X-Message-Number: 6837 Date: 01 Sep 96 17:10:17 EDT From: "Steven B. Harris" <> Subject: SCI.CRYONICS: More History (part II) Appendix (see previous message): Below is a portion of a letter contemporary to the events discussed, from me to Alcor CEO Steve Bridge and directors, containing journal extracts: ---------------------------------------------------------- Date: Feb 25, 1993 From: Steven B. Harris To: Steve Bridge & The Alcor Board of Directors Gentlebeings: I've been asked to give some kind of chronology of events during the recent suspension [standby] from my viewpoint, along with comments and recommendations. Here they are, without polish. I'm also recently in receipt of an offer of an Alcor staff position (of sorts), tendered by Steve Bridge. It seems fitting that I reply to these all at once. First then, here are the relevant events as I recorded them in my journal, with some editing. I was aware, of course, of the disappearance of one of Alcor's members in the middle of the week about Feb 10 or 11, and that he had been suicidal before disappearing. It wasn't until Saturday that I learned that he had turned up in ***** (a city near Ft. Lauderdale), and that his mother had not called Alcor, and had in fact LIED to Alcor about where he was (Alcor had been called by an independent person in the hospital, on the basis of the [Alcor member] nametag). Mrs. *****, obviously, was not co- operating with Alcor from the beginning. [Journal entries] Feb 13 (Sat) Call in the early afternoon from Tanya Jones, wanting advice with a suspension case, a [Mr. ******] in Florida, mid 30's gay male with 10 year Hx of AIDS, who is in **** General Hospital near Ft. Lauderdale after taking an APAP/propoxyphene (Darvocett) overdose. [Note: this was later stated by the patient to have been accidental, but we did not know it at the time] I was given the lab values, which showed a patient s/p N-acetylcysteine rescue with blood APAP levels peaking many times normal. Only mild transaminasemia, so the rescue had apparently been success- ful. There was also a history of draining rectal abscess for a month, and the patient had been running a high fever (104 F) in hospital, now apparently controlled on Ceftazidime, and was running a good white count with left shift, aided by Neupogen, and had clearing mental status. Unfortunately, his electrolytes showed that normal renal function (creatinine = 1 or so) had (as of just today) risen to 3, and he was now oliguric, with urine outputs less than 100 cc per 8 hour shift through a Foley, although he was being hydrated at 100 cc/hr with D5W/.5NS by IV. Called Steve Bridge at [L.Z.'s] in the SF area, and expressed concern with the situation, and the lack of ICU care being offered to the patient. Feb 14 (Sun) Valentine's day, which I spent all day working at the clinic. Consultation on and off with Tanya in Florida, who is giving me some strange story about the family wanting to take ******* home. No doctors available to comment. No new lab values (the doctors have quit ordering them, always a bad sign) but he's still oliguric on an IV, so it appears that he would not do too well at home(!) His IV had actually been D/C'd during the night, and nobody had replaced it. I expressed surprise at all of this, but Tanya was resistant to the idea of treating **** aggressively, saying that he wanted to die and that his doctors were backing off and that there was nothing to be done about it. .... bothered several times by phone calls in the evening from Alcor people. Saul called up and was rather upset about the fact that **** was not being dialyzed, when I thought he should be. Saul expressed surprise about the fact that treatment was not aggressive, since the **** had been up and around on his bike only last week. I agreed that this was the expected baseline function to which **** would be expected to return, if his acute medical problems were dealt with. Steve Bridge, recently back from the San Francisco area, was also called by several people, and talked to me. We agreed that I should have a conference with ****'s doctor, who would be available first thing in the AM, which would be 3 AM for me. Meanwhile little to be done, although **** is without doubt deteriorating hourly without aggressive treatment. Feb 15 (Mon) President's day, so slept in a bit and had most of the day off from work. Awakened several times during the early morning by Saul and also Tanya in Florida, but not by the physician. Finally at 4 pm, call from Tanya saying that *****' infectious disease specialist, a Dr. R*** who bills himself as an AIDS specialist, had finally shown up (no doctor, including the attending had seen *** all day-- now 7 pm in Florida) and was willing to talk to me. Soon a call back from R**** in the Plantation general ward, who told me that they had done no tests since the 13th (when we had seen the new creatinine bump to 3 and the oliguria), but that *** was "a dead guy, lying there." I objected that his mental status was not bad, and that there was nothing in his clinical picture which would not be potentially corrected by dialysis, and that he might well go back to his baseline of being