion held scant sway with the court. After filing his report, he requested further court instructions to authorize him to continue to represent Terri as guardian ad litem. Schiavo’s attorney, George Felos objected, and attempted to have Pearse removed for bias. This attempt failed but after his report was received, Pearse was discharged from participating any further in the case. And despite Schiavo’s continuing conflicts of interest–which only deepened on the personal level as he sired children–no other guardian ad litem was ever appointed to represent Terri during the years of litigation, proceedings that culminated in an October 15, 2003 court order requiring Terri Schiavo to be deprived of all water and food toward the end that she dehydrate to death.

All I Ever Wanted to Do…

Rus Cooper-Dowda

All I ever wanted to do was live, have a child, and teach since I was five years old. But events in the mid-1980s almost stopped all of that from happening.

Due to being wildly misdiagnosed, garden variety lupus spun out of control. I sank into nearly continual seizures, which earned me an extended stay in the intensive care unit (ICU) of a prestigious east coast hospital. It was so sad. I couldn’t think, talk, bear children or have a meaningful life again. I had to be allowed to die with all basic treatment and stimulation stopping, since I wouldn’t notice anyway. Of course, I would never be able to write again. The prevailing opinion was simply that my death would be better than my adequately treated disability. My husband sided with the physicians.

So I obliged them and died. NOT!

Here’s the real story: I could actually hear all these conversations about my futile care and demise held in my room.

I desperately started trying to communicate. When talk of my pointless life would commence, I first tried moving to show the topic really mattered to me. In response, I got sedated for seizures.

Then I tried vocalizing. It sounded like moans, and I got more sedation for my efforts.

I switched to writing in the air, begging for my life. They didn’t get it. So, I began writing my plea backwards hoping they could get it that way. Nope.

At that point, I also started memorizing the ICU gossip shared over my body. I heard a lot 24/7 since I was treated like a piece of furniture. As I was not “really there,” it was okay to complain about my care while “having” to “move and dust me.” I heard that last phrase more than once.

I also heard allegedly funny staff arguments over what kind of vegetable I was in the intensive care garden patch.

In absolute terror at that point, I noticed a wall calendar across from me that didn’t say the month, but did say the date. I picked up that the top page read “TODAY IS 21.” I immediately started drawing in the air what the date was during rounds. No one noticed—not even when I changed the number as the week rolled around.

Except for a single nurse…

She began to work with me by my blinking. When she brought this up to the medical staff, the response was that my blinking did not fit the diagnosis. She couldn’t record my budding conversation.

We continued after her shift with ink on my fingers, a clipboard, and increasingly complex communication boards made from old file folders and markers.

Her loving work earned me a final session as to whether I was already “gone” or not. When I was asked if there was anything I wanted to say, I replied that I needed a divorce to get therapy.

No one ever doubted my presence again.

I still had to struggle for the most basic things like trips for follow-up care, food, water, getting stitches out, counseling, and maternity care. Yes, not too long after that I found out my “sterility problem” was going to be born in the fall. That son started college this past fall. Also, I have since earned another master’s degree. Obviously, I am thinking and writing for you to be able to read this now.

I believe Terri Schindler Schiavo is in a very similar situation to mine back before my son was born.

Anyone who is or knows a disabled woman should be very concerned. Disability can happen any time and anywhere due to illness, accident, or genetics. It is an equal opportunity minority—one that people can involuntarily join instantly.

Women who lose their caretaker status are particularly vulnerable when they need that same level of attention themselves. Indeed, most wards of public guardians are women with cognitive-impairments, precisely the group most likely to be starved and dehydrated across all institutional settings.

Therefore, know that supporting Terri’s right to live is in your own best interest. I am very proud to say I became an exceptional education teacher as a direct result of Terri’s inspiration during the October 2002 hearing when, once again, Judge George Greer ordered her death by starvation and dehydration.

Rus Cooper-Dowda is a teacher, minister, and writer. Currently, she is seeking a publisher for her new book, Today is 21 (working title), about both her and Terri Schiavo’s experiences.

