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May 03, 2007
Futile Care in Texas
In 1999, then-Governor George Bush of Texas signed a bill that enshrined what is called "futile care" policy into Texas law. The idea is that hospitals have the right to stop patient treatment if their ethics committee determine it is futile, even if the family of a patient disagrees. Wesley Smith takes up the story:
Eventually a compromise was worked out, giving families ten days to find an alternative institution to provide care once a hospital ethics committee ruled that treatment for a patient should be terminated. Governor George W. Bush eventually signed the bill into law in 1999 after right to life groups agreed to the compromise, never dreaming that patient transfers would become almost impossible to secure.
That is where matters sat for several years until a few Texas hospitals recently began exercising their prerogatives under the law. Finding it impossible to obtain transfers within the allotted time, affected families resisted, unwilling to meekly submit to the value judgments of ethics committees and doctors that their loved ones’ lives were no longer worth sustaining. For example, the family of Andrea Clark mounted a very public — and ultimately successful — campaign against an attempted futility imposition by St. Luke’s Hospital in Houston. Currently, another futile care controversy is raging in Austin, where the mother of the terminally ill “Baby Emilio” Gonzales has obtained a temporary restraining order preventing the Children’s Hospital of Austin from unilaterally cutting off his life-sustaining treatment.
In response to these and other controversial public cases, legislation was introduced in the Texas Legislature (SB. 439 / HB. 1094) to eradicate the ten-day rule; it would institute instead policies enacted in eleven other states that require hospitals, in futile-care cases, to continue wanted life-sustaining treatment until a transfer can be effected. The bills looked as if they would quickly be passed — that is, until the Texas Catholic Conference unexpectedly came out in support of Futile Care Theory.
Testifying on behalf of an alternative bill (HB. 3474) that would extend the ten-day limit to 21 days — while at the same time permitting hospitals to refuse to provide new levels of treatment that might be required during the waiting period — Bishop Gregory Aymond of the Diocese of Austin, speaking on behalf of all Texas bishops, declared that hospitals, rather than patients/families, should have the ultimate say over whether a patient’s life is maintained:We believe, and the tradition of our Church has always taught, that a person should be allowed to die with dignity and have a peaceful death. We believe that that is in conformity to God’s will and that God is the one who chooses life and death. It is the teaching of the Church that we should not interfere with that. We also realize that sometimes families, through no fault of their own, are really not able to make those decisions because of their involvement, because of the emotions.
In other words, according to the Texas bishops, even if the patient had appointed a surrogate in an medical directive who instructs that the patient’s life be maintained; even if family members, acting on their intimate understanding of the patient’s values and desires, want treatment continued — Bishop Aymond, sounding very much like utilitarian secular bioethicists who usually promote Futile Care Theory, sniffs that they can’t be trusted to make the right decision due to “emotions.”
People in Texas whom I have talked to about this revolting development suspect that the bishops are hearkening to the desires of the Texas Catholic Health Association, which represents Catholic hospitals. This wouldn’t be surprising, given that some Catholic hospitals have a history of backing Futile Care Theory.snip
Near the end of his testimony, Bishop Aymond quoted the 1995 encyclical The Gospel of Life, in which John Paul II stated that in situations “when death is clearly imminent and inevitable, one can certainly in conscience refuse forms of treatment that would only secure precarious prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.” But surely, John Paul II was referring to the right under Catholic moral teaching of patients and families to choose to forgo treatment — not the right of hospital ethics committee to impose such decisions upon the unwilling.
If patient autonomy is to retain any real meaning; if we are to prevent subjective and invidious quality-of-life value judgments from being imposed upon the sickest and most vulnerable among us — it is crucial that the Texas legislature kill the futile-care law’s 10-day rule once and for all. Unfortunately, the Texas bishops and Catholic Conference are impeding the success of this important work. In so doing, they are opening the door to the imposition of medical discrimination against those judged by strangers on ethics committees to have lives not worth living. Somehow, I don’t think this is what John Paul II had in mind
The website of the Texas Catholic Conference
I know we have lots of Texas readers, including one who is a physician in Austin - add your two cents, please, and help us understand what is going on here.
