In last month’s essay I discussed the political and external freedoms a human being possesses under different forms of government and had intended to follow it up with a discussion of internal freedom. This is the ability of the human being to deal with the vicissitudes of life in a constructive fashion regardless of external circumstances. Two events transpired subsequently which made this decision highly topical. The first one was the airing of the movie “Million Dollar Baby” and the other the Schiavo tragedy. They present different aspects of suffering and serve as good examples of how our society reacts to dying.

Martha and I hardly go to the movies any more because the fare tends to be atrocious. Furthermore, as a neurologist I have a high respect for the brain and don’t enjoy watching people, especially women, beating each other into unconsciousness.  But “Million Dollar Baby” had good reviews, Clint Eastwood is an excellent actor and a surprise ending was promised, so we went. By now the story is well known and I’m not giving away any surprises by summarizing it. Clint Eastwood, as Frankie, ran a training gym for would be boxers and a young woman by name of Maggie begged him to take her on as a student. He was reluctant to do so but eventually relented and she became a star on the women’s boxing circuit, earning considerable amounts of money. She had come a long way from her trailer home upbringing, and subsequent work as a waitress, to enjoy wide acclaim and the respect she had craved all her life. It had been her own achievement through grueling and punishing years of painful work of which she was justly proud. But when she thought that her mother would be grateful for the house she had bought for her she was rebuffed because all the woman wanted was money to spend rather than a decent house to live in. At the pinnacle of her career for the world championship fight Maggie was dealt a vicious and illegal blow that sent her crashing into a chair, which severed her spinal cord at the highest levels. When she regained consciousness, several days later, she found herself on a respirator and permanently quadriplegic. Frankie, who had become the father she never had, promised that he would always be taking care of her. He did in fact provide the assistance she needed, and the encouragement to make the best of a disastrous situation. She seemed to respond but when the family arrived and they only wanted her to sign her money over to them, something snapped. She lost her will to live and begged Frankie to do for her what she couldn’t do for herself namely terminate, what was for her, an intolerable existence. When he refused she severely bit her tongue so that she might choke but prompt medical care prevented the desired outcome.

Frankie had been a severely troubled person for several years who carried a burden of guilt for reasons we were not told. He went to mass daily but also annoyed the young priest no end with theological questions for which there were no genuine answers. Maggie’s’ request added to his spiritual dilemma. He felt that he was responsible for having made her into a star by giving in to her wish but he had also rendered her now a permanently disabled person dependent on artificial life support. Frankie tried to discuss Maggie’s wish with his priest but this particular caretaker of souls was not yet old and wise enough to be able to express anything other than standard theological platitudes that only added to Frankie’s guilt. Eventually Frankie sneaked into the hospital at night, terminated Maggie’s life in a loving manner and then disappeared forever.

The film has a profound impact on viewers because it raises the inevitable question of what we would want to have done for us by others, who indeed have our best interests at heart, when we are no longer in charge of our bodies. This is the point where our ultimate freedom comes in. We still have choices, limited as they are. We can do what Maggie did and what a great many of us in her situation might also do, or we can use the steely resolve that she exhibited in her boxing life to lend purpose even to a tragedy of this magnitude. Christopher Reeves comes to mind immediately. But when one puts one’s hopes entirely on regaining lost physical function, which is currently medically impossible and is likely to remain so for years to come, one will suffer inevitable disappointment. Even if stem cell research will yield positive results in this respect in future decades it will be too late for all the quadriplegic, ventilator dependent, patients who are ill now.

The fictional Maggie’s case and the real life quadriplegic patients are faced with a spiritual problem and the individual patient as well as society at large will have to come to recognize it as such and not pin  hopes entirely on physical recovery. Furthermore, we have here a clear example of the difference between pain and suffering. Maggie had no pain, before she severed her tongue, but she surely suffered. Although we commonly tend to lump pain and suffering into one phrase as if they were synonymous, they are not and this neglected distinction needs to be kept in mind. Pain is a physical sensation in one or more parts of one’s body which does lead to suffering by its perception and mental elaboration. How much suffering is associated with pain is not merely due to its intensity but also, and perhaps in our daily lives most importantly, the mental burden we add to it.

