[FRIAM] bursting the placebo bubble
The issue keeps coming up. Perhaps I'm just sensitive to it, since my S.O. is (finally!) getting her B.S. in nursing at a Catholic university ... because she works for a Catholic hospital. And I can't think of a better example of applied complexity. Here's a recent interview on the Cancer Network: ONS: Understanding Spirituality and How It Can Be Used to Help Patients http://www.cancernetwork.com/conference-reports/ons2013/content/article/10165/2139629 And here's a recent interview by Sam Harris of Ronald A. Howard: The Straight Path http://www.samharris.org/blog/item/the-path-of-honesty The irritating question is whether the Truth(TM) is _always_ in the best interests of the organism (not the species, necessarily, but the individual)? Even if I set aside my objections to the existence of a Grand Unified Truth and allow it for the sake of argument, the question retains its meaning and power. What are my responsibilities as I escort my mom into death? Or, were I a nurse, especially at something like a Catholic hospital, what would be my responsibilities as I escorted a Catholic into death? How about a Jew? Or an atheist? The same could be said of children, I suppose. When/how do you explain to your child that there is no Santa Claus? When/how do you explain to your child that there is no God and those who say there is are simply wrong, but perhaps not always wrong in a terrible way? And, most importantly, how do you explain to people that you reject treatments like homeopathy, chiropracty?, and acupuncture because there's no evidence to support their efficacy? A related issue surrounds DNR orders (Do not Resuscitate). I've _heard_ that most doctors sign them because they're aware of the relative ineffectiveness and physical trauma associated with techniques like CPR and defibrillation. Yet, most nurses, EMTs, firemen, life guards, local CERT traine[r|e]s insist on them. I don't have trustworthy data sources for the efficacy or side effects of resuscitation methods. So, I can't say which position is more sound. And I suspect doctors, like cops, are biased because of their occupation. But the question is, do the data even matter? Is a particular life _always_ so sacred to some particular other that the efficacy and side effects simply do not matter? That's related to things like accupuncture by the argument I often hear that it can't hurt, so if it's even a little bit possible it'll help, then why not do it? Arlo Barnes wrote at 04/05/2013 08:42 PM: The first is in response to 'would I like people to burst my placebo/nocebo bubble?': the latest issue of Science magazine has an article on recommendations by the American College of Medicine of whether people should be told without being asked that they have alleles that indicate an elevated risk of disease when looking at genes related to common diseases (mostly cancers and tissue defects) as a course of a full-genome analysis for another disease/syndrome/disorder (pointing out that people may already be in an emotionally fragile state from said disease). Link here http://www.sciencemag.org/content/339/6127/1507.full?sid=7561e634-f578-431a-8299-e86ef03891f4. -- == glen e. p. ropella I learned how to live true and somebody blew up FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
A better question might be: why are we still teaching them these dishonest little fairy tales in the first place, which we then have to un-teach later? --Doug On Thu, Apr 25, 2013 at 10:29 AM, glen g...@ropella.name wrote: The same could be said of children, I suppose. When/how do you explain to your child that there is no Santa Claus? When/how do you explain to your child that there is no God and those who say there is are simply wrong, but perhaps not always wrong in a terrible way? FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Douglas Roberts wrote at 04/25/2013 09:44 AM: A better question might be: why are we still teaching them these dishonest little fairy tales in the first place, which we then have to un-teach later? I admit that's a more philosophical question, but not a better one. It's not clear how answering that question will help address the applied complexity problem of handling the mature organism, where these beliefs are deeply rooted and may well affect their physiology in some way. Harris' questions get to the root of the applied complexity problem. Do you tell the whole truth and nothing but the truth to a dying old person? If so, is that medically beneficial or detrimental? -- == glen e. p. ropella Man alive the jive and lyrics, FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Unrelated to the main topic here, but all the talk of DNR et al reminded me of this article earlier this week - http://www.bbc.co.uk/news/magazine-22154552 . Hmmm. On Thu, Apr 25, 2013 at 10:38 PM, glen g...@ropella.name wrote: Douglas Roberts wrote at 04/25/2013 09:44 AM: A better question might be: why are we still teaching them these dishonest little fairy tales in the first place, which we then have to un-teach later? I admit that's a more philosophical question, but not a better one. It's not clear how answering that question will help address the applied complexity problem of handling the mature organism, where these beliefs are deeply rooted and may well affect their physiology in some way. Harris' questions get to the root of the applied complexity problem. Do you tell the whole truth and nothing but the truth to a dying old person? If so, is that medically beneficial or detrimental? -- == glen e. p. ropella Man alive the jive and lyrics, FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
