Texas Futile Care Law Bill Fails
I am not happy: But my ire was raised before the ultimate failure of the bill to outlaw futile care theory in Texas. The "good" bill, which would have required hospitals to maintain treatment pending a transfer to another hospital would have breezed to passage, and in the process given a body blow to Futile Care Theory. Then, inexplicably, the Catholic Bishops (I believe at the behest of the organization representing Catholic hospitals) opposed the bill and threw its considerable heft behind a bill extending the 10-day cut off to 21-days. That sounds impressive, until you realize that the extra time would have been meaningless, since it appears that Texas hospitals are honoring each other's futile care determinations and refusing transfers! Remember, Andrea Clark's family desperately searched as far as Illinois to find a hospital to accept her. (I spoke to one person on the ground, who told me that advocates are now looking to Mexican hospitals to take these patients!) The one good provision in the alternative bill, declaring tube supplied food and fluids to be ordinary care, should be passed anyway.
So, now it will be up to the courts. And we have to get other states to pass laws requiring continued care pending transfer in futility disputes. Otherwise, we are on the road to explicit health care rationing and an implicit duty to die.
Labels: Baby Emilio. Futile Care Theory., Futile Care Theory. Texas. Catholic Bishops
posted by Wesley J. Smith @ 5:15 AM
10 Comments
10 Comments:
Wesley,
It's astonishing that you state that hospital funding would turn the ethics of 24 bishops.
If there are no facilities to care for comatose patients on ventilators and dialysis, it will be because SB 439 failed, with its dedicated funding for such care.
Doctors practice medicine. When the evidence indicates that the patient is dying faster and more inevitably than any treatment we have available can reverse, we will generally "agree." We don't "agree" without considering the medical condition of the patient and what we know - our medical judgment - about our capabilities.
The bill that would have forced physicians to repeatedly, constantly and indefinitely write medical orders against our medical judgment and conscience would have been an unethical law. I'd have treated it as invalid and a law enslaving members of one profession.
I believe my suspicions--and that is all they are--are true, that these well-meaning folk are seeing this as a social justice issue, with all of the lack of coverage for other patients, etc. And they have convinced themselves that the patient's right (in Catholic moral teaching) to refuse "extraordinary" measures means they have the right to make the same decision on behalf of the patient/family, who are making the wrong choice. And your example of the patient dying faster than you can prevent is explicitly NOT what was happening with Andrea Clark and Baby Emilio. Indeed, their continued existence due to treatment was the reason you supported their unilateral withdrawal, as a matter of alleviating their suffering.
It IS about money, if you read the utilitarian bioethics literature. And it is about imposing a quality over a sanctity/equality of life ethic in health care--as is explicitly occuring now in the UK under the NHS guidelines.
You do not have the right as a doctor to impose your subjective views on patients and families, that their lives are no longer worth sustaining. Can't you see the potential for oppression?
I do have the right to refuse to act against my conscience, as do we all.
There's a very real opportunity for oppression any time the State forces one person to act against his conscience, that person's liberty is infringed. Then everyone's liberty is infringed.
More if you change medicine from a group of professionals who answer to each other as well as our patients, to a group of trained technicians who follow orders -- then you will definitely set up the very conditions you seem to fear.
And, of course, Mrs Clarke and Emilio were dying faster than we could help. We weren't even maintaining the systems in place - the systems and organs failed, requiring increasing invasive and painful treatments and manipulations. Either or both could have gone even further - to pacemaker, external circulation assistance and gas exchange, in order to delay their deaths to total brain death. And why not, if the families had demanded it?
We doctors train to suppress our normal response against causing pain, but we see the long term benefit of healing, not to prolong the process of dying. (One of the worst things I've ever had to do was clean 3rd degree burns on the hands of a 3 year old, three times a day. Morphine just gave us a drunk, frightened child who still hurt.)
However, I hope we don't get used to it - to the point that causing pain no longer causes us pain that we have to rationalize away.
I hope that everyone who feels so strongly will go to med school - I did, at 30 years old, you can, too.
Then, you can stand at the bedside and cause pain to a child that should have been allowed to die from the second or third crisis that God sent after he became so ill.
I do have the right to refuse to act against my conscience, as do we all.