At this point I would like to invite the reader to the August 2004 essay on “Perception of Reality”. It discusses the difference between sensation and perception on a physiologic level and explains the basis upon which suffering arises and what can be done to reduce it. As mentioned at that time, sensory impulses from our bodies, or the external world, trigger responses in the appropriate area of our brain. These responses consist, in the normal individual, of two types: one is the primary, which is specific to the area that is stimulated and the other, a secondary one which elaborates on it and relays it to distant structures. It is the latter, which is tied to perception and adds the emotional quality. When the sensation is one of discomfort and/or pain it also gets relayed to the prefrontal lobes, those parts of the brain which make us truly human and which exist only in a rudimentary state even in the monkey. The prefrontal parts of our brain allow for planning and foresight, but are also responsible for ruminative, obsessive thinking. When our thoughts are allowed to dwell exclusively on past events or future expectations suffering will become inevitable. The remembered past was never as happy or unhappy as our imagination paints it and the unknowable future is likewise just that – unknowable. We tend to dwell on fantasies, regard them as reality, and poison our present lives to the detriment of the future.

Let us stay with the fictional Maggie for now. She had intact prefrontal lobes and instead of ruminating over the loss of functions, and past glory which was gone forever, she might have put them to use with Frankie’s help. There are things, even ventilator dependent quadriplegic patients can do. For a person with strong religious faith this may be easier but the human spirit need not be limited by theology and a broader spiritual perspective, above and beyond conventional religions, is potentially available even to agnostics. It simply needs the will to recognize this possibility and act on it. What might have been done in Maggie’s case? She had two options. If there was a shred of a will to live left it could have been nourished by spiritual sustenance with the help of an experienced guide. Indian philosophy which emphasizes, “I am not my body,” or appropriately modified to “I am not only my body” could have been helpful, especially if she had been provided with training in the control of the mind. The emphasis should have been not only on physical rehabilitation but also on that of mind and spirit. If on the other hand she was absolutely determined to die she might have asked Frankie to bring her a lawyer; dictate a living will, demand that no further efforts be made to save her life, that artificial respiration be discontinued, and that her money was to be given to a charity of her choice. This was her right as an autonomous human being and would have removed the burden of guilt she had placed on Frankie. I don’t know if such a step would have been successful if it were argued in the courts, but I am suggesting it because “the right to life” versus “the right to die” peacefully is currently not only a personal but legal and political problem especially because of the Terri Schiavo case.

Here we were faced with a real person who presented us with a medical, moral and legal dilemma. The tragedy of the case was not only what happened to Mrs. Schiavo but that the American public is inundated on hourly basis with allegations, rumors and conflicting opinions that did not allow the truth to emerge. The real problem is that we have been given too few facts and, therefore, too many opinions, most of which are based on emotion rather than reason and now on politicians’ desires.

Let me summarize what is actually known. The Internet is full of opinions, many of them quite spiteful, but there are also some facts to be gleaned. I shall rely now on Dr. Jay Wolfson who was appointed by the Court as Guardian ad Litem for Mrs. Schiavo and his duty was to provide a report and make recommendations to Governor Jeb Bush as to lifting an injunction against the removal of  Terri Schiavo‘s feeding tube. The report can be found under http://jb-williams.com/ts-report-12-03.htm. Although it is somewhat dated no new medical facts have come to light to invalidate any aspect of it and it presents the most precise summary of the case.

Terri Schindler was markedly obese up to age 19 when under appropriate medical care she reduced her weight from 250 to around 150 pounds. At that time she met and later married Michael Schiavo (1984). Since they desired children but Terri failed to get pregnant she and her husband went to an obstetrician, for counseling and fertility services, three years after the marriage. Terri’s weight had by that time dropped to 110 pounds and she was proud of her stunning figure. During the early morning hours of February 25, 1990 she suffered from cardiac arrest for reasons that are still being debated. By the time emergency medical crews arrived and she received a tracheotomy as well as artificial respiration her brain had been sufficiently long without oxygen to produce permanent irreversible damage. The cause of her cardiac arrest was a potassium deficiency. She had been engaged in an aggressive weight loss regimen with inadequate diet and drinking 10-15 glasses of iced tea each day.

