Another case of medical futility is sparking outrage and confusion. Recent stories about the case of Tirhas Habtegiris, a young African immigrant with incurable cancer, who was ventilator-dependent at Baylor Regional Medical Center at Plano, Texas, have provoked a lot of commentary, almost all of it incorrect on the facts and principles at work in the case.

After 25 days on the vent with no sign of improvement, Baylor’s ethics committee met on the case and invoked Texas’s “medical futility” law, allowing withdrawal of “medically inappropriate” care with 10-days’ notice to the responsible parties. The patient’s family was notified and the vent was discontinued on the 11th day (36th day of vent support); the patient died immediately thereafter. The family insists that the patient was conscious until the end; there is no indication in the press reports whether this was true, but it is difficult to imagine that the ethics committee would have ruled treatment futile if that was the case.

The family wanted care to continue until the patient’s mother could be present for her death. However:

Salvi said his sister wanted to die in her mother’s arms.

A hospital spokesperson the facility offered to hire an immigration attorney free of charge to help bring the woman’s mother from East Africa.

Relatives, however, said the East African process was too lengthy.

It’s not clear, then, how they hoped to resolve the situation.

At any rate, the family is quite angry (”If you don’t have money in this country, you’re nothing. You’re not a human being.”), and commentary has focused largely on the heartlessness of the hospital’s cutting off care “for financial reasons”, with vague implications of racism thrown in. A lively debate on these lines has been going on at DailyKos, inflamed in part by Kos’s YucatanMan’s uncritical declarations that the patient was in fact conscious and that the decision was made only on financial grounds. However, economist Steven Landsburg has an article in Slate arguing that such a decision is justifiable as a question of marginal value.

The back of my envelope says that a lifetime’s worth of ventilator insurance costs somewhere around $75. I’m going to hazard a guess that if, on her 21st birthday, you’d asked Tirhas Habtegiris to select her own $75 present, she wouldn’t have asked for ventilator insurance. She might have picked $75 worth of groceries; she might have picked a new pair of shoes; she might have picked a few CDs, but not ventilator insurance.

She might even have picked something health-care related—a thorough physical exam, or, if there were better markets for this sort of thing, $75 worth of health or disability insurance. I doubt very much, though, that with $75 to spend, she’d have chosen to insure against needing a ventilator as opposed to any of the other minor and major catastrophes to which we mortals are susceptible. . . .

The issue is: Given the current system, should or should not the federal government (or Baylor Medical Center, or somebody) effectively guarantee that nobody will ever die for lack of a ventilator? In other words, should poor people be given ventilator insurance?

The bloggers at Daily Kos say yes. But for the same cost, we could give each of those people a choice between ventilator insurance on the one hand or $75 cash on the other hand. . . .

[C]hoices have to be made. A policy of helping everyone who needs a ventilator is a policy of spending less to help the same class of people in other ways. Accounting for “economic considerations” means—by definition—trying to give people what they’ll value the most. In other words, economic considerations are the basis of true compassion.

None of these discussions seems to recognize the actual decision-making process underlying the Texas case, or the values that inform that process. The fact that the law allowing termination of futile treatment was signed by then-Governor George Bush makes it easy to assume the rationale for the policy is, in fact, “killing people for money”, but that’s not the case. The medical-futility law was hammered out as a compromise between medical providers, who wanted freedom to make decisions on purely clinical grounds, and “pro-life” groups who wanted continued treatment in almost all cases. The result is a fairly reasonable futility policy that allows for termination of truly useless treatment but still leaves patients’ families with a range of options.

The working of the law is this: continued treatment is required whenever it provides a “medical benefit” - presumably meaning some sort of desirable, clinically-measurable outcome, though not necessarily a cure - to a patient who is already under treatment, regardless of the patient’s ability to pay or the likelihood of a cure for the patient’s underlying disease. The futility law has nothing to do with whether the patient is “terminal” (it also has nothing to do with whether the patient is “brain dead”). It allows for termination of ongoing treatment, including life support, when it is determined by clinicians that there is no available treatment that would be “medically appropriate” - again defined in terms of providing an clinical benefit. These are cases of “medical futility” - cases in which there is no reason to believe the patient can achieve tangible benefit from any available treatment. In such cases, the hospital can, but is not required to, issue a notification to the appropriate decision-maker and terminate the treatment upon 10 days’ notification. The determination that treatment is futile must be confirmed by clinical consultation and by the facility’s ethics committee. The family is empowered to seek an alternative placement for the patient in a facility willing to continue treatment, and the treating facility is obligated to assist in this process. If another facility cannot be found, the treating facility can discontinue the futile care after the 10th day.