Posted by Amy Welborn | Permalink
Comments
Bishop Aymond's actions and presentation of the matter seem to presuppose some provision in Catholic Doctrine on proportionate and disproportionate means that makes provision for the introduction of institutions such as "committees" comprised of hospital administrators as decision making parties in such cases.
Indeed Iura et Bona observes the decision belongs with the patient, or his proxies alone: "It is also permitted, with the patient's consent, to interrupt these means, where the results fall short of expectations. But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient's family, as also of the advice of the doctors who are specially competent in the matter."
Bishop Aymond defers to the Pediatric Ethics Committee of Children's Hospital of Austin, yet of the 19 members who make up the Pediatric Ethics Committee, 13 work for Seton. But none of the physicians who care for Emilio are on the committee.
Clearly any "cost/benefit" analysis of such a committee runs the danger of violating the principle set down by John Paul II "First of all, no evaluation of costs can outweigh the value of the fundamental good which we are trying to protect, that of human life."
The determination of what is "proportionate" that DOCTORS are enlisted to assist in, is a very particular, narrow one--whether therapies are proportionate to the extending of the life of this particular patient. If the question is whether a ventilator will do that, that seems a pretty clinical matter.
As Catholic Philosopher Prof. Joseph Graham describes the situation thusly: "“Baby Emilio is not dying in any immediate sense. He will continue to live if he is kept on the ventilator. It is the constant teaching of the Catholic Church that parent[s] have primary responsibility for the welfare of their children – not hospital administrators.”"
Posted by: al at May 3, 2007 8:38:18 AM
Though I should say that the original Futile Care provision, and especially the motives that attended its creation, do not look to be the culprit in this case. Note the Texas Right to Life's Committee's explanation of the genesis of the law:
http://www.dakotavoice.com/200704/R/20070426_EG.html
Note the estimable Prof. Graham's original involvement in no way impairs his ability to properly describe the moral questions involved in this case, which seem pretty clear.
Posted by: al at May 3, 2007 9:06:04 AM
Just another example of our bishops washing their hands.
Posted by: Tim at May 3, 2007 9:18:59 AM
I can't believe that the bishops don't see that since most hospitals are for profit they have a gigantic conflict-of-interest concerning the care of these patients. With an aging population, the health care squeeze is going to increase exponentially in the future -- so the idea that someone constantly looking at the bottom line is going to have the best interests of the patient in mind is ludicrous. I hope I'm not cynical enough yet to believe this: "People in Texas whom I have talked to about this revolting development suspect that the bishops are hearkening to the desires of the Texas Catholic Health Association, which represents Catholic hospitals. This wouldn’t be surprising, given that some Catholic hospitals have a history of backing Futile Care Theory."
Posted by: TSO at May 3, 2007 9:26:47 AM
This is a hard one, but I think that there must be some limit. Forcing the hospital to sustain a terminal child indefinitely is a kind of theft of life giving resources. I'm a parent and I'm certain I would be very strongly tempted to make unreasonable demands to extend the life of my child as long as humanly possible. Yet in doing so I might be denying someone care who could be helped or straining a hospital financially. Try to view the hospital charitably, no hospital can give unlimited care and continue to function. To demand resources (in this case medical care) from the unwilling (the overburdened hospital) is unjust, understandable certainly, but unjust.
Posted by: Memphis Aggie at May 3, 2007 9:33:59 AM
Does anyone happen to know who appointed the bishops of Texas?
Anyone?
Posted by: BillyHW at May 3, 2007 10:05:20 AM
Another point is this ( and I am speaking as an oncologist here in Austin): physicians also have a right, the right to refuse treatment that is futile or which we know will harm the patient. For example, I may have a patient with far-advanced cancer for which there is no treatment that I know will be successful at providing palliation or prolongation of life, much less cure. So, what if that patient demands that I give him chemotherapy even though I know that it will do him more harm than good? Should I be required to by law?
