Pulling the Plug on the Poor: When Medical Futility Law Zeros in on People Without Adequate Insurance
Steven E. Landsburg in an article earlier this month in Slate asked Do The Poor Deserve Life Support?
He took as example a 27 year-old woman who died last December in Texas:
Tirhas Habtegiris, a 27-year-old terminal cancer patient at Baylor Regional Medical Center in Plano, Texas, was removed from her ventilator last month because she couldn’t pay her medical bills. The hospital gave Ms. Habtegiris’s family 10 days’s notice, and then, with the bills still unpaid, withdrew her life support on the 11th day. It took Ms. Habtegiris about 15 minutes to die.
Slate illustrates this story with a cartoon of a blue-faced person dead in bed with pennies on her eyes. The image is titled “Poor.” See the full sized illustration, “Poor EX” at Slate.
Landsburg’s breezy angle emphasizes money, which might seem natural from an economist. But there is an economics of care and compassion above and beyond money. And you might never know from reading his article that the Texas law is about — or at least aspires to be about — medical futility, not about insurance and hospital bills.
Landsburg says, if you asked a woman of 21 which she would prefer, $75 to be spent on groceries or shoes or $75 to be spent on lifetime respirator insurance, probably she would choose to spend it on the shoes or groceries or some other consumer good. I wonder, has anyone asked dying patients and their families how they would prefer to cope with death and dying?
Is the Futile Care law, in truth, legalizing medical abandonment at end of life for people who don’t have enough insurance to pay, immediately, for all their medical care, including the costs of those larger-than-average hospital rooms designed with warm colors, soothing pieces of artwork and soft lighting, those 30-inch LCD televisions and internet hookups?
Before this Texas law was enacted, did anyone consider that allowing hospitals to pull the plug on 10 days notice might hurt and alienate some people — family members and the dying themselves — who might otherwise, in the absence of legal compulsion, be willing to make that decision themselves on medical, ethical and compassionate grounds?
Why else do some people fight for death with dignity? For many people, the prospect of dying intubated and on a respirator is a nightmare. But when a hospital admits a dying patient, hooks them onto a respirator, then at some point –after 25 days in Ms. Habtegiris’s case –sends someone in to inform the family that, like it or not, their loved one will be unplugged in 10 days time, then you create not just a medical technology nightmare but the appearance of brutal medically-directed override.
Advocates for the dying should closely watch how Texas hospitals use the “safe harbor” provision of this bill, which protects hospitals that folow the provisions from criminal prosecution.
At the same time we need to realize how medical attitudes have turned around in Texas. On a webpage made before the death of Ms. Habtergiris, University of Texas Medical Branch Institute for the Medical Humanities says “A decade ago, lawsuits centered on ‘right to die’.” Today:
the battlegrounds have shifted. After years in which families pressed hospitals to let their loved ones die, today it is often hospitals that want to stop treatment and families seeking to continue life support and aggressive care.
Nowhere is the trend more pronounced than Texas, where two Houston cases recently cast attention on a 1999 law laying out the obligations on providing treatment when care is considered futile. The law attempts to safeguard both hospital and patient rights.
The Texas cases involved patients on ventilators, one an infant with a fatal form of dwarfism and the other a 68-year-old man in a persistent vegetative state.
In both cases, the hospital’s ethics committee said continued treatment would be futile and inhumane. In both cases, the patients disagreed and took the matter to court.
“Hospitals are trying to say, ‘No one can do the impossible,'” said Art Caplan, a University of Pennsylvania bioethicist. “But in America, a funny mixture of religion and faith in medical technology makes some families unable to accept that.”
Slate’s economist is not interested in this at all, his question is, Is it fair to withhold life-support from people who have never bought insurance to cover any time they might need to spend on a respirator? His conclusion –yes, it is fair — should apply equally to uninsured healthy people who need respirator time to recover from a crash injury, say. Hey, no insurance, off the respirator, you deadbeat freeloader.
Considering the vehemence of the purely economic argument, accuracy about the terms of the law’s claim to be about ending medically futile interventions must be accompanied by full recognition of how easily this law might be abused to consign the poor, the uninformed and unfortunate to a fate far worse than a hospice death managed without respirators or any “futile” or desperate measures.
Is this law applied selectively — only to those who cannot pay their bills — as the Slate commentator believes would be quite fair to do? Does Texas have and plan to maintain a 2-tier system, in which rhetoric about ethics and medical futility is to be used to eject the poor from life-support, putting all medical care for the poor on a slippery slope; while those who have personal wealth or sufficient private insurance will never be expected to be bound by medical advice about futile measures?