The intent was to produce a pragmatic perspective, not a philosophical one. By avoiding the telling of escapist fantasy-world fairy tails in the first place, there will be less untruth to deal with at later stages in life. --Doug On Thu, Apr 25, 2013 at 11:08 AM, glen g...@ropella.name wrote: Douglas Roberts wrote at 04/25/2013 09:44 AM: A better question might be: why are we still teaching them these dishonest little fairy tales in the first place, which we then have to un-teach later? I admit that's a more philosophical question, but not a better one. It's not clear how answering that question will help address the applied complexity problem of handling the mature organism, where these beliefs are deeply rooted and may well affect their physiology in some way. Harris' questions get to the root of the applied complexity problem. Do you tell the whole truth and nothing but the truth to a dying old person? If so, is that medically beneficial or detrimental? -- == glen e. p. ropella Man alive the jive and lyrics, FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com -- *Doug Roberts d...@parrot-farm.net* *http://parrot-farm.net/Second-Cousins*http://parrot-farm.net/Second-Cousins * http://parrot-farm.net/Second-Cousins 505-455-7333 - Office 505-672-8213 - Mobile* FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Douglas Roberts wrote at 04/25/2013 10:16 AM: The intent was to produce a pragmatic perspective, not a philosophical one. By avoiding the telling of escapist fantasy-world fairy tails in the first place, there will be less untruth to deal with at later stages in life. You're talking about a manipulation that might take generations to realize an effect. That's not very pragmatic. A pragmatic perspective is to look at the population we have right now and try to design our manipulation based on that population and whatever evidence we have now. If and when we can tease out some local (temporally and spatially) cause-effect relationships, then we can begin extrapolating to 30-80 years out, like you want to do. So, the question remains, is there a medical benefit to bursting the beliefs of a patient? And more refined, does the condition of the patient matter? E.g. I can see how bursting my friend, who is getting accupuncture for her neck pain, might help her. But how about a 50 year old prostate cancer patient with a good prognosis? Versus a 98 year old emphysema patient? -- == glen e. p. ropella I had my arm around a sundial FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
siddharth wrote at 04/25/2013 10:16 AM: Unrelated to the main topic here, but all the talk of DNR et al reminded me of this article earlier this week - http://www.bbc.co.uk/news/magazine-22154552 . Hmmm. Thanks. That's definitely relevant. But the trouble with that article (and most, actually) is the purely positive results reported. Here's one that _seems_ more objective. A practical first step might be to push for more realistic portrayals of CPR in the media. CPR: Less Effective Than You Might Think http://www.intelihealth.com/IH/ihtIH/WSIHW000/35320/35323/372221.html?d=dmtHMSContent As opposed to many medical myths, researchers have reliable data concerning the success rates of CPR (without the use of automatic defibrillators) in a variety of settings: 2% to 30% effectiveness when administered outside of the hospital 6% to 15% for hospitalized patients Less than 5% for elderly victims with multiple medical problems In June 1996, the New England Journal of Medicine published a study about the success rates of CPR as shown on the television medical shows ER, Chicago Hope and Rescue 911. According to the shows, CPR successfully revived the victim 75% of the time, more than double the most conservative real-life estimates. A more recent study published in 2009 suggested that the immediate success rate of CPR on television may be more realistic; however, discharge from the hospital and longer-term survival were rarely mentioned in TV dramas. In addition, while most CPR is actually performed on sick, older individuals with cardiac disease, most victims in television dramas are young and required CPR following trauma or a near-drowning — conditions with the highest success rates. Finally, patients on TV shows usually die or fully recovered. In real life, many of those who are revived by CPR wind up severely debilitated. One reason may be that, as noted by a study published in the January 2005 issue of the Journal of the American Medical Association, CPR is frequently not administered adequately, even when provided by trained ambulance personnel. Improved technique (including more frequent and rapid compressions, as recommended in the new guidelines) and use of automatic defibrillators could dramatically improve success rates. The low success rate of CPR may be an example of how a medical myth is perpetuated by the media because it is more appealing than the truth. Unfortunately, sugar-coating the concept of CPR leads to unrealistic expectations when a loved one requires CPR or is ill, and heroic measures are under consideration. A better understanding of when CPR may be effective and when it is highly unlikely to help will better serve everyone in the unfortunate event of catastrophic illness or injury. If you learn to administer CPR, you may save someone's life, so learning the proper technique is worth the effort. However, you should not expect the results you see on television. -- == glen e. p. ropella And I'm never gonna tell you why FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
