End of Days: A Guest Post

We recently featured a Q&A with Julie Salamon, author of Hospital, and last week Julie wrote her first guest post for us. Here is her second. It touches on a subject of great interest to me, something we hope to address empirically in future writing: the cost/benefit dilemma of end-of-life medical care.

End of Days
A Guest Post
by Julie Salamon

The law of diminishing returns is hard to accept when confronted with our own mortality.

When Teddy Kennedy was diagnosed with malignant brain cancer a few weeks ago, the senator who championed universal health care opted for the rarest and most expensive treatment — surgery followed by radiation and chemotherapy. But with or without surgery, the prognosis for patients with glioblastoma like Kennedy’s is poor, with an 18-month survival rate for those over 60 less than 10 percent.

Kennedy’s decision reminded me of Susan Sontag‘s terrible last days. Her son David Rieff recalled the moment when physicians told Sontag, then 71, that a bone-marrow transplant had failed and her virulent leukemia had returned. In the New York Times Magazine article that became a book, Rieff described his mother’s reaction. “She screamed out, ‘But this means I’m going to die!”

Sontag was shocked even though she had been told survival rates for myelodysplastic syndrome, or M.D.S., were slim — 20 percent across generations and much worse for someone of Sontag’s age, who had already survived two previous cancers.

Yet she chose to endure gruesome treatment (which her insurance didn’t cover) at her own expense — at least $300,000.

Robert Cohen, a New York City internist involved in public health issues, told me he wished Teddy Kennedy had issued this statement instead of opting for surgery:

“Because I am not a young man, the cancer in my brain will progress rapidly and is likely to incapacitate me in the near future. I trust that my doctors will do everything they can to prevent further seizures and to keep me in comfort. I will not endure extraordinary excess pain and suffering, while hundreds of thousand of dollars will not be spent on surgical debulking, radiation, and chemotherapeutic regimens which do not work.

Modern medicine cannot cure my cancer, but it can keep me comfortable and free of pain. I have already contacted the Massachusetts General Hospital Hospice program.”

Dr. Cohen added, “I’m not suggesting that Kennedy has an obligation to choose hospice rather than therapy, but I do think it would be very reasonable for him not to adopt the false ‘struggle against cancer’ model.”

Dr. Michael Salcman, former chairman of neurosurgery at the University of Maryland School of Medicine (and for full disclosure, my step-brother), had a different view:

“It is true that we spend most of our health care dollars in the last 6 months of life, but who or what is to tell a relatively intact, feisty, willing-to-fight, rich person that he is supposed to simply go into hospice in a free capitalist country like ours.”

The choice, he argues, is a philosophic debate between two competing visions.

“… an individual’s right to his personal freedom of choice and life (in the logical extreme, the freedom of the American frontier) vs. society’s right to limit the economic damage from such choices and life-styles (in the logical extreme, socialism). As usual, Aristotle is correct when he says that the true answer to most problems is somewhere near the mean.”

What is the appropriate cost/benefit analysis — financial, medical, and emotional — to apply to the ebb tide of life?


tb

HTB in #107 - single payer systems in other countries may choose not to spend $35M to keep one person alive, but we might have no choice if we adopt such a system in the US. When a German is told "sorry, we don't cover that", he goes home and waits to die. The American who hears that calls a lawyer. One of those cases will make its way to the supreme court, which, upon observing that we have adopted a single payer system, will decide that it is the "consensus of the nation" that health care is a legal right. Legal rights cannot be denied due to age, prognosis, citizenship, or cost.
There will be no rationing.
An approach which cuts costs in other countries may very well bankrupt ours.

Elizabeth R

While I agree with "M.D." (post #119) that no one should take away a patient's hope, I'd guess that his wife was not 76 years old at the time of her diagnosis. It's much less likely that her wonderful recovery and productive life would have been the case if she were. A more likely scenario would have been continuing decline and death. I support Senator Kennedy in whatever choices he makes. In my view he has contributed far more to the country than his care will cost (that is, if he is not paying privately). However, as I stated in my earlier post (#109), I hope that I would have the courage to choose "slow" or no medicine--other than palliative care--if I find myself in a similar situation.

jb

No one complains when someone buys a 2 million dollar house, Kennedy spent money on the most important thing in his life, we should not fault him for that. Even if this procedure reduced the chances of death in the near future for him by 1 percent, when his risk is so great to begin with and given the amount of money he has, the money was well-spent.

