How not to die

Interesting article. What I can tell you is that I think the good doctor from harvard numbers are skewed and probably represent what is happening in university hospitals as opposed to what happens in your local community hospital. Hospice care which originally was only for patients dying from cancer, has exapnded to patients dying from all sorts of conditions, and just recently started to help treat and comfort patients that have chronic conditions that need palliative care, but not necessarily end of life care. I would daresay that the vast majority of family practioners in this country have had "the conversation" with their patients, and in most states living wills are promoted quite extensively.

Unfortunately, a lot of the dribble that comes out of ivory towers has little or no connection to what happens in the "real world." Most doctors spend more time on patient education, which is what this is all about", than the do on actual "patient care." Furthermore, contrary to some of the insinuations of the article, which I think describes the experience of a physician who has spent his entire career in the ivory tower, most doctors are quite empathetic to the trials and tribulations of their patients, and have a primary goal of providing their patients the best care possible, with as little suffering as possible. I think they accomplish this quite well most of the time.

As for the video aspect of this, I sort of find that unfortunate. One does not need to see what a dementia patient looks like, or what a code looks like to "scare" them into making an end of life decision. This, I personally think, does more to dehumanize and depersonalize, the decision than help make it an informed decision. Disease process are a continuum, and not every demented person is staring into space without any cognition of what is going on about them. That is the end stage of the process, and quite appropriately many of these people get what is called "comfort measures."

I think what the good doctor from Harvard is missing unfortunately is that he is not the first doctor who has done what he is doing, and it is already being done in community hospital settings, and doctor's offices all over the country.

Speak to you family doctor about it, his/her answer may surprise you.
 
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.”
 
I am aware of his assertion that in his study "videos communicated" what he wanted to communicate better than speaking to the patient. Having not read the study, and not knowing his study design I do not really want to comment on whether it was an appropriately done study, or an appropriately designed study(though where it was published may say volumes). However, I think it is fair to say that this may say more about the way he communicates to the patient more than about the value of videos to communicate what he should be able to communicate.

What I can also say that I think the average non academic physician is a lot more successful in helping a patient make a informed and appropriate decision about end of life decisions than is suggested by the good doctor from harvard. Unfortunately, there is a true disconnect between what the academic physicians think about and what they research, and what happens in real life non academic hospitals, and practices, where the emphasis is on patient care, and not on doing studies to get grants, and to teach.
 
I think the subject's position is that many physicians lack the training or the makeup required to effectively communicate to patients and/or responsible decision makers what the options are and, more importantly, what they "look like."

My mother died in the ICU when, after it became apparent that her lungs could no longer support her continued living, and in accordance with her explicit instructions, her breathing tube was removed. It was terrible, though I think the worst part of it was the clinical setting, watching as the numbers representing the very physical force of her life declined toward, and attained, zero, followed by the myriad alarms beeping and wailing as they do.

My father, three years later, died in hospice, about two weeks after he simply stopped communicating with us; the hospice nurse knew, immediately, that he was going to be gone and sent us to his side. It was, if not dignified, at least peaceful, though I still cannot write about it without crying.

I know which one I want.
 
Being a curmudgeon, what troubles me most about the Dr - patient relationship is the authoritarian attitude, and the decisionmaking that is assumed. Things I've heard from MDs that grate on me, and I think many others although they may not speak up:

"We are going to admit you to the xxx facility." No you aren't, not if I have anything to say about it. However when a patient is not responsive I can see this being delegated to the spouse or child, or other person responsible.

"We will be administering a feeding tube." Uh, hold on there buddy.

"I have ordered an IV of normal saline." Well, better have the nurse find your vein cause it's not going in mine as long as I can reach the toilet and the vending machine.

Sure, doctors are much more knowledgeable about care than the patient but so much that isn't needed that I'm very leery of letting wholesale medicine start making decisions for me. Watching one parent go through much of that is a real eye opener.
 
I have an "unwanted care" story, but can't share really until it all settles, since there's entities fighting over the payment of same. I know what was authorized and what was done. It definitely happens.
 
Reading some stories of unwanted treatment kind of highlight to me the good (if you know what I mean) experiences with end-of-life care for my grandmother, mother, and father. All were in hospice. Each passed away at home (albeit my mother's "home" was an alzheimer's unit in assisted living).

bottomline: there are doctors/nurses/hospitals out there that know when to recommend hospice.
 