Completely hypothetical question, Beverly: Suppose that it's against my conscience to provide food or water for my child. Surely I can place him for adoption or hand him over to social services, but it's a 2 week drive (like I said, hypothetical) and the child will die in that time. So it's my conscience vs. a child's right to live. Who wins? Do I not continue to feed the child until someone can relieve me, or do I say "I do have the right to refuse to act against my conscience, as do we all."
Let's take another hypothetical situation (I admit, these are bad scenarios, but indulge me): You come across an elderly homeless person who has just stopped breathing. He is obviously living a rough life on the street: his clothing is old, torn and not weather-appropriate. Your conscience says this person is better off dead than revived to live a horrible life on the streets. Do you not perform CPR until rescuers can take over? Or do you simply say "I do have the right to refuse to act against my conscience, as do we all."
Change the scenario: a retarded person, a diabetic who continues to lose limbs, etc. I would say that your right to follow your conscience does not supersede another's right to LIVE. Do you also see how these ethical "quality of life" judgements lend themselves to oppression and discrimination when we offer physicians such latitude?
There is a distinct difference between refusing to perform a task that you feel would harm another person (like an elective abortion, or much like you felt that providing Emilio a trach would have hurt him) and medical neglect resulting in patient death. I am all for your right to conscientiously object, but in life-or-death situations, if there is no one else to relieve you, you must treat-until-transfer: Much like you must render aid until the ambulance arrives and feed your child until social services can receive him. Certain things are more important than "your conscience."
Your right to refuse treatment ends when refusing treatment results in taking the life of an innocent person. If that's your position, avoid those situations in your practice or have others with different convictions practicing with you so you can defer to them. You do not control life or death because you are a physician- that's a dereliction of your moral obligations as a doctor.
I'm pro-transfer all the way (so you may maintain your conscience), but the hospital unholy alliance thwarts that almost every time. Frankly, if you would pursue diplomacy in transfers rather than legislating a "get out of jail free card" so you can refuse life-saving/life-sustaining treatment at your whim, you wouldn't have to violate your conscience.
It seems as if you are simply trying to avoid all accountability. And by the way, I greatly appreciate you sabotaging any efforts to find a doctor to do a trach for Emilio. It seems to me that you feel you should never have to go against your conscience, and no one else should go against your conscience either.
JaqueFromTexas "If that's your position, avoid those situations in your practice or have others with different convictions practicing with you so you can defer to them."
That's exactly what the abortion proponents tell me, threatening to take my license or Board certification.
We've seen the movement to infringe on pharmacists' right not to dispense - or even to refer to others who will. R. Alta Charo, in the New England Journal of Medicine, June, 2005, criticized "The Celestial Fire of Conscience." (And I'm sure Wesley remembers when she attacked him to make a similar point last October at the American Society of Bioethics and Humanities conference.) Julian Salvescu, in the British Medical Journal, February, 2006, made the same case against doctors who refuse to carry out legal and what his "convictions" lead him to believe are "beneficial" treatments.
As a family doctor who admits patients to the hospital, there's no way to "avoid those situations," and I prefer to associate with doctors with ethical "convictions."
However, your analogies mix apples with oranges with chestnuts.
The law recognizes the special relationship of parent to child and physician to patient - along with the higher duty of the person with more power in the relationship. Abandonment and neglect are inexcusable. (Although you are wrong about the law requiring resuscitation of someone on the street - it's not neglect to refrain from acting, and we've had to write "Good Samaritan" laws trying to prevent lawsuits in those cases where doctors and others stopped to help.)
The disagreement in question is actually about the right to conscience, based on medical judgment -- and the "medical judgment" is subject to review by the nurses on the ward, other doctors, the ethics committees, and, ultimately, the Board of Medical Examiners.
The law (so far, at least) does not compel indefinite action against conscience, recognizing that autonomy is always secondary to non-maleficence. The definition of non-maleficence, "First, do no harm," is where medical judgment comes in. It's our conscience that makes us apply our medical judgment.
The new law would have increased protection for patients, prevented the removal of artificial hydration and nutrition, and more than doubled the time that doctors had to give medical treatment that they and others deemed "inappropriate." It would have also added funding for facilities that offered complex medical treatments, such as dialysis for comatose patients, which simply don't exist in Texas.
