This post is about health care costs — but let me digress into how end-of-life decision- making came onto my radar. A few years ago, as the Terri (Schindler) Schiavo tragedy played out during prime time, I went to see Bodyworlds, at a museum near the medical school downtown. While leaning over the light table, studying illuminated brains sliced in cross section, I wondered out loud, “What does Terri Schiavo’s brain tissue look like?”
Mrs. Teresa “Terri” Schindler Schiavo, CT scan
Left: CT scan of normal brain; Right: Schiavo’s 2002 CT scan provided by Ronald Cranford, showing loss of brain tissue. The black area is liquid, indicating hydrocephalus. (Via Wikipedia)
Somewhat unbelievably, there was a brain surgeon and neurology researcher right there, in the crowd looking at the brain cross sections.
(We were next to a world class neurology teaching hospital, so that probably explains it). The doctor explained basically what parts of the brain had atrophied, and why it was unlikely that Terri would ever have any cognition again. He seemed very sure that she should no longer be on life support.
I thought Mr. Schiavo – Terri’s estranged husband — was a little too eager to stop the life support, so I wasn’t so sure about stopping life support. I don’t remember if he stood to profit, but I recall that he had specifically withheld treatment — treatment which was to be paid for from a personal injury settlement fund (which had resulted in Terri’s injuries to begin with).
There was a mismatch: the court awarded a certain amount as compensation for medical treatment, but the husband decided to keep it instead of providing the medical treatment. Was that unethical? How could someone who stood to benefit financially also be the one making the decision?
I also teach a post-grad class which involves medical ethics and health economics, so a few times a year, I try to catch the updates in the research. One statistic that hasn’t changed in a long time is that about 30% of all Medicare dollars is spent in the last year of life (detailed here, for example). That’s a lot of money. By and large, the health care provider default position, in the absence of any wishes expressed otherwise, includes hospital end of life technology, at least to some extent. Is it necessary? Are we making ethical decisions as to who gets treated and who doesn’t where that kind of money is spent on end of life?
In a recent report, ethicists say you have to consider the money in deciding whether to use costly ICU resources — at least for keeping the brain dead patient physiologically alive. Appelbaum et al., in an upcoming JAMA paper (cite below) discuss the reality of ICU costs (this, in the context, of the ethics of continuing ICU care after brain-death for a few days so that a traditional/complementary medicinal practice can be followed):
Up to this point [in the article] the hypothetical variations have assumed that treatment is not costly. But care in the ICU is quite costly in two ways. First, a three-day stay in the ICU is very expensive in dollars—according to internal hospital estimates, on the order of $9,000 to $18,000 in direct marginal costs before considering the cost of infrastructure and overhead. Second, an ICU patient requires around-the-clock devotion of time, energy, and concern from nurses and physicians. Even if the family reimburses the federal government for the entire monetary cost of care, the medical staff may still have a complaint: they are being asked to devote themselves to a purpose that falls outside of their professional commitments and that, in part, undermines those commitments. They signed up for the care of patients, and they are being tasked with the care of corpses. So a complete assessment of this case [keeping a brain-dead individual alive in order to perform culturally customary rituals] must include the burdens that the continued treatment of a dead body puts on both the public’s resources and the medical staff.
So what about the 30% of Medicare spending? Isn’t there an ethical duty to think about others who could benefit from Medicare funds, such as those with kidney dialysis or those Alzheimer’s? Should everyone who wants it get the ICU resources? Who decides? The hospital front office? The doctors? The family? The patient – who maybe doesn’t have end of life instructions on file?
First things first: lower the costs. Health economists are looking into comparative medicine. For instance, not all regions have the same costs. Barnato et al. report that some regions spend double what other regions spend — and that these differences are not explained by patient preference. Pretty much most patients want to die at home, and not in a hospital, as noted before (see the comments).
There are some interesting suggestions on a new blog,”
In his post, End of Life and Futile Care he goes through the struggles with what we are all struggling with: end of life care shouldn’t be what it currently is, but we don’t know what it should be. The whole post is very interesting, and Graham has a new idea that I’m agree with in principle :
. . .Experiment: we offer people, say, 90 and above $30,000 and 100% free hospice care. In exchange, they agree to seek simple or comfort care only. See, those “last 6 months” costs or “last 1 year” costs are worth real, American dollars. And my guess is if you ask these people what they want with their final time, it’s not to spend it in a hospital or a doctor’s office. Maybe it’s to see Italy or France. Or to take a vacation with their great-grandchildren to Disneyworld. Or buy a fast car. Or invest it in the stock market. Who knows? I certainly don’t pretend to know what you want. . . .
