More on Texas Bishops' Embrace of Futile Care Theory
I consider the Texas fight over Futile Care Theory to be one of the most important bioethical matters of the year. This is why I was so profoundly disappointed when the Texas Catholic Bishops and the Texas Catholic Conference supported a modified version of futile care, and opposed the legislation to do away with the pernicious 10-day rule.
I write at some length about this in NRO, just out. Here is my conclusion:
What would drive administrators and ethicists at some Catholic hospitals to support Futile Care Theory? No doubt, partly a sincere desire to alleviate the suffering of the most ill and profoundly disabled patients. But social justice--the polite term for the money imperative-- also cannot be left out of the equation. The care provided to patients involved in futility disputes is the most expensive. Boiled down to its essence, Futile Care Theory is a form of ad hoc health-care rationing that is at least partly designed to address the problem of tight resources in an era of managed care and HMOs. As the Ethics Committee of the Society of Critical Care Medicine said in a Consensus Statement back in 1997 supporting medical futility, "Given finite resources, institutional providers should define what constitutes inadvisable treatment and determine when such treatment will not be sustained"--which is precisely what the Texas law permits, and is now supported explicitly by the Texas bishops.I consider the Texas Futile Care fight to be of profound import, not only to Texas, but to the nation, and indeed, the world since this is a matter of growing urgency. It is in this context that the (in my view) abdication by Texas Catholic Conference is particularly unconscionable. Let us hope that right prevails.
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.
Labels: Futile Care Theory. Texas.
posted by Wesley J. Smith @ 8:39 PM
23 Comments
23 Comments:
Wesley, you're putting words in the mouths of the 24 Bishops of Texas by saying the issue is funding - especially in the case of Emilio and last year's case of Andrea Clark - the funding is available.
It's not "quality of life" that doctors are determining. It's the medical determination of medical benefit over cost.
The policy of "treat until transfer" bill will force doctors to keep patients' bodies alive through unlimited technological intervention, even after they have begun dying: when more cells are dying and more organs are malfunctioning than our medical science will allow us to treat or even to comfort.
I'm afraid that every patient will soon have his own guardian ad litum - then patients' families won't be making decisions.
I said basically, that is my suspicion. And it is. Money is the bottom line of what medical futility is really all about--at least at the macro level.
Patient autonomy is not the first principle of medicine - non maleficence guiding beneficence over-rides autonomy. "Heal when possible, but first, do no harm."
My answer got long and involved - I've expanded at my blog.
I have abridged this comment from a reader to protect privacy:
"I just read “A Not-So-Divine Intervention.” Excellent article – right on point.
I’m a member of Texas Attorneys for Advance Directives (you may know Jerri Ward, also a member). We help patients and families struggle against Texas’ Advance Directives Act, and work to change the statute...One of my clients – [name withheld] – is still alive nearly a year after his 10 days would have expired but for a TRO. We got him transferred, but it took longer than 10 days."
That is an important point. Some of these patients are not on the verge of dying. Thanks for writing.
As I wrote elsewhere, the Coalition agreed months ago to expand all the timelines. The current consensus is 7 days notice for the Ethics hearing and 21 for the transfer.
Unfortunately, if there is not a good bill - and maybe if there is - all of these cases will end up in court, where a guardian ad litum will become the surrogate and the judge will make her/his decision for everyone.
Then do away with the ten day rule and there will be no need for courts, barring the extreme cases I have mentioned. As to your consensus, not among folk I hang out with. They are full speed ahead to destroy the 10-day rule, not make it a 21-day rule.
Yesterday, the Senate Health and Human Services Committee passed a substitute for SB 439, the treat until transfer bill, that mirrors Representative Delisi's current version of the amendments to the Texas Advance Directive Act: 7 days to Ethics Committee, 21 days to withdrawal of care.
It is not true that 21 days is the consensus of the Texas Advance Directives Coaltion. My group, Texas Attorney's for Advance Directives does not support the 21 day bill and we are on the Coalition. Texas Right to Life does not support 21 days. Both organizations support treatment pending transfer. The disability rights groups on the Coalition do not support 21 days. They too support treatment pending transfer.
The Coalition came to NO consensus.
In fact, the ONLY pro-life group supporting the 21 day bill instead of treatment pending transfer is the one that Life-ethics is involved in--Alliance for Life.
If it passes, the lawyers will still be involved. What the legislators spearheading the 21 day bill fail to understand is that it still has the due process weaknesses inherent in the present law.
The number of lawyers learning about this law and seeing these weaknesses is growing. The few lawyers who have handled these cases in the past are no longer alone.
I have an interesting thought. If they have to treat pending transfer, might the hospitals not get more cooperative about transfer? It seems to me that part of the problem here is a kind of tacit agreement among the hospitals not to transfer. So the idea is, "Hey, we can wait out the 10 days or the 21 days or whatever and then carry out what we think is the rational thing to do, because all of us hospitals have more or less agreed together not to accept transfers." For example, if you know you're going to have to keep Emilio until he can be transferred, might not that provide an incentive to provide the trach so he can be transferred?