On 4/25/13 11:36 AM, glen wrote: So, the question remains, is there a medical benefit to bursting the beliefs of a patient? If the patient is asking a for an opinion, and the nurse has no reason to think the patient's mental faculties are especially compromised, then I think it is best to engage honestly. It could distract them from their physical condition. If the patient is asserting a bunch of random fundamentalist nutcase things about the nature of the universe and forcing the engagement of an otherwise uninterested professional, then that patient could be in the `burst' side of a side-by-side study. (In the case of being an employee of a hospital with a religious affiliation, this could be professionally risky.) If it is not a patient, but a relative or friend, then perhaps the best thing to do is to direct the conversation to shared journey together and not on a debate on the extent to which it will end. Marcus FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
'Realistic portrayals of CPR' such as this one by the British Heart Foundation?!?! - https://www.youtube.com/watch?v=ILxjxfB4zNk *sigh* stomps off into the sunset On Thu, Apr 25, 2013 at 11:34 PM, glen g...@ropella.name wrote: siddharth wrote at 04/25/2013 10:16 AM: Unrelated to the main topic here, but all the talk of DNR et al reminded me of this article earlier this week - http://www.bbc.co.uk/news/magazine-22154552 . Hmmm. Thanks. That's definitely relevant. But the trouble with that article (and most, actually) is the purely positive results reported. Here's one that _seems_ more objective. A practical first step might be to push for more realistic portrayals of CPR in the media. CPR: Less Effective Than You Might Think http://www.intelihealth.com/IH/ihtIH/WSIHW000/35320/35323/372221.html?d=dmtHMSContent As opposed to many medical myths, researchers have reliable data concerning the success rates of CPR (without the use of automatic defibrillators) in a variety of settings: 2% to 30% effectiveness when administered outside of the hospital 6% to 15% for hospitalized patients Less than 5% for elderly victims with multiple medical problems In June 1996, the New England Journal of Medicine published a study about the success rates of CPR as shown on the television medical shows ER, Chicago Hope and Rescue 911. According to the shows, CPR successfully revived the victim 75% of the time, more than double the most conservative real-life estimates. A more recent study published in 2009 suggested that the immediate success rate of CPR on television may be more realistic; however, discharge from the hospital and longer-term survival were rarely mentioned in TV dramas. In addition, while most CPR is actually performed on sick, older individuals with cardiac disease, most victims in television dramas are young and required CPR following trauma or a near-drowning — conditions with the highest success rates. Finally, patients on TV shows usually die or fully recovered. In real life, many of those who are revived by CPR wind up severely debilitated. One reason may be that, as noted by a study published in the January 2005 issue of the Journal of the American Medical Association, CPR is frequently not administered adequately, even when provided by trained ambulance personnel. Improved technique (including more frequent and rapid compressions, as recommended in the new guidelines) and use of automatic defibrillators could dramatically improve success rates. The low success rate of CPR may be an example of how a medical myth is perpetuated by the media because it is more appealing than the truth. Unfortunately, sugar-coating the concept of CPR leads to unrealistic expectations when a loved one requires CPR or is ill, and heroic measures are under consideration. A better understanding of when CPR may be effective and when it is highly unlikely to help will better serve everyone in the unfortunate event of catastrophic illness or injury. If you learn to administer CPR, you may save someone's life, so learning the proper technique is worth the effort. However, you should not expect the results you see on television. -- == glen e. p. ropella And I'm never gonna tell you why FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
A question for Doug. Would you be so kind as to describe to me, in sufficient detail that I could mount a Pragmatic test, this god of his whose non-existence he so positively asserts? A question for the person who speaks of escorting somebody into death. I confess, being old, I quite like the concept. But I guess we have to remember that such an escort is always a Judas steer. Nick From: Friam [mailto:friam-boun...@redfish.com] On Behalf Of Douglas Roberts Sent: Thursday, April 25, 2013 11:17 AM To: The Friday Morning Applied Complexity Coffee Group Subject: Re: [FRIAM] bursting the placebo bubble The intent was to produce a pragmatic perspective, not a philosophical one. By avoiding the telling of escapist fantasy-world fairy tails in the first place, there will be less untruth to deal with at later stages in life. --Doug On Thu, Apr 25, 2013 at 11:08 AM, glen g...@ropella.name wrote: Douglas Roberts wrote at 04/25/2013 09:44 AM: A better question might be: why are we still teaching them these dishonest little fairy tales in the first place, which we then have to un-teach later? I admit that's a more philosophical question, but not a better one. It's not clear how answering that question will help address the applied complexity problem of handling the mature organism, where these beliefs are deeply rooted and may well affect their physiology in some way. Harris' questions get to the root of the applied complexity problem. Do you tell the whole truth and nothing but the truth to a dying old person? If so, is that medically beneficial or detrimental? -- == glen e. p. ropella Man alive the jive and lyrics, FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com -- Doug Roberts d...