I like this idea, and his idea that people should be required by law to have end of life instruction. Practically, however, I wonder if after people take the $30K they or their families might change their minds. What then? (Sort of like Harold and Maude at the end — she didn’t plan to die in the hospital, but she did anyway because of Harold’s desire to take extraordinary measures). We could change the laws, but we can’t change the basic ethical tenet that you can’t hurt people. Arguably, there may not even be informed consent as $30K may be coercive to people in their ’90′s – the money may amount to a bribe.
But more to the point, I think that there is no one-size-fits-all end of life care. Living to be 90 (as in Graham’s experiment) probably means you haven’t had large health care expenses — like heart and lung disorders or cancers in remission perhaps. A 90 year old probably is on a slow decline, and may not need the major health care spending until the last few months or weeks of life.
Rand Corp. researchers propose organizing health care on the basis of need:
Effective, Efficient End-of-Life Care Should Be Organized by Need
The existing health care system generally classifies patients by disease and setting of care, but this method is becoming less effective because it works poorly for the increasing number of elderly individuals who have multiple diseases and need care in more than one setting. Lynn provides a framework, shown in Figure 1, that groups the entire population according to their health status, which predicts the types of services they are likely to need.
• Healthy people and people with acute, time-limited conditions.
• People with stable or early chronic illness that is consistent
with their usual social role and long life.
• People with chronic, progressive, eventually fatal illness.
Here’s Figure 1 — Among those with chronic, fatal illness, with cancer, there is a steep decline, and need for serious medical care; with heart and lung problems, there is a gradual decline with intermittent episodes of serious medical need, and with frailty and dementia, there is a linear decline alone (click to enlarge):
The difference in health care is illustrated here (click to enlarge):
So we ration medical care according to how much benefit we think it will provide, and how long we think it will extend the person’s life. We sort of do that now anyway: if you are an alcoholic with chronic kidney disease, kidney dialysis and ESA treatment isn’t suggested, but will be provided if you request it. If you are otherwise not too unhealthy, kidney dialysis is suggested and information is provided to you.
At the heart of the matter is the premise that we all want to live as long as possible. I think we all need to query the premise: Do we really want to live that long? Quality of life is key. When I think of the 95-year olds I know (or knew), they lived in nursing homes, not in good health, mostly had dead friends and children, and woke up every day with the same thought: “God, take me today!”
So I go back to Graham’s original idea, the $30K and free hospice. The part I like is the part that says, “live it up a little.” Maybe that should be the law: people need to make sure they live their lives fully. I think the less we get out of life when we are alive, perhaps the more we don’t appreciate death. I sense a sort of panic — like, “I spent 40 years at a desk job so I want to do something exciting before I die!” kind of baby boomer mentality. Maybe we should all have grief counseling for ourselves starting around, say, age 30, just to understand that life is short, and we should get all we can out of it now. We would perhaps make different decisions — take a less prestigious job in favor of spending more time with our loved ones, or pursue a cause we are passionate about instead of pursuing having more money than our neighbor. Maybe the fuller our life, the less we would have any regrets in death. Then maybe we wouldn’t spend so much on last-year-of-life.
Applbaum, A.I., Tilburt, J.C., Collins, M.T., Wendler, D. (2008). Ethics Grand Rounds at the NIH Clinical Center:
A Family\’s Request for Complementary Medicine after Brain Death. Harvard Kennedy School of Government, Faculty Research Working Papers Series, February(1), 1-21. (Forthcoming in Journal of the American Medical Association)
Lynn, J., Adamson, D.M. (2006). Redefining and Reforming Health Care for the Last Years of Life. Rand Research Briefs, xx(xx), 1-5.
Barnato, A.E., Herndon, M.B., Anthony, D.L., Gallagher, P.M., Skinner, J.S., Bynum, J.P., Fisher, E.S. (2007). Are Regional Variations in End-of-Life Care Intensity Explained by Patient Preferences?. Medical Care, 45(5), 386-393. DOI: 10.1097/01.mlr.0000255248.79308.41
Great post!
