January 04, 2007
This is an important point by Graham: You hear a lot of folks bravely inveighing against heroic end-of-life measures and excessive spending in the final six months, but those final six months are only definitively final after the patient has died. Before that certificate is signed, however, it's rarely perfectly clear how much time they have left, how well they'll respond to treatment, and whether heroic measures may result in miraculous improvements. And fairly decent example of this is Art Buchwald who, a couple months ago, made headlines for refusing dialysis and entering into Hospice to die. A few months later, he made some more headlines for stubbornly not dying, admitting failure, and eventually checking back out of Hospice. So it's all well and good to look back and say, with certainty, that X, Y, and Z expenditure was useless because the patient died shortly thereafter, but doing the same with a live patient who retains a chance at survival is rather different.
January 4, 2007 | Permalink
I thought you might find this post by the Cheerful Oncologist, about palliative care interesting. It makes some very interesting points about how too many doctors deal with end of life issues.
While I find hospices play an essential role at the end of many lives, I am disturbed that they also make it much easier for doctors to throw their hands up. It's a tough issue, even tougher on doctors who specialize in, what are often or always, terminal illneses. But I think there is serious value to many patients, to have their doctor stick it out to the end. I know that my uncle was comforted by his doctor's occasional visits, while he spent his last days in the hospice, dying of AIDS.
At the same time, it is rare that doctor's visits will amount to anything but watching another patient die. Tough call, but I have a lot of respect for doctors that follow all the way through the palliative care.
Posted by: DuWayne | Jan 4, 2007 12:56:10 PM
This points to a larger issue. There is the bias in medicine to reduce everything to statistical analysis, and thereby, deny that medicine is an inexact science. In other words, they don't know everything about the human body, but they want to proceed like they do. The result is that they will ignore the totality of evidence in favor of statistical analysis of likely outcomes. I have first hand knowledge from personal experience of this, and it's an interesting thing to watch your doctor deny possibilites just because they aren't likelihoods. In my case, it was a bad reaction to the medication that I was on.
Posted by: akaison | Jan 4, 2007 1:31:35 PM
I get your point, but I've seen the other side as a hospital RN. Our typical patient was in their 80's, with multiple problems affecting heart, lungs, kidneys, mobility, mental status etc. Yes, we were keeping them alive, but most of them had very little quality of life. Many of them were demented. I was convinced that most of them would have been better off in hospice. I certainly don't want to end MY life that way.
Posted by: Rebecca Allen, PhD, ARNP | Jan 4, 2007 1:54:25 PM
I have seen ten major medicines inexplicably interact in such a way as to eliminate diabetes.
End-of-life, trauma, multiple syndrome situations often go chaotic and I don't expect perfection from doctors. Like many sciences, much is learned from the failures and extreme situations that becomes applicable to those seeking equilibriums.
The economics term was used delberately.
Posted by: bob mcmanus | Jan 4, 2007 2:03:42 PM
There is the bias in medicine to reduce everything to statistical analysis, and thereby, deny that medicine is an inexact science.
On the contrary, the whole point of statistics is to deal with uncertain knowledge. The issue is not whether we are certain that a given procedure will fail, the issue is whether a certain procedure's chance of success merits either the resulting suffering the patient endures or the cost of the procedure--the opportunity cost of the procedure being procedures we could have applied to other people with a greater chance of success.
We can't know for certain that the the old man's care is wasteful compared to greater care for the uninsured, but you don't know for certain that the reverse is true. The lack of certainty isn't an argument for anything--the best we can do in an uncertain world is weigh one uncertainty against another.
Posted by: Consumatopia | Jan 4, 2007 2:05:07 PM
Weighing is fine. If there is a 1 in 10 shot of survival, then the question is should one have the right to take that 1 in 10 shot, or can a doctor decide that the 9 in 10 is enough to cut off care. Acting as if the 9 in 10 is a certainty. Or in my case, 2 in 98. Dpes that mean they get to ignore that 2? Where the problem lies, as this diarist points out, is where probable is treated as certain. So yes, stats is the problem when it is treated as 100 in 100 or 10 in 10 rather than weighing. This things also come up in other areas. This comes down to subjective nature of medicine.
