Rest in Peace, Ned. You were loved.
Monday, December 23, 2013
Thursday, October 24, 2013
Sometimes, I wonder if I am seeing the same things through my eyes that the rest of the world is seeing through theirs.
It’s embarrassing when you tell someone you are on your way to meet them but then get caught up in your own world and completely forget about them–until two days later.
It’s embarrassing when you’re completely lost in the same small town you’ve lived in for the past five years because the road you usually take was blocked and you needed to turn down an unfamiliar street.
Aspie Writer, Adult Autism Is Embarrassing
Living with autism can create stress: there are difficulties that interfere with home and school life, friendship and romance, work and play, and even health.
Two Sides Of One Coin
Dr. Gaus encourages you to see autism spectrum differences as both vulnerabilities and strengths.
When our differences cause ongoing stress in many ares of life, you can feel helpless, focused on the negatives. However, in order to solve problems in your life, increasing your life satisfaction, you’ll need use a rational, objective approach.
Being objective, she suggests, means seeing your differences as both vulnerabilities andstrengths.
Remember you have many human characteristics in common with other people. All people in the world live with problems and stress. And your life is not always filled with stress.
Furthermore, every person with autism has different challenges, since no two people on the spectrum are alike.
There are four major categories of differences autism can produce in your life:
- thinking differences
- social differences
- emotional differences
- sensory and movement differences
These differences can make you more vulnerable to the challenges and demands of daily life by taxing your “stress immune system.”
First, autism spectrum differences your differences cause you to experience the world different from most people around you. As you experience life differently, you can interpret life differently and act differently than others, which can lead you to meet stressful events more often in your daily life than typical people.
Second, unless you deeply understand your differences, you may have fewer coping strategies available to you. Without coping strategies, you’re left unsure about how to handle many types of problems and demands life imposes on you.
For example, when family members make noises at your home, whether it’s singing, chewing loudly, or scraping chairs, you may experience sensory overload and stress without much time to recuperate.
Input, Processing, and Output
Dr. Gaus uses the examples of finding your keys on the middle of your hallway floor at home to explain how human information processing works.
During the input stage, the brain receives input from sense organs (eyes, ears, nose, mouth, touch) and filters out irrelevant data; this is also called perception.
So as you walk into your hallways, and see the keys in the middle of the floor, your brain is able to filter out the wallpaper, floorbaords, or carpet; it chooses to focus on the keys, and not on those other items, so that the visual input of the keys is what gets through to the processing area of the brain.
During processing, the brain analyzes the picture of the keys, comparing it to the pictures of other images stored in memory. From keys, to familiar keys, to my keys! Your brain then recognizes that the keys aren’t by the hook on the door, where they usually are, and makes a guess that you dropped them there by accident. Your brain may imagine that you’ll be frustrated looking for the keys on the hook in the future, so it makes a plan to pick up the keys and put them on the hook.
During output, you make a decision based on the data from input and processing. You carry out the physical act of picking up the keys and putting them on the hook.
Here’s Dr. Gaus’ summary of the above:
The human brain is processing information all the time: this is called cognitive activity.
New information goes through three stages: Input, Processing, and Output.
When all the stages run smoothly, the output is some action that helps a person adapt successfully to a situation– sometimes called adaptive behavior.
Dr. Gaus goes on to ask,
What if your brain…did not filter out irrelevant information and you did not even notice the keys on the floor?…did not identify the object on the floor as your set of keys?…did not think ahead about the consequences of not having the keys by the door?…did not make the plan to put keys back by the door?…did not keep your attention on the plan long enough to have you carry out the plan of putting the keys back in their place?
These operations of input, processing, and output work differently for people on the autism spectrum at any given time. People on the autism spectrum tend to experience problems related to thinking differences in two categories: a) problems withmanagement of information and b) problems with interpretation of information.
I’ll get into those specific categories in an upcoming post.
