Perhaps you saw the headlines over the holidays:
- “CIGNA Defends Decision To Let Teen Die—On Christmas Eve”
- “As CIGNA Insurance Waffles on Liver Transplant, Girl Dies”
- “Lawyer: CIGNA’s refusal to pay for liver transplant ‘killed’ teen”
- “Teenage Girl Dies So CIGNA Execs Can Get Richer”
- Metroblog: "Merry ******* Christmas, From CIGNA Healthcare "
Without question, this is a tragic story. Here are the bald facts: Nataline Sarkisyan, a 17-year-old who had been battling leukemia for three years, received a bone marrow transplant from her brother the day before Thanksgiving. She then suffered complications; her liver failed, and she went into a coma. At that point her doctors at the UCLA Medical Center recommended a liver transplant, saying that the transplant would give her a 65 percent chance of living another six months. Within four days, a matching donor was found.
But on December 11th her insurer, CIGNA, refused to cover the transplant on the grounds that for a patient this sick, the transplant would be an “experimental procedure.” And her insurance policy "does not cover experimental, investigational and unproven services.”
The doctors told the family that their only alternative would be to make a $75,000 down payment on the operation. Unfortunately, the family didn’t have $75,000.
Observers both in the mainstream media and in the blogosphere were outraged when they heard that CIGNA had denied coverage. Daily Kos led the protest with “Murder By Spreadsheet: CIGNA Denies Claim and 17-Year-Old Will Die.” Responding to the firestorm, on December 20 CIGNA relented, saying that "despite a lack of medical evidence regarding the effectiveness of such treatment,” it would cover the transplant.
The letter from CIGNA came too late. That same day, the hospital called to say that Nataline’s condition was deteriorating and her family was forced to make the decision to take her off life support. She died within the hour. The next day the Sarkisyan’s lawyer announced that the family planned to sue CIGNA for “malicious” murder.
This is both a tragic tale and a complicated story—far more complicated than the headlines suggest. As Dr. John Ford, an assistant professor at UCLA’s medical school observed on his blog, California Medicine Man, “While I’m not surprised at the intensity of emotion that has arisen from this case, the utterly inflammatory and often mindless rhetoric being propagated is sobering. It seems that nuance has taken a hike, never to reveal itself.”
Here are just a few of the questions that this vexed and vexing case raises:
- Set aside CIGNA’s concerns about the cost of the operation, and
consider the risks and benefits for the patient. Does it make sense to
put a 17-year-old through the trauma of an organ transplant if her best
hope would be another six months of pain while she struggled to recover
from the operation? - Did her parents have an opportunity to share in the decision
about the transplant or did they simply consent? In other word, were
they given a choice: did they share in the process of making the
decision while weighing the risks, the possible benefits, and the
likely side effects? (See my post on shared decision-making here and a longer article on the same topic here). One would like to know what Nataline herself wanted, but she was not in a position to express her wishes. Her mother told reporters that she had been in a vegetative state for weeks. - What does one make of the research here, which suggests that the UCLA Medical Center consistently provides much
more aggressive treatment than many other hospitals–while achieving no
better outcomes than medical centers that practice more conservative
medicine? - Finally, if Nataline had lived in a country with a single-payer
health care system—a country where the payer was not concerned about
profits, would she have received a transplant?
Begin with the most important question: when Nataline’s UCLA doctors
recommended a liver transplant, were they suggesting futile,
end-of-life treatment? On his blog, “California Medicine Man," UCLA’s
Dr. John Ford does not pretend to have a final answer, but he does
raise some pertinent issues.
Let me stress, first, that Ford, who is a full-time assistant professor
at the UCLA School of Medicine, was not involved in Nataline’s case.
Nevertheless, he notes “I was very surprised that the family’s
physicians claimed a 65% six month survival with the transplant. It
seems highly unlikely that such data, if it exists at all, has any
degree of reliability. These are rare cases. I think it’s interesting
that these doctors are now refusing to speak to the press and I wonder
how excited they’d be at having to defend those numbers publicly.”
To be fair, in the face of impending litigation, it is not surprising
that Nataline’s doctors are not talking– but it does make it very
difficult to get information on the medical evidence behind their recommendation.
Here it should be noted that Ford’s blog stipulates that his views are
his own and do not represent those of UCLA, Harbor-UCLA Medical Center
or the Los Angeles County Department of Health Services. And he is not
a transplant specialist; he works in the General Internal Medicine
Division where he teaches medical students, interns and residents.
But when the L.A. Times and the Associated Press asked physicians who
are transplant specialists about Nataline’s case, their answers were
equivocal–at best:
Dr. John Roberts, chief of the transplant service at UC San Francisco told the L.A. Times
that his center “generally will not accept a patient without a 50%
chance of living five years…” But, according to the letter UCLA’s
doctors wrote to Cigna, a patient like Nataline might, at best, live
six months.
It might seem cruel to say that it’s only worth doing the operation if
the patient has a chance of living at least five years. But it is also
cruel to put a patient through the pain and extraordinary trauma of an
organ transplant if the best outcome the doctors promise is another six
months of poor quality life.