Terri remained comatose with intermittent epileptic seizures and then emerged from coma into what used to be called “apallic syndrome” (absence of a functional cerebral cortex) but was renamed in the 1980s to “persistent vegetative state.” Since she was unable to chew and swallow, nutrition was provided by a gastric feeding tube. In June of 1990 her husband was appointed by the court as her legal guardian and there were no objections from the Schindler family. On the contrary excellent rapport existed between the two families and Michael as well as Terri’s mother were intimately involved in her care. When attempts at rehabilitation, were unsuccessful and a firm diagnosis of persistent vegetative state (PVS) had been made Michael took her in the fall of 1990 to California for an experimental treatment which consisted of the implantation of a “thalamic stimulator” into her brain. Deep brain stimulation was abandoned after several months when it was found ineffective and the Schiavos went back to Florida where Terri resided since in nursing homes. She had received excellent care as evidenced by the absence of bedsores during an illness that has lasted for 15 years.

The good relationship between the Schindler’s and the Schiavos broke down after Michael won a malpractice suit he had initiated against the obstetrician who had treated Terri for the infertility problem (1993). The settlement consisted of more than $750,000 for Terri – which was placed in a trust fund – and $300,000 for Michael. This was a watershed for the two families and the Schindlers instituted court proceedings to have Michael’s legal guardianship revoked. They also insisted that Terri was not in PVS in spite of having previously acknowledged the presence of that condition. The Schindlers’ petition was denied by the court on repeated occasions; because there was no evidence that Michael was negligent in Terri’s care.

In as much as there was no hope for his wife’s recovery Michael entered in May of 1998 a petition to have Terri’s feeding tube withdrawn. He had in the meantime begun a long-term relationship with another woman whom he wanted to marry and Terri had become a hopeless impediment. The court appointed a Guardian ad Litem, Richard Pearse, to review the request.  His recommendation was that unless the court found convincing evidence to the contrary the feeding tube should remain in place and a permanent Guardian ad Litem be appointed. Michael appealed this suggestion, Mr. Pearse withdrew from the case and the battle over guardianship and the feeding tube grew increasingly more acrimonious.

In February 2000 after having reviewed the available evidence Judge Greer ordered the removal of the feeding tube. The Schindlers fought the decision but the court set April 24, 2001 as the date on which the tube was to be removed. Court actions by the Schindlers persisted but on the mentioned date the tube was clamped rather than completely removed and the Schindlers filed a civil action as “natural guardians.” A temporary injunction was issued and the tube unclamped. The court also agreed to an additional medical review where both sides would select two expert physicians (neurologists or neurosurgeons) and agree between them on a fifth. If no agreement could be reached the fifth physician would be appointed by the court.

The neurologists provided by Michael had good academic credentials in their profession. The Schindlers provided one neurologist (Dr. William Hammesfahr) and a “radiologist/hyperbaric physician.” Since the families could not agree on the fifth neurologist he was appointed by the court. These three neurologists “presented scientifically grounded, academically based evidence that was reasonably deemed to be clear and convincing by the court,” while the evidence presented by the Schindlers expert witnesses was regarded as “substantially anecdotal.”

Another appeal resulted but the court ordered that the tube be removed on October 15, 2003 on which date the tube was disconnected for the second time. The Schindlers then appealed to the Florida legislature, which passed a bill on October 21, 2003 “to stay the disconnection of the artificial feeding tube and required, among other things, the appointment of a Guardian ad Litem to produce this report.” The tube was re-inserted the same day and the battle between the families, and now the general public, resumed.

Dr. Wolfson concluded in his report to the Governor that the weight of the evidence indicates that Theresa Schiavo “is in a permanent vegetative state with no likelihood of improvement,” and that the Florida court was clearly within its legal rights when it ordered removal of the tube. He also recommended that the Guardian ad Litem appointment be extended until a final resolution could be achieved.

This was not done, the battle persisted, increasingly absurd claims have come forward and the case reached its climax during the past weeks when another date for the removal of the tube was set. The U. S Congress got into the act and the President had to leave his beloved Crawford ranch abruptly on a Sunday night to sign the legislation that the case again be referred to the Florida Federal Court system. Senate Majority Leader Bill Frist also forgot that he was a cardiac surgeon rather than neurologist and showed that he was foremost just another politician.  The case then went all the way to the Supreme Court who mercifully refused to get involved. The gastric tube was removed but intensive public lobbying by the Schindlers continued with renewed efforts to get the Florida legislature, as well as the Supreme Court to reconsider their decision and have the tube reinserted. In spite of truly frantic efforts by the Schindler family, with massive collusion by the media, their attempts failed and Terri was pronounced dead on the morning of March 31.