M.D.

I think that Dr. Cohen needs to pursue some Continuing Medical Education....the sooner the better.

Six years ago my wife, who is also a practicing physician, was diagnosed with a glioblastoma multiforme of the frontal lobe. At that time she had a 50% chance of surviving a year. She chose surgery, radiation, and chemotherapy (temozolomide). Today she is practicing medicine, finishing up a 25-year quilting project, actively publishing academic papers, serving in our church...I could go on and on.

I know a number of other long-term survivors with glioblastoma. Three have survived at least ten years apiece. One survivor, David M. Bailey, has produced 17 folk CD's and keeps a punishing concert schedule that would waste rockers half his age.

So, Dr. Cohen, how dare you take away another person's hope? Brain tumors are not death sentences. With the right care individuals with brain tumors can continue to lead productive lives.

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Miller

This is more of a question than a statement.

Who believe's that a Universal Health Care System would allow Mr. Kennedy to proceed with his elected treatments. Assuming that he was a regular Joe and not a State Senator?

I am of the opinion, and am likely wrong since I am not an expert in this field, that either the UHC would (1) deem the proceedures too expenise and not authorize them or (2) that the wait time to have this proceedure done would be so long that he would not likely survive long enough to have the treatment.

So is this a good or a bad thing??

If the cost is high and the benefit low do the bean counters in the government get in the way of treatment?

OR

Does this promote reasonable health care coverage where common and inexpensive proceedures that have a high benefit get moved to the front.

I think that there are enough examples in history. The Soviet Union had UHC. What was the Net Result Historically speaking?? I can't imagine that this has not been thoroughly studied and published. If it has than let's stop debating politics and look at what the research really had to say.

Can our esteemed economists on this blog tackle the numbers and deliver a politics neutral summary of what happens when health care is free to the masses?

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M Todd

We have two health care systems, the one for the wealthy and the one for the rest of us. I feel for Kennedy and his family, everyone wants to live, but fact is if Kennedy was your average person with or without health care insurance he would have limited options.

Tax payers pour billions into the health care industry, billions more from charities and community grants and yet cost continue to spiral out of control.

I think of the VA hospital system for those who are generals, senators, and presidents there is Bethesda, for the rest of the fighting men and women there is Walter Reed. I have no problem with the rich paying for the best medical care they can afford, but when it comes out of taxpayers then let our leaders have the same care the followers get, then you will see reform.

cs

I agree with Dr Kathy most probably because I have 34 years of experiance in nursing. I have worked in many different healthcare settings and levels of care. While I think most health care workers are well meaning and act in the best interst of the patient, there are too many instances where alternatives to "heroic" measures are not offered as a reasonable and humane alternative. I have never forgotten a converstion I had in the hospital with a elderly patient who said" all my friends and family are gone - why am I still here -it's time for me to go - I can't take care of myself anymore - I'm not afraid to die - let the younger people have their time -I've had mine." At the end the body fails us-that should not be a green light to foist all the medical technology possible on someone who is dying.Hospice when done in a timely manner is a reasonable and humane alternative. CS

JKN

To Dan #55; I see that you have something valuable and worthwhile to say -- in your second and third paragraphs. I'd be MUCH more willing to engage in thoughtful discussion with you about end-of-life issues that we are, in fact, now discussing if you and all the other yous would/could consider refraining from bashing any generation. It's just not helpful.

To Kevin #21, I agree with your second point; Kennedy HAS taken enough hits, you'd think we'd all give him a pass!

Finally, it IS the consumer who must step up to the plate now, sleeves rolled up, prepared to "get into the fray" and help solve the health-care issues we face, including it's expense and end-of-life care choices.
Sincerely, J

janpiero

Can we really apply cost-benefit analysis to someone's life?

www.theitalianbanker.blogspot.com

David Rosner

Cohen is really on to something here. He's touched a very powerful nerve. This discussion is both an economic as well as a cultural arguemnt about the ways our culture imposes a "triumph" narrative on us when we get sick. We "fight" against cancer; those of us who live, "won the battle" against the disease, etc. Sontag addressed this issue but two important but little noticed books that address the implications of "the triumph narrative" are by Kathlyn Conway: "Ordinary Life" speaks to the terrible weight of the triumph narrative on her own life while the second, "Illness and the Limits of Expression" looks at the literature of illness and how "triumph" has infected every aspect of our popular and professional ideas. They both should be a part of this discussion.