"The problem that they got into is, here’s a situation where she didn’t
have very long to live," Dr. Roberts observed. "Probably in this
situation, they’re probably better off to say, ‘The transplant center
really feels like this is the right thing to do, let them go ahead.’ "
In other words, his center would not accept Nataline as a transplant
patient because, from a medical point of view, the possible benefits
just aren’t enough to justify the risks to the patient. But Roberts
also seems to be saying that, given the fact that she was going to die
anyway, CIGNA probably should just have said “go ahead.”
The standard of care for this particular situation is "going to be
pretty hard to know," Roberts added. "I think it’s a very difficult
decision for both the transplant center and the insurance company."
Another transplant expert, Dr. Goran Klintmalm, chief of the Baylor
Regional Transplant Institute in Dallas, called the operation that UCLA
wanted to perform “a very high-risk transplant and generally speaking,
it is on the margins.” But Klintmalm also told the L.A. Times
that he would consider performing the same operation on a 17-year-old
and believes the UCLA doctors are among the best in the world."The UCLA
team is not a cowboy team," he said. "It’s a team where they have some
of the soundest minds in the industry who deliver judgment on
appropriateness virtually every day."
Translation: in Dr. Klintmalm’s professional opinion this operation is
“on the margins”—but he wouldn’t want to criticize his medical brethren
at UCLA.
Talking to the Associated Press, Dr. Stuart Knechtle, who heads the
liver transplant program at the University of Wisconsin at Madison, was
more definite: “Transplantation is not an option for leukemia patients
because the immunosuppressant drugs [that the patient needs to take so
that he or she does not reject the organ] tend to increase the risk
and growth of any tumors," Knechtle declared.
“The procedure would be futile," he added, although the Associated Press notes
that he was not commenting specifically on Nataline’s case.
I wonder if
Nataline’s parents had an opportunity to solicit second opinions from
doctors at other hospitals—and whether Nataline’s doctors were clear in
spelling out why some transplant physicians might disagree with their
recommendation.
Too often, physicians “seek informed consent simply by presenting a
scenario along the lines of ‘here’s what we have to do, and why,’”
observes UCLA’s Dr. Jerome R. Hoffman, lead author of an article on
informed decision making published in PloS Medicine last year.
“This may or may not be accompanied by a brief mention of the possible
risks of the proposed strategy, and in rare cases, even by a very brief
mention of potential alternatives—although this last element would
typically be followed by a description of why such alternatives are not
really reasonable.”
I also wonder if the hospital made a palliative care specialist
available to talk to the parents, or if they relied solely on the
advice of the surgeon and other doctors who had been treating her when
she developed complications?
The fact that Nataline’s case had gone sour on her doctors’ watch might
have made them less than objective. I’m not suggesting that the doctors
were worried about a malpractice suit: following bone marrow
transplants, patients are very susceptible to complications. There is
no indication that the physicians caring for her did anything wrong.
Nevertheless, at least one prominent palliative care specialist has
told me that sometimes she has to protect patients from surgeons who
want to try to repair a failed procedure —with yet another surgery.
“They can’t bear the failure—they want to make it right. This is what
they have been trained to do.” But they are not necessarily thinking
about what is best for the patient.
And, according to research done by investigators at Dartmouth
University, UCLA has a record of over-treating some of its sickest
patients. In a study of how patients suffering from twelve chronic
illnesses (including cancer) fared during the final two years of life ,
the research compared UCLA to eleven other academic medical centers and
found that,
in most cases, UCLA provided far more intensive, aggressive care.
For example, “Compared to [patients] treated at UC San Francisco
[a sister hospital], UCLA patients spent 45 percent more days in acute
care hospitals, used 3.5 times more days in intensive care and were 1.5
times more likely to have been admitted to an ICU during the
hospitalization in which they died. They experienced 71 percent more
physician visits and 37 percent more frequent referrals to ten or more
different physicians. Yet, despite more aggressive care at UCLA,
“objective quality measures showed that the quality of care was as
good–and by some measures better—at UCSF.” The article, which was
published in Health Affairs, cited another major study showing that
patient satisfaction was higher at UCSF.
Why do patients receive more intensive, expensive treatment at UCLA?
The answer confirms what three decades of Dartmouth research has
shown: UCLA medical center boasts an abundance of hospital beds and
specialists. As Dartmouth’s researchers have found, time and again,
where there are more specialists and more beds, patients receive more
aggressive care. This is not intentional, it is simply a fact: if the
beds are available, they will be filled. If the specialists are
available, they will be called in to consult on the case. And each
specialist will recommend yet another procedure. This is why it costs
Medicare twice as much when a patient is treated at UCLA as when a very
similar patient is cared for at the Mayo Clinic. Meanwhile, outcomes,
patient satisfaction and doctor satisfaction are all higher at Mayo.
“UCLA knows that it has a problem,” Dr. Jack Wennberg, the father of
Dartmouth’s research told me after this report on California hospitals
came out.
