blog.bioethics.net

"Shortly after Michael Schiavo’s efforts to have his wife’s feeding tube removed, an independent guardian was appointed. The guardian, attorney Richard Pearse, reported to the judge in the case that Mr. Schiavo was not a credible witness to his wife’s end-of-life desires because he waited years to make his claim and because he stood to benefit financially if she died. Pearse was removed as guardian, at Mr. Schiavo’s attorney’s request, and another independent guardian was not appointed."
I found this qoute from an article entitled "Disability is not a reason to die" In fact, the judge eventually appointed himself as her guardian ad litem. That doesn't sound right. Just as a newborn would be appointed a guardian ad litem in a legal matter, there should be legal representation who only has her best interest in mind. It's also MORE than odd that Mr. Schiavo never mentioned during the malpractice trial ($700,000 award) that Terri did not want to be hooked up to a respirator (which she was on during the trial by the way). In fact, he insisted he was going to personally care for her the rest of her life. He and his attorney estimated she would live to be 51. Shortly after the trial, he had her moved to a hospice, which is where terminally ill people go to die, rather than to a rehabilitation facility where disabled people learn how to live within their new limitations. The rehabilitation he promised during the trial has not been provided for her. Noone was able to find out if Terri could learn to feed herself because Mr. Schiavo forbid the rehabilitation that could have enabled her to do so. He used her to get the money and once that was accomplished he began his quest to end her life. It's so obvious in every action he's taken that he did not and does not care what Terri wanted.
I am appalled that other people just don't care about this woman being blatantly neglected, abused, and now legally murdered. It's sick that they vote on the little "feeding tube" polls without having done any research into the public records of what has really been done to her. I am astounded whenever someone lumps her into the same class as terminally ill patients. I support a terminally ill patient's right to die in a manner that he or she finds acceptable. However, after considering all the facts when it comes to Terry Schiavo and her feeding tube, I've decided that her situation is far removed from a right-to-die case and disconnecting her feeding tube is murder. So while I sit here contemplating the reality that nothing is going to be done to prevent this tragic crime, I cry for Terri and her family. Out there in the real world, modern society's sheep move on to safe topics of television shows and baaaasketball. While the water cooler drips lazily behind the depressingly ignorant, average societal sheep, Terri's body begins to enter the final stages of dehydration that will ultimately end her life.

- by on Mar 25, 2005 at 6:09 PM | link

Doctors, Judges and Objectivity
The entire Terry Schiavo case has swung on the definition and application of a phrase – persistent vegetative state (PVS)…essentially a medical term for ‘brain dead.’ The legal appeals by the Schindlers have consistently run into legal opinion the goes back to the same adjudication…that the court found that Terry had expressed the desire not to be kept alive if she were to be ‘like that.’ There have been doctors who have come down on the side of the diagnosis of PVS, and there have been doctors who have expressed some doubt about the diagnosis. The findings of the courts have rested solidly on the side of the diagnosis of PVS, and all findings during the past several weeks have essentially said that the original findings were that Mrs. Schiavo had expressed that desire, and therefore they are comfortable with the direction of allowing the corpse to die.
The courts, apparently content with the diagnosis of PVS have also been consistent with respect to what was allowed to occur for Mrs. Schiavo…no trips outside of the hospital (why would you want to carry a corpse on a visit?...and besides, it might be an occasion for someone to kidnap the corpse), no therapy (why waste the settlement money on a dead person?), no television (although standard fare in most hospice/hospital rooms), etc.
This is based on an assumption that such a diagnosis is based solely on objective fact solidly grounded in scientific medical basis. A neurosurgeon once told me that a cat-scan of a newly dead brain looks exactly like a cat-scan of a live functioning brain. There has been a lot of ‘opinion’ expressed by experts solely on the basis that the diagnosis was correct…that Terry has had no ‘experience’ for the past fifteen years, since she is effectively dead. She will experience no pain, since she is incapable of experience. This is the rub in the whole flurry of legal activity. Her parents, and many others do not believe that she is in fact, dead. She is at worst, ‘minimally conscious.’ This is a different diagnosis that several medical experts have expressed more recently.