Thanatos Savehn

As long as utopians are allowed to vote and politicians are allowed to pander we'll have this problem.

Capitalism will deliver a solution but not for years; maybe decades - "thanks for your money; die happy in the knowledge that some day it will let someone else survive what's going to kill you". Socialism can deliver a solution today - "here Mr. Kennedy, here are some painkillers; be careful not to take too many when the pain gets really bad or you won't wake up *wink* *wink* - die happy knowing that somewhere your money is helping someone you don't know."

Barry Beckman

American consumers will have much more power and influence for change when they vote more vehemently with their dollars. A person's decision to pay $300,000, for example, toward any kind of health services procedure is a "yes" vote for continual financial gouging of patients' pocketbooks. It's the same with housing, gas, and other products and services. When you say "yes" to a certain price, you are saying "yes, fleece us please."

The same goes with the offer you take with a prospective employer. When you say "yes," you are agreeing to stagnant wages as well. When we as a collective society decide that we are willing to "live in a van down by the river" for the sake of change then you will see a new beginning and our vote will be cast, but we no longer have the spirit of our founding fathers whom, many, lost their entire estates at the hands of the British for the sake of a new beginning. We are too soft now. And "they" know it.

Of course, naturally, we will take the given wage because we have our babies to support. And "they" know that too.

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ElizabethR

I agree with posts #55, and #60 and to some extent with #62. My mother died of metastatic breast cancer in the mid '70s age 69 after surviving a radical mastectomy and two utterly miserable years of chemotherapy. Truly, the "cure" was worse than the disease. I decided back then that, if I contracted cancer or a similar gravely debilitating condition in my older years with no reasonable hope of recovery, I would refuse toxic "therapies" and high-tech medical interventions. I support "death with dignity" legislation, which will be on the ballot in the State of Washington this November (I-1000).

I strongly believe that how one exits this life needs to be the individual's decision, along with her family and doctors. I also recognize that we cannot provide everyone with the gold standard of medical care without bankrupting the nation. I have no magic answer to the healthcare crisis, but I favor a single-payer system because it minimizes the profit motive. We're all paying for the billions of dollars spent by Big Pharma on TV ads for Viagra, overpriced heartburn pills and a multitude of new drugs, some of which have been rushed to market without being sufficiently tested for safety.

I'm 71 now, and my views haven't changed. Like most older people, I hope that when my time comes, I die quietly in my sleep. However, if I'm not that fortunate, I hope I have the courage to "walk the walk" and live out my beliefs to the end. I also hope that I-1000 passes!!

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f roberts

Pete (#69) nailed this so perfectly that I'm surprised no one else made the same point. If Kennedy's treatment made it possible for him to return to the Senate for that one visit, which may have saved millions of elderly Americans from effectively losing access to medical care, then that alone has justified the expense many times over.

The problem is that the author of this post chose the worst possible example to make her point. (Perhaps she was simply unaware of the issues at stake in this particular case.) For myself, Cohen's advice would be fine. I have already made that choice with regard to my own prostate cancer.

Diana Lynn

A Harvard Public Health Study conducted in conjunction with the Canadian Institute for Health Administration looked at the cost of healthcare as it relates to increasing administrative overhead (paperwork).* At one time, the US had lower administrative costs for healthcare than Canada, whose system is socialized. Now the tables have turned. The outcome of the study -- which if I recall correctly came out in 2003 -- was that administrative reform alone would save enough money to provide all the seniors and uninsured within the US prescription drug benefits, among other things. The study found that in the Seattle area alone, there were nearly 800 private billing companies servicing the overlapping needs of healthcare providers and the reams of paperwork each claim requires. When you look across the nation, it means that other than government, healthcare administration is one of the largest growth sectors. Yet the popular fallacy is that malpractice claims and the over-use of treatments and prescription drugs among Americans is the underlying reason why healthcare costs continue to skyrocket. While everyone was debating the merits of Universal Healthcare, here we have a study that sidesteps the whole controversy by suggesting that if we streamline the paperwork we can reign in costs. Simple solutions like this get no press, while media pundits and politicians focus on the least agreed upon aspects of reform. Rather than ask whether an aging senator should choose such costly care, why don't we focus on the problems we can and should be fixing -- solutions that will benefit everyone young and old alike?

