Bad Meme a-Risin’: “Killing Patients to Save Money”
Among the splashback from coverage of the Schiavo case is a growing spate of stories about hospitals moving to terminate care of patients unilaterally – i.e., against the patients’ or families’ wishes – when the cases appear hopeless and the patients have “run out of money.” A series of articles in the Houston Chronicle in the past couple of days has focused on a Texas law – similar to laws in other states – allowing this practice. The articles emphasize the “out of money” angle, with headlines like “Decision hinges on patient’s ability to pay”; bloggers have picked up on that, creating a wave of indignation over greedy hospitals killing patients for profit while their families are trying to keep them alive – just like that evil Michael Schiavo . . . There are, naturally, stories about a tragic photogenic infant and a kindly old “grandfather” whose wife weeps “I’m so ashamed of my state that it executes civilians without criminal history.”
The truth is, predictably, very different and much more complicated.
What all these cases have in common is the need to make decisions over “end-of-life care” – treatments provided in the last stages of life, when recovery is known to be impossible. At one time, it was standard practice to provide aggressive care in all cases until the patient was dead. (The obvious inadvisability of this in many hopeless cases was handled informally by hospital staff who agreed among themselves, without consultation with the patients, that certain patients would be “allowed” to slip away.) The suffering this brought to many patients was addressed in the first so-called “right to die” cases, resulting in landmark Supreme Court rulings that patients could refuse “extraordinary” treatments, and finally refuse any treatments they did not personally approve of, and then further that patients could make their wishes known ahead of time in writing (leading to the use of “living wills”), and finally that any convincing evidence of patients’ desires – including oral statements to witnesses (the crux of the Schiavo case) – could be used as evidence of the patient’s wishes, and taken as guidance in determining whether to continue treatment under conditions of severe debility. (It is this principle that is under attack by Congress and the pro-lifers in the Schiavo case.) Gradually a right to refuse treatment not in accordance with one’s wishes was developed and – to some degree – promulgated through the legal system.
But not everybody wanted to limit end-of-life treatment. Some patients, or their families, wanted aggressive treatment up to the very end – which, in some cases, could be a very long time. Where the patient had at least minimal brain function, this made sense: though patients have the right to refuse treatment under those conditions, they also have the right to request it if they feel such a life would still be valuable or meaninful to them. (This raises severe problems when the patient’s ability to use up caregiving services exceeds their ability to pay for them, and the patient is receiving minimal benefit from them, but in practice most hospitals and nursing homes have tried not to refuse care in those circumstances because it leads to bad publicity. They suck up the cost and write it off.)
However, there is another conflict that sometimes arises: that in which a patient or patient’s family demands aggressive or intensive treatment that cannot benefit the patient in any significant degree. This may be a demand for an expensive treatment they’ve heard of that isn’t really appropriate for the patient, or a demand for an experimental treatment that shows no promise of working, or a demand for continued treatment for a patient who has no conscious experience at all. (In thelatter case, such a patient may not be literally “brain dead” because “death” is a legal concept; not all states accept loss of brain function as a criterion for death, and among those that do, all consider a patient “alive” who has any brain function, including merely reflex brainstem functions such as breathing and involuntary muscle movement. Thus, those patients cannot be legally declared dead even though they have no conscious awareness and possibly no upper brain functions at all. Terry Schiavo is not legally dead even though, by most reports, she now has no remaining cortical brain tissue.) In these cases, distraught or unrealistic family may demand continued treatment even when it is known that the treatment they are requesting cannot help the patient, or even, as in the case of higher-brain death, when no treatment can produce any difference in outcome. These are the kinds of cases at issue in the Chronicle reports.
Cases in which a given treatment cannot produce any benefit are known as cases of “medical futility.” In some cases, caregivers agree to provide futile treatments simply to avoid the impression of cutting the family off without hope, or to give the family time to come to terms with the reality of the case. But there are other times when that’s not a reasonable option. One is when there is excess demand for a certain resource. When a family demands scarce resources, such as access to a necessary piece of equipment that other patients also need and can benefit from, a conflict arises and caregivers try to manage that in favor of the patient who can benefit – but for the family in denial or clinging to unrealistic hope, that solution is not satisfactory. It feels like their family member has been “sacrificed” (because of course they do not agree that the treatment would be “futile”). Another conflict may arise when a patient needs very expensive ongoing treatments – such as intensive life-support – but has no hope of recovery. When a family is willing to pay for this treatment and no conflicting need on the part of other patients exists, most institutions will agree to continue providing the treatment. When the family cannot pay, and the treatment cannot benefit the patient, institutions are much less willing to continue to pay out of their own pockets for intensive care that serves no purpose other than to show the family that something is being done. This smacks uncomfortably of cutting off healthcare simply to preserve profitability, but when the patient has no consciousness or personality and no hope of regaining any, it is a lot more understandable. We ought to demand a lot from our healthcare institutions, but that they provide extremely expensive care to the physical bodies of long-gone non-persons, simply becaused the former patient’s family will not come to terms with the situation or harbors some unrealistic religious belief, is too much to ask. Aside from the question of profit, that money can be spent providing resources and services to other patients. And so, in these cases of clear futility where a family demands ongoing expensive treatment that they cannot pay for, something has to be done.