Aspie Writer (http://www.aspiewriter.com) illustrates how autism differences can create stress and embarrassment in her post, Adult Autism Is Embarrassing. When you read her article, you’ll have a full understanding of how this all ties together.
I hope you gained a better understanding of why living with autism is different. What’s your experience been?
Monday, September 23, 2013
Sunday, September 1, 2013
Nothing more than the web, in this new Millennium, underlines the old truth aboutnomen est omen. I could hardly find a more telling demonstration of the deep link between old-medieval sources research and today-web understanding (and researching).
Just to make a simple example: think at all the querelles about and around Internic, where people are buying and hoarding domainnames for vulgar commercial purposes: if I would have bought Altdorf.com, say, soon or later (probably not very soon, seen the slowness and incompetence shown in every web-related matter by all european local administrations :-) the swiss city of Altdorf would have to pay me in order to get it back. And that is exactly what has happened: if you check the following altdorf.com link, you will see how some clown (in this case "ultimate search inc" in Hong Kong) has bought it with this hope.
Whanna make money? Buy all domainnames corresponding to the big cities of, say, Morocco and wait for that country to catch up on the web (which btw is happening more quickly than you would suppose).
Domainnames are cheap, and you could buy yourself a dozen every year just for fun.
People do that all the time, as you may check using netcraft (which is useful also for other searching purposes, as explained elsewhere on searchlores).
Actually when you search for internic itself you'll immediately bump into the 'name' problem once again: dozens of commercial bastards have set up half-bogus internic sites, each one with a name slightly similar to internic, in order to cash easy money from all the zombies of this planet, unable to search and thus also unable to buy directly themselves their own domains from the real internic.
Here you can gaze in awe yourself, using the incredibly useful netcraft, at the high towers of names... discover how many people have already registered, say, altdorf.com
Think -moreover- at all the difficulties you will have, when searching, if you don't know the NAMES of the querries. Think reversely at how easy it is to find any application (for instance, say, softice) on the web, using search engines and/or the ftp-search servers, once you know (or imagine :-) THE EXACT NAMES the files or zippeed archives you are looking for have been stored into.
You'll often have to try it for yourself. You'll need to understand the 8.3 old dos convention. Try to access 'not found' pages, or pages you suppose should be there, alternating lower and uppercase (significant for Unix severs), or trying the suffixes *.htm, *.html, *.shtml. Try jpg and gif as suffixes for your target EXECUTABLES, try doc, pdf or txt as suffixes for your target PICTURES or mp3.
Many interesting approaches are listed on the 'rabbits' section.
Do you actually know what all these formatnames REALLY mean? Did you ever have a look at the format of -say- a jpg image? Do it. Hexedit it.
A searcher MUST be able to recognize a gif or a jpg image looking at the code.
It is extremely important that you can imagine synecdochically the NAMES of the targets you are searching! Note moreover that such names are a-changing all the time. This happens routinely for the names of the most interesting targets you may seek :-)
It is true that you can search for something even WITHOUT knowing it's exact name, but it is worth OVERESTIMATING the importance of names.
Compare the following searches (and try to understand why they work):
It is impossible to overestimate the importance of names on the web. Let's take a simple example: the robot.txt file, that is used to tell search engines which directories and files they should not index on a specific site. Thus anything that has been put inside a 'robots.txt' file will not be found by your searchqueries. This file is just a list of names. And you can access this file easily, looking for it in the main directory of your target site, entering per hand the URL with the following pattern:
Thus, once you have seen the names, you can type them directly into your browser in order to access the various 'non public' subdirectories and pages.
Another classical 'nomen est omen' problem is encountered when you search for programs. Let's take Wdasm for instance as an example, this is a 'speedy' disassembler written by Peter Urbanik (hi Peter!) that has helped whole generations of both wannabie and capable crackers. This program anyway is not known to be on the net under the nameform "wdasm" and its stemmings (wdasm89, wdasm.zip wdasmdis.exe etcetera), yet you'll probably fish it (through ftp, local/regional fishing, deja or agoras) in its 'w32dsm' nomenestomen incarnation... therefore anyone knowing this will be able to fetch this program, and those that don't know this wont be able to fetch it... it is as simple as that.