Second, I know Bishop Aymond to be a solidly orthodox, deeply spiritual shepherd for our diocese and he is a "JPII bishop" if you know what I mean- don't second guess him on this.
Posted by: thomas tucker at May 3, 2007 10:24:51 AM
Well, so much for that oath thingy that doctors make!
Posted by: John Kasaian at May 3, 2007 10:33:15 AM
You need to handle the case where families do demand unreasonable treatment based on false hope. I had one child born with a severe genetic problem that gave her no chance to survive to adulthood and onlt a remote chance of surviving her first year. There was a chance she would need heart surgury right after birth. The hospital said, "I doubt you will find a surgeon willing to operate on her with that prognosis". As a father that seemed wrong to take that choice away from me. I likely would have elected not to have that surgury done anyway but I felt pushed. Still why should a doctor be forced to do it? There are very few neonatal heart surgeons in our city so if you give the doctors a choice you will run into many cases where all the doctors choose not to do it. Is that OK?
Posted by: Randy at May 3, 2007 10:52:23 AM
RE: Second, I know Bishop Aymond to be a solidly orthodox, deeply spiritual shepherd for our diocese and he is a "JPII bishop" if you know what I mean- don't second guess him on this.
My comment was reckless; Amy did (after all) ask for Texas readers specifically to comment. Thanks for the info concerning the bishop. I take back my comment.
Posted by: TSO at May 3, 2007 10:55:51 AM
John,
What do you mean by your statement? Doctors never take an oath to provide futile treatment.
Posted by: Mary Russell at May 3, 2007 11:10:00 AM
Interesting how it's all about the sacred choice of the woman alone and her conscience when abortion is concerned, but when it comes to keeping someone alive, well then, families and loved ones be darned: then it's all about the choices of the hospital and the doctors.
That said (rather cynically, mea maxima culpa), Mr. Tucker has a pair of good points here.
Posted by: Irenaeus of Lyons at May 3, 2007 11:11:13 AM
Dr. Tucker, I, unfortunately, know this disease quite intimately, in fact probably quite a bit better than most oncologists do.
The bishop is right about ordinary care and extraordinary care and futile care in regard to church teaching. But I would like to know where in church teaching he finds the idea that hospital ethics committees get to decide over patients and parents. I'd like to know where you find that, too.
Because, you see, I've sat in that hospital room when the doctor closes the door and starts to talk about "quality of life" and "how far do you want to go with this." I have watched the doctor - at that Catholic hospital - half sneer, "Is this a religious thing?" because you say there are some right and wrong answers in end-of-life issues. This was no backwoods place but a world-famous facility. And when they find out you're one of those, they refer you to the ethics committee. Now, why ever would I be suspicious of that?
I know all about that, Dr. Tucker. I know that I wasn't a scared single mom but well-educated, knowledgeable pro-life Catholic, and I was suddenly confused and in need of some independent, trustworthy advice, because it was very obvious that, even should we reach the same conclusion, they would not reach it for anything resembling the reasons I did.
I also know that a couple of days later, my daughter with this very unpredictable and mysterious disease took a turn for the better, and I know the look on those doctor's faces and she left the ICU and the hospital and came home with me.
This law is an invitation for the Culture of Death to browbeat families - people already emotionally strained and confused - into offing their loved ones for the sake of a hospital.
I have not yet come to the stage in my daughter's life that this mother in Texas has reached with her son. I don't know what I would do in her shoes. But I sure know who I DON'T want making the decision.
Even JPII bishops make mistakes. Your "don't question the doctors or the bishop" routine is EXACTLY why this law stinks to high heaven.
Posted by: anonymous at May 3, 2007 11:20:11 AM
There has been far too much confusion surrounding the Church's teaching on end-of-life issues.
There are two issues at stake. First, when is it licit to withdraw treatments. Second, who gets to make the call?