As a result of my experience, those with my mother, and after having counseled a few others on these sorts of issues, I did some research. For example, women of color when it comes to pain are under medicated (believe this was from Harvard Medical or New England Medical Journal- can't remember which one, and it maybe neither). They are treated differently even where economic levels are the same as their white male counter part. My point of bringing up this is not really about race or gender. It's to point to how stats can be subjective when these numbers are weighed. What constitutes herculean efforts here? What does not? Who gets to decide?
The nurse above would say no. What would the person next to her decide? How did her patience see the issue?
Posted by: akaison | Jan 4, 2007 2:16:32 PM
It is silly to think "heroic end-of-life measures" naturally form a strict dichotomy with abandonment, and it is know-nothing-ism to refuse to acknowledge that dying, is often a recognizable process in old age.
I cared for each of my parents as they approached the end of life, with help from hospice care providers, who visited my parent's home.
In another context, say in a much younger person, some of their ailments would call for much more aggressive treatment, in part because one could expect a younger, less frail person to survive the side-effects.
"heroic end-of-life measures" are, often, just a particularly unpleasant way to kill a dying patient. And, they may also be especially profitable for the hospital or doctor, and that factor should not be dismissed, either.
"heroic end-of-life measures" are not simply monetarily expensive, nor are they simple bets, with a big upside and no downside (because the patient is likely to die, if untreated). That's not the tradeoff. Every patient is, eventually, going to die anyway. The critical question should be how the patient is going to live. Care should never stop: but, it should be appropriate to context.
Posted by: Bruce Wilder | Jan 4, 2007 2:31:52 PM
The 'final six months' thing has always struck me as the equivelent of "You always find stuff in the last place you look." Well of course. Once you've found them you stop looking.
Posted by: Jacob | Jan 4, 2007 2:38:07 PM
"The critical question should be how the patient is going to live. Care should never stop: but, it should be appropriate to context."
Perfectly said, Bruce!
Posted by: CParis | Jan 4, 2007 3:05:56 PM
I still carry with me a powerful memory of a scene from the movie Soylent Green (1973) where Edward G. Robinson, and old man living in a chaotic world, decides to use the end-of-life procedure available through the state: a very pleasant facility where a movie would be shown that reflects the pleasant memories of that person, as the effects of a life-ending medicine bring themselves to a painless end. I wish that choice were available to all who wished to take this path, but it is very unlikely to happen anytime in the next decades.
Medical decision making powers of attorney, Advance Directives for Medical Care, and clear conversions within the family (with the advice of physicians and others) about end of life treatment are appropriate ways of dealing with these painful choices, but they are often not utilized. Oregon's Death with Dignity Law - now upheld by the US Supreme Court - is another alternative.
Patients and families are the appropriate places to make these decisions. There is no way that the state, medical practitioners or insurance companies can ever find a way to decrease, or withdraw medical care (perhaps saving substantial sums of money and heart-breaking pain and anguish for the patient and family) that will be acceptable to the public at large. This is a personal/family issue - purely in my view - and we shouldn't be looking to society to solve the problem of end of life care, except to the extent of providing educational materials regarding the choices and wider enactment of laws that allow the patient a full range of choices - including the choice to bring life to an end.
Posted by: JimPortlandOR | Jan 4, 2007 3:55:57 PM
And fairly decent example of this is Art Buchwald
The very example that came to my mind in another thread recently where the topic of end-of-life care came up. Interestingly, Buchwald seems to think Diane Rehm saved his life by going to the hospice to interview him and stirring him up to return to useful activity. (She's NPR's Oprah.) This illustrates another problem common to end-of-life decisions: the old and sick are often depressed, which can interfere with their competence in making life-and-death decisions.
I certainly don't want to end MY life that way.