@parrot-farm.net http://parrot-farm.net/Second-Cousins http://parrot-farm.net/Second-Cousins 505-455-7333 - Office 505-672-8213 - Mobile FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Nicholas Thompson wrote at 04/25/2013 12:02 PM: A question for the person who speaks of escorting somebody into death. I confess, being old, I quite like the concept. But I guess we have to remember that such an escort is always a Judas steer. I could not disagree with you more. We're _all_ going to die. You may not believe that, but it's true. The trick is whether the _cattle_ who are heading toward their slaughter are self-aware enough to understand that they're going to die and that they have some control over how it happens. That's nothing like a judas steer. -- == glen e. p. ropella I'm seeing nowhere through the eyes of a lie FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
If you're asking me the question, then you're probably asking the wrong person. You'd most likely be better off asking a priest. Or a psychologist. --Doug On Thu, Apr 25, 2013 at 11:36 AM, glen g...@ropella.name wrote: beliefs of a patient? And more refined, does the condition of the patient matter? E.g. I can see how bursting my friend, who is getting accupuncture for her neck pain, might help her. But how about a 50 year old prostate cancer patient with a good prognosis? Versus a 98 year old emphysema patient? - FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Douglas Roberts wrote at 04/25/2013 12:09 PM: If you're asking me the question, then you're probably asking the wrong person. You'd most likely be better off asking a priest. Or a psychologist. No, I wasn't asking you. History has taught me that you won't contribute. But I do believe there are those on the list who might. -- == glen e. p. ropella Shut me off 'cause I go crazy with this planet in my hands FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Glen wrote: The trick is whether the _cattle_ who are heading toward their slaughter are self-aware enough to understand that they're going to die Point taken. But, you know. Just to wax philosophical in exactly the sense that enrages Doug, I don't think we know our own death's, do we? We know bereavement, we know illness and pain and decline, but we don't know death. So, when the Death Escort accompanies me to the Doors of Death, s/he will not know any more about where I am going than the Judas Steer. There is, so far as I know, no point of view that is the point of view of the dead. I always fantasize that the hardest thing about being told one is going to die in N weeks is what to do in the meantime, given that I have no future. (Speaks the true Apollonian; no Dionysian I) Now, that's where a Death Escort might come in handy. Being a diabetic, I plan to eat a lot of hot-fudge sundaes, but beyond that I have no plans. Nick -Original Message- From: Friam [mailto:friam-boun...@redfish.com] On Behalf Of glen Sent: Thursday, April 25, 2013 1:07 PM To: The Friday Morning Applied Complexity Coffee Group Subject: Re: [FRIAM] bursting the placebo bubble Nicholas Thompson wrote at 04/25/2013 12:02 PM: A question for the person who speaks of escorting somebody into death. I confess, being old, I quite like the concept. But I guess we have to remember that such an escort is always a Judas steer. I could not disagree with you more. We're _all_ going to die. You may not believe that, but it's true. The trick is whether the _cattle_ who are heading toward their slaughter are self-aware enough to understand that they're going to die and that they have some control over how it happens. That's nothing like a judas steer. -- == glen e. p. ropella I'm seeing nowhere through the eyes of a lie FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Doug wrote: The intent was to produce a pragmatic perspective, not a philosophical one. By avoiding the telling of escapist fantasy-world fairy tails in the first place, there will be less untruth to deal with at later stages in life. Both of my daughters (now 31, 33) were raised under the teaching of the Catholic Church with my (athiest) company at weekly Mass and discussions *after* each Catechism class for the first dozen years of their lives or so. I avoided undermining the teaching, provided as much sounding board and reference material as they could take, listened and watched. Their mother was Catholic but cherry picked what she wanted from it, mostly absolution for the most part, I think. I had nothing to offer except my own example of how I lived and what I valued. While my mother-in-law insisted that I was a Secular Humanist, I was not that either, though I can see how she might think so. They both declined Confirmation on it's own merits and drifted from the community fairly quickly. Their mother accepted it pretty well, I think their grandmother may have had a couple of mini-strokes as a result, but by that time they weren't listening to her raving much anyway. They had in fact, attained the Age of Reason and were using it effectively, just as their Catechism classes had been teaching them to do. They had no more trouble sorting out the fictions of the Catholic Church in the long run than they did getting