On both counts, the Texas bishops are on sound ground. As the Declaration on Euthanasia stated: "One cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide [or euthanasia]; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected." This reflects a very old tradition, worked out in detail by 16th century moralists like Domingo Bañez and Francisco de Vitoria. In modern times, and in modern medical circumstances, Catholics moralists have arrived at similar conclusions. Gerald Kelly concluded in the 1950s that no one is obliged to use any means - natural or artificial - if it does not offer a reasonable hope of success in overcoming the patient's condition.
What about the second question. This is where it gets interesting. The Catechism states quite clearly that "the decisions should be made by the patient if he is competent and able."
Remember the case of Piergiorgio Welby in Italy, a man who was paralyzed and kept alive by a ventilator for nine years? (Note that discontinuing a ventilator can be perfectly licit by the above criteria). The issue was that Italian law does not permit the denial of lifesaving care even though the patient can refuse treatment, and this provoked the controversy. Sadly, the Church in Italy failed in its duty to give clear guidelines. Cardinal Javier Lozano Barragan, president of the Pontifical Council for Health Care Ministry, and Bishop Elio Sgreccia, president of the Pontifical Academy for Life, claimed that the doctor, not the patient, is best placed to make the call. They opposed Welby's decision to withdraw treatment. In other words, those opposed to Welby used similar logic as the Texas bishops supporting the ability of hospitals to stop treatment. Confused, yet? It gets more complicated! Again on the Welby case, Cardinal Carlo Maria Martini entered the fray and argued that is generally up to the patient to decide whether the treatment is disproportionate or not. So that makes the Texas bishops wrong...right???
This whole thing is terribly confusing, and the church needs to do some serious thinking about end of life issues in the context of modern medical technology. Personally, I find it a little distasteful that hospitals can make these decisions simply for financial reasons, as the poor will suffer disproportionately. At the same time, we need to move away from the "cling to life at all costs" mentality that seemed to reflect the thinking of many during there Schiavi period. Remember, at his end, servant of God John Paul refused to be hooked up to a respirator and IV tube. He knew his time to meet God had arrived.
I've written on the Welby case here: http://reasons-and-opinions.blogspot.com/2007/01/when-is-euthanasia-not-euthanasia.html
Posted by: Morning's Minion at May 3, 2007 11:26:28 AM
As someone who admires bishop Gregory, I'd rather see all of his statement. At face value, he is right, but the reality is more complicated. If one checks out his full statement at http://www.txcatholic.org/bishop-aymond-on-end-of-life-issues.html, one will agree that it seems that Emilio's case is involving extraordinary means.
Baby Emilio was firstly denied care at a CATHOLIC hospital. I don't know the make up of its ethics committee, but as many Catholic institutions I'd guess that the hospital could not do without non-Catholic doctors and the probability that an orthodox practicing Catholic is among them is small. Which begs the question about the moral standards that it follows, even though Seton is a Catholic hospital.
As a matter of fact, would someone realize that Seton is a Catholic hospital by checking out http://www.seton.net/about_seton ? If that tells us about its Catholic identity from the street, what about its Catholic identity behind closed doors?
To Seton's credit, when it started administrating the local county hospital, it stopped performing abortions. Twhen the city decided to segregate a wing of the hospital for such purposes under a different administration. Therefore, Seton was not involved in the murder of unborn children.
But because we cannot second-guess such committees with so little invested in a person, only one's family can be left to decide. Therefore, this law, even if given the benefit of the doubt, is impractical to guarantee that a true moral standard is applied. This law should be struck down and the decision is better left to the family.
Posted by: Augustine at May 3, 2007 11:59:29 AM
Archbishop Gomez of San Antonio has written a pamphlet called "A Will to Live: Clear Answers on End-of-Life Issues" as part of the Shepherd's Voice series. I haven't had a chance to read it and couldn't find it online, but maybe one of you has?
Posted by: Glen at May 3, 2007 12:07:33 PM
Well said Mornings Minion.