A common and justifiable feeling, but one that makes some disabled people whose entire lives are that way very nervous, and sometimes very upset. It would appear that views about what constitutes a life worth living are rather subjective, and often relative to expectations and experiences from earlier in life. Some severely disabled people are worried that these subjective standards will be normalized or objectified or institutionalized in a way that will threaten them, that there will be pressure on them or others to just die already, since their lives are so awful anyway.
You do have to watch health care workers in this connection. Most are probably not this way, but there are many who have strong ideas about end-of-life care that they are happy to impose on patients and their families.
Posted by: Sanpete | Jan 4, 2007 4:56:44 PM
These concerns are powerful and you state them eloquently. But ultimately, no matter how efficient the health care system, there will be care we can't pay for. There is no easy way to identify it, but we have to try. The alternative is either national bankruptcy or implicitly denying care elsewhere with a greater chance of success.
This is, I think, a powerful argument for tolerating less waste -- we cant pay for all the care that actually might do some good. We certainly cant afford to throw money away on structural inefficiencies (cough ***insurance companies*** cough).
Posted by: RW | Jan 4, 2007 6:33:55 PM
thats the point isn't it? before you decide who will die, shouldn't you deny whether it was necessary first by doing everything to fix the system before hand? can anyone seriously argue that we are at that point of saying the system has max'ed efficiency in other ways sot hat the only thing left is rationing?
Posted by: akaison | Jan 4, 2007 6:36:52 PM
"can anyone seriously argue that we are at that point of saying the system has max'ed efficiency in other ways so that the only thing left is rationing?"
Posted by: RW | Jan 4, 2007 6:41:31 PM
I'm reminded of a recent New Yorker cartoon -- a couple is attending a funeral, and the husband is whispering, "well, that get well card turned out to be a waste of money, didn't it?"
Posted by: David | Jan 5, 2007 12:46:33 AM
In other words, they don't know everything about the human body, but they want to proceed like they do.
More than that, they want the patient to feel confident that they do, because that in itself can be helpful. I do think that at its most cultish (and it can get that way) evidence-based medicine is problematic, because in many ways, medicine isn't a science at all.
the old and sick are often depressed, which can interfere with their competence in making life-and-death decisions.
And that can be accentuated by the fear that once the savings are gone, and the money from the house is gone, then they're bleeding away their children's future. (Tangentially, my wife's grandmother's 'Alzheimers' went away with anti-depressants and a change of nursing home.)
Posted by: pseudonymous in nc | Jan 5, 2007 12:50:22 AM
My father died. He had advanced Parkinson's and had almost completely withdrawn from society. Strange to see in a blustery, hail-fellow-well-met man.
While I was still in college, he had successful open heart surgery, promptly changed all of his bad health habits and inside of two years had the heart of a twenty-five year old, said his cardiologist. But the Parkinson's symptoms began less than ten years later and progressed extraordinarily quickly. He could no longer walk, so he had a stationary bike. He could no longer bike, so he sat. Soon, the cardiologist said that he could have heart surgery again, or die inside of two weeks. My father chose surgery. He had very good insurance. It cost $200,000. And he died two weeks sooner.
We weren't angry or bitter, although I would have liked to see him again alive. (I was out of town for the emergency.) But I do often think, $200,000 for someone who was in almost catatonic Parkinson's withdrawal, might have been better spent on some young mother's prenatal care. Or more likely twenty or thirty young mothers' prenatal care. On the other hand, I would have cut off my arm to have him live.
But when you are talking about health care, you are talking about a system. How to make rules to share resources in a way that makes the most difference. We are all a big family on this earth, and we have to care for each other that way.
Posted by: Paula | Jan 5, 2007 6:35:56 AM
I feel like I got the opposite message to ezra on this one. Heroic end-of-life measures was what Art Buchwald refused, remember? He has made his peace and decided that the pain of dialysis is not worth the additional life it would bring. I see no reason to doubt that choice just because he is lucky enough to see his kidneys come back online. This extra time is a blessing.