“What do they plan to do about it?” I asked.
“What can they do?” Wennberg replied. “They can’t fire the specialists
and close down the beds. They need those specialists and those beds to
generate the revenue stream they must have to service their debt.” So,
for the time being at least, supply will continue to drive demand.
The case becomes even more ambiguous if you look at CIGNA’s record on
transplants. Since CIGNA is a for-profit insurer, most of its critics
assumed that the company refused coverage simply because the operation
was expensive. But the L.A. Times reports
that CIGNA has a record of approving coverage for more than 90
percent of all transplants requested by its members, as well as more
than 90 percent of the liver transplants.
Some of CIGNA’s critics also assume that, “if only we had single-payer
system in the U.S., these things wouldn’t happen. But the truth is
that had Nataline lived in the U.K., the chances that the
government-sponsored healthcare system would have approved her
transplant are slim. And, as Ford (a.k.a. California Medicine Man)
points out, it’s not likely that she would have received the transplant
in Canada either. “I’ve looked at some data and did some rudimentary
(though not robust enough for publication) calculations that suggest
that Canada does 32% fewer liver transplants than the U.S. on a per
capita basis and the U.K. does 42% fewer.”
In these countries, the government considers the cost-effectiveness of
treatments, and no one, not even Nataline’s doctors, has suggested that
the transplant might have given her even one or two extra years of
healthy life. As Ford observes, the governments in single-payer
countries must face the fact that when they spend money (and a liver)
on one patient, they won’t have that money (or liver) to spend on
someone else: “Every dollar spent represents a dollar that could have
been spent elsewhere.
Everything in medicine and economics is a trade-off…The facts of
this case are unquestionably grim but can those advocating the public
hangings at least imagine the possibility that some technologies may in
fact be futile or at best experimental?” asks Ford. “And if such is the
case, can these individuals not recognize the grotesque opportunity
costs such expenses represent?”
Finally Ford raises a troubling question: “Why didn’t UCLA, the
patient’s hospital, simply perform the surgery and defer payment from
the family or CIGNA until later? If it was such a great idea, why
didn’t they exhibit the outrage and strength of conviction to go ahead
regardless of CIGNA’s assessment?
“Surely an institution of this size could have absorbed these costs at
least until the finances could later be sorted out,” Ford continues.
“This is all the more true given that most such costs are fixed costs
that the hospital would incur regardless of whether this particular
operation was performed or not.
“How is it that the hospital and the doctors’ moral standing in this
disaster has escaped media attention? My prediction is that eventually,
it won’t.”
“Ultimately, CIGNA made a mistake in relenting,” Ford concludes.”One of
the biggest mistakes CIGNA may have made was giving in to the public
relations consequences and actually approving the procedure
(belatedly).” He notes that CIGNA reversed itself “despite the lack
of medical evidence regarding the effectiveness of such treatment.”
“To me, this is very telling,” Ford writes. They’ve all but admitted
that the decision to capitulate was based not on science but on
emotion.”
Ultimately, no doubt, CIGNA will agree to an large out-of-court
settlement . The case has been tried in the press—by people who know
little or nothing about Nataline’s condition, her chance of surviving
the surgery, and what suffering she would have faced if she had
survived the surgery.
Yet I hope that CIGNA settles out of court. I would hate to see this
case come to trial, because, in such an emotional case, the jury almost
certainly would rule in the family’s favor—setting a bad precedent. In
the future, physicians would be even more likely to feel obliged to
recommend “marginal” end-of-life treatment, and insurers would be more
likely to cover it. Bad cases make bad law. And this is a bad case
because it is so ambiguous and so fraught with emotion.
Meanwhile there are so many clear-cut problems in our for-profit
private insurance industry that should be investigated in a court of
law. I would like to see states take insurers to court for the way they
“cherry-pick” their customers, shunning the sick, and raising premiums
on customers who become seriously ill. Often, insurers scour their
records looking for some scrap of evidence that the patients’ illness
may have been caused by a pre-existing condition. Insurers also write
policies in such a way that it is very difficult to know, for certain,
what will be covered—and they advertise “super-saver” policies that
contain so many holes that they don’t even deserve to called
“insurance.”
These are good cases that could lead to good laws.
By contrast, questions about end-of-life care should not be decided by
lawyers and juries. Nor should they be decided by insurers. They should
be left to physicians, palliative care specialists and medical
ethicists, keeping in mind that the physicians treating a dying patient
may not be in the best position to decide when it’s time to stop. In
other developed countries, national guidelines help steer these
decisions, with an eye to what is cost-effective—and what is humane.
I don’t think CIGNA is going to settle. Geragos, the family’s lawyer, is an a** who talks though his. One more interesting thing about this case is that despite the cries of profit-maximizing corporate criminals (they may be), CIGNA was only the administrator of a self-insured plan. In other words, they had NO direct financial stake either way in the treatment decision.