[...] Great discussion-inspiring post, and summarizes a RAND post I hadn’t seen about how we might/s… [...]
Thanks Graham — the Rand report is interesting. Another Rand report from 2005 (I’ll post on it) talks about the 21st century workforce — how most people will be independent contractors and will need portable health care benefits. So our present system is becoming even more dysfunctional.
Yes excellent post SC. You bring up some great points.
I just would like to clarify that we in hospice do lie to make a living, so when you say “free”, I take it you mean an extension of the already ‘no out of pocket because the taxpayers are already funding it’ Medicare Hospice Benefit? I guess I should ask Graham that since he is the one who proposed the idea.
And thanks for the Harold and Maude reference. I had forgot about that movie, and may use it in some upcoming teaching sessions.
Thanks CS. I don’t think anyone is comfortable rationing health care, but at least we can budget based on predictive outcomes (given the three categories in the Rand report). I don’t know what Graham meant by “free” hospice, but let’s assume it’s taxpayer funded.
Harold and Maude would be a great teaching tool. Personally I’ve used the Kinks videos.
http://youtube.com/watch?v=uPMYkITzxn0
enjoy
This article is a very good example of why, while I’d like “health subsidies for people so as to achieve universal covereage”, I’m really afraid of the idea of socialized medical care.
The thing that horrifies me is how swiftly bureaucratically distributed care moves into mathematical discussions of optimization that erase the dignity of each person. It’s *ugly* to optimize over *treatment conditions* because you start comparing people’s lives… “how much value do smoker’s lungs have relative to children in need of cosmetic surgery for a cleft palate?” Those kinds of questions are part of such optimization problems.
I fear that socialized medicine (if not done in some way that gives ultimate control and decision making power to individuals) will deform the souls of those who do make the decisions… in a democracy, that means all of us.
Thank you for your comment Jennifer.
Human dignity has to be recognized, however imperfectly. If the healthcare system forgets that, then nothing else matters. Even if the system is imperfect, I think that so long as people know they are heard, and that their humanity is important, mistakes can be tolerated. Great point.
I am a grad student working on a Tax Strategy paper. During the process of arriving upon a topic for our paper, my team developed a means by which the the dying might be incentivized to hurry up and die (to be blunt) to the benefit of their heirs, as well as the government.
A major aspect of our work is to determine the break-even point for the government. If anyone has any recent, solid numbers on the month-by-month cost of care in the last year of life (for Medicare recipients) I would greatly appreciate you passing them along. Cost of care is not a central part of our project, and as such we don’t want to spend too much time on it. The numbers we have dug up are somewhat dated, and while our theories work regardless of the cost, we would like to be as accurate as possible.
Interesting Steve. Use tax law for social engineering of the last year of life medicare costs.
This paper (Gessert and Haller, below) doesn’t have costs but points to the last 90 days in the last year of life as being where the costs accrue, not surprisingly.
Lets say the proposal is this: “Grandma, if you skip extraordinary last 90 day of life measures, you get to skip the estate tax and your heirs inherit more.” Your break even is that the estate tax amounts lost are lower (say) then the amount of medicare in the last 90 days.
But, this wouldn’t give grandma incentive to avoid the last 90 days, it would, however, financially incent the (putative)heirs to declare grandma incompetent and pull the plug early.