over the Tooth Fairy, The Easter Bunny and Santa Claus. They came to their own understanding of these fictions and perhaps even *why* some of those close to them held them dearly. While I might have spoken directly against the religion of their Mothers origins, I chose not to. And in fact I learned a great deal by attending Mass for over a decade. The two priests who attended for most of that time were deeply thoughtful people who managed to always provide a strong humanist perspective within the context of their chosen religion. My daughters today both exist outside the framework of organized religions, would almost surely say they did not believe in God or more to the point, they would not say that they do believe in God (Or Jesus or Allah or Yahweh or Kali or Vishnu or Haile Sallasie...) and do not seem to have the need to mumble things about Higher Power, etc. I was worried for a time that they might be good candidates for the neo-religions that my own generation was full of (American Buddhism, Sikhism, Jainism, Taoism, Newage this-n-that, Moonies, Krishnas, Trancendental Meditation, etc.). I was worried that their exposure to a formal religion and the rituals of it had established patterns that would need to be met somewhere else. On the opposite end, I was worried that their failed religious experience might leave them empty, without meaning, etc. As far as I can tell, I needn't worry on either account. If I had to do it over, I might not do any different... I might choose a different mother for my children (she left us about the time the girls attained the Age of Reason, but remained involved with them to this day) who I could have raised children within a more consistent framework of belief/non-belief. But I think it all came out fine, early fairy-tales and all... And as *fairy tales* go, I think that our contemporary modern/post-modern narcissistic pop-culture system of beliefs is insidiously and equally dangerous. The myths of free markets, of the centrality of capital, of socialism and communism, of consumerism, drugs-are-good/drugs-are-evil, of neoconservative (sans religion) and of neoliberal politics... *ALL* of these do damage too... maybe not as acute as the crusades or jihad but just as laced with fairy tales as Doug calls them. More on Death and Dying under separate cover. - Steve FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
That's an excellent 3 way split. I don't have any data to suggest what percentage of patients ask for opinions. But many people seem to trust the authority of the medical industrial complex. They take the drugs they're told to take, have the surgeries their specialists recommend, etc. So, my guess is that even _if_, for example, a hospice nurse or doctor isn't specifically asked the question, their manner and the other things they say and the tone they use, has an effect on the patients world view. As for the uninterested professional, most of these, if they're professional at all, are trained to consider the spirituality of their patient in treating them. So, even if they're personally uninterested, they should be professionally interested ... otherwise they're considered unprofessional. It's easy to summon the imam (or whatever), because they ask you, pointedly, your affiliation when you check in. So, the extent of the professional consideration is usually limited to deciding when to summon the spiritual guidance. But that doesn't address the fact that patients who are awake still hear the ancillary conversation of the staff around them. Renee's (mostly) a Christian, which results in lots of interesting conversations between us. But she often asks me for my opinion on interesting ethical dilemmas that come up at work. (Cthulu only knows why she would ask me... I guess cause there's nobody else in the room.) So, from my perspective, it's more a systemic question. With media reports of death panels and Obamacare, etc. the issues start to take on a reality I wouldn't ordinarily perceive. Your last answer is the best, I think. And with hospice care, it may even apply to professional-patient relationships. I've been hunting for a new home for my mom if/when she finally can't live independently. And the facilities where the staff is simultaneously professional, but willing to (at least simulate) a partnership with the residents, seem best to me. Marcus G. Daniels wrote at 04/25/2013 11:15 AM: If the patient is asking a for an opinion, and the nurse has no reason to think the patient's mental faculties are especially compromised, then I think it is best to engage honestly. It could distract them from their physical condition. If the patient is asserting a bunch of random fundamentalist nutcase things about the nature of the universe and forcing the engagement of an otherwise uninterested professional, then that patient could be in the `burst' side of a side-by-side study. (In the case of being an employee of a hospital with a religious affiliation, this could be professionally risky.) If it is not a patient, but a relative or friend, then perhaps the best thing to do is to direct the conversation to shared journey together and not on a debate on the extent to which it will end. -- == glen e. p. ropella From the frozen depths of a forgotten fjord, FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Parks, Raymond wrote at 04/25/2013 11:36 AM: We have several WWs at Sandia - I wonder how they received the news of their injuries? Combat injuries are surely a possible research pool to answer the question of tell or hide. A surgeon from either Beth Israel or Mass