I had nothing to do with Emilio's case, especially any "sabotage," although I did offer to consult. (It would have been smart on the lawyers' part to take me up on my offer - either I'd have fought alongside them for the baby, or, I would have had to be quiet.)
Lifethics: I have long suspected that your antipathy to stopping the futile care law was grounded in your fear that pro life doctors could be forced to participate in abortions against their consciences. I have been aware of this concern when speaking against futile care theory to pro life groups and leaders. But one has to do with extending life, the other is mostly an elective procedure. Surely some method could be devised to prevent doctors from forcing people off the life boat as a matter of conscience, and forcing unwilling doctors to perform abortions or assisted suicide.
The whole issue comes down to the negative rights to life, liberty and property that are the basis for ethics.
The right to life does trump the right to liberty. However, when one person's liberty is restrained in order to protect another person's life, the law has pretty much erred on the side of forbidding action rather than compelling action. No act to abort. No act to cause death. But also, no forcing acts to the benefit of one and harm to the other. (Taxes excepted, of course.)
However, again, we're talking about cases where the medical care is invasive and painful while the disease is progressive, with cells dying and one crisis followed by another. Sometimes our interventions actually cause more crises - that's probably what happened with Mrs. Clark's medicines to keep her blood pressure up and after the gallbladder aspiration. We use the same medical judgment to adjust ventilator settings, to decide where to access veins for blood draws and IV fluids or to fine-tune dialysis fluid and electrolyte removal and replacement that we use to decide that our treatment should become palliative and comfort care rather than high-tech interventions: are we doing more harm to the body - cell and organ damage - than good?
In the case of Emilio, the prolonged invasive treatments in response to events that would have led to his "natural" death were only done because his mother and lawyers demanded it and made legal threats. He was kept alive by repeated painful invasions without medical evidence that they aided healing or provided comfort.
This from a SHS reader from Spain: "I live in Spain, am a Mathematician by education and have literally come accross your blog when surfing the net (which I do not do that much). I certainly
agree with most of what you say and thank you for your effort,work and diligence in defending and promoting human life from
natural start to natural end. Apologies for my English mistakes.
I have a doubt regarding your "ire" at your "not-so-divine-
intervention" article, which I have just read. I **do not want
to polemize** and (obviously) **I do not know the Texas issue and the Bishops' intervention** like you. In any case: I would conclude from your reasoning that the sick person (or, in grave cases his family/chosen representative) would have the right to claim (as something due to him) a treatment **even though a doctor (I mean an honest one) may deem it as "futile"**?
Whence the question arises (in me): does the doctor have a
right to deny a treatment based on conscience troubles? Of course, the questions are theoretical, but I think **probably** the Bishops might have been thinking of that when they referred to the sick patient's family's emotions...
But I repeat: I am not polemizing and just wanted to state
my doubts which arose from your reasoning. And I repeat that
you know the circumstances much better than me...
Yours,
Pedro.
NB: (It seems obvious that I am a Catholic, but do not think
I am trying to tell you "hey, keep the Bishops quiet": we all
do good and wrong. I am trying to discuss a point "objectively")"
I acknowledge that my analogies were poor, but the question remains:
Can't you recognize the difference between an elective procedure (abortion) and life-sustaining medical treatment?
You refuse to perform abortions because the action of abortion kills people- and yet you vigorously fight for the right to refuse to perform other medical procedures where by your inaction kills people.
You say:
The new law would have increased protection for patients, prevented the removal of artificial hydration and nutrition, and more than doubled the time that doctors had to give medical treatment that they and others deemed "inappropriate." It would have also added funding for facilities that offered complex medical treatments, such as dialysis for comatose patients, which simply don't exist in Texas.
Funny- kidney dialysis is listed explicitly in the bill as "life-sustaining" treatment that can be legally removed. I recognize that you're a doctor and not a policy analyst (I'm finding irresistable not to quote Star Trek, "Dammit, Jim, I'm a doctor, not a policy analyst!"), but extending the time here is complicit, as you very well are, with allowing doctors to refuse to care for patients, but only after 21 days has passed. That makes you gleeful, because your right to refuse care to people apparently trumps their right to live. It would have more than "doubled the time" (as if 21 days is near enough with the elitist buddy system the hospitals in this state have enacted). We already are forced to transfer people to the midwest. You can shove that 21 days- it's only through restraining orders and continuances do we arrange transfers, and frankly, you have no more of a right to kill me via neglect on the 22 day as you did on the 11th, or the 1000th, ad nauseum. You do not have the right to hasten my death to coddle your conscience.