Cautiously, institutions began to craft policies and seek guidance on handling such conflicts. The best management, of course, is to help the family see reality, both for their own peace of mind and so they will be willing to end the useless charade of treatment for a non-person. When the conflict persists, however, institutions have begun to seek ways to end treatment unilaterally – seeking authority to determine that they will not provide free care forever in “futile” cases. This is the situation at issue in the articles in the Houston Chronicle – a situation that seems widely misunderstood, and on the verge of creating another uninformed pro-life blog-panic like the Schiavo case.
Two articles by Leigh Hopper in the Chronicle have painted the respective patients’ cases in emotional terms:
[T]he family of Spiro Nikolouzos fights to keep St. Luke’s from turning off the ventilator and artificial feedings keeping the 68-year-old grandfather alive. . . .
St. Luke’s notified Jannette Nikolouzos in a March 1 letter that it would withdraw life-sustaining care of her husband of 34 years . . .
* * * * * * * * * * * The baby wore a cute blue outfit with a teddy bear covering his bottom. The 17-pound, 6-month-old boy wiggled with eyes open and smacked his lips, according to his mother.
Then at 2 p.m. today, a medical staffer at Texas Children’s Hospital gently removed the breathing tube that had kept Sun Hudson alive since his Sept. 25 birth. Cradled by his mother, he took a few breaths, and died.
“I talked to him, I told him that I loved him. Inside of me, my son is still alive,” Wanda Hudson told reporters afterward. “This hospital was considered a miracle hospital. When it came to my son, they gave up in six months …. They made a terrible mistake.”
She also insists on quoting the patients’ distraught family members on the question of the patient’s medical status:
Spiro Nikolouzos, a retired electrical engineer for an oil drilling company, has been an invalid since 2001, when he experienced bleeding related to a shunt in his brain. Jannette Nikolouzos, 58, had cared for her husband at their Friendswood home, feeding him via a tube in his stomach. Her husband couldn’t speak, she said, but recognized family members and showed emotion.
On Feb. 10, the area around the tube started bleeding, and Nikolouzos rushed her husband to St. Luke’s for emergency care. Early the next morning, she said, the hospital called and said he had “coded” and stopped breathing and had to be placed on a ventilator.
A neurologist told her, she said, that he is not brain-dead and the part of the brain that controls breathing is still functioning. Although his eyes were open and fixed when he first was placed on the ventilator, he has started blinking, she said. . . .
* * * * * * * * * * * “I wanted y’all to see my [infant] son for yourself,” Hudson told reporters. “So you could see he was actually moving around. He was conscious.”
Note that in neither of the quotes above is the family member’s statement reflective of medical reality. The fact that a patient with severe neurological damage blinks or moves in no way indicates that the patient is “conscious” or has intact personality or cognitive functions. (And the fact that Nikolouzos “showed emotion” before his heart stopped beating has no bearing on his mental state afterwards.) Eye-blinking is reflexive behavior, and much muscle movement is as well (as, in fact, are swallowing, eyeball movements, non-communicative noisees, and many other “behaviors”); they do not indicate any higher-brain function. This is the – completely understandable – mistake made by Terri Schiavo’s parents, and by the wife and the mother in the Texas cases cited above. It is not surprising that family members are not familiar with the technical details of such cases – though those details will certainly have been explained to them. What is regrettable is that pro-life forces have done so much to confuse the issue in the Schiavo case, and that Hopper has done so in these Texas cases.
Aside from these comments by family members, there is little clinical detail given in the Houston Chronicle articles – but there are still some very telling quotes:
In the infant case, from the hospital ethicist:
“It’s not killing, it’s stopping pointless treatment,”
In the adult case, from a treating physician [about the possibility of transferring the patient to another hospital]:
“If there is agreement on the part of all the physicians that the patient does have an irreversible, terminal illness,” he said, “we’re not going to drag this on forever …
“When the hospital is really correct and the care is futile … you’re not going to find many hospitals or long-term acute care facilities (that) want to take that case,”
Both these people are using the explicit language of “medical futility”, indicating that the medical staff of the hospitals had determined that no possible treatments in these cases were going to produce benefits for these patients (a determination that always involves extensive, multilateral consultation). The families in both cases are upset, and who can blame them? – but there was nothing more to be done in these cases.
Money is certainly an issue. Hopper was careful to point out that the issue came to a head in these cases when the patients’ Medicare benefits ran out. But another way of putting that is that the families had been requesting futile treatments for months and the hospital humored them as long as they had a way to pay for it – the hospitals just won’t do so at their own expense. (To be fair, hospitals do give a considerable amount of unreimbursed care – they just don’t give it to brain-dead bodies. I’m no fan of medical corporations, but there does have to be a limit.)
Even more than that, though, an article by a different reporter in the same paper points out something that Hopper did not: the hospital’s actions in these cases come under a state law that was partially written by pro-life organizations and signed into law by Governor George W. Bush. The article also notes that:
Doctors apparently determined further care [for Mr. Nikilouzos] was futile. Under the law, the hospital’s ethics committee met last week to consider the case, with Mrs. Nikolouzos able to participate. The committee, over her objection, agreed with the doctors.
. . . and further that, as the law stipulates, she was given 10 days to find a facility to transfer her husband to, while the hospital also made efforts to transfer him. No other facility was willing to provide care forever, for free, to a patient who has no mental functions – so she is now suing to have his current hospital continue to treat him at their expense indefinitely.