General said that marathon bombing victims were so happy to be alive that their limb loss didn't faze them. That would be a great question to ask at the VFW. Sadly, not having served in the military makes it awkward for me to ask. I've found the younger vets to be more open to conversations with me. The older ones just clamp up and offer to buy me a beer. I've heard some news stories about how soldiers often don't seek treatment for PTSD due to the stigma and, to a lesser extent, the risk of being taken off duty. But the stigma seems more important. That hearsay makes me worry that machismo might prevent accurate self-assessment of belief bubble bursting with vets. So, a longitudinal experiment would be appropriate, I think. I have no idea what objective measures of spirituality could be taken, though. And I think it would have to be a large population, too. I can't shake the feeling that if there is a psychosomatic medical affect on patient outcome, it's going to be statistically difficult to show. -- == glen e. p. ropella You gotta go where this is headed FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
No, of course not. Perhaps death escort is a misnomer and dying escort would be better? To me, as a society, we bear the responsibility to make every dying person (i.e. every person) aware of the _possibilities_ that might obtain as we approach death. Or, if the person is a higher power type, then at least make sure they know the information is available, even if they refuse to explore it. That can mean anything from assisted suicide to knowing that good oral hygiene drastically increases quality of life. The point of my introducing that doctors often sign DNRs for themselves was to raise the point that many (especially elderly) patients may not be aware of the low success rate, what it means to finish your life with cracked ribs (and associated stupifying pain killers), as well as where their loved ones might stand on the issues. So, while I understand your philosophical issue, I think there are more important ways we can tweak the system right now, to see how it works and try to improve it. And the timing is right as the healthcare market is flooded with baby boomers. Nicholas Thompson wrote at 04/25/2013 12:29 PM: Point taken. But, you know. Just to wax philosophical in exactly the sense that enrages Doug, I don't think we know our own death's, do we? We know bereavement, we know illness and pain and decline, but we don't know death. So, when the Death Escort accompanies me to the Doors of Death, s/he will not know any more about where I am going than the Judas Steer. There is, so far as I know, no point of view that is the point of view of the dead. I always fantasize that the hardest thing about being told one is going to die in N weeks is what to do in the meantime, given that I have no future. (Speaks the true Apollonian; no Dionysian I) Now, that's where a Death Escort might come in handy. Being a diabetic, I plan to eat a lot of hot-fudge sundaes, but beyond that I have no plans. -- == glen e. p. ropella Slowly, broken windows returning to the sand FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Q: glen wrote: So, the question remains, is there a medical benefit to bursting the beliefs of a patient? And more refined, does the condition of the patient matter? E.g. I can see how bursting my friend, who is getting accupuncture for her neck pain, might help her. But how about a 50 year old prostate cancer patient with a good prognosis? Versus a 98 year old emphysema patient? A: I have no doubt in the efficacy of placebos. What I doubt is whether we have any sense about when to die or when to let another die. Fairy-tales or not, the belief in an afterlife has allowed generations of people to let go and die when their bodies no longer can hack it without significant intervention. As recently as my grandparents generation, people died when their pastor or priest came to them and told them it was ok to die now gave them some last rites, etc... they died within hours of that kind of permission. They also died of strokes and heart attacks without such permission. But for those left behind, it was God's will. I don't begrudge them these Fairy Tales. A few died long and lingering deaths, but by that time, it was in a morphine haze. Also God's Will one presumes. My challenge (for myself, my wife, and maybe by my example/extension my peers, my children, etc.) is how to slip away gracefully without that. I have two older peers who have left gracefully in the last few years after a modest but not excruciatingly contrived struggle with (presumed) terminal illnesses. They chose their time and place, but most of all they chose not to struggle. Neither had benefit of a belief in an afterlife, whether that be Harps and Clouds, Valhalla or Happy Hunting Grounds. My father died this year after most of a decade of dementia. He could have lived longer. He could have died earlier. My mother's emotional and practical care of him kept him here much longer than he would have otherwise. He died within 2 months of her own needing a similar level of care after a fall. She still had two meals a day with him and was there to tuck him in at bedtime, being housed on the opposite side of the same nursing home. But graciously, he took a left turn very quickly at this point. It wasn't the drugs the doctors threw at him that kept him alive, it was having someone there asking him to stay with her every hour of every day. My wife's father went roughly the same way. He was a poster child for Alzheimers. Bright, cooperative, charming