You begin to understand what I mean, don't you?
What I mean is that ANY program or game or image or sound is ALREADY somewhere on the web, you just need to know its name to fish it out.
But names (well... words) are also powerful WEAPONS.
As the reality cracking section of my site demonstrates, an interesting observation is that a correct use of TERMS when cracking reality, can help quite a lot (by the way: the very term 'reality cracking' is quite catchy eo ipso, should you have not noticed it... :-)
Rhetoric is a very neglected yet incredibly powerful science (these two aspects being most probably correlated :-)
Whomever reads (and heads) his "Lausberg" will soon be able to destroy anything in sight!
As an example let's take MacDonald. The experience demonstrates that simply explaining to the poor slaves how awful (and dangerous) is the food there, will not break the 'perceivness of coolness' that especially young zombies are frequently victim of. So what is necessary is to 'break', or to 'crack' their PERCEPTION, throwing against their teeths a 'truth revealing' phrase that will forever destroy the plastic wrappings i.e. the 'bounds' of their consumistic slavery.
This is extremely easy if -at times- you can build a powerful (and sharp) rhetorical statement.
I won't go here into the rethorical tricks hidden inside the phrase you have read. There is a section of my site that deals with this kind of tricks. Let us just state (and hope) that we will use always such tricks in order to 'illuminate' people for their own good (I repeat: let's hope it, who knows? Just cross your fingers and toes, trying to control feelings is always a very dangerous ave...)
Anyway: this is just a simple example: The real message is: you should never underestimate the amazing power of words! A capable linguist is as powerful (and as dangerous) as a capable advertisement 'creative' (these morons being evil dark forces whereas... us 'reversers'... being of course sons of the light :-)
Fact is, that few of those that have heard or read the above 'reverse shitting' definition will hencefort be able to feel once more - when eating a BigMac - their advertisement induced 'coolness'... See? Using a couple of well-chosen terms we have compensated (and destroyed) the power of their advertisement propaganda :-)
You wish to understand more about this 'nomen_est_omen' stuff? Here a 'medievistic' yet rather useful 'cut' (if you follow the three hints below you are in for a long ride... see you back in a couple of years time :-)
- As a foretaste in english:
Gudmund Schuette's Our forefathers ('The Gothonic nations'), Cambridge, Unipress, 1933 (especially vol.II) read it and be prepared to gasp in awe.
- to keep rolling (in German):
M.Schoenefeld, Woerterbuch der altgermanischen Personen- und Voelkernamen, Tilburg 1910, reprint Heidelberg 1965, his 'etymologischer index' is almost unsurpassed, note his assertion: "Zu den unvollkommensten Erzeugnissen der Menschen gehoeren unstreitig die Woerterbuecher"
- dulcis in fundo:
Ernst Foerstermann, Altdeutsches Namenbuch, Bonn 1900, reprint Muenchen 1966, this is a book that IMHO anyone researching to-day web names-matters should carefully and seriously study in order to learn some metodology... Bienenfleissig was Foerstermann...
Do not worry too much. This linguistic AND web-related problematic is quite relevant for all sort of searchers, yet there are different ways to 'countourn' (or even to solve) it. Reading the essays and lessons on my site you'll be again and again confronted with the old nomen est omen truth, and you'll find ways to avoid confronting it, paths that will go trough it and ways to harness its power for your own aims.
Tuesday, August 27, 2013
Wednesday, July 31, 2013
How Not to Die - Atlantic Mobile
Angelo Volandes's low-tech, high-empathy plan to revolutionize end-of-life care
Dr. Angelo Volandes is making a film that he believes will change the way you die. The studio is his living room in Newton, Massachusetts, a suburb of Boston; the control panel is his laptop; the camera crew is a 24-year-old guy named Jake; the star is his wife, Aretha Delight Davis. Volandes, a thickening mesomorph with straight brown hair that is graying at his temples, is wearing a T-shirt and shorts and looks like he belongs at a football game. Davis, a beautiful woman of Guyanese extraction with richly braided hair, is dressed in a white lab coat over a black shirt and stands before a plain gray backdrop.