Money certainly does enter into this process: the only reasons that a facility would be likely to initiate a futility termination are when the patient is using irreplacable resources that are needed by other patients, and when the patient cannot pay for the futile care and the hospital is likely to be forced to eat the cost of the hopeless treatments for a patient who cannot benefit. A family that requested futile treatment and could pay for it would probably be accommodated, within reason, as long as there was no conflict involving scarce resources needed by another patient. This would ease the family’s state of mind and prevent conflict or bad publicity for the facility - but it would essentially be an indulgence of the family’s unrealistic hopes predicated on their willingness to pay for that indulgence, not an exercise of reasonable clinical practice. Similarly, the reason other facilities refused to take this patient in transfer (and have likewise refused in several other high-profile cases of this sort) is because they would not be reimbursed for the care, and were essentially being asked to agree to pay for indefinite futile treatment at the family’s request, out of their own pockets. Not surprisingly, every facility contacted with this request declined to do so. And the reason payment will not be forthcoming is not merely that the families do not have resources, but, even where the patients have insurance, the terms of insurance often preclude payment for futile treatment. Money is a factor in these decisions, it’s true. Basically, nobody wants to pay for expensive, pointless care - but families often demand it, and then blame the treatment facility that happens to be on the hook at the time the futility determination is made, insisting that they continue such treatment at their own expense and charging they have “killed the patient for money” if they do not.

However, money is not the only factor in these decisions, and not the determining factor in whether treatment is discontinued. The futility law can only be invoked when clinical professionals, including consultants not directly involved in the patient’s case, determine that continued treatment would be clinically futile. The facility ethics committee must ratify that determination, and in doing so would typically take into account non-clinical values such as the patient’s expressed preferences and the possibility of bringing treatment to a meaningful close through a family gathering or religious ceremony. Hospitals often continue treatment beyond the 10-day notification period to allow for these possibilities (they apparently acted in the Habtegiris case when it became clear that that was not possible). More importantly, the condition of clinical futility must be present in order for treatment to be terminated; treatment must be continued if it is clinically beneficial, even if the patient cannot pay. Thus, lack of ability to pay does not itself authorize termination of treatment; it is only clinical futility that authorizes termination - lack of ability to pay is often the trigger for termination when treatment is futile, but only futility itself justifies that termination. And so this policy cannot be one of “killing patients to save money”, because, by definition, the clinical outcome in these cases would be the same whether treatment was continued or not.

The Habtegiris case was one of clinical futility - certified as such by the clinical staff and the ethics committee. The family claims she was conscious at the time of her death, but it is hard to credit this account - if so, and the ventilator was obviously what was keeping her alive and therefore conscious, then her vent was clearly providing a clinical benefit that the committee could hardly have overlooked! More likely, her family was “pulling a Schindler” - convincing themselves of what they wanted to believe in the face of contrary clinical evidence, then whipping up public support in favor of their hoped-for perspective. Kos YucatanMan endorsed their claim without even mentioning the concept of futility or the clinical and ethics reviews that determined she was not benefiting. Many of his readers complained of “lack of compassion” without arguing for a particular correlation between compassion and expected benefit (it would be a strange correlation that held “compassion” required doing nothing useful at unlimited expense, but that is the substance of their implicit demands). Landsburg’s entire economic analysis is also devoid of the words “futile” or “futility” - though that is the heart of the law, and the decisionmaking procedure, that produced the outcome he analyzes.

There is no question that the concept of futility is a challenging one, and one that creates grave conflicts between patients or their families and the efficient provision of healthcare. If money (and resources, and bed space, and staffing . . . ) were no object, we could provide unlimited care for anyone, no matter how hopeless. We could indulge whatever unrealistic hopes for “miracle cures” families chose to nurture. It is not clear we would be benefiting families by encouraging such hopes, but we would at least be granting their wishes. But money and resources are always an object, especially in healthcare. And when faced with indefinitely-prolonged outlays of scarce resources at the demands of others who have the luxury of nurturing hopes they do not have to pay for, some kind of line must be drawn. “Futility” draws that line at the point of unlimited expense for zero benefit, which is hardly the same thing as “killing patients for money”. If we are going to consider carefully how to meet the challenges of continued care without benefit, we must at least stop sensationalizing these cases and respect the actual clinical facts that drive them. Then we can consider what values come into play in responding to those facts.

ADDENDUM: I previously blogged on similar cases under the same Texas law here and here. The former link has been excerpted for a book on euthanasia, forthcoming from Thomson/Gale press. It is clear that jumping to conclusions about bad intentions under this law is a common and recurring problem. I can sympathize, but I want to emphasize that the concept of futility is one that is well-known in bioethics circles and has been widely-debated by well-meaning and, yes, compassionate people. In my opinion the Texas law is well-crafted and does a good job respecting the interests of all concerned parties.