Gessert, C.E., and I.V. Haller, ” Medicare Hospital Charges in the Last Year of Life: Distribution by Quarter for Rural and Urban Nursing Home Decedents With Cognitive Impairment,” The Journal of Rural Health 24: 154-160 (2008) DOI: 10.1111/j.1748-0361.2008.00152.x
US: http://dx.doi.org/10.1111/j.1748-0361.2008.00152.x
AB: Background:Medicare beneficiaries incur 27%-30% of lifetime charges in the last year of life; most charges occur in the last quarter. Factors associated with high end-of-life Medicare charges include less advanced age, non-white race, absence of advance directive, and urban residence. Methods: We analyzed Medicare hospital charges in the last year of life for nursing home residents with severe cognitive impairment, focusing on ruralurban differences. The study population consisted of 3,703 nursing home residents (1,882 rural, 1,821 urban) in Minnesota and Texas who died in 2000-2001. Data on Medicare hospital charges were obtained from 1998-2001 Centers for Medicare and Medicaid Services MedPAR files. Results: During the last year of life, unadjusted charges averaged $12,448 for rural subjects; $31,780 for urban. The charges were distributed across the last 4 quarters similarly for the 2 populations, with 15%-20% of charges incurred in each of the first 3 quarters, and 47% (rural) and 52% (urban) in the last quarter. At the individual level, a higher percentage of hospital charges were incurred in the last 90 days by urban than by rural residents (P < .001). A larger proportion of urban (43%) than rural (37%) residents were hospitalized in the final quarter. The charges for hospitalized residents (N = 1,994) were distributed similarly to those of the entire study population. Discussion: Medicare hospital charges during the last year of life were lower for rural nursing home residents with cognitive impairment than for their urban counterparts. Charges tend to be more concentrated in the last 90 days of life for urban residents.
Howdy
I’m an IT engineer, 33, and fan of 3d movies, nothing more to say, just thanks for this website !
@swivelchair: it does incentivize grandma, IF she places a greater value on the ability to pass along an estate tax free over living another 90 days. The idea is to create a price mechanism by which individuals can value the cost of care. In the absence of such a mechanism, people choose to receive unlimited care (a rational choice). This cost is borne by society-at-large. The purpose of this strategy is to create an opporunity cost for further care; it does not force the indigent to pay for care or die, nor does it put the decision in the hands of anyone other than the person affected. Of course the problem arises when the patient does not have the capacity, and the deicision falls to the person or people that stand to benefit. That would be another bridge to cross.
@Steve – You could also increase the co-pay with more expensive/less effective procedures. The co-pay would presumably come out of the estate. So, if an elderly person gets very expensive treatment that doesn’t do much for qol or increasing life duration, then perhaps the co-pays could be geared to this.
This would also incent medical providers to provide preventative care, such as some of the new osteoporosis drugs that can be pricey. Or, to incent helalth services providers, lower the reimbursement rates for certain procedures that are unlikely result in improved outcomes.
All of this can be gamed by upcoding or something, and there should be increased penalties on the fraud and abuse side for that.
Howdy.
The problem with our system as is, is that incentives are not properly aligned: medically or financially. Doctors tend to treat symptoms, or cure diseases; however, life is the most fatal condition of them all. Therefore, when the end of life nears, doctors are apt to unnaturally delay death. Patients, of course, have no incentive NOT to delay death: especially those for whom compensation of services provided incurs no personal liability. Government is prone to not address the issue, as the political price of movement is deemed too high. The problem, I believe, surrounds incentivizing those that – literally – have nothing to lose.
I think that creating an incentive for the dying to forego care would serve to better align the incentives of all involved in the decision center; I am not certain that there may not be unintended consequences in the care center. Might hospitals become more aggressive in treating illness earlier to capture revenues? Or shy away from providing care to those that have exceeded their actuarial lifespan?
This isn’t an easy subject, but I believe it is one that must be had.
Best last paragraph ever. Sorry for making the whole post very disconnected. I think I just spilled my whole brain out. Beware of being very confused after reading it, I know every time I listen to myself think I go insane.
I’m about to start my 3rd year in college, and I’ve been thinking for the longest time. What do I want to do. I tell my family and friends that I’m going to go for a masters or seek a job where I can get to a good position and do something in robotics. I definitely want to do that, in addition to joining the Peace Corps, and maybe trying out some acting or playing my guitar and tabla <- but I'm not very good at any of those, and so my family and friends although they will be supporting they wouldn't be most supportive of that cause. Their minds and hearts wouldn't be into it. To be honest, neither am I because I know that I will most probably not be able to make it as an actor as a musician, I'm alright but not good. So looks like I'm going to end up trying to work 80 hours a week to make a lot of money and buy lots of things, because having a future is important and I do want to be successful.
S So….with all of that, I've decided to take on a new motto of "Livin' Life". I'm just going to go after what I want to. Frankly, I do like robotics as well and am very interested in my major Computer Science, as well as a lot of other things. So I'm going to pursue it all.