On one hand hospitals may callously deny care for minor reasons ($). On the other hand patients may vainly, desperately hold on to life at all costs. Both the patient and the hospital have the potential to over reach. We cannot confidently define when a treatment is truly futile in every case. So if we are reasoning in area of uncertainty we can look to the consequences of each error. If one person gets excessive care and a hospital is financially overburdened by a small amount, the harm is minimal when compared to the loss of life guaranteed by the refusal of treatment. On the other hand, if the excesses are frequent and commonplace then the hospital that is forced to render extraordinary care will collapse or at least restrict other care. Presumably many will then suffer needlessly. Choosing where to draw the line is not an easy call, guidance from the Church would be helpful here.
Posted by: Memphis Aggie at May 3, 2007 12:14:14 PM
I understand the natural tendency to think the hospital should absorb the cost of futile care if the family wishes. We think that because this appears to us as a life vs dollar issue - but it's not so clear. If a hospital struggles financially it hires fewer nurses, buys fewer MRI machines, offers fewer surgeries etc. These differences (especially in the number of nurses) may results in the poorer care and deaths of other patients whose care was not futile. The difference between a treatable cancer and not can be early detection by an MRI that less expensive machines may miss. Hospitals that are forced to spend dollars treating those that will die even with the extra treatment (although only God knows for certain) will have to cut care elsewhere. Hospital committees may see these effects when we do not. I understand the impulse to assume that money drives their thinking, but let's not jump to conclusions.
Posted by: Memphis Aggie at May 3, 2007 12:36:21 PM
In 1960 my Catholic HS homeroom teacher was hospitalized and turned out her kidneys were failing. My father, a very Catholic internist, sat me down to explain that her order had decided that she would not get the then-very-expensive treatment that would have kept her alive but bed-ridden. The order would have been bankrupted or at least had to severely restrict its mission.
She died a few months later.
When did financial considerations become a no-so? For the patient's family as well as the hospital or medical providers?
Posted by: Julia at May 3, 2007 1:20:33 PM
Julia,
Officially, cost is still a factor in determining whether a treatment is proportionate:
Asserting that a particular hospital or the larger community has the obligation to provide any life-sustaining treatment demanded by a patient or caregiver, regardless of cost or burden is, well, absurd.
Posted by: Rick at May 3, 2007 2:10:13 PM
There's a real problem when Catholics lead the way in line-drawing on medical ethics. Even if Catholic hospitals draw the right line, their position will be dubbed extreme and secular hospitals will fall in line accordingly. So if the Catholic hospital says that a hospital's "ethics" committee can make the call to snuff you if your case is deemed futile by the eminent "ethicists" on that panel of boobs, a secular hospital will determine that a candy striper can club you if you suffer from a prolonged cough and are taking up a profitable bed.
It might be that family members are not in the best position to make the call, but there is no question that the members of your average "ethics" committee are completely unqualified to make these decisions. Medical ethics is consequentialist. Until doctors relearn ethics, allowing them to make these decisions is irresponsible in the extreme. So you let families make the decision, hope they travel outside of Texas to receive good advice from a priest, and absorb the extra costs. I find it very odd that the Texas bishops think it's just spiffy that the state absorb the monumental cost of illegals, but balk at the thought of an extra couple weeks on a respirator for vunerable persons.
And could the most callous utilitarian make this call in the short span of 10 days (other than a doctor trained to be the most efficient of utilitarians)? This together with tort reform should make Texas doctors some of the deadliest in the nation.
Posted by: Loudon is a Fool at May 3, 2007 2:32:48 PM
My cards on the table:
- I live in Oregon, where assisted suicide is legal and touted as a "human right". The state has absorbed Medicaid into a system that routinely rations health care, with treatments ranked according to their "effectiveness", and thus regulates their availability.
- My older brother has a chronic mental illness (schizophrenia) from which he suffers a great deal. He is not in an institution; he is on Social Security disability and is managed by outpatient psychiatric care, lots of attention from our family, and medications... barely.