What we were witnessing during these past weeks on TV was a society that had lost its rational bearings and it must have left the ordinary citizen thoroughly bewildered. We don’t expect to get the truth from politicians or lawyers any more but one might have expected it from religious authorities and bio- ethicists. On the other hand even these individuals cannot provide valid opinions unless the facts are clear.

This brings us to the crucial question: How can physicians who are supposed to know what a persistent vegetative state is and what recovery, if any, can be expected disagree to such a marked extent? The answer is simple. Those neurologists, of good standing in their profession, who have actually examined the patient, are in agreement that Terri was in a persistent vegetative state and needlessly postponing death by keeping the feeding tube in place was not indicated.

Precise guidelines as to diagnosis and treatment of patients with PVS have been published by the American Academy of Neurology, which is the main voice for neurologists in the country, and they specifically mention that continuation of artificial feeding through a gastric tube, after the patient has been definitively diagnosed as being in PVS is not indicated.  Terri’s condition clearly fell into those definitions so why should there be disagreement by neurologists, as reported in the press and on TV, about Terri’s diagnosis? The answer is that there was no disagreement by specialists who had actually examined the patient apart from Dr. W. Hammesfahr who had been seen Terri on request of the Schindler family.

I happened to see him being interviewed by Sean Hannity on the Fox News Channel, who has done an outstanding job in misleading the public. He introduced Dr. Hammesfahr as a famous neurologist who has done such outstanding work that he had been nominated for a Nobel Prize in medicine. Mr. Hannity could hardly let a sentence pass without informing us about this honor. His counterpart Alan Colmes who is supposed to provide the “fair and balanced” part was also so awed that he forgot to ask the most important questions as to who had proposed him, what had happened to the nomination and what the academic credentials of Dr. Hammesfahr were. At any rate Dr. Hammesfahr told us that he carefully examined Terri over a ten hour period, while others had spent only one hour; that a four and a half hour video was taken during the examination which documented that Terri was intermittently aware of her environment and could respond with voluntary action. The interview was frequently interrupted with showing the same few seconds of the video which purports to demonstrate that Terri smiled at her mother and that she followed a plastic balloon with her eyes.

Since I had never heard of Dr. Hammesfahr before I tried to look him up in the Directory of the American Academy of Neurology but found his name missing. I subsequently contacted the Academy office and they told me that he neither is nor has ever been a member. This is certainly curious for someone deemed worthy of a Nobel Prize in medicine. Thereafter I checked for his scientific work on PubMed, which is maintained by the National Library of Medicine and one of the positive aspects of our tax dollars at work, but came up again empty handed. He does not have a single publication in any peer reviewed medical journal in any field. He does exist, however, on the Internet. In his biography he is listed as having had training in neurology and neurosurgery, that he was Board certified in Neurology and has published medical information on an Internet journal. He is in private practice and not associated with a University. I can’t blame Judge Greer for having preferred the information provided by the other three Board certified neurologists, as well as that of the Guardian ad Litem Dr. Wolfson who testified to the absence of voluntary activity on Terri’s part. The only other neurologists who appeared on on our television screens were Dr. Cranford who has published extensively on PVS and Dr. Bambakidis. The latter was the court appointee and is certified not only in neurology but also clinical neurophysiology. Both physicians recommended the removal of the feeding tube.

The Schindler family and their supporters have succeeded to sow doubt and confusion but unfortunately they have not been of any help to their daughter or to the numerous other patients who linger in PVS all over the industrialized countries of the world. PVS is not a naturally occurring illness; it is a medically induced condition that resulted from our technology which enables us to keep death at bay for a given period of time. It is a disease created by our society and society will have to face up to its consequences. 

Let us examine what really happened and why. The moment one dials 911 for emergency medical assistance the so-called “health care industry” shifts into high gear. The patient loses his/her autonomy and becomes a number. The EMS technicians are duty bound to apply resuscitative measures and thereby initiate a series of events that are difficult to reverse. Advanced medical directives e.g. living wills, tend not to be available in young adults and a loving family will initially insist on continuing life support which includes artificial respiration and nutrition. If the family after some time agrees to the futility of the effort all is well, support is withdrawn and the patient is allowed to die. But here is the problem; family members may not agree among themselves, especially when money is involved, as was the case in the Schiavo situation. Although both sides to the dispute probably had the best interests of the patient in mind one cannot help but wonder whether the case would have assumed such proportions had the malpractice suit either never been filed or been denied. With the husband as legal guardian whatever is left of Terri’s trust fund would probably go to him or if he had lost guardianship, as the Schindlers desired, it would have gone to them. Churchill said that, “In war the first casualty is the truth,” and this is what we have also witnessed in this case. It was money that drove the families apart and will continue to do so. This is also the common denominator between the fictional Maggie and the real Terri. But otherwise they present a completely different aspect of pain and suffering. Quadriplegic patients can be in pain and they certainly suffer, PVS patients cannot feel pain and cannot experience suffering. If this simple distinction would come across for the “right to die,” versus “right to life” proponents we would have made a step forward towards a rational society.