Another thing that I get told a lot, is to be reasonable. I get told that dreaming is good but you have to 'grow up'. Last time I was told that, was when I was 12. I'm 7 years older and I will never stop dreaming. Dreaming is the last thing I will ever have. Sure I'm ambitious but I have no idea if I will ever have another one and life is short.
Now some might say, then why not just make life a big party. And I would say, sure. If that's what you want. But then you're wasting your own time and everyone else's. If partying is really what you want to do your whole life, then I would look down upon it, but again it's how you choose to live your life. Anyways, I don't think everyone would choose to party forever, I feel like you would die of many diseases very early.
Man, I could go on and on about living life. Not just the fact that you should take vacations and see places, but anything you pursue should be because you want to pursue it. I think there are many individuals out there who would be at the forefront of technological progress (maybe not as many but definitely several). I would definitely want to try to develop a humanoid robot and stronger artificial intelligence. I have a never-dying curiosity about space and Earth, and given the opportunity would love to jump in and do research on it.
Summing up a point (not sure if I can), but success is a word. Like many other words, it can have multiple definitions. I think society and the majority of us have it wrong. I don't think success should be defined as "The attainment of popularity or profit", it should be achievement of your goals, essentially of what makes you happy. Where one day, you can literally say, "My life was so worth it". I think that is true success. Success is a personal and mental attainment of profit, and popularity.
dam swivel….I never had the guts to say any of this because I never thought anyone would listen to a 19 year old kid and because I didn't think many others would feel this way but now you've got me pumped. I'm a little over-excited. All in all great article, I know I got super off-topic, but it was a great article.
[...] dollars are expended during the last year of life. Blogger Swivelchair has written a nice summary of the medical issues surrounding these [...]
U E-M:
Welp. You said it.
Please do me a personal favor: don’t rack up student debt.
It’s kind of sad though how a lot of my friends, essentially students in college, hear what I say and dismiss it with silence. Essentially, acknowledging that it is how it should be but still continue in majors they dislike just for a job they’ll hate.
Unfortunately, student debt is inevitable, but I’m pretty lucky. My parents are content with me getting a degree in Computer Science, and they’re putting up the majority of the money for now. I’m also applying to many scholarships and constantly keeping a check on my finances.
Living out my dream seems to be a pain so far, but I can say I have very few regrets. I do regret not going skydiving that one time though…
Unseen,
It is a little sad for your friends, but, the good news is that their undergrad degree can be a Mulligan. Education is a life long process. If your friends end up as dentists and hate it having their hands in other peoples’ mouths all day, they can go back for a Masters in Fine Arts or whatever floats their boat. (We’re optimistic that high quality education can be delivered (a) cheap or free, and (b) 24/7. ) We have 1000% confidence that you will live a long fulfilling life and make the world a better place while you are at it. Just you and your family stay away from the debt.
[...] choice but to vastly scale back coverage (perhaps starting with reducing end-of-life care, which is estimated to take roughly 30% of Medicare's budget), followed by probable rationing of key medical resources. (Read here for a hyperbolic freakout [...]
[...] 000. Give me the care!" I think this is a very important point in this discussion. This blog author writes about the fact that 30% of Medicare spending is done during the last year of life: [...]
Should assisted suicide be made legal?…
Yes. There are lots of reasons I believe this. I’ll give two of the more convincing ones: From a rights perspective, a person should be free to choose how and when he or she goes and the friends, lovers, and family that participate in that going. See …
One thing that I’d be critical of, is your posting vaguely remembered “facts” about the Schiavo case, in which you make serious accusations, which are, in fact, wrong.
The husband did not attempt to withdraw treatment until ALL of the money from the settlement had been spent on Terri’s care. This is all quite clearly documented in the attorney’s book on the case. The accusations that you cite were the accusations of the opponents of the husband, which were rejected by FIFTEEN different courts. FIFTEEN different courts.
You also seemed to miss the main issue of the case: Consent. Terri had all of the things done to her after a certain point, when her expressed wishes to her husband that no such things should be done. One can say what one wants, Terri Schiavo made the decision in the light of day who would be the person who spoke for her when she could not, when she married her husband. One side supported that decision, one side said her decision should be ignored. What it comes down to, does a person get to decided what happens to them, or will that be the State?
An interesting article on end of life, by those most expert in what happens:
http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/