I don’t think CIGNA is going to settle. Geragos, the family’s lawyer, is an a** who talks though his. One more interesting thing about this case is that despite the cries of profit-maximizing corporate criminals (they may be), CIGNA was only the administrator of a self-insured plan. In other words, they had NO direct financial stake either way in the treatment decision.
Well done, Maggie.
Another way of looking at these events is the Kubler-Ross stages of death that both the famiy and doctors go through:
Denial: unwillingness to believe that Nataline’s condition had reached the point where she was beyond medical help.
Bargaining: The “65% chance of 6 months” contains a hope that if she does survive that long the cancer may also be cured but it also asks for a stay of execution, a little more time to postpone the inevitable
Anger: Blame CIGNA!!!
Acceptance: Not there yet?
The bottom line is that the family and physicians were not psychologically ready to accept failure. Better advice at the time the transplant was necessary would likely help; it was much too late. What was needed was a realistic understanding of the patients chances, positives and negatives, thoroughout the course of the entire illness.
Great post Maggie. With all the horrible things insurers have done in the past couple of years, it’s sad that an insurance company trying to do the right thing is the one getting the worst press. Single-payor advocates citing this particular case really don’t get it.
Outstandingly well written post. I love the way you lead us through the morass to the real problems, tangetly related to the tragic headline.
I agree that futile treatment by physicians and “cherry picking” by insurance companies are the more egregious, albiet not as poignant, stories.
>>>> ” Does it make sense to put a 17-year-old through the trauma of an organ transplant if her best hope would be another six months of pain while she struggled to recover from the operation?”
Maggie, it depends on whether it is my 17-year-old or your 17-year-old. But by and large the decision should have been made by the Docs and not Cigna.
I’d recommend reading “The End of Health Care, Who Plays God in a System Bent on Profit?” at http://www.makingakilling.org/chapter1.html
Bad Cases Make Bad Law
Bookmarked your post over at Blog Bookmarker.com!
Based on what I’ve read her and elsewhere, I would opine that Cigna shouldn’t settle. One possibility hinted at above is that the patient’s essentially near-terminal status was not handled forthrightly enough by the doctors. Sometimes there really isn’t anything more to be done, but this is very difficult to tell families and patients. Over the years I’ve felt that, the younger the patient is, the harder this is. Why was liver transplant even brought up??
Very interesting case. Though let’s all remember we have no idea “exactly” what went on, what conversations took place with family, other specialists etc. we are pontificating on supposition. That being said, I find the day to day denial of treatment by insurance companies far more morally reprehensible and damaging, and if the emotion of a 17 y/o with a questionable chance of survival being denied is what brings the true faults of a for profit system to life, so be it.
Mike C. single payer advocates citing this case do get it, it takes human emotion to get attention to a matter, we are not stupid, we know this would have not been covered in single payor (assuming all above are facts). Of course in single payor nobody would have ignited false hopes in the family in the name of profit either.
I would gladly burn CIGNA at the stake in the name of health care for all. However, thier mistake was recanting thier initial decision, makes it look like they think she would have benefited from the transplant and the reason she dies was that they dragged thier feet, when we know that is not the case, but public opinion matters in a time when health care reform is a big topic.
“Ultimately, no doubt, CIGNA will agree to an large out-of-court settlement . The case has been tried in the press—by peple who know little or nothing about Nataline’s condition, her chance of surviving the surgery, and what suffering she would have faced if she had survived the surgery.
Yet I hope that CIGNA settles out of court. I would hate to see this case come to trial, because, in such an emotional case, the jury almost certainly would rule in the family’s favor—setting a bad precedent.”
Actually, it’s not the jury’s verdict that sets precedent, it’s the appellate court decisions. Given the rather narrow facts of this case, it’s unlikely that the precedent will extend far. Laypeople often think jury verdicts constitute legal precedent. They do not.
Also, trying the case in the press means nothing to Cigna in terms of trying the case in court. If anything, CIGNA now has less incentive to settle, since they’ve already been vilified. It’s not going to get any worse for them publicity wise.
This is a contracts case, and the law books are full of cases on interpreting insurance clauses. The sex appeal will be drained out of this case on appeal, because it is essentially a question of whether the language of the policy dictated they pay.
“By contrast, questions about end-of-life care should not be decided by lawyers and juries. Nor should they be decided by insurers. They should be left to physicians, palliative care specialists and medical ethicists, keeping in mind that the physicians treating a dying patient may not be in the best position to decide when it’s time to stop.”
Wrong. They should be decided by patients.
If anyone should be called to account in this case, I think it should be UCLA, not just for this case specifically but for their hugely expensive, cost-ineffective, overly agressive practice pattern across the board.
As for CIGNA, I too hope they fight the case in court and through the appeals process if necessary.
drmatt, if you read the blog posts Maggie linked to and the comments on those blogs, I think most single-payer advocates who are jumping on this story do think this would have been covered. The only reason this story stands out for single-payer advocates is because it helps them paint an untrue story that changes the mind of or inflames the ignorant.
See op-ed in LA Times. Different take, obviously.