and always game to pretend he knew what was going on, who you were, etc. Right up until he couldn't focus his eyes and had to be reminded to swallow each hand-fed bite of food. He had two emergency interventions fairly early in his dementia... a seizure and pneumonia. Either would probably have killed him without emergency response. The second incident, he was rescued in spite of blatant DNR statements all around him. My wife and her mother both agree that they would have allowed him to go at that point if they had it to do again. Both of them have stated in no uncertain terms that this is what they would want. Both of my parents were adamant in the same way while they were still highly viable. But once they went past a certain point, they effectively have been clinging to a life they formerly would have said was not worth living... who can say really? The neoCon rhetoric about death panels drives me up the wall, and so does all of the talk that suggests we have the right to live forever, or that we would even want to. We have lost the benefit of a cycle of life including death (and possibly afterlife/rebirth) and have tried to replace it with a very secular and technological immortality. Maybe once effective immortality is achieved, I would think differently, but for now, it seems as suspicious (or inhumane?) than the Fairy Tale of an afterlife or of a series of rebirths. I have neither the benefit nor the burden of either easy way out, but I don't feel in any position to begrudge those who do. - Steve FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Steve's post made me think of the Roger McGough poem Let me die a youngman's death: Let me die a youngman's death not a clean and inbetween the sheets holywater death not a famous-last-words peaceful out of breath death When I'm 73 and in constant good tumour may I be mown down at dawn by a bright red sports car on my way home from an allnight party Or when I'm 91 with silver hair and sitting in a barber's chair may rival gangsters with hamfisted tommyguns burst in and give me a short back and insides Or when I'm 104 and banned from the Cavern may my mistress catching me in bed with her daughter and fearing for her son cut me up into little pieces and throw away every piece but one Let me die a youngman's death not a free from sin tiptoe in candle wax and waning death not a curtains drawn by angels borne 'what a nice way to go' death FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Oh. Ok. Thanks, glen. I was, in fact, being annoying in exactly the way Doug or Owen would accuse me of. Nick -Original Message- From: Friam [mailto:friam-boun...@redfish.com] On Behalf Of glen Sent: Thursday, April 25, 2013 2:19 PM To: The Friday Morning Applied Complexity Coffee Group Subject: Re: [FRIAM] bursting the placebo bubble No, of course not. Perhaps death escort is a misnomer and dying escort would be better? To me, as a society, we bear the responsibility to make every dying person (i.e. every person) aware of the _possibilities_ that might obtain as we approach death. Or, if the person is a higher power type, then at least make sure they know the information is available, even if they refuse to explore it. That can mean anything from assisted suicide to knowing that good oral hygiene drastically increases quality of life. The point of my introducing that doctors often sign DNRs for themselves was to raise the point that many (especially elderly) patients may not be aware of the low success rate, what it means to finish your life with cracked ribs (and associated stupifying pain killers), as well as where their loved ones might stand on the issues. So, while I understand your philosophical issue, I think there are more important ways we can tweak the system right now, to see how it works and try to improve it. And the timing is right as the healthcare market is flooded with baby boomers. Nicholas Thompson wrote at 04/25/2013 12:29 PM: Point taken. But, you know. Just to wax philosophical in exactly the sense that enrages Doug, I don't think we know our own death's, do we? We know bereavement, we know illness and pain and decline, but we don't know death. So, when the Death Escort accompanies me to the Doors of Death, s/he will not know any more about where I am going than the Judas Steer. There is, so far as I know, no point of view that is the point of view of the dead. I always fantasize that the hardest thing about being told one is going to die in N weeks is what to do in the meantime, given that I have no future. (Speaks the true Apollonian; no Dionysian I) Now, that's where a Death Escort might come in handy. Being a diabetic, I plan to eat a lot of hot-fudge sundaes, but beyond that I have no plans. -- == glen e. p. ropella Slowly, broken windows returning to the sand FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
And this is roughly what I like about both of you. A strong sense of self... And Nick's good natured desire to arbitrate as well. Carry on! - Steve You know, Glen, you can be a bit of an asshole at times. History has taught me this. On Thu, Apr 25, 2013 at 1:13 PM, glen g...@ropella.name mailto:g...@ropella.name wrote: Douglas Roberts wrote at 04/25/2013 12:09 PM: If you're asking me the question, then you're probably asking the wrong person. You'd most likely be better off asking a priest. Or a psychologist. No, I wasn't asking you. History has taught me that you won't contribute. But I do believe there are those on the list who might. -- == glen e. p. ropella Shut me off 'cause I go crazy with this planet in my hands FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com -- /Doug Roberts d...@parrot-farm.net mailto:d...@parrot-farm.net/ /http://parrot-farm.net/Second-Cousins/ / 505-455-7333 - Office 505-672-8213 - Mobile/ FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