Regardless of the details of the study - it's good food for thought. Anyone who has filled out a living will or advanced directives has usually just seen a list of check boxes and either read a quick description or had a doc or nurse give a quick explanation. This story told me that I need to take a longer, more serious, look at what my instructions are.
 
Bob Noel said:
Reading some stories of unwanted treatment kind of highlight to me the good (if you know what I mean) experiences with end-of-life care for my grandmother, mother, and father. All were in hospice. Each passed away at home (albeit my mother's "home" was an alzheimer's unit in assisted living).

bottomline: there are doctors/nurses/hospitals out there that know when to recommend hospice.
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This story seems to be more about the perceived lack in the abilty of physicians to communicate to patients and using a video as a surrogate then the appropriate time to recommend hospice. We need to be real careful when suggesting that watching a video is considered an adequate way to convey the need for any treatment option in medicine. I have not seen the video, but the description of the dementia one I read describes a video that is more a scare tactic to convince people to end care, possibly prematurely, than to allow someone to make an appropriate decision as to when it is time to stop curative treatment, and begin palliative care.

A discussion with your physician, will do as much as the video does, and more. A video is pretty impersonal, and I for one would be looking for a new doctor if I went to their office and was shown the dementia video, or maybe the cancer video in which a patient with endstage cancer, cahectic, and in pain with the voice over telling me in smoothing tones that I will end up this way eventually, and then have "the conversation." This is a way that uses "scare tactics" to convince the patient to make a decision as opposed to the patient making a decision based on the pros and cons of the treatment options.

Unfortunately, as Obamacare, and Medicare in particular continues to cut the reimbursement to physicians in this country, increase the paperwork, and nonreimbursable requirements to taking care of patients, and in essence force physicians to see more patients so that they can make ends meet, doctors will have exponentially less time to provide personalized and personal patient care, and will be forced to seek out new ways to transmit advice and information to patients, videos like this will become more common. Instead of your doctor explaining to you in person why you need such and such treatment, you will sit in the exam room, and watch a video on the computer, or maybe he will just email it to you and you can watch it at home, and then see the doctor to have "the conversation." This is what this doctor is basically proposing. I for one think this is a poor idea.
 
Some time back, I recognized that today we live better and die worse than ever before. Medicine has come so far, we are able to greatly extend the healthy, enjoyable portion of many people's lives. The downside is that we are also able to drag out the process of death.

I lost my mother about a year ago after a long decline with COPD caused by long term tobacco use. Mom also suffered from creeping dementia. Of Mom's last 6 months, she spent 5 out of the 6 between the ICU, the regular wing of the hospital, and various live-in therapy centers, much of the time on a respirator, all of it on O2, and virtually all of it incontinent and not at all "with it". In hindsight, I don't think she would have liked to go out that way. I certainly wouldn't.
 
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docmirror said:
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.”
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Those are amazing stats.
 
douglas393 said:
A discussion with your physician, will do as much as the video does, and more.

Unfortunately, as Obamacare, and Medicare in particular continues to cut the reimbursement to physicians in this country, increase the paperwork, and nonreimbursable requirements to taking care of patients, and in essence force physicians to see more patients so that they can make ends meet, doctors will have exponentially less time to provide personalized and personal patient care, and will be forced to seek out new ways to transmit advice and information to patients, videos like this will become more common.
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I've had some moderately serious health problems. Nothing near fatal thank goodness, but still pretty serious. I am thinking back on the longest discussion I had with a MD, and I can say it was less than 20 minutes. Now, you say that we should have a discussion with our MD, and in the next para you point out quite accurately that they will have less, and less, and less time to have that quality discussion in the future.

I think your negative focus on the video aspects is misplaced. The video can do far more for understanding of a persons potential future than all the typical MD talks ever. That presumes that the MD will have the ability, time, and willingness to be completely up front about end of life care. In the privacy of the physicians lounge, all the real stories come out about end of life. But will that info ever be relayed to the person trying to make a value decision about the last 2-10 months of their life?

I say the answer has been and will be no. This guy is making progress that will not only bring the bleak future into clear relief, but as a side benefit will lower the cost of unneeded health resources and reduce overall costs.