Your solution is not reform. Unfortunately, it looks like reform to the untrained eye, which would jeopardize our ability to attempt for real reform next session. The legislature would falsely believe, as would all the minions that so dutifully called their legislators at Texas Alliance's behest, that futile care has been reformed. And yet, the poor, huddled masses that lack the resources to fight, will be killed on day 22 versus day 11. By the way, I love that it's calendar days versus business days-Nice touch! Your law offers no protections, only a miniscule extention of time which is too short to amount to a reprieve anyway.
Those lucky ones that fall within the very narrow specs that are protected from starvation and dehydration will then be subject to any other convienent efforts to off them- for example, denying an antibiotic when he/she becomes ill. I say "very narrow specs" because the section allows a lot of latitude- essentially, if the doctors that want to kill the patient believe that food and water via a tube are damaging- much like a "health" exemption in abortion legislation is used by doctors to mean anything they want to procure the abortion.
Has it not aroused your suspicions that so many, a majority it seems, of these patients that have futility proceedings against them are historically oppressed? I look at these case studies and I find immigrants, hispanics, blacks, and the poor? Does it not seem strange to you that mostly people that are too poor to pay for medical care have treatments that are "medically futile?"
Jaque, one thing I do see is your repetition of "the doctors that want to kill the patient." You couldn't be more wrong. There are the nurses like Genene Jones and the Jack Kavorkians, but most of us are in medicine to fight death and disease, along with the suffering that goes along with it.
Where are the doctors who are not part of the "elitist buddy system"?
For that matter, what makes you trust doctors to order the right IV's, ventilator settings or dialysis filtration, if you're sure that "the doctors that want to kill the patient"?
As I've said many times, when medical treatments cause cell death and body organ system damage without a hope of healing, patients will die no matter what we do. There has to be a point when the patient's body is allowed to succumb, and the rest of us stop interfering. The Lord's way includes "a time to live, a time to die."
Speaking of time, a very pro-life lawyer told me that the wording was more specific and offered more protection - I was one of the ones who argued that between Christmas and New Year's, the hospital system nearly shuts down.
Jacque, none of this makes me "gleeful."
What I see is an attempt to go beyond the normal limits of restraints on liberty by forcing doctors to do repetitive actions that we and an ethics committee agree are wrong.
10 seconds, much less a month, is too long to do wrong, but my fellow doctors and nurses are aware of our limits and of human nature, and that makes us willing to give patients a trial of therapy, a test of time. We are even willing to work with families who selfishly insist on repeat resuscitation of their loved one, when the medical evidence is that their loved one's body is disorganized to the point that it is dying, no matter how many machines or medicines we use.
Medicine is now able to keep blood circulating and oxygenated and to manage some of the poisons that build up as the kidneys and liver fail, while cells and organ systems continue to die because of disease, infection and trauma.
There is no ethical difference between maintaining dialysis or ventilation and adding an external circulation and oxygenation assistance. Why not put Andrea Clark on heart and lung bypass, as well as dialysis? Someone, somewhere could have kept Emilio alive a few more days using ECHMO - why not?
On the other hand, there is a huge ethical difference between these procedures and oral feeding or an intentional act to kill.
In the long run, you argue that a patient has a "right" to continued technological intervention while the nerve cells fire inappropriately and more cells dissolve. However, you do do not have the right to force any individual to break the skin of a dying patient with needles and scalpels, to insert tubes into his bladder and bowel, turn up the ventilator pressure or any of the other ways that we cause pain in the ICU.
As long as you gave in to your impulse to quote Dr. McCoy, may I remind you of the tale, "The Monkey's Paw"?
Perhaps some more modern Science Fiction would be more appropriate. After all, we can keep tissue cultures alive much longer than we can maintain circulation and ventilation. Perhaps someday, we will be able to regenerate an entire person from a few cells. Are we in fact killing everyone we refuse to preserve with the technology that we have available to us?
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