"Remember: always slow," Volandes says.
"Sure, hon," Davis says, annoyed. She has done this many times.
Volandes claps to sync the sound. "Take one: Goals of Care, Dementia."
You are seeing this video because you are making medical decisions for a person with advanced dementia. Davis intones the words in a calm, uninflected voice. I'll show you a video of a person with advanced dementia. Then you will see images to help you understand the three options for their medical care.
Her narration will be woven into a 10-minute film. The words I'm hearing will accompany footage of an elderly woman in a wheelchair. The woman is coiffed and dressed in her Sunday finest, wearing pearls and makeup for her film appearance, but her face is vacant and her mouth is frozen in the rictus of a permanent O.
This woman lives in a nursing home and has advanced dementia. She's seen here with her daughters. She has the typical features of advanced dementia …
Young in affect and appearance, Volandes, 41, is an assistant professor at Harvard Medical School; Davis, also an M.D., is doing her residency in internal medicine, also at Harvard. When I heard about Volandes's work, I suspected he would be different from other doctors. I was not disappointed. He refuses to let me call him "Dr. Volandes," for example. Formality impedes communication, he tells me, and "there's nothing more essential to being a good doctor than your ability to communicate." More important, he believes that his videos can disrupt the way the medical system handles late-life care, and that the system urgently needs disrupting.
"I think we're probably the most subversive two doctors to the health system that you will meet today," he says, a few hours before his shoot begins. "That has been told to me by other people."
"You sound proud of that," I say.
"I'm proud of that because it's being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—"
"We torture people before they die," Davis interjects, quietly.
Volandes chuckles at my surprise. "Remember, Jon is a reporter," he tells her, not at all unhappy with her comment.
"My father, if he were sitting here, would be saying 'Right on,' " I tell him.
Volandes nods. "Here's the sad reality," he says. "Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, 'Do you believe what we did to that patient? Do you believe what we put that patient through?' Every single physician has stories. Not one. Lots of stories.
"In the health-care debate, we've heard a lot about useless care, wasteful care, futile care. What we"—Volandes indicates himself and Davis—"have been struggling with is unwanted care. That's far more concerning. That's not avoidable care. That's wrongful care. I think that's the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time."
Unwanted treatment is American medicine's dark continent. No one knows its extent, and few people want to talk about it. The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.
In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. (I wrote about his decline in an article for this magazine in April 2010.) Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. "Use it or lose it," he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, "I am never going back there." (He never did.)
What should have taken place was what is known in the medical profession as The Conversation. The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired. Alas, evidence shows that The Conversation happens much less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don't really understand. Many doctors don't make time for The Conversation, or aren't good at conducting it (they're not trained or rewarded for doing so), or worry their patients can't handle it.
This is a problem, because the assumption that doctors know what their patients want turns out to be wrong: when doctors try to predict the goals and preferences of their patients, they are "highly inaccurate," according to one summary of the research, published by Benjamin Moulton and Jaime S. King in The Journal of Law, Medicine & Ethics. Patients are "routinely asked to make decisions about treatment choices in the face of what can only be described as avoidable ignorance," Moulton and King write. "In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose."
Though no one knows for sure, unwanted treatment seems especially common near the end of life. A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of overmedicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.' "
"Sometimes you block the near exits, and all you've got left is a far exit, which is not a dignified and comfortable death," Albert Mulley, a physician and the director of the Dartmouth Center for Health Care Delivery Science, told me recently. As we talked, it emerged that he, too, had had to fend off the medical system when his father died at age 93. "Even though I spent my whole career doing this," he said, "when I was trying to assure as good a death as I could for my dad, I found it wasn't easy."