The difficulty in dealing with brain injury is that different functions are affected in each injured brain. The brain is marvelously complex, and there are no medical ‘experts’ who fully understand much of how one functions. They may be able to point out areas that seem to be responsible for individual functionality, but they do not understand how consciousness arises, how will power is generated, how feelings come to be, how initiative works, nor, how reasoning is affected by injury to different interconnected areas. The best they are able to do is to develop descriptive phraseology for various observations from individuals or groups of individuals, and then apply them when confronted with similar observations from others. Yet, there is a body of knowledge that seems to indicate that diagnoses of PVS are ‘wrong’ a significant percentage of the time.
Then there is the part of the assumption that a medical expert is expressing an objective observation, not colored by personal feeling (not to mention the assumption that the opinion of the court (judge) is purely objective as well!). This is where my personal experience comes in. I have a thirty year-old son, David, who lives with us. Under different circumstances, he could have had Terry Shiavo’s ‘experience.’
He was severely injured as an eight-and-a-half year old after being struck by an automobile. He was in a coma for six weeks, and when he came out of the coma (our opinion), the only thing that ‘worked’ that could be observed was that his right eye would track movement in the room (the left eye was somewhat injured). There was no reliably discernable expression apart from that eye. We, his parents, in faith and hope, believed that there was more. We were in German hospitals at the time while on military duty, and while his physical health improved, there was little change in what you could see. We had cat-scans and little else. The attending nurses often felt that there was intelligence in that gaze, and he seemed to fixate on television programs playing in the room …especially certain ones. Some (along with us, but we were far from objective) seemed to detect attempts to smile at certain programs or when people talked to David.
Seven weeks after he ‘came out of the coma,’ in the process of transferring us to a stateside hospital in a compassionate re-assignment I had my first chance to talk to an American doctor and ask lots of questions. This is also when I ran into medical diagnosis based on observation, but it was not the last time I would be troubled by what I was hearing. The Army neurosurgeon at Landstuhl Army Hospital, a Colonel with 26 years of service, stopped me after several questions with one of his own. “You understand, don’t you, that there is nothing left of the child you knew before the accident?” My answer was, “No, doctor, I don’t understand that at all!” His reply was “Well, you need to understand it. He is still in a coma, and he may never come out of it. It is now three months after the accident. Where he is at six months will tell you where he will be at one year, and where he is at one year will tell you where he will be at two years. Severe brain injury such as your son experienced has little, if any further recovery after two years.” I did not totally blow him off, but I realized that much further conversation with him was useless. I also later found out that a neurosurgeon was not the right person to be asking those questions anyway. A neurologist, in most cases, would be a better person to be talking to, if one were available, and preferably a rehabilitation neurologist. It would be a while yet before we met such a person.
We ended up at Keesler USAF hospital in Biloxi, Mississippi, and we were there for 45 days with David. There was not much they could do for us there, and we moved David to Children’s Hospital in New Orleans, Louisiana, where he spent the next 100 days in intense rehabilitation. They did do an EEG (Electro-Encephalagram) at Keesler while we were there…a benchmark for us, of sorts. It showed severely affected electrical brain activity tied to visual and aural stimuli, with different characteristics between right and left hemispheres of the brain. .
Children’s Hospital had (and still has) a brain injury rehabilitation unit, started and run by Dr. Joseph Nadell, a neurosurgeon, for children who had either trauma or birth-related brain malfunctions. Their approach was to bombard the patients with the teamed disciplines of Physical Therapy (range of motion and some function) and Occupational Therapy (functions of the upper body), plus separate Speech Therapy (any form of communication), as well as a wide variety of unconventional ‘therapies’ such as entertainment, game participation, music, Monday visits from members of the New Orleans Saints, and even small animal therapy Fridays (including a baby elephant!) from the New Orleans’ Audubon Zoo, only two blocks or so from the hospital.