He's using a tool to make the true future of the end of life come 'alive' if you will. If it's misused as a tool for the MD to get out of their responsibility then it's being misused like many other tools. If it will aid a MD in showing the options to someone in that stage, then more power to him and the work he's doing will help many people die in peace and with some dignity.
 
Geico266 said:
Those are amazing stats.
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And says more about how poorly those that were doing the verbal communication were than the value of the videos. I can tell you that those stats do not even come close to describing what occurs in nonacademic hospitals on a day to day basis where I daresay close to 95% of the people who are appropriate for comfort measure care chose comfort care and no videos are utilized. This article is more about the poor communication skills that are occuring and how a video bandaid is being used as a crutch for the lack of those skills than about the usefulness of a video replacing the physicians role in providing guidance in the available options and the pros and cons of the options.
 
docmirror said:
I've had some moderately serious health problems. Nothing near fatal thank goodness, but still pretty serious. I am thinking back on the longest discussion I had with a MD, and I can say it was less than 20 minutes. Now, you say that we should have a discussion with our MD, and in the next para you point out quite accurately that they will have less, and less, and less time to have that quality discussion in the future. .
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Which is why I think things like these videos will become more common. However, I still think they are inappropriate, and inadequate, and insulting to the patient. The time has come for America to support the health professionals and stop the government from the constant unrelentless war of health care in this country. Medicine done correctly is more about the human touch, than about videos, X-rays, books, and pamphlets. A good physician can in 5 minutes impart more useful information to a patient than any video can. The problem is that physicians are being extended in ways that are unsustainable, and the physician-patient interaction is suffering. Replacing the physician-patient dialog with a video is just a way for the physician to avoid telling a patient something that is unfortunate, and scary. I think it is awful to say to a patient or their family, I have some bad news, watch this video and then we will have "the conversation." That is terrible medicine, it is unempathetic, cold, and sterile. This is the time the physician need to be leaning foward, turning off his beeper, and holding hands with the patient and saying let's talk for a while. Anything else just is not good enough.

docmirror said:
I think your negative focus on the video aspects is misplaced. The video can do far more for understanding of a persons potential future than all the typical MD talks ever. That presumes that the MD will have the ability, time, and willingness to be completely up front about end of life care. In the privacy of the physicians lounge, all the real stories come out about end of life. But will that info ever be relayed to the person trying to make a value decision about the last 2-10 months of their life?
I say the answer has been and will be no. This guy is making progress that will not only bring the bleak future into clear relief, but as a side benefit will lower the cost of unneeded health resources and reduce overall costs.
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The reality is that in the nonacademic centers of the US these conversations occur everyday, and multiple times every day. Patient's are not dumb, the majority of them know more about how the disease is affecting them than their physician. They also know when it is time for comfort measures. It is the physician's responsibility to be there to help them make this decision, which by the way is the hardest decision a person will ever make. A video does not accomplish this, nor should it replace the physicians responsibilities to the patient. I think you underestimate what a good physician in a nonacademic center does on a daily basis. Physicians every day relay this information to patients and their families and help them make these decisions in an appropriate and empathetic fashion, which a video cannot do.

This guy is using a video to supplant his inability to face a family and provide them with bad news in an empathetic fashion. He is much more concerned about going to the physicians lounge to talk about the awful things he is doing and how a video is going to change that, than looking at how he can improve himself as a caring human being, and physician and actually provide personal and empathy to a dying person. This is more about treating a number than caring for a patient, and I personally think it stinks. If this is progress, it is only further progression of the American health system into a depersonalized, number driven machine.

docmirror said:
He's using a tool to make the true future of the end of life come 'alive' if you will. If it's misused as a tool for the MD to get out of their responsibility then it's being misused like many other tools. If it will aid a MD in showing the options to someone in that stage, then more power to him and the work he's doing will help many people die in peace and with some dignity.
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You are right it is "tool to make the true future of the end of life come 'alive', but it is cold metal tool being used to hammer something in an almost violent fashion. This is a time, as I think I have already said a number of times before, where the need is for empathy, warmth, and a personal approach, not a cold, uncaring, harsh video. It's only use is to save the physician time, it does nothing for the patient.