If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."
Unwanted treatment is a particularly confounding problem because it is not a product of malevolence but a by-product of two strengths of American medical culture: the system's determination to save lives, and its technological virtuosity. Change will need to be consonant with that culture. "You have to be comfortable working at the margins of the power structure within medicine, and particularly within academic medicine," Mulley told me. You need a disrupter, but one who can speak the language of medicine and meet the system on its own terms.
Angelo Volandes was born in 1971, in Brooklyn, to Greek immigrants. His father owned a diner. He and his older sister were the first in their family to go to college—Harvard, in his case. In Cambridge, he got a part-time job cooking for an elderly, childless couple, who became second parents to him. He watched as the wife got mortally sick, he listened to her labored breathing, he talked with her and her husband about pain, death, the end of life. Those conversations led him to courses in medical ethics, which he told me he found abstract and out of touch with "the clinical reality of being short of breath; of fear; of anxiety and suffering; of medications and interventions." He decided to go to medical school, not just to cure people but "to learn how people suffer and what the implications of dying and suffering and understanding that experience are like." Halfway through med school at Yale, on the recommendation of a doctor he met one day at the gym, he took a year off to study documentary filmmaking, another of his interests. At the time, it seemed a digression.
On the very first night of his postgraduate medical internship, when he was working the graveyard shift at a hospital in Philadelphia, he found himself examining a woman dying of cancer. She was a bright woman, a retired English professor, but she seemed bewildered when he asked whether she wanted cardiopulmonary resuscitation if her heart stopped beating. So, on an impulse, he invited her to visit the intensive-care unit. By coincidence, she witnessed a "code blue," an emergency administration of CPR. "When we got back to the room," Volandes remembered, "she said, 'I understood what you told me. I am a professor of English—I understood the words. I just didn't know what you meant. It's not what I had imagined. It's not what I saw on TV.' " She decided to go home on hospice. Volandes realized that he could make a stronger, clearer impression on patients by showing them treatments than by trying to describe them.
He spent the next few years punching all the tickets he could: mastering the technical arts of doctoring, credentialing himself in medical ethics, learning statistical techniques to perform peer-reviewed clinical trials, joining the Harvard faculty and the clinical and research staff of Massachusetts General Hospital. He held on to his passion, though. During a fellowship at Harvard in 2004, he visited Dr. Muriel Gillick, a Harvard Medical School professor and an authority on late-life care. Volandes "was very distressed by what he saw clinically being done to people with advanced dementia," Gillick recalls. "He was interested in writing an article about how treatment of patients with advanced dementia was a form of abuse." Gillick talked him down. Some of what's done is wrong, she agreed, but raging against it would not help. The following year, with her support, Volandes began his video project.
The first film he made featured a patient with advanced dementia. It showed her inability to converse, move about, or feed herself. When Volandes finished the film, he ran a randomized clinical trial with a group of nine other doctors. All of their patients listened to a verbal description of advanced dementia, and some of them also watched the video. All were then asked whether they preferred life-prolonging care (which does everything possible to keep patients alive), limited care (an intermediate option), or comfort care (which aims to maximize comfort and relieve pain). The results were striking: patients who had seen the video were significantly more likely to choose comfort care than those who hadn't seen it (86 percent versus 64 percent). Volandes published that study in 2009, following it a year later with an even more striking trial, this one showing a video to patients dying of cancer. Of those who saw it, more than 90 percent chose comfort care—versus 22 percent of those who received only verbal descriptions. The implications, to Volandes, were clear: "Videos communicate better than just a stand-alone conversation. And when people get good communication and understand what's involved, many, if not most, tend not to want a lot of the aggressive stuff that they're getting."
Even now, after years of refinement, Volandes's finished videos look deceptively unimpressive. They're short, and they're bland. But that, it turns out, is what is most impressive about them. Other videos describing treatment options—for, say, breast cancer or heart disease—can last upwards of 30 minutes. Volandes's films, by contrast, average six or seven minutes. They are meant to be screened on iPads or laptops, amid the bustle of a clinic or hospital room.