Brad
Mike C
Didnt read anywhere that a single payor advocate wrote that this would be paid for? Two Major Differences here.
1. Morally speaking, with holding treatment with the intention of preserving resources is a very different pill than doing it to maximize profits. Quetionably, if the hospital wasn’t “for Profit” they likely would never have suggested it and this young lady would have slipped quietly into her good night.
2. No matter how you paint it, this is the product of a for profit system, single payor would not of even considered the use of valuable resources in a futile case, family and friends would have been appropriately prepared and it would not have made the papers.
So, actually there are many reasons this stands out for single payor,none of which includ “inflame the ignorant”. As a single payor advocate, not only have I written a book, but I spend a great deal of time educating on how the system works, after it is understood, most people are pretty clear (on thier own) what should be done, it is called informed decision making. The ignorant are no help in our fight.
Most people who know, and those who are open to learning, will favor single-payer. The problem is that they are not funding the political campaigns.
The insurance and healthcare industry wants exactly the opposite of public good. They want profits, and they give $100-200 million per year to the political campaigns to ensure them.
However, even Medicare would not break the bank with futile attempts, but getting the profit motive out of the system would better protect the public.
Jack Lohman
http://MoneyedPoliticians.net
jlohman@execpc.com
Thank you all for your comments.
elliotg–
You make a very important point. If the mother’s company is self-insured, and CIGNA is just the administrator, they had no direct financial stake whether or not she had the transplant.
Why hasn’t any journalist mentioned this?
Can you elaborate? Who is the mother’s employer? How do they bear the financial risk?
I agree with you about the family lawyer. He sounds like an ambulance-chaser. I like many people in the plaintiff’s bar, but unfortunately he sounds like the type who gives plaintiffs’ lawyers a bad name.
Marc– I agree neither the parents nor the doctors were ready to accept failure. That’s why I was wondering how much palliative care UCLA has. A good palliative care specailist would have counseled both the parents and the doctors . . .
Mike C– you’re right this case is not a good case to use to argue for single payor
Dermdoc–Yes, the media ran with this story because it is “poignant”–and seemed black and white.
Jack– I don’t think it depends on whether it is my 17-year-old or your 17-year-old. I hope I wouldn’t put my child through additional pain for the chance of having her for another 6 months. It is a horribly hard decision for a parent to make, but it can be crueler to try to hang onto the child.
I have to go to a meeting. Will be back to respond to more comments later.
Maggie, you can’t know if it is going to be another 6 months or six years. And we don’t know how horrible the pain is. I would want to hang on as long as the child wants to hang on in the hope that new discoveries would come along. But then, I’m not a Cigna shareholder (and I know you aren’t either).
Jack Lohman
http://MoneyedPoliticians.net
jlohman@execpc.com
Geragos isn’t so much a plaintiff’s lawyer as he is a celebrity criminal lawyer. Winona Ryder, Michael Jackson, Scott Peterson, etc.
CIGNA may be reimbursed as administrator based on expenses, who knows? It’s too early to absolve them of ANY profit motive.
My source for the self-insurance is this article:
http://www.signonsandiego.com/news/state/20071228-1535-ca-teen-livertransplant.html
It’s AP so I probably read it somewhere else.
I believe CIGNA when they said that they would have taken the financial hit for the reversal that came too late. I think this almost guarantees that CIGNA will not settle and provides legal protection to them. In other words, the reversal was not a change in their medical decision, but an exception made specifically for PR purposes. Had they gone through an official appeal process and had some kind of documentation that showed they thought there was a medical reason to reverse then they could have been in trouble. In fact, my wild guess (take with a grain of salt) is that most of the memos Geragos will get in discovery will be CIGNA people bemoaning how unfairly they were treated for not approving a futile transplant. There may be evan a rant or two from someone that they were going to “cave-in” when it makes no sense.
Finally, understand that this denial got so much play because it happened to coincide with the debate in the CA legislature on healthcare reform. CNA’s position was that the current bill is untenable and “a gift to the insurance companies”. This only got such wide notice because of CNA’s publicity machine and they only cranked it up because they had a separate agenda. So maybe the headline of your post is that Hidden Agendas Makes Bad Cases
“America will always do the right thing, but only after everything else fails.” Winston Churchill
“elliotg–
You make a very important point. If the mother’s company is self-insured, and CIGNA is just the administrator, they had no direct financial stake whether or not she had the transplant.
Why hasn’t any journalist mentioned this? “
If the plan is self funded then it is the employer / employees that are the “payers”. Further, it is ultimately the employer’s decision to either approve or deny benefits. That’s not to say that CIGNA makes recommendations; as that’s why you hire a TPA (third party administrator). And I think we know that self funded plans are governed by ERISA. CIGNA will no doubt claim no fiduciary responsibility in this case. However, Tenth Circuit Court of Appeals, Employee Profit Sharing Plan and Trust v. Estate of Simper, 407 F.3d 1126 ; has held that TPA’s can be liable as a fiduciary. This is important, because as a fiduciary they are accountable under the ERISA law(s).