+2 Robert Holmes wrote: Steve's post made me think of the Roger McGough poem Let me die a youngman's death: Let me die a youngman's death not a clean and inbetween the sheets holywater death not a famous-last-words peaceful out of breath death When I'm 73 and in constant good tumour may I be mown down at dawn by a bright red sports car on my way home from an allnight party Or when I'm 91 with silver hair and sitting in a barber's chair may rival gangsters with hamfisted tommyguns burst in and give me a short back and insides Or when I'm 104 and banned from the Cavern may my mistress catching me in bed with her daughter and fearing for her son cut me up into little pieces and throw away every piece but one Let me die a youngman's death not a free from sin tiptoe in candle wax and waning death not a curtains drawn by angels borne 'what a nice way to go' death FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Ah…. This and Steve's preceeding note are the most useful, humane comment so far in this thread. Thanks, Robert. Tory On Apr 25, 2013, at 2:44 PM, Robert Holmes rob...@robertholmes.org wrote: Steve's post made me think of the Roger McGough poem Let me die a youngman's death: Let me die a youngman's death not a clean and inbetween the sheets holywater death not a famous-last-words peaceful out of breath death When I'm 73 and in constant good tumour may I be mown down at dawn by a bright red sports car on my way home from an allnight party Or when I'm 91 with silver hair and sitting in a barber's chair may rival gangsters with hamfisted tommyguns burst in and give me a short back and insides Or when I'm 104 and banned from the Cavern may my mistress catching me in bed with her daughter and fearing for her son cut me up into little pieces and throw away every piece but one Let me die a youngman's death not a free from sin tiptoe in candle wax and waning death not a curtains drawn by angels borne 'what a nice way to go' death FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
are self-aware enough to understand that they're going to die/* Point taken. But, you know. Just to wax philosophical in exactly the sense that enrages Doug, I don't think we know our own death's, do we? We know bereavement, we know illness and pain and decline, but we don't know death. So, when the Death Escort accompanies me to the Doors of Death, s/he will not know any more about where I am going than the Judas Steer. There is, so far as I know, no point of view that is the point of view of the dead. I always fantasize that the hardest thing about being told one is going to die in N weeks is what to do in the meantime, given that I have no future. (Speaks the true Apollonian; no Dionysian I) Now, that's where a Death Escort might come in handy. Being a diabetic, I plan to eat a lot of hot-fudge sundaes, but beyond that I have no plans. Nick -Original Message- From: Friam [mailto:friam-boun...@redfish.com] On Behalf Of glen Sent: Thursday, April 25, 2013 1:07 PM To: The Friday Morning Applied Complexity Coffee Group Subject: Re: [FRIAM] bursting the placebo bubble Nicholas Thompson wrote at 04/25/2013 12:02 PM: A question for the person who speaks of escorting somebody into death. I confess, being old, I quite like the concept. But I guess we have to remember that such an escort is always a Judas steer. I could not disagree with you more. We're _all_ going to die. You may not believe that, but it's true. The trick is whether the _cattle_ who are heading toward their slaughter are self-aware enough to understand that they're going to die and that they have some control over how it happens. That's nothing like a judas steer. -- == glen e. p. ropella I'm seeing nowhere through the eyes of a lie FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com
Re: [FRIAM] bursting the placebo bubble
Ah yes, ah yes! Better hung for a wolf than a sheep From: Victoria Hughes victo...@toryhughes.com To: The Friday Morning Applied Complexity Coffee Group friam@redfish.com Sent: Thursday, April 25, 2013 3:06 PM Subject: Re: [FRIAM] bursting the placebo bubble Ah…. This and Steve's preceeding note are the most useful, humane comment so far in this thread. Thanks, Robert. Tory On Apr 25, 2013, at 2:44 PM, Robert Holmes rob...@robertholmes.org wrote: Steve's post made me think of the Roger McGough poem Let me die a youngman's death: Let me die a youngman's death not a clean and inbetween the sheets holywater death not a famous-last-words peaceful out of breath death When I'm 73 and in constant good tumour may I be mown down at dawn by a bright red sports car on my way home from an allnight party Or when I'm 91 with silver hair and sitting in a barber's chair may rival gangsters with hamfisted tommyguns burst in and give me a short back and insides Or when I'm 104 and banned from the Cavern may my mistress catching me in bed with her daughter and fearing for her son cut me up into little pieces and throw away every piece but one Let me die a youngman's death not a free from sin tiptoe in candle wax and waning death not a curtains drawn by angels borne 'what a nice way to go' death FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com FRIAM Applied Complexity Group listserv Meets Fridays 9a-11:30 at cafe at St. John's College to unsubscribe http://redfish.com/mailman/listinfo/friam_redfish.com