You are right that the video will help many people die with peace and some dignity, but this is already being done quite well by the present system of hospice in this country. His numbers do not represent what already is going on in nonacademic hospitals on a daily basis. As I stated before, he lives and works in an Ivory tower, and is out of touch with reality as far as I am concerned.

Having been involved in many end of life decisions, I can tell you from experience that some doctors are quite good at providing the information in a concise, but empathetic way, and others well are not as good.

These decisions are an emotional event, and the impersonal video I personally think is demeaning and insulting to the patient. It seems to me that saying to a patient I think you need a make a decision about what you want to do with your mother who is going to have end stage Alzheimer's disease, watch this video, and tell me what you are going to do. Sorry, but watching a video does not work for me, and if a physician did it this way to me or one of my family members I would be looking for a new physician.
 
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I appreciate the effort that Dr Volandes is putting into the videos. They may or may not be your thing, but I think any effort that goes into communicating honestly and realistically to a patient about their future, whether words, videos, literature, etc. is to be commended. More so if they’re facing a terminal illness.
 
I think if we could fix the problem of DR - patient communication, or more accurately the problem of DR to patient communication the videos would not be necessary or even have an effect. The studies show that there is a problem, and fixing it will be the job of the medical schools. But - as the article pointed out the medical system is lethargic, and monolithic(except in the findings of Viagra, where it moved with blistering speed). Change is not easy, and changing MD behavior even more so.

For those few MDs out there who can and will take the time to have The Discussion, more power to them, and they are surely a vanishing breed. For the rest of the MD community, this video might be the best tool to use to break through their own reticence.

The whole thing reminds me of the movie 'The Shootist'. John Wayne's last film. He goes to Jimmie Stewart playing a doctor who has to give him the bad news that he's got gut cancer. And then he goes on to tell him his last weeks will be full of pain, suffering, and humiliation. Of course, the Duke goes out with his boots on after hearing the unvarnished truth.
 
docmirror said:
I think if we could fix the problem of DR - patient communication, or more accurately the problem of DR to patient communication the videos would not be necessary or even have an effect. The studies show that there is a problem, and fixing it will be the job of the medical schools. But - as the article pointed out the medical system is lethargic, and monolithic(except in the findings of Viagra, where it moved with blistering speed). Change is not easy, and changing MD behavior even more so.

For those few MDs out there who can and will take the time to have The Discussion, more power to them, and they are surely a vanishing breed. For the rest of the MD community, this video might be the best tool to use to break through their own reticence.

The whole thing reminds me of the movie 'The Shootist'. John Wayne's last film. He goes to Jimmie Stewart playing a doctor who has to give him the bad news that he's got gut cancer. And then he goes on to tell him his last weeks will be full of pain, suffering, and humiliation. Of course, the Duke goes out with his boots on after hearing the unvarnished truth.
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Believe me, medical schools and residency programs spend a huge amount of time on teaching and perfecting physician-patient communication. Continuing education for physicians also do this. The issue is not MD behavior as much as it is the business of medicine. Physicians want to spend as much time with a patient as the patients needs, but need to balance that with the need to keep the lights on in the office, and unfortunately even though the expenses of running a medical practice go up faster than inflation, the reimbursement the physician gets goes down or at best stays the same, and the amount of paperwork the physician needs to do to take care of patients goes up. You do the math, it is unsustainable, and as a result of the finite time of a day, the time a physician spends with a patient will go down. This fustration is what is discussed physician lounges everyday, not what awful things we did to Mr. Smith. This is why physicians are leaving the practice of medicine in droves never seen before. This is why physicians as a group are unhappier with there decision to practice medicine in higher numbers than ever before. I just saw a survey of neurologists where just under 50% of neurologists were happy with there decision to become a neurologist, and just about the same number felt that reimbursement was inadequate for what they do. This was considered a positive thing by authors of the article. Really????

Unfortunately, videos, and interactive computer programs are going to become more common, as physicians find it more and more difficult to successfully balance the need for patient care with the demands of the federal government and insurance companies to provide that care. You may consider this progress and a positive direction, I for one consider it regression, and the wrong direction.
 
Alan Alda's class in Medical School, in "communication" is completely, and totally booked.

The trouble is always, what was said vs what was heard. And communication is the Slowest, least efficient part of medicine. We can speed up everthing else, but not that.