The reason National Right to Life got involved in drafting the Texas law was simple enough: it was obvious that some solution to futile cases had to be found, so they participated in order to make the law as lenient as possible. The 10-day rule was one of the compromises they struck (though in fact facilities had routinely been caring for patients much longer than that while trying to come to arrangements with the families). This is a solution that is necessary – one that even rabid pro-lifers have agreed to, and one that is becoming common across the country. Hospitals simply must have a mechanism to cut off care for hopeless cases – not “severely ill” or “terminal”, but literally hopeless cases, patients who cannot improve – when those cases are tying up scarce resources or costing the hospital large amounts of its own money. (Arguably, you ought to cut off care in all futile cases just as a matter of principle, but there is little harm in indulging unrealistic family members as long as they are not overriding the patient’s own wishes and as long as they can pay for their indulgences themselves. When they make demands on other people’s resources or interests, a line must be drawn.) Though the concept of futility was controversial when it first arose, it has become commonplace. Yet again, however, a commonplace of medical ethics and medical decisionmaking is being inflated, by ill-informed reporters and hair-trigger, grossly ignorant bloggers, into a conflict of principle, running roughshod over practical medical necessity in the name of some pretended crisis that doesn’t exist and they don’t understand. (“Billmon” at “Whiskey Bar” has an unhinged post quoting all the most inflammatory parts of the news stories in the infant case, and finishing with the obligatory Orwell analogy – in this case between withdrawing care for a brain-dead infant and taking pigs from Animal Farm to the slaughterhouse. Thanks, Billmon, for that helpful contribution to medical ethics.)
We need to inject some reality into this discussion before it gets out of hand.
PS: Mark A.R. Kleiman has a widely-quoted post in which he discusses the hypocrisy of right-wingers who have become nearly hysterical over the – fairly straightforward – Schiavo case while paying no attention to these other, much more problematic, cases (possibly because these latter have right-wing fingerprints all over them). This is a reasonable point, but I think Kleiman misses the central problem. He claims that it is shocking that these terminations are being done solely under financial pressure, and with a “doctor knows best” attitude. In saying this, I think he plays into the right-wing tendency to simply discount facts – especially scientific knowledge – as if they were merely matters of opinion that can be discarded when inconvenient (your family member is brain dead? – or actually has no brain? – what the hell, Jesus can solve any problem . . . !) . He also misses the point high, wide, and handsome with this whopper: “In a country rich enough so that giving expensive medical care to someone doesn’t mean starving someone else, . . . the notion of letting the health-care providers decide [whether to terminate treatment], after doing a careful biopsy of the patient’s wallet, strikes me as pretty damned outrageous. ” First of all, giving expensive medical care to some people often does mean denying it to someone else, if the care in question is a scarce resource like an intensive-care bed, intensive nursing staff, an exotic device like an “extra-corporal membrane oxygen therapy” unit, or even just an “air bed” for patient comfort. There simply are not enough of these – and many other – things to go around, and providing them to all-but-dead bodies because the families are distraught is not good practice, however upsetting the alternative may be. Even more obviously, the distribution of healthcare in the only industrialized country that does not guarantee healthcare has absolutely nothing to do with whether the country is “rich enough” to pay for it all. This country is certainly rich enough to pay for all kinds of life-giving care: we just choose (or, the richest among us and their GOP bootlickers have chosen) not to provide it. If Medicare or these patients’ families will not pay for their futile and unavailing care, no matter how expensive and no matter how long it goes on, then the hospital providing it will have to pay for it – meaning that they will have to take it out of their operating budget that pays for things like intensive care beds, nursing staff, and ECMO units for patients who can benefit from them. (If they’re a non-profit hospital, then essentially all of the unreimbursed cost will come out of patient care for other patients.) Whether or not we are rich, collectively, many of us cannot afford healthcare individually, and almost none of use can afford the most expensive care out of our own pockets. We thus need resource-allocation policies that will allow us to make do with the fucked-up profit-driven healthcare system we’ve got (and even if we had a decent single-payer system we’d still have to face limitations on resources). That being the case, we absolutely must have a way to say “enough’s enough” when the point of no-benefit has been reached. Actual futility hardly seems like an unreasonable limitation to put on medical treatments.
[...] of hand regarding the Texas “medical futility” statute that I mentioned in my previous post. I was originally worried that discussion of this law – which provides f [...]
Excellent review of the issues. When I was a funeral director, I frequently witnessed post-mortem muscle spasms in patients who had no pulse or respiration or brain activity. If the case was a hospice patient and it occured in the presense of a family member while we were removing the body, the family often wanted reassurance that the patient was really dead. Hospice workers were especially careful to re-check the patient for vitals and to reassure the family that these spasms were normal occurances after death. Most people don’t understand the difference between “clinical” death — where vital signs cease to exist, and “cellular” death — where the *cells* of the body are no longer living or holding electrical impulses. Clinical death occurs much sooner than cellular death, and that is why we often see small amounts of muscle movement after death.
I think that it is horribly irresponsible for a publication such as the Chronicle and bloggers to further misconceptions about about brain function and consciousness/cognitive functions. It is equally irresponsible to paint these health care providers and guardians as financially motivated killers out of ignornace and, in cases such as Terry Shiavo, malice. But then many of these people have already rejected “science” so what should we expect from them? Science explains the Schiavo case — it doesn’t surprise me that people who are opposed to scientific inquiry and thought are the ones who are leading the case to keep her “alive.”
Twisting the facts
Scottie, and the facts.