up and about and riding his bike, which he'd been doing last week. "We're not going to do that," was R****'s answer: "It's not appropriate." "Why?" I wanted to know. "Because he's going to die anyway." "In California," said I, "we do not let AIDS patients die of rectal abscesses or Tylenol overdoses, if we can help it." "Here in Florida," said R****, "we let them die of everything." "After talking to you, I can well believe it," said I. R**** and I did not get along. Very soon we got into a vicious circle of reasoning, in which R**** likened treating **** to doing complic- ated surgery on someone dying of leukemia. "The difference," I objected, "is that AIDS patients, unlike failed leukemics, live sometimes for years." "Not this one," said R****. "That's only because you refuse to treat him." "It wouldn't be appropriate to treat him." "Why not?" "Because he's going to die anyway." It soon became clear that R**** was an incompetent who thought **** was in multiple organ failure, and (worse) did not particularly care if he was or wasn't. Finally, R***** suggested that there was another ID team at the hospital who would be glad to follow the patient if the mother wanted, but that he would not dialyze the patient under any circumstances. Thereafter I got Tanya on the line and asked for the mother, ******', phone number. I got Mrs. **** at home, identified myself as a physician working with Alcor and asked to consult about her son, and was told by her that they had decided to take **** home, and take things "one day at a time." I quickly corrected her mis-perception, and told her as gently as I could that her son was dying of renal failure, and that his only chance was to be dialyzed, and that to do that she would need to fire some doctors. She had no idea that her son had been written off by his physicians as hopelessly terminal, and was angry at not having been told about all of this earlier by someone (anyone), and connected some of the problem to Alcor, who she had identif- ied as trying to kill her son. I tried to dissuade her, and told her that I was acting on behalf of Alcor, that I was Alcor, that Alcor wanted her son to live. She did not understand this. She was not happy about the prospect of going into the hospital at 7 pm and finding a new doctor, but I told her she needed to do something tonight, and that Alcor would help her. She was extremely distrustful of Alcor, who she said had "pulled a fast one" on her, and made reference to the horror of them putting a "coffin" in ****'s room (the portable ice bath). I attempted to put her straight about Alcor's role as a "life extension founda- tion" not an organization devoted to freezing people as early as possible (all the while wondering if by now I was lying...). She said she would think about firing ****'s doctors. After finishing talking to Ms. *****, I then called Tanya back and told her what was coming. To work briefly. At home again where I had a message waiting from Steve Bridge, who told me on callback that Mrs. **** had descended on the hospital in Florida like Jesus cleaning the temple, and that her main target had been, not the doctors, but Alcor, who were ordered out of the hospital. I'm getting blamed for this. Though I offered further consultation advice, Steve said that further input from me would not be needed, and what I had done was quite sufficient. I was given to understand that I had done more harm than good, although Steve did not use these words. <personal inflammatory comments deleted> Feb 16 (Tue) More debacle in Florida, for which I am getting blamed. Now have the word that, due to inadequate funding (a condition only discovered today, at the insistence of B. F.), ****** is probably not going to get suspended at all. Which is just as well, since Alcor has basically been kicked out of the hospital. Supposedly Dr. R**** told Tanya that they (Alcor) had "lost all credibili- ty," with him because of me. Not clear to me why one should worry about losing credibility with R*****, any more than with Larry, Curley, Mo, or Shemp. The problem is Alcor's lack of rapport with Mrs. **** which prevents us from getting rid of these clowns. Diary Addendum: **** survived without dialysis, to the surprise of all, and is scheduled for hospital discharge today. I have since learned that Mrs. **** has told several people that her main problem was with Alcor (Tanya & Co). I have, at Steve Bridge's request, had no further contact with the family. Comment and Analysis: This last "almost suspension" left a very bad taste in my mouth, mostly due to my sensing that I was being in some part blamed for the bad elements of a situation which I had nothing to do with building. I am reluctant to accept significant blame for the problems in Florida during the last suspension, since insofar as I can tell at this late date, I did in this case the only things I could medically and ethically do, given the knowledge that I was given. While my prognosis and recommendations for treatment were not perfect, still in the benefit of hindsight they remain the best of the sad lot that were obtained in the case. I thus remain reasonably satisfied with what I did. I