X-Message-Number: 2922 Date: 19 Jul 94 20:41:13 EDT From: Mike Darwin <> Subject: SCI.CRYONICS Dehydration Ben Best writes: <<My understanding is that Jerry underwent considerable mental deterioration during the last months of his life. Dick Jones underwent a similar deterioration and, in fact, it has been said that Jones' dementia is what allowed his relatives to gain control of so much of his money. My question is, why could not Jerry or Dick have starved themselves to death like Linda Chamberlain's mother did? Thomas Donaldson sued for the privilege to be cryopreserved before brain cancer had done too much damage to his mental faculties. Wouldn't AIDS patients prefer to be frozen before brain deterioration becomes too serious? What was different about Linda's mother Arlene? Paul even raised the possibility of going to Michigan with a suspension team to take-over from Dr. Kevorkian (who may or may not be qualified to sign a death certificate). >> Ben has raised a difficult issue which I will do my best to tackle. I am writing a book with Charles Platt on Standby (in fact I have 6 chapters done) and nearly two chapters of this book deal either directly or indeirectly with the issue(s) Ben raises. Yes, Jerry did deteriorate very substantially mentally before he experienced cardiac arrest. When I first talked with Jerry he was still reasonably oriented and expressed a desire/determination to dehydrate when his quality of life deteriorated sufficiently. But there is a problem here, a major problem and one which will recur again and again. And it is one to which *any* of us may be susceptible. How does Jerry differ from Arlene Fried or Dr. Donovan (both Alcor patients who decided on passive euthanasia by dehydration)? The answer is easy: primary brain disease. What happens when you have a patient suffering from brain disease is that you end up with *two* people. Person A and person B. I'll give you a concrete example from my clinical experience in cryonics. Mr. X was a hydrogeologist, highly intelligent, very structured, and very oriented towards problem solving in a rational, logical way. When I first spoke with him he had just undergone surgery to remove a brain tumor -- in his case a glioblastoma multiforme (the most virulent and deadly of brain tumors: nobody, and I mean *nobody* survives this one). We spoke at some length about what his clinical course would be like. I explained to him what his doctors would not (what in fact they quite rightly, for the average patient, saw no reason on earth to explain) about the course his disease would take. I knew his tumor location and I knew the problems he had experienced before the tumor was debulked. I told him his situation would progress something like this: 1) He would do reasonably well for a period of some months. His quality of life would be very high and in fact he would find it almost impossible to believe that he was sick or that he was going to die. This would be a very cruel and misleading period of time. 2) As the tumor progressed the *first* thing to go would be the very faculty he would need to understand that the tumor was progressing: his judgment. In other words, he would not be the last to know: by virtue of the tumor's location he would be virtually guaranteed of *not* knowing what was happening to him at all. 3) I explained that his carefully determined decision about when to dehydrate would be meaningless because the person who would be confronted with making that deci *first* thing to go would be the very faculty he would need to understand that the tumor was progressing: his judgment. In other words, he would not be the last to know: by virtue of the tumor's location he would be virtually guaranteed of *not* knowing what was happening to him at all. 3) I explained that his carefully determined decision about when to dehydrate would be meaningless because the person who would be confronted with making that decision would be unable to. That person would have much of Mr. X's memory and personality and a fair amount of his was anxious to use his remaining time to finish unfinished business and spend time with his wife, whom he obviously loved very much. 4) I could tell that Mr. X did *not* really believe me. How could he? It was just too horrible to be true, and besides everybody believes that *they will know when something like this is happening to them.* 5) Wrong. 6) Mr. X deteriorated exactly as I said he would. He became more emotionally labile and latched onto several questionable cures, including psychic imagery, various kinds of "psychotherpy" aimed at freeing up repressed feelings that were the root cause of his disease and so on. It was my impression that Mr. XA would not have for a minute entertained that these would work. However Mr. XB was quite convinced not only that they might work, but that they *had worked.* While he was still able to be Mr. X in many ways, he was quite child-like in others. His wife ( a committed cryonicist) , who was very distressed by all of this, was hardly going to tell the man she loved "Honey, for your own good we are going to lock you up in your bedroom, chemically and physically restrain you so you don't break out, and we are going to starve you to death and deprive you of fluids so you can get a good cryopreservation." Would Mr. XA have wanted her do this? Probably. But Mr. XB would be pleading for his life, begging her not to. In my considered opinion any court who found a wife restraining her husband to the bed to starve him to death would lock up the spouse, her helpers and throw away the key! And keep in mind, that such dying does not go in a vacuum. Mr. X was being visited by home hospice nurses, seeing his physicians, and so on. Somebody has to ceritify death, after all. Can you imagine being a hospice nurse and coming in and seeing your patient tied to the bed in psychiatric restraints pleading and crying and begging for something to eat and drink while his wife quietly informs you that "we're starving him to death to protect his brain structure so he can be revived when their is a cure for his tumor. And, were Mr. X in his right mind, he would want us to do this!" SURE! As it was, Mr. X became both violent and paranoid near the end and accused his wife of trying to kill him by poisoning -- which she most assuredly was not trying to do. In fact Mr. X was at a resort at the time and was eating and drinking heartily. Fortunately, he developed pneumonia of a viral origin and expired quite rapidly after the onset of frank dementia. Mr. X never had the opportunity to dehydrate. 