They had remarkable successes with some children who had been pronounced brain dead shortly after accidents. There were some that also had remarkable lack of success. The conventional wisdom was that the younger the child at the time of injury, the better the chance of recovery. We met and saw a tremendously wide variety of experiences from patients and parents while we were there. Hope and prayer were a big part of many of those experiences. We visited every Wednesday evening and every Saturday-Sunday. New Orleans was exactly 100 miles from our home in the Biloxi area.
At the end of our time there, as we were preparing for discharge, we were confronted by a disturbing preliminary discharge diagnosis from the PT-OT Team that had worked twice a day, five days a week with David. They saw no evidence of consciousness. Even the Speech Therapist had a similar preliminary diagnosis. She was sympathetic to our statements that we had seen this or that occur, but she said she had not seen anything similar in all her sessions with him. By this time we were smart enough about insurance (even the military’s CHAMPUS program) to realize that this sort of diagnosis could be a killer for any further authorizations of therapy. They had run David through many exercises, and during much of it, they would give him commands to move this hand, that finger, that foot, etc. No responses noted.
At about this same time, on one of the Wednesday evening visits, I was with David, my father with me for a chance visit. I was working to get any sort of response, sticking my tongue out and moving it from side to side trying to see if he could not imitate me in some small way. At one point, I started to joke with him (not unusual for our visits), and pulled my mouth apart with my pinkie fingers, stuck my tongue out and made a weird noise. David spontaneously broke out in a huge, ear-to-ear grin! This was the first definitive facial movement he had made in more than eight months since the accident. My Dad said he wasn’t sure who had the bigger grin at that point, David or I! He could repeat it for other things. I couldn’t wait to share this with his therapists!
I was shocked at the reactions when I did share, however. The PT-OT team essentially blew me off. They had made their diagnosis. They explained that what we were seeing was essentially akin to a new-born reacting to the sights and sounds…the lilt and excitement in our voices…there was no intelligence behind any of it! I next saw his Speech Therapist. This time I was more careful. I knew her to be a very clinical person, and having a technical background myself and understanding the importance of clinical observation, I set up some simple demonstrations for her. I explained what we had seen, and then went behind David. I

- by Dennis VanLiere on Mar 27, 2005 at 12:04 AM | link

Continued Comment:
In a monotone (no lilt in my voice) I repeated some of the corny jokes my father-in-law was famous for, and that David had always enjoyed. David smiled at the right spots…the punch-lines! That was enough to convince her. We were able to show that he reacted to both aural and visual stimuli, with some intelligence. She changed her diagnosis, but was unwilling to go very far about what it meant, since we were essentially at our last day or two before taking David home for the first time in more than eight months.
Once home, we tried many things with David. One of the things we tried was a home-made communication board (which we were later to find out had a name – ‘E-Tran’) with words or letters or numbers in the quadrants. We found that David had retained his ability to read and to recognize numbers by having him correctly look at things we directed him to…Yes, No, Up, Down; A, B, C, D; 1, 2, 3, 4; etc. We tried pictures of various things, and he could correctly look at the correct choice every time. A few months after discharge we took him back to New Orleans when we had some bills to deal with. We showed several of the staff what we had been able to do with eye-gaze, and they were astonished. It was more of an ‘I told you so,’ visit, as we were not ready to even think about more formal therapy at that point, yet.
In the months that followed, a physical therapist who began working with David in our home suggested that we might consider taking David to Mississippi Methodist Rehabilitation Hospital in Jackson, Mississippi for foot-drop surgery (a common need for traumatic brain injury (TBI) patients involving tendon releases to keep foot deformation to a minimum). He knew and had worked with their chief surgeon, who also was involved with the rehab program there. While they did not usually work with pediatric patients, they made an exception for David based on our therapist’s recommendation. They did the surgery, but more than that, they connected us with a Pediatric Psychologist who worked up a modified Peabody IQ test based on our E-Tran approach to communication. He administered it in a very clinical approach, but in some sensitivity to David’s tendency to appear fatigued after 30-45 minutes of work. He was able to determine a floor IQ of at least 70 for David. He felt it might even be a bit higher due to some ‘wrong’ answers at the end of some sessions which David often got right at the beginning of the next session. An accurate administration of the test does not allow for retaking questions. This was great, and it would open doors for us later.