A “Painless” Death?

Michael Schiavo insists that dehydration is “the most natural way to die.”
It’s more like torture.

Wesley J. Smith

Many who support Terri Schiavo’s threatened dehydration assert that removing a feeding tube from a profoundly cognitively disabled person results in a painless and gentle ending. But is this really true? After all, it would be agonizing if you or I were locked in a room for two weeks and deprived of all food and water. So, why should we believe that cognitively disabled patients experience the deprivation differently simply because they receive nourishment through a feeding tube instead of by mouth?

An accurate discussion of this sensitive issue requires the making of proper and nuanced distinctions about the consequences of removing nourishment from incapacitated patients. This generally becomes an issue in one of the following two diametrically differing circumstances:

Depriving food and water from profoundly cognitively disabled persons like Terri who are not otherwise dying, is a process that causes death by dehydration over a period of 10-14 days. As I will illustrate below, this may cause great suffering.

Not forcing food and water upon patients who have stopped eating and drinking as part of the natural dying process. This typically occurs, for example, at the end stages of cancer when patients often refuse nourishment because the disease has distorted their senses of hunger and thirst. In these situations, being deprived of unwanted food and water when the body is already shutting down does not cause a painful death.

Advocates who argue that it is appropriate to dehydrate cognitively disabled people often sow confusion about the suffering such patients may experience by inadvertently, or perhaps intentionally, blurring the difference between these two distinct situations. For example, when Michael Schiavo, Terri’s husband, and his attorney, George Felos, appeared on the October 27, 2003 edition of “;Larry King Live” the following exchange occurred:

King: When a feeding tube is removed, as it was planned [for Terri], is that a terrible death?

Schiavo: No. It’s painless and probably the most natural way to die.

Felos: When someone’s terminally ill, let’s say a cancer patient, they lose interest in eating. And literally, they–by choice–they stop eating.

Schiavo: Cancer patients, they stop eating for two to three weeks. Do we force them to eat? No, we don’t. That’s their choice.

Later in the interview, Schiavo reiterated the assertion in a response to a telephoned question:

Caller: Does it bother you that the death is so slow?

Schiavo: Removing somebody’s feeding tube is very painless. It is a very easy way to die. Probably the second best way to die, the first being an aneurysm.

Yes, it is true that when people are actively dying from terminal disease, they often refuse food and water. The disease makes the food and water repulsive to them. In such circumstances, it is medically inappropriate to force food and water into a person who is actively rejecting it. Indeed, doing so could cause suffering.

But this isn’t what is happening to Terri. She isn’t dying of cancer. Her body isn’t shutting down as part of the natural dying process. Indeed, she is not dying at all–unless her food and water is taken away.

What happens to non-terminally ill people with cognitive disabilities whose feeding tubes are removed? Do they suffer from the process?

When I conducted research on this question in preparation for writing my book “Forced Exit,” I asked St. Louis neurologist William Burke these very questions. Here is what he told me:

A conscious [cognitively disabled] person would feel it just as you or I would. They will go into seizures. Their skin cracks, their tongue cracks, their lips crack. They may have nosebleeds because of the drying of the mucus membranes, and heaving and vomiting might ensue because of the drying out of the stomach lining. They feel the pangs of hunger and thirst. Imagine going one day without a glass of water!

Death by dehydration takes ten to fourteen days. It is an extremely agonizing death.

Dr. Burke opposes removing feeding tubes from cognitively disabled people and so some might dismiss his opinion as biased. But Minnesota neurologist Ronald Cranford’s pro-dehydration testimony in the Robert Wendland case–Cranford also testified that Terri’s feeding tube should be removed–supports much of what Dr. Burke asserted. While Cranford called seizures “rare,” his detailed description of the dehydration process reveals its gruesome reality:

After seven to nine days [from commencing dehydration] they begin to lose all fluids in the body, a lot of fluids in the body. And their blood pressure starts to go down. When their blood pressure goes down, their heart rate goes up. . . . Their respiration may increase and then . . . the blood is shunted to the central part of the body from the periphery of the body. So, that usually two to three days prior to death, sometimes four days, the hands and the feet become extremely cold. They become mottled. That is you look at the hands and they have a bluish appearance. And the mouth dries a great deal, and the eyes dry a great deal and other parts of the body become mottled. And that is because the blood is now so low in the system it’s shunted to the heart and other visceral organs and away from the periphery of the body . . .