would do, in retrospect, the same things again, if faced with the same information. Alcor's problems in Florida did not start with me, and were well-developed long before I got involved. By the time I spoke to anyone other than Alcor members in Florida, it was quite apparent that Alcor personnel had communicated hardly at all with Mrs. *** or the Florida physicians during the critical phase of *****s' illness, and that (in addition) Mrs. ***** and the physi- cians were not communicating with each other either. Mrs. ****** made it quite clear to me during my phone conversation with her that she had already lost trust in Alcor, mainly as the result of the portable-ice-bath incident, and that this had happened long before I talked to her. It is difficult for me to know where the problem lay in all of this. I do know, however, that I did not like the feedback I received from Alcor (specifically from Steve Bridge, but indirectly from others as well) after I tried to rectify an already bad situation by providing some long overdue and (at that time) fully appropriate medical advice. (And free advice at that; it's bad enough to look a gift horse in the mouth, quite another to do that and then complain about the teeth even when they're in good shape). I still do not like Alcor's continued implied reaction to what happened (i.e., Steve's recent letter to me), but I will address this more fully presently. As we all know, there were a number of problems in Florida. The most significant one was that power of attorney for health care was being wielded in this case by a non-cryonicist of advanced years, frail constitution, emotional instability, and very poor medical understanding. A second problem was that Mr. *****' physicians (apparently for reasons having to do with stupidity or bigotry, or both) were failing to offer him medical treatment which should have ethically here been offered to the patient or his decision-makers (no financial considerations apply here-- dialysis is paid for by medicaid, everywhere in the US). A third problem was that Alcor personnel on site did not recog- nize early-on that the patient was not necessarily irreversibly and immediately terminal, but instead potentially treatable, and moreover Alcor did not press (for whatever reasons) for treatment or even further qualified medical opinion later when they were advised by me that saving the patient's life was in fact a possibility and an option. A fourth (possibly related) problem was that Alcor never succeeded in convincing the patient's mother that they were interested in her son's well-being over all, as opposed to merely being concerned with how best to freeze him during that hospital stay. Other problems (which I will not address in this letter) lay in the funding of the suspension, and the threat of a coroner who had at least two reasons to do an autopsy in this case if Mr. **** had died, adding an extra and significant cryonics-related reason to try to make sure that Mr. ***** was not suspended on this hospital admission. Let me take the above problems one by one: To begin with, Alcor must bear primary responsibility for having to deal with a patient who has indicated an elderly and somewhat confused non-cryonicist as his power of attorney for health care. We still bear responsibility to see that this never happens again. A thorough recheck of suspension documents is now in order, for clearly Alcor cannot in the future place itself both in the position of being legally obligated to freeze someone in a timely manner, and also at the same time place itself completely at the mercy of outside non-Alcorians who have power to prevent Alcor from even seeing a terminal patient in the hospital. This is obviously a no-win situation. In the future, in those few cases where Alcor members are resistant to making changes in their suspension paperwork so as to provide reasonable assurance that such an intolerable situation cannot happen (such as signed directives from each member stating that Alcor is never to be denied access to records or bedside, for any reason whatso- ever), my strong recommendation is that such members may have to be invited to join another cryonics group. As an organization we cannot afford them, and we must not try. Our power to deal with this situation as a legal threat prompting membership refusal is clearly granted in our bylaws (March 3, 1991, non-discrimination policy adopted unanimously by the Alcor Directors then present). It is not possible for me to accurately gauge Alcor's share of the responsibility (if any) for the poor communication which certainly occurred in the field between Alcor, the patient's family, and the patient's doctors in this case. I understand that Alcor's coordination with one trained EMT Alcor member in the area was not good, either, however, so it may be that some changes need to be made by Alcor field staff in the way they do things in the future. You must judge. Alcor and a patient's family suffered in this case from the problem of not being able to independently medically assess a sick patient. You may be surprised to know that (quite frankly) I see this as a secondary problem. Even