There was one other disturbing experience at this hospital however, which has bearing on objectivity assumptions. David had a room-mate while we were there. It was a young biker who was brain injured due to bad drug reactions…he had done it to himself. He had some speech, a lot of emotion and from our reaction to him and his family when we visited on weekends, a fair amount of intelligence remaining. His young wife was having a hard time dealing with what she saw happening to him and from him, and toward the end of our time there, was in the process of leaving him with their child, which had a severe effect on him. The Resident on the service made a comment to me one day that there was ‘so much more to work with in David than in his room-mate.’ This about a young boy who had been tragically injured, but still had no control over anything but his eyes and mouth, and no speech, versus a young man who had injured himself with destructive behavior, but who had some speech, some control over hands and arms, but still looked like a biker. Between dealing with his condition, his wife leaving him, and other factors, we learned from a relative we had met there that sometime after our discharge, this room-mate had lost the will to live and had died.
The other thing that must be addressed with respect to brain injury rehabilitation is that brain injury is really an unknown with respect to what is possible, and with respect to how long it may take to see what is possible. The more therapy given, and the amount of time and variety of therapy are very important for end results. Our Army Colonel’s ‘diagnosis’ is one counter-example. His observation about things being fairly static after two years has been proven wrong in the years since. Significant change can take place long after a brain injury. David has recently gained the ability to suck from a straw, more than 20 years from the accident. It is my experience that very few doctors get close to a patient (To maintain objectivity? Due to time and income demands?) to really observe what may be going on behind the effects of injury, but it is also my experience that this may be very necessary to really see whether something is going on or not. Sometimes even the ability to observe something may take a long time (eight months in our case). Also, even with experts, something as obvious as eye-gaze may be overlooked.
My main observations vis-à-vis Terry Schiavo are that brain injury results are not always the simple objective assessments we’d like to believe are possible; that physician diagnoses are often limited by the kind of observation available (time and circumstance being limiting factors) and the kind of brain injury effects that are present, even when someone spends a lot of time with a patient; and, that the diagnosis presented may not always be totally objective. The diagnosis in turn can severely limit what is tried and even what is expected by others, including therapists, family, judges, etc. What is tried with respect to therapy, or even what is seen and recognized is often limited by one’s expectations. Expectations are affected by past experiences and perhaps even by one’s own ‘feelings’ about such things as quality of life for both the patient and the patient’s family. The patient’s family will in turn be affected by their personal desires for the present and the future, sometimes focused on the patient, and sometimes more focused on oneself. I have seen remarkable faith, hope and love work their way out in dedication to patients who have no hope at all, and I have seen remarkable abandonment of patients who face a drastically changed future due to their injuries and functional limitations.
Even the concept of ‘quality of life’ carries a lot of heavy baggage with it. David’s life with an IQ around 70+ and without much physical control of his body is certainly drastically different than what might have been for a child with an IQ of 140 in the Talented and Gifted program at school and full of life and wonder. Our lives as parents are certainly much different than they might have been. And yet, I believe that there has been significant quality of life for all three of our lives, as well as for the lives of our other children and our extended families, as a result of David and how he is. He and his cheerful outlook and responses have affected the lives of his teachers, therapists and those who work with him at the Sheltered Workshop he attends. He has affected the lives of those in the churches we have been part of. God has blessed us with a significant level of quality and sensitivity that I would not part with. I’ve often said that while I would not choose to take on the experience, having gone through it, I would not give any of it up.
The National Head Injury Foundation was started around the time that David’s injury took place and first had as its motto “Because Life after Head Injury is never the same.” This was changed within a few years to a more positive “Because Life after Head Injury may never be the same.” This allowed for the possibility of even full recovery to be held out to those dealing with brain injury.

- by Dennis VanLiere on Mar 27, 2005 at 12:06 AM | link