Scott– Your knowledge of case law on this point exceeds mine–but I believe you.
CIGNA could be liable as a fiduciary . . . As to whether CIGNA goes to court, or settles, I think this will be a business/financial decision.
CIGNA will settle if it is concerned that uncertainty about the case will hurt its standing on Wall Street. (And WAll Street hates uncertainty.)
The decision won’t be based on whether the company’s lawyers think the company was right, or even on whether they think they have a strong legal case. It’s a matter of cutting their losses if they think that if the case drags on, it will hurt them financially.
Jack–
When doctors tell a cancer patient that there is a 65 percent chance of living six months, they are not saying–oh and by the way–there might be a chance of living five years.
They are giving you the best case scenario. During that extra six months, no one is going to discover a cure for your cancer.
There are no “cures” for most late-stage cancers. There are, of course, mysterious remissions that no one can explain. The doctors said the patient had 3 months and he lived 4 years. But the odds that will happen are — 1 in 100 on TV, one in 5000, or 10,000 in real life.
The fact is that many, many children suffering from cancer agree to treatment after treatment in order to please their parents and their doctors. The parents can’t bear to let go.
I recently talked ot a doctor whose daughter was diagnosed with lukemia at 3. She died at 11. “We went from treatment to treatment to treatment,” he said. “The doctors would say: this is the protocol. This is what we do next. And she suffered so much.”
At this point, his eyes filled with tears. “It’s not that I would have wanted to have her with us one day less, but . . .”
He regretted what she had gone through. He wished he had had better support in helping him make the decisions about when to say “enough is enough.”
He is now a major advocate of shared decision-making,which means that the patient and family are given a choice as to whether they want to go ahead with the “protocol”–and are made fully aware of the risks, side effects and suffering that lie ahead.
When “shared decision-making” is available, 20-40 percent of patients decide not to go ahead with the third round of chemo, etc.
elliotg wrote: “In other words, the reversal was not a change in their medical decision, but an exception made specifically for PR purposes.”–
This is true. And the lack of medical evidence behind the transplant recommendation bothers me.
janemarie m.d. wrote “Sometimes there really isn’t anything more to be done, but this is very difficult to tell families and patients. Over the years I’ve felt that, the younger the patient is, the harder this is. Why was liver transplant even brought up??”
I agree. From what I have read about her case, the bone marrow transplant was probably a good last-ditch effort–the organ transplant was just gong too far.
This is why we need palliative care specialists in hospitals. They (both doctors and nurses trained in this very difficult specialty) know how to let patients and famlies begin talking about the unspeakable–dying.
Unlike hospice, palliative care doesn’t mean giving up on continuing to treat the disease. But it does mean letting the patient realize that he/she has choices while also making sure that the patient is physically comfortable (not in too much pain.)
Most doctors have been trained to view death as the enemy; if your patient dies, you failed. Or the patient failed (gave up.)
Palliative care specialists understand that, at some point, we all die. This does not represent human failure (on the part of doctor or patient.) It’s just part of nature’s cycle.
Dr. Matt–
I know that you understand that single-payor is not about wasting resources–it’s about using resources in a way that is best for us collectively, as a society(rather than thinking about health care in terms of me and my family)
But Mike C. I agree that not all single-payor advocates recognize this. They truly believe that if we moved to single payor, health care would automatically become much cheaper, and we could afford anything that anyone might possible want.
These are not the professional single-payor advocates (i.e. Physicians for National Health Reform, or Dennis K.,) but this is something that some people who haven’t thought long or hard about the issues believe.
Barry C.– Yes, I too am concerned about what was going on at UCLA. Becuase of the lawsuit, the hospital and doctors can’t speak up–and I definitely don’t want to try them on this blog. We just don’t know enough.
But if they do go to court, I hope we find out more about what the parents were told about risks and benefits. Was it a 20 minute conversation? Did they have a chance to take in why a transplant might not be good for their daughter?
Their daughter was close to death. They needed grief counseling –to help them face the possibility that she might die . . .
Matt-
YOu are right, the legal prcedent will be set by an appeals court. By the “precedent” for insurers and doctors has, in a sense, already been set in the media.
They will be that much more concerned about being sued if they don’t do everything possible–and then some. Even if CIGNA ultimately wins in an appeals court the cost of litigation (not just financially, but in term of reputation) is enormous. As Justice Brandeis once said: “There are two things to fear in life: death and litigation.”
As for who should make the decisons about end-of-life care– We all pay for everyone else’s end-of-life care, in the form of higher insurance premiums, higher Medicare co-pays, higher Medicare premiums, and higher Medicare taxes.
This is why we can’t just say that patients (or a patient and his doctor) should make the decision.
Many of us are very afraid of dying. We would ask for every possible treatment–no matter how futile. Yet, as a society, we cannot afford to pay for the $100,000 cancer drug that may give an extra 10 days of life. (The FDA has actually approved such a drug.)
We need that money to provide preventive care for 5,000 10-year olds with astham so that they learn how to use their inhalers . . .