* Source: http://content.nejm.org/cgi/content/full/349/8/768?ijkey=59cf8a008adb45117e5a299b15ac14ae5bace766

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htb

DN in #84: Universal health care systems most certainly DO deny treatment coverage on the basis of cost. Look at the woman in the UK who had to fight to get the very expensive (and somewhat useful for selected patients) drug Herceptin approved. People with primary immune disorders find their treatments denied all the time. Most systems do actually have a mechanism for saying: "Sorry, but we're not willing to shell out half a million dollars every single year for seventy years to keep your kid alive" -- and, yes, there are life-saving drugs that cost that much. Genzyme's drug for Gaucher's disease, Cerezyme, is one of them. You get it, or you die -- and why should your fellow taxpayers be expected to cough up $35M (current dollars) to keep ONE person alive?

Robin Hanson

Does anyone doubt that under a universal health care system Senator Kennedy would have pulled strings to get just as extreme a treatment, except that the rest of us would have paid for it?

Nels

I'm probably going in a totally different direction than many persons in this post. I feel sorry for Sen Kennedy's medical condition, and I'm hopeful his surgery will inspire him to realize that less government intrusion into the american medical system is a better path. I am an optimist. I am also a cancer survivor-(thank you very much U of Mich Med Cancer Center), who works for a European company in the USA- with an american medical insurance plan. 2 years ago in the USA my cancer choice was easy: surgery or die. I went with the odds, unlike Kennedy's, mine were very favorable for a surgical solution to my cancer. Would I make the same decision in 30 years when I'm 78? Maybe-I sure hope the USA keeps policies in place that allow me these medical freedoms of choice. Unlike some in this post I don't expect anyone to absorb my medical costs except me. For me, my medical insurance costs are private and directly linked to the amount of risk I'm willing to absorb. I also know because of my personnel experiences that the slow death of cancer prolonged by extreme expensive medical measures is not the way I will die. (probably another minority position for this post)
I fully understand and happily accept that the "rich"(BTW can anyone quantify "rich"?) will have the ability to access more and higher quality cutting edge medical services than me. That's OK, in fact I like it that there is a market in the USA for high end cutting edge medical services as it drives excellence and pushes the boundaries of new discovery.
Sorry folks, I maybe in the minority here, but I've seen the medical systems in Europe, work with Europeans and when you're sick-like I was and you need options-like I did, in my opinion there's no better place to be sick than the USA. Consider me a satisfied american healthcare consumer, Please don't screw it up. thanks, Livestrong

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Jonathan

Ted Kennedy has fought bravely against the odds and on behalf of the greater good for his entire adult life. It is outrageous and selfish for us to suggest that he should adopt a strategy of pandering to statistical probability when confronted with this mortal challenge.

The will to live is as fundamental to human nature as breathing. The suggestion that Mr. Kennedy should simply lie down and die because the odds are against his survival flies in the face of values and instincts that we as humans, and as a nation, hold high. We are a nation of rugged individualists. We are a nation of fighters. We are human. We do just not lie down and die.

-Jonathan H

Lucky Guy

Re the assertion by #11 that "Money is a measure of how much one contributes to one's society", it's extremely naive to state that the amount of money one has is equal or even proportionate to the amount they've contributed to society. I'd be interested to know, #11, how you came to this conclusion; you didn't even modify this statement with "generally" or "usually". It seems to me that this is either wishful thinking or a lame justification of the class system that grants life and health to some and denies it to others equally as deserving. Of course, it's SOMETIMES the case that one's contributions are rewarded monetarily, but it's often obviously the case that the acquisition of wealth is achieved by unethical and self-serving means. Perhaps you should acquaint yourself with some of the homeless who served this country admirably, and whose faculties were left less than intact by traumas they endured in the process.

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