Let me now explain what I would have done, above and beyond a clinical neurological examination and CT or MRI scans, had Terri been admitted to the hospital where I was in charge of the electrophysiology laboratory. I would have made sure that the EEG was not contaminated by movement of the patient, as had been alleged by Dr. Hammesfahr, in Terri’s case. Subsequently I would have performed evoked potential recordings in the same manner as I reported in an article on “Brainstem Death” in 1985. An absence of expected responses would have provided objective evidence for the cessation of higher cortical functions. I have not come across any information whether or not evoked potential recordings had been carried out in Terri’s case. But these relatively simple tests, rather than a PET scan which is only available in very few facilities, could have gone a long way to settle the doubt whether or not cognition existed. They could also have been repeated in any competent teaching hospital, if another opinion had been requested. This would have settled the question whether or not Terri was in any position to have wishes.

Recently we were told that Terri intended to say “I want to live.”  This assumption was based on repeated coaxing to utter that phrase and a grunt of “Aah Wah” resulted. This was interpreted by the family as, “I want to live.” Did she really? Would you want to live in a totally incapacitated situation, dependent on others for every one of your bodily needs? Would you want to live with a minimum of consciousness that makes you aware of your condition and its hopelessness? I doubt it, but that is precisely what the advocates for prolonging Terri’s PVS were asking for.

Can some good come out of the Schiavo tragedy? Yes, under several provisos. We should discuss with our family members our wishes in regard to the care we want to receive if we were to be rendered unable to make them known when tragedy strikes. A living will alone, important as it is, is not enough unless there is agreement within the family. The will can always be contested and lawyers are not in the least averse to making a buck. If we do not want to end up on a respirator after cardio-respiratory arrest we also need to inform the people we live with not to make the 911 call that mobilizes the EMS and automatically triggers artificial life support. It is more difficult to remove these systems once they have been started and full functional recovery is highly unlikely. If there is agreement within the family on these important matters of life and death and if in addition financial aspects are agreed on beforehand we don’t need lawyers, politicians or ethicists to ensure a death with dignity and a minimum of suffering. Death is a normal, natural and inevitable event that needs to be stripped of the fears surrounding it, as well as the potential secondary gain by others. Once this premise is accepted all else will fall into place.

Can Terri and her case now finally be laid to rest? Hardly; law suits will be filed, Congress will pass laws to further interfere with good medical practice, books will be written, movies will be made, lawyers will make money, an industry providing “do not resuscitate” dog tags or bracelets will spring up and Terri will become the Patron Saint of the extreme wing of the right to life group.

The fact that her illness had been self-inflicted by a desire to lose weight that had gone to absurd proportions will not receive much attention by the media. Yet this is the crux of the case and of the suffering she has thereby inflicted on her and her husband’s family. This was the original cause; her celebrity status resulted from a fight over money between the Schindlers and the husband. Greta van Susteren, who follows the Hannity and Colmes show on the Fox News Channel, had on March 30 the attorney who had won the malpractice suit for Michael as her guest. Here we learned for the first time that the Jury had regarded the physician as being at fault for only 30% of her condition (not having recognized that she suffered from bulimia), while 70% was due to Terri’s behavior. If this were publicized it might put a dent into the efforts of some people to turn her into a martyr.

What this case really proves is the truth that was enunciated 2500 years ago. Suffering is caused by desire! Since we can’t live without desires I would like to reformulate it to “craving.” It is the small mental step from “I would like to have,” to “I have to have,” that starts the process of suffering. At first it is limited to the person who craves but subsequently grows inevitably to involve family, friends and in extreme cases even entire societies because of ill considered actions that are supposed to remove suffering. As has been mentioned repeatedly in these pages, we can’t do anything about what lawyers, judges and politicians do to us, but we can and should avoid in our lives the above mentioned small change in our mental attitude. This is the only way to achieve peace of mind regardless of circumstances.