First let’s look closer at where this young woman dying of cancer took her last breaths. At Baylor Regional Medical Center at Plano, “patients stay in larger-than-average hospital rooms designed with warm colors, soothing pieces of artwork and soft lighting. Each room features a 30-inch LCD television with a channel that displays patient care information, such as medication and nutrition instructions. Internet access is also available. This more hospitality-like environment will contribute to patients’ and family members’ comfort, promoting healing and rapid recovery.”
Patients at Baylor Regional Medical Center at Plano experience an up-scale, elegant atmosphere supported by advanced technology to enhance patient care.
“Our goal is to create the ideal patient experience. Through detailed design and advanced technology, we want to make each patient’s visit to Baylor Plano safe, efficient and very comfortable,” said Jerri Stuart-Garison, president, Baylor Regional Medical Center at Plano. (The Ideal Patient Experience at Plano)
Baylor Regional Medical Center at Plano offers “specialized cancer screening, diagnosis and treatment services.” Treatments advertised for cancer include conventional therapies like surgery, radiation and chemotherapy and advanced treatments — bone marrow transplantation, hypothermia treatment, monoclonal antibodies. They also offer pastoral care. “Baylor’s Healing Environment Task Force helps soothe and care for patients through music, art, drama, clowns, and a meditation television channel.” They have a “Please pray for me” line.
Robert H. Frank in his New York Times column Economic Scene, Jan. 19, says Tirhas Habtegiris was conscious when the plug was pulled. He explains that Tirhas, a legal immigrant,
was being kept alive by ventilator as she lay dying of cancer last month in the Baylor Regional Medical Center in Plano, Tex. Physicians offered no propsect for her recovery. She was hoping, however, to hang on until her East African mother could reach her bedside.
Ms. Habtergras had little money and no health insurance. On Dec. 1, hospital authorities notified her brother that unless another hospital could be found to treat his sister, Baylor would be forced to discontinue care after 10 days. But even with Baylor’s assistance, the family was unable to find a willing hospital. True to its word, Baylor disconnected her ventilator on Dec. 12, invoking a law signed in 1999 by George W. Bush, then governor of Texas. The law relieved doctors of an obligation to provide life-sustaining treatment 10 days after having provided formal notice that such treatment was found to be medically “inappropriate.”
Janet St. James in a news report for Dallas-Fort Worth TV 8 WFAA [ register to read transcript and to see video] says that Tirhan has been on the respirator at Baylor Regional Medical Center at Plano for 25 days.
“They handed me this letter on December 1st. and they said, we’re going to give you 10 days so on the 11th day, we’re going to pull it out,” said her brother Daniel Salvi. Salvi was stunned to get this hand-delivered notice invoking a complicated and rarely used Texas law where a doctor is “not obligated to continue” medical treatment “medically inappropriate” when care is not beneficial.
Even though her body was being ravaged by cancer, this family says Tirhas still responded and was conscious. She was waiting one person.
“She wanted to get her mom over here or to get to her mom so she could die in her mom’s arms,” says her cousin Meri Tesfay.
Landsberg in Slate and Frank in the Times both focus on economics. Janet St. James in her report for TV focuses on the law and the mourning family. A blogger who jumped on this story last mid-December, YucataMan in the Daily Koss , recalls the Terri Schiavo case:
No one here can forget the spectacle made over the death of Terri Schiavo, whose brain had died long, long ago. But in Texas, the law George W. Bush signed as governor allows doctors to inform the family that further treatment is hopeless (and costly) and Pull the Plug. Literally.
In the latest case to escape the Culture of Life warriors, Tirhas Habtegiris, a young woman and legal immigrant from Africa, was CONSCIOUS and responsive when removed from a respirator and allowed to die.
At the time of the battle over Terri Schiavo’s right to die, Pres. Bush’s press secretary, Scott McClellan, denied an accusation that the law Bush had signed in Texas was in contradiction with his campaign to see Terri Schiavo kept alive at all costs.
That’s absolutely incorrect. The legislation he signed is consistent with his views. You know, this is a complex case and I don’t think such uninformed accusations offer any constructive ways to address this matter. The legislation that he signed into law actually provided new protections for patients. He had previously vetoed legislation in 1997, when he was Governor, which essentially would have sanctioned current law in Texas that allowed hospitals to stop providing life-sustaining treatment — because under Texas law, prior to the passage of the ’99 legislation that he signed, there were no protections. And so this legislation was supported by many; it enjoyed strong bipartisan support; concerned citizens, various groups came together to support this legislation and put in place new protections for patients.