They are also meant to be banal, a goal that requires a meticulous, if perverse, application of the filmmaker's art. "Videos are an aesthetic medium; you can manipulate people's perspective," Volandes says. "I want to provide information without evoking visceral emotions." Any hint that he was appealing to sentiments like revulsion or fear to nudge patients toward a certain course of treatment would discredit his whole project, so Volandes does all he can to eliminate emotional cues. That is why he films advanced-dementia patients dressed and groomed to the nines. "I give them the nicest image," Volandes told me. "If with the nicest image we show a huge effect, you can imagine what it would be like if they really saw the reality."
The typical video begins with Davis explaining what the viewer is about to see, stating plainly facts that doctors are sometimes reluctant to mention. She says, for example: People with advanced dementia usually have had the disease for many years and have reached the last stage of dementia. They are nearing the end of life. The video cuts to a shot of a patient. Then Davis outlines the three levels of care, starting with the most aggressive. Over footage of CPR and mechanical ventilation, she explains that in most cases of advanced dementia, CPR does not work, and that patients on breathing machines are usually not aware of their surroundings and cannot eat or talk. Then she describes limited care and comfort care, again speaking bluntly about death. People who choose comfort care choose to avoid these procedures even though, without them, they might die. She concludes by recommending The Conversation.
It seems a minor thing, showing a short video. As, indeed, it will be, if it happens only occasionally. I didn't get my head around the scale of Volandes's ambition until I understood that he wants to make his videos ubiquitous. His intention is not only to provide clearer information but, more important, to trigger The Conversation as a matter of medical routine. "We're saying, 'You're not doing your job if you are not having these conversations in a meaningful way with patients and their families,' " he tells me. "If every patient watched a video, there's standardization in the process. That's why I call it subversive. Very few things in medicine can change the culture like that."
Routine use, however, is far, far away. According to Volandes, only a few dozen U.S. hospitals, out of more than 5,700, are using his videos. I spoke with physicians and a social worker at three health systems that are piloting them, and all were very enthusiastic about the results. Volandes is particularly hopeful about a collaboration with the Hawaii Medical Service Association, the state's dominant health-insurance provider, which is piloting the videos in hospitals, nursing homes, and doctors' offices. Officials say they hope to expand use statewide within three years. Right now, though, Volandes's videos have a limited reach.
The problem is not his product but the peculiar nature of the market he wants to push it into. His innovation is inexpensive and low-tech, and might avert misunderstanding, prevent suffering, improve doctor-patient relationships, and, incidentally, save the health-care system a lot of money. He goes out of his way not to emphasize cost savings, partly because he sees himself as a patients'-rights advocate rather than a bean counter, and partly because it is so easy to demagogue the issue, as Sarah Palin did so mendaciously (and effectively) in 2009, when she denounced end-of-life-care planning as "death panels." Anyone who questions medical maximalism risks being attacked for trying to kill grandma—all the more so if he mentions saving money. For all its talk of making the health-care system more rational and less expensive, the political system is still not ready for an honest discussion. And the medical system has its own ways of fighting back.
Volandes works on his videos ceaselessly. He has curtailed his medical practice and his teaching responsibilities, both of which he misses, and last year gave more than 70 speeches evangelizing for the video project. In an effort to batter the medical establishment into submission with the sheer weight of scientific evidence, he has conducted 13 clinical trials using videos to depict different diseases and situations, and he has seven more studies in the pipeline. He says he gets by on three or four hours of sleep a night. The project has taken over his house. Davis would like her living room back; there are floodlights and a big gray backdrop where her paintings should be.
Volandes thinks he can sustain this pace for perhaps five years—by which time he hopes to have revolutionized American medicine. Davis tries to dial back his expectations, but he resists. "Not when I have nurses and doctors use words like torture as often as they do," he says. "In order to make a change, you've got to be ambitious. If not, then just publish and get your tenure and move on."