Posted by: battlepanda | Jan 5, 2007 7:07:46 AM
You illustrate the dilemma and the mixed feelings very well, Paula.
RW, I'm sure we'll have to do something about rationing, but I agree with you, akaison and BC that there are other things to deal with first.
Posted by: Sanpete | Jan 5, 2007 1:56:49 PM
I guess it depends on what you mean by first. We are rationing now. Its likely that by changing the way we ration we will strip some people of access to care that they have.
Suppose we go from the current system to managed competition -- individual or employer mandate, large purchasing cooperatives buying portable, private, community rated insurance, universal coverage and subsidies for people with low incomes. I dont think thats the most efficient way to pay for health care, and hope it would be just a step along the way to single payer, which I think is the most efficient system. Bracket that dispute for a moment and assume that I am right about that (or say I'm not and imagine that we implement a more efficient payer system that is less than optimal). Can we say that we will pay for everything under the managed competition system -- compel provate coverage of any number of bypasses, any amount of apparently late end care because we haven't maxed out our efficiency?
Yes, we have an obligation to reduce rationing as much as possible by being as efficient as possible, but every system rations.
Posted by: RW | Jan 5, 2007 3:20:48 PM
True, RW, though what I had in mind depends more on what is meant by "rationing" than by what is meant by "first." What you point out (and others have also mentioned) is that there is already an implicit form of rationing. True, but it doesn't include consciously denying coverage for especially expensive types of life-saving care, for example, which is the kind of rationing I don't want to go to except as a "last resort," as BC put it in another thread, or until something clearly better is made apparent. More specfically, as I understand it, there's currently no limit on what Medicare will pay for as long as it's medically appropriate, regardless of the economics. I like that approach and hope we can keep it, but I know it might not be the wisest course. I just don't want to change it until I see clearly that the alternative will be better. That may not get at your concern, though. If not, say so and I'll take another shot at it.
Posted by: Sanpete | Jan 5, 2007 3:47:30 PM
I think we're on the same page, but maybe not in complete agreement. I agree that there should not be any limit to the amount spent on treating any one person. It also seems likely that potentially powerful interventions are being lumped together with "end of life care" that is not especially likely to help, and that people who seem close to the end of the life are being underserved in some circumstances. I think I agree that the rationing mechanism should be as sensitive as possible to the individual case.
I'm only saying that the line between what we can and can't afford is not the same as the line between what procedure is and is not likely to produce some benefit. Some procedures with a benefit are going to be excluded under any system that doesn't bankrupt the country, including systems that are not optimally efficient. Some, perhaps even much, of this excludable care is likely going to be care that will result in death if it is not given.
By rationing, I do mean a system of consciously witholding care -- I hope for a system of explicit rationing that will make this decision on the basis of cost/medical benefit, and that it will not provide anyone a profit motive to err on the side of excluding care.
Posted by: RW | Jan 5, 2007 5:02:16 PM
RW, what you say about cost exceeding means seems right in some way, but it makes me wonder why Medicare Part A isn't bankrupting us already.
Posted by: Sanpete | Jan 5, 2007 5:33:21 PM
Right -- I'm just not in a position to know the relative costs of different aspects of care. Late end care may be overstated in cost. See http://www.cbo.gov/showdoc.cfm?index=3521&sequence=0(Medicare now 2.7% of GDP, likely to grow to 6% by 2040)
But even if the amount spent on actual services aren't unsustainable as percent of current economy, several things will worsen the financial problem: aging of baby boomers, rise of medical technology (there will just be more that we can do thats beneficial), and, hopefully in the very long run, longer life-spans with improved access to front end care.
I dont know what percent of the GDP is sustainable. I am also skeptical that economic growth is sustainable at current levels for ecological reasons, which, I suspect, will mean that health spending is going to be a greater portion of the GDP than we expect.
But I admit I dont know.
Posted by: RW | Jan 5, 2007 5:58:36 PM
Posted by: judy | Sep 26, 2007 8:12:06 AM
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