Plus, the Texas Futile Care Law.
Wow, good job. Not to provide a kiss ofdeath at the start of what could be a beautiful friendship, but aren’t you a lefty? No one else I have found has taken the least trouble to see whether Kleiman had any factual foundation at all for his post.
Solet me ask you – is there any evidence at all that Texas Children’s Hospital gave up on Sun Hudson for financial reasons? I have seen nothing on the status of the mom’s insurance anywahere, but I have seen that Texas Children’s is one of the premier pediatric facilities in the United States. I have also seen that the decision to terminate is made under Texas law by the hospital’s board of ethics, not the CFO.
Anyway, I was much more vicious here.
Right-to-Life Hypocrisy, or Blogger Illiteracy?
Meanwhile, over in the
This is a good question. The Houston Chronicle stories (the Hopper stories, at least) all emphasized the lack of finances as a motivation for cutting off care, but in fact the actual text of the law gives the hospital authority to terminate care (with a 10-day grace period) whenever the case becomes “medically futile” – irrespective of ability to pay. Reading the articles more closely, there is in fact nothing in the story to indicate that the hospital’s motivation in either the Hudson or the Nikolouzos cases was financial, though it also does appear that Nikilouzos’s ability to pay for ongoing care is shaky. The financial angle was injected entirely by the reporter in the case, and I was not careful enough about pointing that out.
That being said, I don’t think that terminating care for financial reasons in cases of medical futility is such a bad thing. If there is truly nothing at all to be gained from continued treatment, it is unfair to the facility (and unfair to the other patients who need that facility’s limited resources) to force them to continue picking up the tab for expensive treatment that serves only to satisfy the family’s demands. I am willing to make some demands on caregivers, but giving a blank check – on someone else’s account – to families who either cannot grasp the reality of their situation or refuse for personal or religious reasons to do so, is simply not a workable policy.
I am in complete agreement with you that expecting someone to pay for futile care does not make sense. However, it seems like in the case of Sun Hudson, the Texas Childrens Hosp bent over backwards to make sure they were acting within the law (and, one hopes, within the scope of medical ethics) – per the Health Law Prof blog, they had no obligation to seek a court order, but they did that, and offered to pay the mom’s legal fees.
Well, getting back to Terri Schiavo, I am reduced to noting that bad cases make bad law, and bad blog posts. All my liberal commenters hate me even more than usual, half of my righty commenters are killing me on the faux-federalism… well, you don’t need to hear my whining.
Anyway, good job. I have linked this, but I can confidently predict that you will get few others.
THE LEFT’S BOGUS SCHIAVO MEME
Lefty blogs are making hay out of two other tragic end-of-life cases in Texas (see here and here) in order to tar conservatives as hypocrites over intervention in the Terri Schiavo matter. Tom Maguire beats me to the punch in…
Schiavo, Hudson, and Nikolouzos
Two Texans, one young and one old, are being taken off life support by their health care providers over their families’ objections. So where’s the outrage, Mr. Delay? Mr. Bush?
Hudson/Nikolouzos update and correction
Kevin Keith at Lean Left has a long and thoughtful defense of “futile care” laws, and a critique of my earlier analysis of the Hudson and Nikolouzos cases, based in part on what seems to be a more accurate account…
Thanks for the correction. I’ve updated.
once again, the jesus freaks and the republicans (i know, i know, REDUNDANT) are sticking their fucking noses where THEY DON’T FUCKING BELONG
This guy addresses Mark Kleiman’s post pretty thoroughly over on Lean Left.
Nice post. As far as I can tell, without the medical malpractice claim (and consequent judgment), Ms. Schiavo would not have the funds to pay for her current medical treatment. She certainly is receiving “medically futile” care. As far as I know (and it is a side issue), she may or may not be using medicaid dollars to continue her life. Under Texas law, this would be open and shut, regardless of the inter-family dispute, no? If not now, it certainly would be once the funds paying for her care were exhausted. That’s the part that bothers me. Keeping a loved one “alive” for your own reasons is fine if you can pay for it, but under our current system, and for the reasons you have outlined, once you run out of money, there’s not much that can/should be done. Finally, I assume you embrace the idea that people with functioning mental abilities should be kept alive for as long as possible regardless of financial considerations, regardless of their ability to interact with the outside world. I don’t believe Ms. Schiavo is in that class (nor does anyone with a medical background, so far as I can tell), but Kleiman’s post raises a scary prospect, i.e., a person with a fully functional brain could lose life support under the current law.
An interesting counterpoint on the Texas Futile Care Law
Lean Left has a very interesting post in defense of the Texas Futile Care Law, particularly in terms of accusations that hospitals will make use of the law primiarily when a patient’s family (either on it’s own or through insurance)…
Living Will: Spare the Food, Pass the Drugs
Last night I began filling out the form for my living will. I didn’t finish because I got stumped in the middle by whether what I was directing would be allowed. Jeff Jarvis had the same thought today. If I…
I think your discussion is very objective and reasoned and you provide a necessary voice in this national debacle.
I do, however, have a few questions:
What are your credentials? Are you a doctor, a lawyer, a bio-ethithist? I tried finding that information for myself, but I cannot find any link on your site indicating anyone’s bio.