I think the decisions about what to cover should be made by physicians and medical ethicists who are not personally involved with that patient–and have no financial stake in his or her care. They should be specialists in the particular area involved, and they should draw up national guidelines (not rules, just guidelines) for how to care for very sick patients.
Doctors and hospitals should be free to deviate from those guidelines in individual cases. (Every body is unique; every case is unique). But if certain doctors and hospitals are deviating from the guidelines far more often than other doctors and hospitals that have as good–or better–outcomes, then someone should look into what they are doing.
“They will be that much more concerned about being sued if they don’t do everything possible–and then some. Even if CIGNA ultimately wins in an appeals court the cost of litigation (not just financially, but in term of reputation) is enormous. As Justice Brandeis once said: “There are two things to fear in life: death and litigation.””
This is an insurance company, not an individual. Litigation does not intimidate it in the least. They are not going to be frightened into settling. By Wall Street or anyone.
“They will be that much more concerned about being sued if they don’t do everything possible–and then some. Even if CIGNA ultimately wins in an appeals court the cost of litigation (not just financially, but in term of reputation) is enormous. As Justice Brandeis once said: “There are two things to fear in life: death and litigation.””
This is an insurance company, not an individual. Litigation does not intimidate it in the least. They are not going to be frightened into settling. By Wall Street or anyone.
Matt:
Why don’t you ask Merck’s view on “fear of litigation” given their recent about face.
As far as your views about decisions about who should make end of life decisions (ie the patient only) it is rather pollyanna and shows a complete lack of understanding of the need of a doctor(s) in helping to make this decision and also at the societal level a complete lack of understanding as to the expense of very aggressive treatments in essentially futile situations. At the societal level this view held by you (and most americans) will be a severe hindrance to ever instituting a single payer system. Very simply stated for a single payer system to work in this country americans will have to accept healthcare rationing and IMO (as a doc) americans are not yet ready to accept a european-model rationed single payer system.
PS: I am not against a single payer system but I don’t see any evidence that americans are ready to accept healthcare rationing in the pattern of the european system. I understand there is a “type” of rationing in this country based on payment, but by and large it does not effect the majority of americans as in this case.
“Why don’t you ask Merck’s view on “fear of litigation” given their recent about face.”
Merck’s “about face” was because they’d won enough to reach settlements on acceptable terms. They knew they had a problem with some of the recipients of their product. But financially, they were never in any danger as a company. Look at their balance sheet – they are in very good shape.
“As far as your views about decisions about who should make end of life decisions (ie the patient only) it is rather pollyanna and shows a complete lack of understanding of the need of a doctor(s) in helping to make this decision and also at the societal level a complete lack of understanding as to the expense of very aggressive treatments in essentially futile situations.”
It’s not Pollyannaish at all. You, as a physician, should not have the right to tell me when I have to quit seeking treatment. I think perhaps where we’re crossing paths is that I am assuming that I can pay for it. If I can, then it’s not your business. If I can’t, then you are perfectly within your rights to refuse me experimental, aggressive care.
In this case, the only question is “was she covered under her plan?”. If she wasn’t, and couldn’t afford it otherwise, then she should not have received the care.
We dont need a single-payer system, but I think that’s where we’ll end up because Americans increasingly see healthcare as a right. And as the biggest and wealthiest voting bloc in history controls politics for the next 20 years, they are not going to be supporting reductions in healthcare.
“When doctors tell a cancer patient that there is a 65 percent chance of living six months, they are not saying–oh and by the way–there might be a chance of living five years.
They are giving you the best case scenario. During that extra six months, no one is going to discover a cure for your cancer.”
Thats not true. Doctors give statistics based on AVERAGES, not absolutes.
anyways, I think doctors pulled the 65% number out of their ass, because I highly doubt there are any long term survival studies on liver transplants for leukemia patients. Even if there were, it probably wouldnt apply to this patient because she had a lot of features that probably would have been excluded in the study population.
The bottom line is that most of these kinds of therapies have almost no data to back them up, and should not be offered until we have long term data to prove their efficacy.
Doctors need to do a better job of saying to patients, “you are dying. there are lots of UNPROVEN experimental therapies that we dont recommend because they are likely to be fruitless. I recommend you consult palliative care and go to a hospice”
Matt, Elmo and Joe Blow-
Thanks for your comments.
Matt– corporations do, in fact, worry about litigation both because investors don’t like it and because it is bad for public relations. And they do care about their public image– this is why they spend hundreds of millions of dollars on PR.
Re: how Wall Street feels about litigation. When I was at Barron’s I wrote a story about Pfizer. It was making a device that implanted in the heart–and sometimes broke. Pfizer knew this, but kept on manufacturing it, without warning doctors about the risks.
The story came out in N.Y. on Saturday, the stock opened in London on Sunday (Monday, London Time) and stopped trading (not enough buyers). Monday, it never opened in N.Y.
Eventually Pfizer settled the case out of court.
Of course the potential for losses in litigation was much larger than in this transplant case, because Pfizer was facing a class action suit, and CIGNA is being sued by just one family.