Currently, the Oregon Department of Human Services ranks the "medical procedure" of assisted suicide (as part of "comfort care") higher than providing psychiatric medications as part of community mental health care.
This means that the Oregon Health Plan will sooner pay for an overdose of pentobarbital for him than some Prozac to keep him functioning. Not to mention the fact that the state and major counties have been hacking away at mental health care programs for a decade, and the Oregon State Hospital (our largest inpatient mental health care facility) is under investigation by the US Dept. of Justice for gross negligence in providing care.
My point is this: In the midst of our conversation about Church teaching and struggling with its implications and applications, we can't ignore the context in which this cultural discussion is taking place. The Culture of Death is real, my friends, and handicapped, suffering people are hard to deal with. By all means, let's accept natural death from the hand of our merciful God, but in our discussions, we've got to get at those ethics committees' assumptions behind "futile" care, "burdensome" treatment, and "proportionality".
Posted by: Kathleen Lundquist at May 3, 2007 2:47:13 PM
Since when is a respirator futile treatment?
Its not supposed to cure Leigh's Disease anyway, it looks like the "problem" with the treatment is that it is working--keeping him alive--rather than not.
Is there really a shortage of respirators around? Is it the hospital that expends the resources or the insurance company?
As much as I like football, I think I'd rather keep a baby alive than free up those insurance company resources for sponsoring bowl games.
Also, if the very guy--Prof. Graham, who brought the futile treatment law to President Bush's attention doesn't believe this is "futile", and points out--I quoted him above--that the respirator is working.
Finally, does the mother forfeit her rights simply because she's too "emotional", as the Bishop opines? What makes her too "emotional"? Coming to a different conclusion than an ethics committee? At what point can we be decided to be too "emotional" about our own lives, no longer to be consulted about taking them?
Posted by: al at May 3, 2007 2:48:52 PM
Loudon is a fool,
You make some good points here. (Particularly on the tort reform; as a Texas resident I found it odd to be voting in favor of lawyers, but figured that even if you decide that both doctors and lawyers are in general greedy, self-interested, and unethical, only the doctors can kill you.)
That said, though, I've been reading a little about this particular case, and it's a bit hard to say what should or shouldn't be done. The mother is demanding surgery to open a hole in the boy's throat which would theoretically make it possible for him to get off of the ventilator, a prerequisite for his acceptance by a long term care facility. But the doctors have said that Emilio's lungs are too weak to allow him to breath on his own and that he won't survive except in the ICU of a hospital. Meanwhile the mother yells at the doctors and nurses, calling them 'murderers' and generally being difficult, so much so that some ICU nurses are begging not to be assigned to work with her.
I do have compassion for her situation. I have compassion for Emilio, too, and for some of the doctors who genuinely believe that he is suffering disproportionate pain as a direct consequence of being hooked up to a ventilator.
I don't really think the hospital has much choice at this point but to continue to provide the ventilator for as long as Emilio needs it--but they must be worried about setting this kind of precedent.
Posted by: Red Cardigan at May 3, 2007 2:57:32 PM
First off, Mornings Minion and Memphis Aggie, the intent of the original law was to support insurance companies. I don't remember all the details, but I think the healthcare providers/hospitals got into the lobbying effort well after the insurance companies kicked this off. The whole thing revolved around money - there was absolutely no worry for the patient or their family in the macro-discussions of this. There may have been for some individuals, but in the larger scheme it was all about cold, hard cash.
I wrote to my state legislators when the Andrea Clark story first broke. I only got one response - Florence Shapiro from Plano wrote back (two months later). She said she was working against the law at the time, but obviously that got shot down when the bishops conference got involved. There was, at that time, enough political will in the legislature to end this law.
Ya know, there's one thing in this that seems to have been missed. I don't argue the Church's teaching on end of life issues. I don't argue JPII's point. But I don't like the idea of this being codified into law. That's what stinks about this more than anything else.
Posted by: Mark Windsor at May 3, 2007 2:57:56 PM



