During my visit, I realized that I had encountered Volandes's type before, but in Silicon Valley. Volandes has entrepreneurial obsessive-compulsive disorder: the gift, and curse, of unswerving faith in a potentially world-changing idea.
It is not a huge exaggeration to say that obsessive entrepreneurs, from Cornelius Vanderbilt to Steve Jobs, made America great. It is also not a huge exaggeration to say that health care, more than any other nongovernmental sector, has made itself impervious to disruptive innovation. Medical training discourages entrepreneurship, embedded practice patterns marginalize it, bureaucrats in medical organizations and insurance companies recoil from it. And would-be disrupters are generally disconnected from patients, their ultimate customers: they have to take their innovations to physicians, who are notoriously change-averse, and then they must get the government—Medicare, first and foremost—to approve and pay for them. Imagine that Jeff Bezos, when he was starting Amazon, had needed to ask permission from bookstores and libraries.
Volandes, therefore, will fail. That is to say, he will fail if success means revolutionizing the doctor-patient relationship and making The Conversation ubiquitous within five years. Meanwhile, if the American health-care system does not learn how to harness the energy and ideas of people like Volandes, it will fail. Somewhere between those failures lies a path forward. We know medical culture can change for the better; it takes the treatment of pain much more seriously than it used to, for example, and it has embraced hospice care.
The best news about U.S. health care today is that a lot of reform-minded entrepreneurship is bubbling up from within. Volandes is not alone. So many patients and doctors and family members feel marginalized and bureaucratized and overwhelmed that some health systems and insurers, in spontaneous mini-rebellions, are starting to innovate, often on their own dime. I think of Dr. Brad Stuart of Sutter Health at Home, who is building a new late-life-care system that bridges the gap between hospital and hospice, allowing the very sick to receive more care at home; I think of Dr. Derek Raghavan of Carolinas HealthCare System's Levine Cancer Institute, who is building a "cancer center without walls" that uses telemedicine and other tools to make state-of-the-art treatment available to patients, regardless of where they live. I think of Dr. Woody English of Providence Health and Services, who is 67 and wants to make a difference before he retires. At his instigation, Providence has begun using Volandes's videos. "The changes will come locally," English told me, "not nationally." When I look at him and Volandes and the others, I see not only a test of whether the health-care system's medical culture can change but also a test of whether its business culture can change—and that change may, in the end, be even more important.
The morning after the shoot, Volandes shows me some of the footage he plans to use. We watch a patient with advanced Alzheimer's being fed through a tube that has been surgically inserted into her stomach. An attendant uses a big syringe to clear the tube, then attaches a bag of thick fluid. Over the footage, Davis's voice will say, Often, people hope tube feeding will help the patient live longer. But tube feeding has not been shown to prolong or improve the quality of life in advanced dementia. Tube feeding also does not stop saliva or food from going down the wrong way.
Volandes is explaining to me that tube feeding is overused in elderly dementia patients, but my mind has floated back to 2009. My father's disease, by then, had destroyed his ability to protect his airway when he swallowed; food, drink, and saliva ended up in his lungs. He coughed violently when he ate or drank. Doctors mentioned tube feeding as an option, and well-intentioned friends nudged us in that direction. But his friends had no real idea what tube feeding entailed, and neither did I, and neither did he.
"Let me ask you this," Volandes says. "Suppose I'm having a conversation with you about whether your father would want this. And I said 'feeding tube,' and you're thinking to yourself, Food, yeah, I could give food to my mom or dad. We just want to make sure that regardless of the way the gastroenterologist is presenting the procedure, the patient's loved ones know this is what we're talking about."
Not long before my father died, I asked a hospice nurse about tube feeding. He told me, with grim clarity: "I think that would be cruel." I remember that nurse with gratitude, because he was right. But "that would be cruel" was not a substitute for The Conversation.