The legislation was there to help ensure that actions were being taken that were in accordance with the wishes of the patient or the patient’s family. And let me give you an example. Prior to that legislation being passed I think there was a 72 hour period where if the hospital notified a patient — or the family that represented the patient that they were going to deny life-sustaining treatment, then they had just that 72 hour period to find a place to transfer the patient, that would provide the treatment.This legislation, some of the new protections it put in place were –included, the ethics committee review by the hospital, in working with the families as well, making — you know, to discuss those decisions, determinations. And it also provided a 10-day period, so they had 10-day notice to be able to transfer the patient to another health care provider. And it also authorized court proceedings to extend that 10-day period in order to extend that transfer, if necessary.
McClellan’s statement grossly distorts the nature of the law. The law does not ensure that actions are taken in accordance with the wishes of the patient or the patient’s family’s.’ In fact it codifies and legalizes the ability of doctors to stop treatment even if it goes against the explicit directive of the patient or the patient’s family.
Thinkprogress quoted this paragraph from chapter 166 of the Texas Health and Safety Code:
If the patient or the person responsible for the health care decisions of the patient is requesting life-sustaining treatment that the attending physician has decided and the review process has affirmed is inappropriate treatment, the patient shall be given available life-sustaining treatment pending transfer under Subsection (d). The patient is responsible for any costs incurred in transferring the patient to another facility. The physician and the health care facility are not obligated to provide life-sustaining treatment after the 10th day after the written decision required under Subsection (b) is provided to the patient or the person responsible for the health care decisions of the patient.
The Seattle Times reported at that time, March 22, 2005:
In Texas, Bush’s position also had the backing of the Texas Right-to-Life Association, whose national headquarters, along with other Christian conservatives that make up a key part of the Republican base, has taken up the fight to prolong Schiavo’s life as a cause célèbre.
Burke Balch, director of the Powell Center for Medical Ethics at National Right-to-Life in Washington, said he represented the Texas chapter in more than two dozen negotiating sessions over the 1999 bill. He acknowledged that the legislation could allow a hospital to move to end a patient’s life over the family’s wishes but denied that was inconsistent with Bush’s positions now, or his own group’s as well.
“Does this mean that we or Governor Bush are hypocrites because we supported that law? The answer is, it was the best we could achieve at the time, better than the existing state of the law. … But when we have the ability to change the law to be more protective, certainly we would do that,” Balch said.
Indeed, according to HealthLawProf Blog, “one of the co-drafters in both 1999 and 2003 was the National Right to Life Committee.” But they were not the only advocacy group interested in this law. “Witnesses who testified in support of the bill in 1999 included representatives of National Right to Life, Texas Right to Life, and the Hemlock Society.” Strange bedfollows, or not?
The 1999 bill extended previous provisions to minors, which is what brought about the case of baby Sun Hudson. In March 2005, a five-month old baby, Sun Hudson, born with a rare form of dwarfism (thanatophoric dysplasia), at Texas Children’s Hospital in Houston was taken off the ventilator that was keeping him alive.
Robert Fine MD, in an article Medical futility and the Texas Advance Directives Act of 1999, writes:
Advance directives in Texas clearly recognize that patients may use a directive to reject or request treatment in the face of terminal or irreversible illness. Surrogates acting on behalf of incompetent patients may do the same. However, not all requests are necessarily granted. If there is a request for treatment that the treatment team feels is medically futile, an ethics consultation may be requested. Under the new law, the following process must occur if the treatment team and institution wish to take full advantage of the provisions of the law creating a legal safe harbor for them. These provisions are as follows:
1. The family must be given written information concerning hospital policy on the ethics consultation process.
2. The family must be given 48 hours’ notice and be invited to participate in the ethics consultation process.
3. The ethics consultation process must provide a written report to the family of the findings of the ethics review process.
4. If the ethics consultation process fails to resolve the dispute, the hospital, working with the family, must try to arrange transfer to another provider physician and institution who are willing to give the treatment requested by the family and refused by the current treatment team.
5. If after 10 days, no such provider can be found, the hospital and physician may unilaterally withhold or withdraw the therapy that has been determined to be futile.
6. The party who disagrees may appeal to the relevant state court and ask the judge to grant an extension of time before treatment is withdrawn. This extension is to be granted only if the judge determines that there is a reasonable likelihood of finding a willing provider of the disputed treatment if more time is granted.