What corroboration do you have for any of the assertions that you make in your argument? Are you intimately involved with the two Texas cases? Have you read the medical records of each? Are you totally conversant with the Texas law? Would, for example, you agree with Scott McClelland when he said that prior to the passage of the law, there were no protections for the patient–basically that hospitals could, were apt to, and were pulling the plug prior to the intervention of the Texas law. Is that true?
I am especially interesting in the following comment:
“When a family is willing to pay for this treatment and no conflicting need on the part of other patients exists, most institutions will agree to continue providing the treatment.”
What evidence can you cite regarding the “no conflicting need on the part of other patients exists” clause?
I’m really interested in discovering that.
Not that I disagree with anything you’ve written, I’d just like to know, other than on personal opinion (albeit objective), on what facts you base your assertions.
“What are your credentials?”
I am a bioethicist. I am not a doctor or healthcare professional of any kind.
I teach ethics and related topics in the City College of New York (Colin Powell’s alma mater!) evening program. I am working on a PhD in Philosophy with a concentration in medical ethics, which I confidently expect to finish by the end of the century. I have taught bioethics in two medical schools, served on clinical and research ethics committees, done clinical consulting . . . the usual routine. I’m just very slow in finishing my degree. I’ve spent a lot of time in hospitals and, like most people in my position, picked up a lot of medical knowledge but would never claim to have clinical expertise.
“Are you intimately involved with the two Texas cases?”
Sorry – this New York boy don’t do no Texas. What I know of the Nikolouzos and Hudson cases I got from the newspapers. I’ve read the text of the Texas futility law but otherwise have mostly read about it in the papers. The concept of “medical futility,” however, has been a hot topic in medical-ethics circles for 5-10 years.
“Would, for example, you agree with Scott McClelland when he said that prior to the passage of the law, there were no protections for the patient–basically that hospitals could, were apt to, and were pulling the plug prior to the intervention of the Texas law. Is that true?”
It was more like there were no protections for the hospital. Once you have a patient in a bed, getting treatment, there is a strong presumption that that patient will continue to get treatment. And if the treatment is necessary to sustain life, there is no way to discharge the patient other than to transfer them to another facility – and you can’t find such a facility if they know the patient has no hope of recovery (this is why Nikolouzos’s wife was turned down by 30 facilities until her case hit the news and she just happened to find one that agreed). Prior to the Texas law (and still in the majority of states that do not have such laws), a court order terminating treatment was the only secure way to cut off futile treatment against a family’s wishes. Simply doing it unilaterally is begging for a lawsuit and a lifetime of bad publicity. (Note that the hospital in the Hudson case sought a court order even though, under the Texas law, they had to right to go ahead without one. Hospitals are very leery of these cases.)
In practice, hospitals try to gently cajole families into accepting the inevitable – both for the families’ own good and to bring the case to a close. When families absolutely refuse to consider terminating treatment in hopeless cases, the cases tend to drag on forever, but if the situation is bad enough (there is an urgent need for the resource the patient is using up, or it’s costing too much – and these cases often run into the millions of dollars over time), then the hospital may go to court even though the family objects. (Insurance companies sometimes force the issue also, by refusing to pay for futile treatment.) Even then it can take forever to settle the issue. Though families usually cannot demand care indefinitely, they can certainly drag things on for a very long time.
“What evidence can you cite regarding the “no conflicting need on the part of other patients exists” clause?”
I’m not sure what you mean.
At any rate, aside from the financial drain on the hospital or the insurer, there are very often conflicts between care in futile cases and care needed for other patients in the same facility. Many of the physical resources used in a hospital are limited. Expensive machines like ventilators, dialysis units, ECMO units, hyperbaric chambers, or even less exotic things like “air flotation beds” to prevent skin damage to bed-ridden patients, are in limited supply. Hospitals purchase what they can afford, or what they think they will typically need. But if one patient ties up a ventilator for years at a time, or needs many hours a week of access to the only therapy machine the hospital owns, then that has a direct impact on other patients – every futile case treated means, quite literally, one less non-futile patient who can be given access to that same resource. One of the most limited resources in any hospital is intensive-care beds: hospitals can provide intensive, life-supporting care only to a specific number of patients (it is provided in specially-equipped wards – it can’t be done in just any regular hospital room), and there are constant fights in hospitals over which patients will be admitted to an ICU and which are ready to be discharged. Most hospitals have a policy that once you get into an ICU you can stay there as long as necessary – but that means that a fully cognitively debilitated patient, who has absolutely no hope of recovery, but who is in an ICU bed, essentially reduces the total number of ICU patients the hospital can treat by one for as long as they are there, which can be years or even decades unless a decision is made to terminate their treatment.
So, futile treatment very often uses up limited hospital resources other than money – this is a standard fact of life in any hospital – and the impact it has on other patients is not in the least hypothetical; it is real and direct. For every limited machine, bed, therapy unit, or other resource used to provide futile treatment, the hospital’s capacity to provide such treatment to patients who can actually benefit from it is reduced by one patient – and that has real consequences.
As for citations, go to PubMed and do a search for “medical futility” or “medical futility resources” – you’ll get an earful.
Mr. Keith,
Correct me if I’m wrong, but you did write the following:
“What I know of the Nikolouzos and Hudson cases I got from the newspapers. I’ve read the text of the Texas futility law but otherwise have mostly read about it in the papers.”
You are admitting that you are playing the “Bill Frist” of bio-ethicists. He makes a diagnosis based only on 4.5 minutes of edited tape, and you ADMIT you base your discussion on Texas newspapers (Texas, which you won’t do).