had Alcor had the World's Best Internist (assuredly this is not I) on site in Florida (where no Alcor medical consultant in fact was), that we would *still* have been helpless without the full cooperation of the patient's family, which we did not have (and had not had, since long before I became directly involved). Let me go further and say that I see nothing unreasonable in Alcor's assumption (if such it was) that the patient's personal physician, who was there with him, might be expected to have as good or better clinical judgement and prognosis in the case than that of a distant consultant (in this case, me) forced to base his opinion on information gained over the telephone. In this particular odd case the assumption proved faulty (again due more to the incompetence/perfidity of the patient's Florida physicians than any special talent of mine) but normally it should have been good. None of this, however, necessarily consigns Alcor to a passive role. As Steve Bridge points out, Alcor has no medically trained people on staff, now that Jerry and Mike have been frozen out, and therefore I agree that it is certainly not Alcor's proper place to try to decide between physician's opinions, if two physicians disagree. Instead, however, it should have been then, and should be now, incumbent upon Alcor to aggressively pursue diverse 2nd, 3rd, and 4th medical opinions in any case of a clear conflict of prognosis and treatment plan between an Alcor physician consultant and a physician actually treating the patient. Alcor failed to do even this in the **** case, however, and this failure started long before my own direct contact with the patient's doctor and mother (I had made my disagreement clear long before then). Charitably, this failure may be attributed to Alcor's very real lack of control over the situation and belief that (by this time) they could do nothing anyway with such a request for treatment but do further harm to their relationship with the patient's family (which they needed to keep intact for the patient's sake). Uncharitably, such a failure to pursue every reasonable treatment option might conversely be attributed to Alcor's desire to simply perfuse the patient as soon as possible and come home. I hope and trust that the first possibi- lity is in fact the case. We now directly confront the issue, raised by Steve Bridge in his recent letter to me, of whether Alcor should attempt to live up to its title as a full "life extension foundation" in every sense of the word (as opposed to just a cryonics organization) when it has no real medical staff. My answer: being a full life extension foundation is a matter consisting of cryonics capa- bility plus 1) legal preparation, 2) financial preparation, and 3) state of mind. Adequate medical consultation, by contrast, can almost always be had at any time if all the above is in place, and such medical consultation does not necessarily have to come from a cryonicist physician. As an example, I will ask you (each Director) to imagine that you have a family member in the hospital with a life-threatening illness. The physician YOU have selected for your family member calls your family member a "dead guy, lying there," even though he is still semiconscious, and the physician further states there is nothing to be done for him. The Alcor consulting physician (by contrast) strongly disagrees, states that your family member's span of quality life can be significantly prolonged with appropriate therapy, and recommends a specific therapy. Now: at this point do you simply take a passive role because you are not a doctor, allowing the disease to take its course? Or do you act like an intelligent adult and layperson and get yourself a few more doctors and some more information on which to base a decision? Again, the problem in Florida this time was not primarily one of availability of medical expertise, in my opinion, but rather lack of legal power and/or willpower. These problems can, I think, both be addressed without any change in Alcor's present capable field personnel. As opposed to cryonics expertise, medical expertise from Alcor personnel on-site is handy, but perhaps not absolutely essential. Wh sick patients. Since these things go right to the core of my chosen profession, under the circumstances (particularly given the way the ***** case turned out, demonstrating the utter incompetence of the physician which Alcor did not challenge) I find Steve Bridge's implication highly insulting. On a personal level, in fact, coming as Steve's offer does from a person with very little relevant medical training himself who nevertheless proposes to chaperon me at such a task, and (moveover) coming from a person who had a track record of letting *other* untrained people perform this task with very little supervision in the past, I find it doubly and triply insulting. Thus my answer is (again) "No, thanks." ------------------------------------------------------------ Note in 1996: It's still "no, thanks." Hopefully the reasons are getting clear, even to people who are strangers to this mess. S.B.H. Rate This Message: http://www.cryonet.org/cgi-bin/rate.cgi?msg=6837