Bad Meme a-Risin’: “Killing Patients to Save Money”
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KTK
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.