Personally, I think Bill Frist should be brought up on medical ethics charges and stripped on his medical degree.
You essentially admit to the same crime and think nothing of it, while being an ethicist. How utterly laughable.
And you have the nerve to lecture people who disagree with you.
You have conclusively proved that ethics and this country have nothing in common.
Doug Spirduso
Schiavo round-up
Kevin Keith, Tom Mayo, and Dahlia Lithwick explain it all for you.
You are admitting that you are playing the “Bill Frist” of bio-ethicists.
No. Frist claimed to make a medical diagnosis on the basis of laughably incomplete information. That is, as you correctly note, a breach of professional standards that rises to the level of malpractice.
I have merely described the reasoning behind the concept of “futility.” That is what ethicists do – clarify concepts and discuss issues. I have not expressed an opinion regarding the medical status of the patients in the Texas cases – ethicists who are not clinicians do not make diagnoses no matter how much information they have – and I have not expressed an opinion regarding the appropriateness of invoking the futility standard in these cases. Re-read what I wrote above – my discussion is aimed almost entirely at the news coverage of, and the blog discussion of, these cases – not at what the hospitals themselves did. (I did at one point state that the family members’ expressed opinions on the patients’s status were not “reflective of medical reality.” Perhaps I should have said they were not reflective of the medical facts as reported in the news, which would have been more cautious, but that is as far as I went, or would go, in commenting on the patients’ medical status.)
Ethics consists in clarifying, discussing, and evaluating value-based claims about moral issues. That is what I have attempted to do here. Making ethical decisions in specific cases requires detailed knowledge of the facts of those cases, which is why responsible ethicists do not attempt to make recommendations in cases they have not consulted directly on, and which is why I have not done so here. My remarks were aimed at the general concept underlying the Texas futility law, and the way that law has been reported and discussed in the (mainstream and online) media. If you re-read what I wrote, I think you will see that is true.
Meme Deflation
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Killing Patients in Texas
KTK at Lean Left put together a good post explaining why some Texas medical cases involving a law signed by…
I know leftists like to think of themselves as all-knowing, but I’ll ask this question anyway:
How the Hell do you know that Terri Schiavo has no higher brain function? Have you seen her? Have you made sure that
a qualified physician gives her brain an MRI scan?
IF you haven’t done these things — which, of course, you haven’t — you can’t say with certainty that Terri’s case is straightforward.
Thanks for the meticulous dissection of the hypocrisy issue, Kevin. The information on the “medically futile” law is something I hadn’t seen anywhere else and it does alters the hypocrisy discussion. But it’s a very fine line, for the reasons that “koll” expressed. The comments of the good Messrs. DeLay and Bush regarding “erring on the side of life” and giving Terri “one more chance” can only be taken to mean that that NOTHING should trump the right to life if, as Bush said, there are “substantial questions” (which of course here there are not). If there were no funds to pay for Schiavo’s treatment, would either of them dare to make that argument? Can you imagine them asserting a precedent that hospitals must ignore any financial considerations in order to give all patients “one more chance”? It’s an invisible element of hypocrisy rather than an obvious one, but it’s there.
Excellent piece. It always amazes me how people can argue that the opinions of every knowledgable person related to a case are unimportant. Reality? We don’t need no stinking reality. We’ve still got hope! And as long as we hang onto our irrationality, anyone who says otherwise is *wrong*.
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Good job. I don’t normal offer design suggestions, but (at least on my browser, Firefox/Mozilla) the comments and the trackbacks are not separated. Very confusing.
And this is a blog, not an outpatient clinic – offer opinions freely, and ignore the Frist comparison (which you rebutted quite sensibly, anyway).
And can we get your attention on the medical ethic issue raised by Kleiman, and mentioned by Koll, an earlier commenter:
(1) would the Schiavo case be unfolding differently absent the trust fund; i.e., would a judge have been more inclined to rule that Terri would have wished to die?
(Frankly, I find the question ridiculous – her case was decided on the basis of voluntary patient termination, not futility, but folks seem to wonder).
Secondly, in his update post (to which Koll alluded), Mark Kleiman ruminates that, under Texas law, if Terri S regained consciousness she could *still* be terminated. Atrios excerpted that bit, and I have been advised that Al Franken emphasized that theme last night on television (Scarborough Country)
Again, I disagree – my (numbingly obvious) position is that Texas law requires the doctors to be guided by medical ethics – if Terri S regained consciousness, she would no longer be either medically futile, or in “voluntary termination” mode, so medical ethics would require that she be treated.
Again, the answer seems obvious, but some on the left want to know, and they don’t want to know from a righty.
I appreciate the tone and logic of this post. My concerns about the “futile law” are based more upon the definition of “treatment” and the determination that the situation is medically futile. Let me provide an example. My father had Stage IV lung cancer with brain mets and was admitted to a Texas hospital due to medication-induced delirium. The after effects of the medication combined with a lung infection to cause respiratory failure. They asked if we wanted him put on a respirator, and we decided to do that since we had no reason to believe that Dad would not recover from this particular medical crisis.