6) Dick and Jerry were variations on this theme. One of things that tends to happen to people in general as they become increasingly debilitated is what I call the "lobster in the pot" effect. For instance, if I took the average 16 year-old and suddenly made him wrinkled, toothless, sore of joint, fogged of mind, impotent, etc. he might well kill himself! But let that happen to him over 60 years and its no problem -- or less of one anyway. The same is true of terminal illness. At the start it is very easy to say "I'll draw the line here!." But as you approach or reach your line in the sand you are far more likely to say "I'll draw the line just a few inches further along." After all, I can still read.... or watch TV.... 7) Then there is a special problem for cryonicist: Not so much that it is unique to cryonicists but that it occurs with greater frequency amongst them. This problem, put bluntly, is the greatly increased frequency of a naked, quivering, totally overwhelming FEAR or terror of death. I have observed this in about 30% of dying cryonicists who I have had contact with during the terminal phase of their illness (The great physician William Osler puts the number at 2 out of the 500 patients he systematically evaluated (Science and Immortality by William Osler, 1905, Houghton Co., Boston) . I have certainly observed a comparable degree of fear in noncryonicists -- but not nearly so often and would put my numbers at far closer to Oslers. Here I shouls state my qualifications to make this statement: a) I worked as a volunteer during my high school years at a Catholic nursing home called Little Sisters of the Poor. I saw quite a number of people die there. b) I spent about 8 years doing chronic and acute hemodialysis on a stable patient population, about 50% of the patients I came into contact with died and I had the opportunity to spend many hours talking with most of them. c) I have done a number of standbys and counseled a number of dying cryonics patients -- probably more than anyone else in the world, although this number is still small in absolute terms -- probably less than 20. Such total, overwhelming fear paralyzes the intellect. It is by definition unreasoning. Coupled with a primary brain disease such as tumor or toxoplasmosis it is all but a virtual guarantee that the person will end up demented and in no position to forego food&fluid. Perhaps, if people are interested, I will post a few Chapters from my book which deal in greater detail with this problem. My point here is that the medical surrogate and health care personnel caring for the patient is not going to be in any position, moral, legal, medical, *or* emotional to override the "patient's" wishes. I "spoke" with Jerry White "B" a few days before he went down. He was almost mute at that point (this man who spoke half a dozen languages!) but he was able to respond appropriately. While he was very compromised intellectually, he was also very resolved to stay alive. His medical surrogate, a cryonicist, was deeply torn about what to do. I think she did the right thing which was to continue to provide life supporting treatment until Jerry reached the point that both his medical staff (home nurse and personal MDs) and his family felt that there was nothing more to be done. This was very late in his illness and there is no question in my mind that he sustained real, probably irreversible, loss of *some* identity related information. But, given the circumstances, I saw no other reasonable alternative. I have sitting here on my desk next to me a book entitled ATLAS OF NEUROPATHOLOGY, Second, Revised Edition by Malmud and Hirano. I would suggest that committed cryonicists go and get such a book at their nearest medical library and *look* at the end-stage lesions in brains which occur in brain tumor, stroke, toxoplasmosis, Alzheimers, etc. The Malmud book is in my library because I got it cheap. I got it cheap because it was written before CT and MRI and thus did not sell well because while there are lts of great pix of autopsy material and correlating EMs and histology, there is no correlating MRI and CT. This makes the book fine for me, but much less useful for the clinician who wants EM, histo- and gross pathology correlated with MRI and CT (thus I got a new $120.00 textbook for $29 from Barnes and Noble). I would suggest cryonicists consult other books with color plates (autopsy) and MRI-CT correlates. What you will see in the pages of such a book will truly turn your stomach. We aren't talking about little lesions here. The smallest lethal gliblastoma multiforme lesion usually consumes 1/4 to 1/3 of the cranial vault and it destroys by compression a larger area of tissue surrounding it. These tumors are baseball-sized at autopsy or even larger -- often larger. Ditto for the lesions of cerebral bleeds, stroke, and so on. You can count on a least 15% to 25% of patients presenting for cryopreservation having such lesions (most through ischemic stroke, rather than through neoplastic or infectious process). So, what do you tell a patient with HIV who has gut failure and wants to go on total parenteral nutrition (TPN)? Do you you tell him, "listen, if you do this you may get 6-months of really good quality life (I've even seen guys go to the gym and work out and build up muscles on TPN!!!!) but you may well die of AIDS dementia or toxo or TB menningitis? " What would *you* do in such a situation? It is easy to say now, but in my considered experience it ain't so easy when you get there. As to using Kevorkian the following points apply: 1) Kevorkian's license has been revoked in all states where he was able to practice; most recently the California Medical Board revoked his California license. He cannot pronounce. Further, a medical license does not give a physician authority to certify a death as legal and proper contrary to the law. Murder is murder and an M.D. doesn't change that -- not even if the M.D. is the murderer*. (*Note: I use this word in the legal sense in which it is being used in Michigan to charge Kevokian) 2) Kevorkian is assisting with suicide and suicides are, in most places, autopsied. An assisted suicide would almost certainly be autopsied since it involves *criminal* activity (although this is being tested in Michigan's courts). 3) Going to the Netherlands is not an option. Euthanasia is available only to Dutch citizens and is still considered homicide and in most cases autopsies are performed. 4) Legislation to make assisted suicide legal when and if it comes will still probably include autopsy as a quality control check on those who certified the patient terminal. They still also will probably be considered homicides, although legal ones. I hope this answers your questions. Mike Darwin Rate This Message: http://www.cryonet.org/cgi-bin/rate.cgi?msg=2922