Most of the time, we never know for sure what a starved or dehydrated person experiences. But in at least one case–that of a young woman who had her feeding tube removed for eight days and lived to tell the tale–we have direct evidence of the agony that forced dehydration may cause.

At age 33, Kate Adamson collapsed from a devastating and incapacitating stroke. She was diagnosed as likely to develop a persistent vegetative state (PVS) but was actually “locked in,” that is, she was completely awake and aware yet unable to communicate. (Even so, doctors urged her husband to “let her go.”)

Because of a bowel obstruction, her nourishment was stopped so that doctors could perform surgery. Adamson eventually recovered her ability to communicate and authored Kate’s Journey: Triumph Over Adversity, in which she tells the terrifying tale. When she appeared recently on “The O’Reilly Factor,” host Bill O’Reilly asked Adamson about her experience:

O’Reilly: When they took the feeding tube out, what went through your mind?

Adamson: When the feeding tube was turned off for eight days, I thought I was going insane. I was screaming out in my mind, “Don’t you know I need to eat?” And even up until that point, I had been having a bagful of Ensure as my nourishment that was going through the feeding tube. At that point, it sounded pretty good. I just wanted something. The fact that I had nothing, the hunger pains overrode every thought I had.

O’Reilly: So you were feeling pain when they removed your tube?

Adamson: Yes. Oh, absolutely. Absolutely. To say that–especially when Michael [Schiavo] on national TV mentioned last week that it’s a pretty painless thing to have the feeding tube removed–it is the exact opposite. It was sheer torture, Bill.

O’Reilly: It’s just amazing.

Adamson: Sheer torture . . .

In preparation for this article, I contacted Adamson for more details about the torture she experienced while being dehydrated. She told me about having been operated upon (to remove the bowel obstruction) with inadequate anesthesia when doctors believed she was unconscious. Unbelievably, she described being deprived of food as “far worse” than experiencing the pain of abdominal surgery.

The agony of going without food was a constant pain that lasted not several hours like my operation did, but several days. You have to endure the physical pain and on top of that you have to endure the emotional pain. Your whole body cries out, “Feed me. I am alive and a person. Don’t let me die, for God’s Sake! Somebody feed me.”

Despite having been on an IV saline solution, Adamson still had horrible thirst:

I craved anything to drink. Anything. I obsessively visualized drinking from a huge bottle of orange Gatorade. And I hate orange Gatorade. I did receive lemon flavored mouth swabs to alleviate dryness but they did nothing to slack my desperate thirst.

Apologists for dehydrating patients like Terri might respond that Terri is not conscious and locked-in as Adamson was but in a persistent vegetative state and thus would feel nothing. Yet, the PVS diagnosis is often mistaken—as indeed it was in Adamson’s case. And while the courts have all ruled that Terri is unconscious based on medical testimony, this is strongly disputed by other medical experts and Terri’s family who insist that she is interactive with them. Moreover, it is undisputed that whatever her actual level of awareness, Terri does react to painful stimuli. Intriguingly, her doctor testified he prescribes pain medication for her every month during the course of her menstrual period.

Beyond the Terri Schiavo case, it is undisputed that conscious cognitively disabled patients are dehydrated in nursing homes and hospitals throughout the country almost as a matter of routine. Dr. Cranford, for example, openly admitted in his Wendland testimony that he removes feeding tubes from conscious patients. Thus, many other people may also have experienced the agony described by Adamson and worse, given that dehydrating to death goes on for about a week longer than she experienced.