Doctors have to be taught how to listen. I think most everything else falls out from there.....and I mean really listen. The students take their cures from teh professors.

Prof: UI-College of Medicine at Peoria
 
This guy can't solve the problems of Obamacare. Blaming that for poor patient management might be true to a significant extent but it can't be used as a cudgel against someone who is trying to fix the problem the way he thinks is right.

I just had a talk with my daughter who is borderline genius about not going to med school. This country is going to rue the day they socialized medicine because kids like mine are going on to chemical engineering grad school rather than into neurosurgery. The stress is lower, the pay is better, and the working hours and hassle is a lot less.

Whatever med schools are doing about MD patient relationship and respect isn't working. I've seen it first hand. My internist is about 60 and we have a real good relationship. I used to take my kids to their doctor who was in his late 30s and what a difference. I could hear them talking in the hall and what I overheard was not very professional.

I don't pretend to have the answer, but I can applaud a guy who's at least working in a direction that shows promise. BTW - now you are the longest relationship I've had with an MD. While I have your attention, it hurts when I do this.... lol
 
SCCutler said:
I think the subject's position is that many physicians lack the training or the makeup required to effectively communicate to patients and/or responsible decision makers what the options are and, more importantly, what they "look like."

My mother died in the ICU when, after it became apparent that her lungs could no longer support her continued living, and in accordance with her explicit instructions, her breathing tube was removed. It was terrible, though I think the worst part of it was the clinical setting, watching as the numbers representing the very physical force of her life declined toward, and attained, zero, followed by the myriad alarms beeping and wailing as they do.

My father, three years later, died in hospice, about two weeks after he simply stopped communicating with us; the hospice nurse knew, immediately, that he was going to be gone and sent us to his side. It was, if not dignified, at least peaceful, though I still cannot write about it without crying.

I know which one I want.
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My condolences for your losses.
 
docmirror said:
This guy can't solve the problems of Obamacare. Blaming that for poor patient management might be true to a significant extent but it can't be used as a cudgel against someone who is trying to fix the problem the way he thinks is right.

I just had a talk with my daughter who is borderline genius about not going to med school. This country is going to rue the day they socialized medicine because kids like mine are going on to chemical engineering grad school rather than into neurosurgery. The stress is lower, the pay is better, and the working hours and hassle is a lot less.

Whatever med schools are doing about MD patient relationship and respect isn't working. I've seen it first hand. My internist is about 60 and we have a real good relationship. I used to take my kids to their doctor who was in his late 30s and what a difference. I could hear them talking in the hall and what I overheard was not very professional.

I don't pretend to have the answer, but I can applaud a guy who's at least working in a direction that shows promise. BTW - now you are the longest relationship I've had with an MD. While I have your attention, it hurts when I do this.... lol
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As far as I am concerned there is absolutely no excuse for poor patient management, a patient and their family deserves to get whatever time that is necessary to deal with their pertinent issues. Unfortunately, as Dr. Chien quite correctly points out much of what is communicated between a patient and their health care provider is not recognized. Study after study has shown that a patient retains about 10% of what a physician tells them, and a physician interrupts a patient after about 30 seconds to a minute.

I understand where this Harvard doc is coming from, however, I think it does more to degrade the physician patient interaction, then help it. Just went through one of these situations today, and tried to imagine myself telling the family to watch a video and then we would have "the conversation." It would have not been pretty. Instead spent as much time as the family needed and they were more than appreciated, understood the gravity of the situation, and made the decision appropriate to make.

Unfortunately, you are right about who goes into medicine today, and unfortunately the future does not look too bright. Why spend a minimum of 12 years of your life to learn to do something, and acquire enough debt to purchase a nice house in an upscale neighborhood, so you can spend the next 30 years of your career being told that some turd with barely a high school education gets to tell you what you can and cannot do for your patients, being told by the government that you cannot be trusted to make the right decisions for your patients and so they will tell you what you have to do, and if the outcome is anything but perfect(which in medicine is not unusual--too many variables, and not enough constants) expect not to get paid, and even if it is perfect, but someone(not necessarily you) fails to do the paperwork and documentation correctly any place in the chart do not expect to paid.

Do not get me started, all I can say is do not let your children become doctors!
 
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