After a week on the respirator, x-rays indicated that the lung infection was not longer creating problems, and discussed our next steps. We were encouraged to remove the ventilator with the intention of “letting him go” because his life expectancy from lung cancer was around 3-6 months — not because he was medically futile at this particular point in time. We were told that the process would be giving Dad large enough doses of morphine or other opiates to keep him unconscious when the ventilator was removed, thus depressing his respiratory system, making it highly unlikely that he would be able to resume breathing on his own. The alternative was to stop giving fentanyl and let him regain consciousness so he could participate in the ventilator weaning. We acted AGAINST the hospital’s recommendation by asking that Dad be allowed to try being weaned from the ventilator. The weaning was successful in less than 24 hours with no problems. Within another 24 hours Dad was lucid and completely aware.
We then went through weaning him from a feeding tube, which was very difficult because of his weakened condition. When he removed his own feeding tube because he couldn’t stand it any longer, he was not physically ready to take all nourishment by mouth. Dad and we worked very hard to get enough liquids into him to prevent dehydration, but it was not possible at that point. When I requested IV fluids, I was refused because “it won’t change the ultimate outcome.” The doctor explained that Dad was dying of lung cancer and it was pointless to prolong his life by providing fluids. This was said at a point in time when Dad was mentally fine and completely responsive. After repeated pleas, another doctor ordered IV fluids, and we were about to complete the process of weaning Dad to solid foods. He lived more than 5 months after that.
It occurs to me that medical professionals could well decide that treating my father was “medically futile” given his prognosis. Now, I know that it would not likely happen under the legal definitions and assumptions you are making in your comments. However, we both know that intention and practice are not necessarily the same thing.
By allowing medical ethics committees to have this kind of power, are we allowing a “slippery slope” that will lead to effective euthanasia of terminal patients who have obvious cognitive function? Wouldn’t it be better to spend the time and effort to truly educate the public in general and family members in particular regarding the medical specifics? We spent considerable time in very reputable Texas hospitals over the course of 8 months, and we were not educated about the specifics of my fathers condition unless we insisted. The assumption appeared to be that we wouldn’t want to know or wouldn’t be able to understand. In our case, that attitude created a sense of distrust of what we WERE told by the doctors, and we would research everything we were told independently to reassure ourselves.
Comments?
Sorry. In my previous post I said “respirator” when it should have consistently been “ventilator.”
Pam:
Thanks for sharing your family’s experience. I’m sure it was very difficult for you all; I hope the end was as good as possible for your father and for you.
As for how this situation plays out in the light of the concept of “futility,” it does not seem to me (and I don’t think you were saying) that the doctor who recommended against IV hydration was invoking literal “futility” as a justification or formally invoking a futility policy. I presume that in saying “it won’t change the ultimate outcome” he meant that it wouldn’t stop your father’s disease progress and eventual death – which was obviously true – and perhaps he meant also that he believed it would be more comfortable for your father to slip into unconsciousness and die quietly rather than suffer a prolonged course of disease.
In philosophical jargon, then, the doctor appears to have been advocating a “best interests” standard against which he evaluated your father’s best interest to be to avoid continued pain and deterioration and to accept a more comfortable death only a few months early. This is different from saying continued treatment would be literally “futile” (would provide no benefit at all) – it is saying that it would not be a net benefit, on balance. But there is a serious problem here: the application of the “best interests” standard of decision-making is completely inappropriate for a patient who is alert and able to participate in their own decisionmaking. It doesn’t matter whether the doctor thinks your father would be better off with or without an IV – your father could have, at that point, made that decision for himself! And if your father could not, he clearly had involved and knowledgeable family members who could act as surrogates to express what they understood he would want on the basis of “substituted judgment” – again precluding third-party decisions based on someone else’s evaluation of your father’s interests. So the doctor was clearly taking away from your father a decision that was still his to make, which is a gross intrusion on your father’s autonomy. Further, by refusing to provide a standard (and non-futile) treatment when asked, the doctor is not just intruding but actively thwarting the patient’s wishes, which is even more offensive. None of this should be allowed, and none of it is in keeping with the long-settled consensus on who has authority in such cases. There is no question that, if the facts are as you say, this doctor behave very badly. But it does not appear that the concept of futility was the source of the problem.
If this doctor was invoking futility as a justification for not restarting the IV, that claim is simply false – the IV was clearly not “futile” in the accepted meaning even if it was not in the patient’s best interests overall (again, itself a decision the doctor is not privileged to make). And, under the “futility” law in Texas, if the doctor did refuse to participate on grounds of “futility,” (a) that decision would have to be ratified by the hospital ethics committee, and (b) that only gives the doctor the right personally not to participate, not the right to prevent your father getting his preferred treatment at all. You could (as you did) get around that problem simply by finding another doctor willing to provide the requested treatment, which, in a straightforward case like your father’s, shouldn’t be hard.
This underscores the point of the ethics committee participation. The role of the committee is not to make it easier to refuse treatment to patients – it is to make it harder. One doctor alone cannot declare a treatment “futile” – the doctor must then convince a committee typically consisting of several doctors, several nurses, some ancillary health professionals, a chaplain, a private citizen, and a professional ethicist. Unless they’re all part of a conspiracy to harm patients – which I really think does not happen – then this committee is going to raise objections if the claim of “futility” is not well-founded. And even then, under Texas law at least, treatment must still be provided for at least 10 days, and can be continued under any doctor or facility willing to undertake the care of the patient. So finally cutting off all care requires an agreement among the treating doctor, the facility ethics committee, all the other doctors in that facility, and/or all the admitting officers of all other facilities who might possibly have accepted the patient in transfer. And, really, if all these people and facilities are in agreement that there is no tangible effect at all to be expected from continued treatment . . . well, perhaps there isn’t?