At this point, defenders of removing feeding tubes from people with profound cognitive disabilities might claim that whatever painful sensations dehydration may cause, these patients receive palliating drugs to ensure that their deaths are peaceful. But note: Adamson either did not receive such medications, or if she did, they didn’t work. Moreover, because these disabled people usually can’t communicate, it is impossible to know precisely what they experience. Thus, when asked in a deposition what he would do to prevent Robert Wendland from suffering during his dehydration, Dr. Cranford responded that he would give morphine but that the dose would be “arbitrary” because “you don’t know how much he’s suffering, you don’t know how much aware he is . . . You’re guessing at the dose.” At trial, Cranford suggested he might have to put Wendland into a coma, a bitter irony considering that he had struggled over many months to regain consciousness.

The time has come to face the gut wrenching possibility that conscious cognitively disabled people whose feeding tubes are removed–as opposed to patients who are actively dying and choose to stop eating–may die agonizing deaths. This, of course, has tremendous relevance in the Terri Schiavo case and many others like it. Indeed, the last thing anyone wants is for people to die slowly and agonizingly of thirst, desperately craving a refreshing drink of orange Gatorade they know will never come.

This article was published originally in The Weekly Standard On-Line, 11/12/03. An updated version appears here with the author’s permission.

ITF offers a protective advance health care directive

In the wake of the Schiavo case, people are being urged to sign advance health care directives in order to establish their treatment wishes in the event that they become mentally incompetent due to age, illness, or accident. Unfortunately, not all advance directives are created equal. In fact, some can be downright dangerous.

A Living Will is the oldest type of health care advance directive. It is a signed, witnessed (or notarized) document sometimes called a “declaration” or “directive.” Most Living Wills instruct an attending physician to withhold or withdraw medical interventions from its signer if he/she is in a terminal condition and is unable to make decisions about medical treatment.

Since an attending physician who may be unfamiliar with the signer’s wishes and values has the power and authority to carry out the signer’s directive, certain terms contained in the document may be interpreted by the physician in a manner that was not intended by the signer. Family members and others who are familiar with the signer’s values and wishes have no legal standing to interpret the meaning of the directive.

Another advance directive, the Durable Power of Attorney for Health Care (DPAHC), is a signed, witnessed (or notarized) document in which the signer designates an agent to make health care decisions if the signer is temporarily or permanently unable to make such decisions. Unlike most Living Wills, the DPAHC does not require that the signer have a terminal condition.

An agent must be chosen with great care since the agent will have the power and authority to make decisions about whether health care will be provided, withheld or withdrawn from the signer.

It is extremely important that the signer carefully discuss his/her values, wishes and instructions with the agent before and at the time the document is signed. Such discussions should continue after the document is signed. It is also important that the agent be willing to exercise his/her power and authority to make certain that the signer’s values, wishes and instructions are respected.

While the DPAHC has a full page of warnings, signers might not be aware of the fact that, unless they specifically state otherwise, all food and fluids can be withheld or withdrawn causing the signer’s death. The same is true for hybrid documents that combine various aspects of the Living Will and the DPAHC.

In order to avoid problem areas contained in other advance directives, the International Task Force (ITF) has developed the Protective Medical Decisions Document (PMDD). It is a legal DPAHC, but with protective language and provisions.

For example, the PMDD stipulates that the signer’s agent does not have the authority to approve the direct and intentional ending of the signer’s life. Further, the agent may not direct that the signer be denied food and fluids for the purpose of causing the signer’s death by starvation and dehydration.

The PMDD also limits the use of photocopies to use for informational purposes only. For legal purposes, only documents with original signatures are to be considered legal. This provision protects the signer in the event he/she wishes to revoke the PMDD or designate another agent. The signer need only retrieve and destroy those documents that bear original signatures. Otherwise, retrieval could be impossible, since the signer would have no way of knowing how many photocopies had been made by doctors, hospitals, or nursing homes and to whom they had been given.

The PMDD is available in a Multi-State version for use in most states. It is also available in state-specific versions for states where particular requirements make a state-specific version necessary.

For more information or to order a PMDD packet, please contact the ITF at 800-958-5678.