7. If either the family does not seek an extension or the judge fails to grant one, futile treatment may be unilaterally withdrawn by the treatment team with immunity from civil or criminal prosecution. (This is the “safe harbor” for physicians, institutions, and ethics committees, the first of its kind in the country.)
After presenting a case, he ends: “The new Texas Advance Directives Act brings many important benefits to patients, families, physicians, and medical institutions. These are discussed elsewhere in the medical literature. One is not mandated by law to follow the process outlined above; however, licensing authorities can penalize both physicians and nurses if the process is not followed. In addition, immunity from civil and criminal prosecution after ignoring the wishes of a surrogate health care decision-maker is offered only if the ethics consultation process is used.”
Not one word in Fine’s article is about medical bills, health insurance or money. Yet economists at both Slate and the New York Times were not biased when they seized on money as the primary reason for what happened to Ms. Habtegiris and said: “The hospital gave Ms. Habtegiris’s family 10 days’ notice, and then, with the bills still unpaid, withdrew her life support on the 11th day.”
This not how the Texas legislator, Texas bioethicists and Baylor doctors pretend it is supposed to be. If chapter 166 of the Texas Health and Safety Code were genuinely applied, that statement should read something like, they gave the family 10 days notice, and then, with the patient’s medical status unchanged, withdrew her life support.
Many people with advanced cancer dread to die hooked up to a respirator in hospital. They want to die at home surrounded by family and friends, away from steel machines and steel-hearted medical ethicists and hopsital accounting departments.
If this were a compassionate law genuinely concerned with avoidance of medically futile treatments, provision would be made to compel hospitals to provide good quality hospice care for dying patients.
Baylor could have afforded to work with this family to resolve the concern about bringing Ms. Habtegiris’s mother to her bedside.They could have helped. Yet if that were a realistic hope, why had the family not been able to take any steps toward it before Ms. Habtergiris was dying in hospital hooked to a respirator? Would a (belated) effort to bring the mother to the USA have shown compassion (and possibly even brought Baylor moral standing of the kind that attracts more paying patients?) Or would it have been , really, cruel toward the patient, who would be expected to remain kept alive by a machine until the mother arrived?
It takes time for families to accept that a member is dying. The office of pastoral care at Baylor, Plano is mentioned as a contact in the hospital’s Magazine (November 2005, a month before Ms. Habtergiris was taken of repirator). In a soothing article, Helping family members make their wishes about end-of-life decisions known, Stephanie Thurrott writes:
Some family members may feel uncomfortable with this discussion, so try to help put them at ease. You could try initiating a discussion about Terri Schiavo or other national news stories surrounding end-of-life decisions. However you broach the subject, open the conversation gently, asking, “I’d be afraid I wouldn’t know what you wanted if you were ever really sick. Can we talk about it?” Or, open the discussion around yourself: “If I were ever really sick, here’s what I would like you to do.”
If family members are truly hesitant, don’t force the conversation. Now that the topic has been aired, wait for another time to continue the discussion.
Be prepared for comments that may surprise you-you may assume your father doesn’t want any treatment if doctors feel he has no chance for recovery, for example, but he may decide he would like to be kept alive by any measures necessary. That’s why this discussion is so important. And remember, there’s no right answer. You may disagree with someone’s choices, and they may disagree with yours. What’s key is knowing what everyone wants.
To talk with someone in the Pastoral Care department at Baylor Plano, call (469) 814-2700
This article does good by advising people to download a tool for planning end of life care:
For information about creating a family health portrait and to download a worksheet to map your family health history, visit hhs.gov/familyhistory.
But the article makes no mention at all of the Futile Care law. The article implies that all patients have a right to decide freely (“remember, there’s no right answer”) and that their wishes will always be respected. Nothing is said in this brief article about how an ethics committee may decide that further care is futile; and how, if a doctor chooses to tell the family this, the family will be obliged to move the patient out of the hospital within 10 days. And how, before the patients’ family wastes precious time phoning around, they may as well know, in all probability no other facility in Texas will accept this patient.
You have to wonder, in view of the hospital’s image of itself, how often did anyone on charge expect this to happen? Did the administrators and doctors assume that it would not happen unless by chance the front desk messed up and let in some dying person who had not enough insurance to cover life support?
Is the Futile Care law, in truth, legalizing medical abandonment at end of life for people who don’t have enough insurance to pay, immediately, for all their medical care, including the costs of those larger-than-average hospital rooms designed with warm colors, soothing pieces of artwork and soft lighting, those 30-inch LCD televisions and internet hookups?
Jacqueline Strax, Jan 20 2006.