On the other hand, Pfizer was a wildly popular stock at the time; the fact that the market reacted in such an extraorindaily negative fashion illustrates how much Wall Street hates litigation.
Elmo and Matt: First, Matt is right: insofar as the patient can afford to pay for the entire procedure himself, he has a right to do so if he chooses it. (And even if the odds of success are slim, he will no doubt find a doctor and hospital willing to do it.)
But since relatively few people can afford to pay the total cost of an end-of-life procedure, this is, from a practical point of view, a nearly moot point.
We have to think of health care expenses collectively, not individually, becuase that is how we pay for health care–collectively.
When I and 1000 other people undergo futile procedures, everyone pays for them in the form of higher insurance premiums, higher Medicare deductibles and co-pays, and ultimatley higher Medicare taxes.
The Medicare trust fund is running out of money.Medicare’s hospital trust fund is already paying out more each year than it takes in (in taxes).
So we don’t have an option –we have to start “rationing” care in that Medicare cannot continue to pay for unproved procedures, unneeded and futile care.
We won’t be asked to vote on this–anymore than we were asked to vote on raising Medicare co-pays or reducing the fees Medicare pays to doctors.
And this doesn’t have anything to do with whether or not we have a single payor system. (Most European countries not have single-payer–they have a combination of public-sector and private-sector insurance.) But all other developed countries “ration” care by asking: How effective is it? Is it cost-effective?
In the U.S. the cost of care now has risen to such a point that neither Medicare nor employers can afford to pay for it. Resources are finite and healthcare costs continue to rise 2 to 3 times as fast as either wages or economic growth, year and year. We’ve reached a limit.
MedPac (the independent Medicare Payment Advisory Commission that advises Congress on medicare spending) knows that Medicare is running out of money. It also knows that if it slashes the fees it pays doctors by 25% –across the board–over the next three years (as the law now says it must), a great many doctors will simply stop taking Medicare patients.
Medicare would collapse.
Politically this is a non-starter. So Congress will have to authorize Medicare to start taking a closer look at what it covers.
When Medicare decides not to cover something, private insurers almost always follow suit.
Of course there will always be extremely wealthy individuals who can afford to pay for any procedure out of pocket. But they represent, at most, 5 percent of the population. And as Medicare and private insurers back away form paying for the most expensive, unproven cutting-edge procedures, the price of these procedures and drugs will sky-rocket (because the market will be so much smaller, the price per service or good will be higher.)
Re: Edwards and Organ Transplants
Moves from the Cigna playbook
http://www.latimes.com/news/opinion/web/la-oew…
Edwards Needs A Little More Than One Data Point
John Edwards has used the story of Nataline Sarkisyan on the campaign trail to underscore the heartlessness of the American health-care industry, and specifically its insurers. The teenager died from complications of liver failure and cancer, after app…
Excellent post and discussion. i think, though, that you buried the lede in your very last paragraph:
“By contrast, questions about end-of-life care should not be decided by lawyers and juries. Nor should they be decided by insurers. They should be left to physicians, palliative care specialists and medical ethicists, keeping in mind that the physicians treating a dying patient may not be in the best position to decide when it’s time to stop. In other developed countries, national guidelines help steer these decisions, with an eye to what is cost-effective—and what is humane.”
If we had a sytem whereby decisions like these were based on national guidelines, even knowing that the guidelines were based on the fact of limited resources, the public would largely accept them. As drmatt said, there is a huge difference ethically, morally between decisions made by the profit motive or by a societal agreement.
I have a small post on my blog about this:
http://cmhmd.blogspot.com/2008/01/wsjcom-commentary-edwards-and-organ.html
Cheers,
I AM LOOKING FOR SOME ONE TO WRITE A STORY ON A TRUE AND TRADGIC THING THAT HAPPENED IN OUR SASKATCHEWAN HEALTH CARE SYSTEM. THIS STORY WILL LEAVE YOU IN TEARS AND VERY ANGERED. THE STORY IS OF A WOMEN IN HER LATE 20’S STUGGLING WITH THE WORST FORM OF LUPUS AND HAD A MASSIVE HEART ATTACK..GIVING HER NO CHANCE TO LIVE…AND DEFIYING ALL ODDS!!! IF YOU YOU KNOW OF ANYONE THAT WOULD TAKE THE TIME TO LOOK INTO THIS AND PUT IT IN THE PAPERS OR ON T.V. NEWS. WE DESPREATELY NEED HELP. THIS IS MY BROTHER’S WIFE AND ASWELL THEY HAVE 2 CHILDREN 4 AND 7…..I PROMISE THIS STORY IS VERY TOUCHING AND PEOPLE NEED TO KNOW WHAT LUPUS CAN DO IF UNDETECTED AND NOT CONTROLLED. PLEASE CONTACT ME AT MY EMAIL ADRESS. THANK-YOU
Why has no thinking person questioned the price that the hospital and doctors put on this procedure? Talk about a classic DUH!