So, I think, first, that the participation of the ethics committee is a safeguard more than a danger (if we’re going to employ the “futility” concept at all). I also think you’re right that healthcare professionals have a positive obligation to help patients and families realistically understand and assess the patient’s condition, and they do a terrible job of this – and we should require more effort of that kind. I don’t think there’s any reason we can’t do both at once, though, and even if all patients and families are fully informed and educated, there will still be patients whose treatments are futile, and we need a way to handle that situation. So I still think the concept of futility plays a useful role, though there are obviously a lot of improvements to be made in various aspects of care.
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The Texas “futile care” law creates situations in which, of two otherwise identical patients, the one with insurance or cash stays on life support and the one without has life support removed. Should we be comfortable with that?
Futile care laws. I have only found two states with these laws, Texas and California. A California article from 2000 states that it is the only state to have the same law as Texas. Oregon, does have a list of treatable diseases for Medicaid purposes and has cut people off from services who have later died. I’m not aware of anybody who was removed fro life support under a futile care situation though.
This isn’t routine across the country. It is not Soylent Green time people. We can implement a national health care plan to reduce costs and make end of life care available. We are going to have a large population of retirees in the near future and you can’t just take our FICA taxes and then kill us off.
In theory, I can understand and accept the “futile law” premises as being reasonable and humane. My issue is whether the intent of the law will be the practice.
For instance, the most troubling part of your first post is the statement: “The obvious inadvisability of this in many hopeless cases was handled informally by hospital staff who agreed among themselves, without consultation with the patients, that certain patients would be ‘allowed’ to slip away.”
That statement confirms my observations during my father’s illness and death. This is absolutely happening every day in hospitals across the country. Your statement, which seems reasonable from an ethics perspective, becomes a horror when doctors and hospitals extend the definition of “hopeless” to include terminal patients who are fully or somewhat conscious and mentally aware. I have seen that happen. I fear that the definitions and intentions of the “futile law” will gradually, by practice, be extended to include terminal patients who have no hope of recovery but who DO have the hope of days or weeks of time with their families. Doctors and hospitals many times fail to comprehend the meaning of one more day of life, one more conversation with a loved one, one more sunrise.
My dad had lung cancer and he suffered some pain. Everyone was anxious to medicate his pain, to the point that at one point he was yelling at the doctors to stop asking about pain. He preferred the pain to the stupor caused by drugs, but it took great effort to fend off repeated attempts to medicate him. He was prescribed vicodin and morphine more times than I can count, even though he specifically stated that he was not in pain. My brothers and I had to watch every time a nurse came into the room to verify what medications Dad was being given because invariably a pain medication would be thrown in. All this was done because the doctor just KNEW what was best for my dad — over my dad’s vigorous objections. From discussions I have had with other families, this is not at all unusual.
At one point I asked why everyone was so anxious to get Dad on morphine, and I was told that they wanted to have the pain medications in place BEFORE the pain started. Had we followed their instructions, the depressant effect of the morphine likely would have robbed my father of many days of clear thought, and quite possible shortened his life. That was not a factor with the medical professionals. They saw him as an elderly man with terminal lung cancer. We saw him as Dad. Each hour, each day that we had him was irreplaceable. Doctors wanted to “spare” him suffering by suggesting that we not treat the treatable infections, etc., without understanding that there are degrees of pain and suffering. Some suffering is worth enduring for the sake of living one more day.
I appreciate the clinical, reasonable, dispassionate, well-considered position of the medical ethics committees. I also appreciate the enormous responsibility of their decision-making process on the lives of real people. Do they? Do they really feel the weight of their decisions?
That is my concern. If the law were to be practiced precisely as you have outlined, I have absolutely no objection. However, the decisions are being made by people. Is it your experience that one panel of medical ethicists and physicians would actually review a case and have the courage to disagree with another panel of medical ethicists and physicians? I wonder.
I am not a brainless twit or am I irrational. I am a layperson who has not been impressed with the ethics of the medical community in practice. I do not trust the “industry” to police itself ethically.
Pam
If a patient is able to respond to doctors then their support should not be removed. In most cases medicaid or medicare will pick up most of the tab to pay for patient care. In my opinion this is murder pure and simple and doctors are getting away with it.
Making ethical decisions in specific cases requires detailed knowledge of the facts of those cases, which is why responsible ethicists do not attempt to make recommendations in cases they have not consulted directly on, and which is why I have not done so here.
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Futile care laws. I have only found two states with these laws, Texas and California. A California article from 2000 states that it is the only state to have the same law as Texas. Oregon, does have a list of treatable diseases for Medicaid purposes and has cut people off from services who have later died. I’m not aware of anybody who was removed fro life support under a futile care situation though.
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If a patient is able to respond to doctors then their support should not be removed. In most cases medicaid or medicare will pick up most of the tab to pay for patient care. In my opinion this is murder pure and simple and doctors are getting away with it.
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If a patient is able to respond to doctors then their support should not be removed. In most cases medicaid or medicare will pick up most of the tab to pay for patient care
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[...] Tom points to another blogger, LeanLeft, who also debunks the blame-Bush-for-killing-patients-for-money line being plied by Mark Kleiman among others. Posted in: End of life issues Send to a Friend Printer Friendly comments (0) trackbacks (9) [...]
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