Just a thought on the whole perverse incentive kind of issue.
I think so, Lydia.
Jerri Lynn, you forgot that the Catholic Hospital Association and the Bishops of Texas - each of whom consider themselves prolife - support the new version.
And I did mis-write: there was no consensus among the Coalition. The agreement between those working with Representative Delisi to fine-tune the language was to expand the time lines.
Nevertheless, Senator Duell has submitted legislation identical to Representative Delisi's bill. There is no longer a Senate version of treat until transfer.
Lydia, a tracheostomy is still medically contraindicated if a patient is unstable and/or requires high ventilator pressures.
Emilio is not unstable and does not require high ventilator pressures. He is at 30%.
A noted pulmonologist from Houston testified on Tuesday that Emilio is a candidate for the trach and that his reading of the chart convinces him that the intensivists caring for Emilio have put themselves in a situation where they feel that they will lose face if they back away from the line in the sand they have drawn on the trach issue.
He also said that he would recommend it for a patient even if he had only a few weeks to live because a trach is a more stable airway and more comfortable for the patient.
Jerri, the oxygen concentration is different from the pressure and the positive end expiratory pressures. Those would be measured in millimeters of mercury or pounds per square inch, not percentages.
My understanding is that the pressure is not high, but I will have to check the measurement. I hardly think that a pulmonologist who heads a department in charge of lung transplants would overlook that element in his assessment that Emilio is a candidate for a trach.
I'm concerned that he didn't confirm that when Emilio was unstable, he wasn't a candidate.
However, if the pressures are near-normal, I'd ask the docs if Emilio is stable as far as respiratory status goes. If so, ask what is standing in the way of a trach?
The problem may still be finding a specialist willing to sign on. Perhaps your pulmonologist could get temp privileges at the hospital.
Or do you have to get the guardian ad litem to request treatment, now?
He said that the instability during those very few days could be controlled by the ventilator settings. That's exactly what happened. He stabilized.
He would have done those things before running off to the ethics committee to terminate life support.
I am a hospital-based pediatric physician and have experienced many situations over 25+ years that put a dagger in your argument that parental autonomy should always trump the position of the physicians involved and the carefully considered conclusions and recommendations of an independent, multidisciplinary ethics committee.
I will share some of them with you:
1.A father asked that support be withdrawn in the case of his 8 month old infant who presented in shock, coma and soon developed multi-system failure. He eventually developed kidney failure. Family was reticent to consent to dialysis if he was "just going to turn out to be a vegetable." The physicians were not comfortable with this and pressed for the dialysis. The family’s argument remained the same. Consent was obtained with some difficulty and dialysis was started, which turned things around, saving the baby's life. The final diagnosis was intentional poisoning with ethylene glycol (antifreeze). The father received (only) a 40 year prison sentence. The baby had a normal outcome.
2. A mother wanted to give alternative medicine therapy to her child who had a form of leukemia with a 95% long term cure. While this was being negotiated with the attending physician, the mother took the child out AMA (against medical advice) and went to Mexico to get Laetrile therapy (a peach/apricot pit extract which is poisonous.)The child had a leukemic crisis, almost died before being found and returned to the US to receive appropriate therapy, which resulted in a cure.
3. A 3-4 year old boy of an Asian family had refractory seizures due to meningitis requiring therapeutic drug coma. A number of attempts to bring him out of the coma led to recurrence of seizures. It appeared that the boy would be left with significant brain damage. The family asked, then demanded that care be withdrawn. The physician staff resisted, and recommended that more time be given. The father relented, and eventually the child went home with a hemiparesis and occasional recurrent mild seizures. The child received poor followup, was neglected and eventually went into foster care. It was then revealed that this child was the male heir and, in the fanily's culture/custom, "had to be perfect" according to the family. The child received rehab and was able to go to school with his friends.
4. A robust and precocious (in terms of development) 11 month old girl had a cardiac arrest out of the blue and suffered severe brain damage. The biologic father, a minister in training who did not live with the mother, asked a number of times early on in the course whether it could be determined by autopsy whether the child was smothered. His influence on the mother contributed to a conflict with the physicians regarding end of life decisions. The baby met all criteria for brain death except for respiratory effort which appeared after 5 minutes (!!!) off the ventilator. The physician staff and ethics committee recommended that ICU life support be withdrawn. The family refused. The baby received a trach and Gtube eventually and went home on a ventilator. There was other evidence of foul play, but not enough for arrest/indictment.
You get the picture. In my professional life I have experienced only one situation similar to the Emilio case in Texas. I attribute this to the skills, compassion, and communication abilities of my colleagues and I, and to the love and compassion of the parents making those difficult decisions.
I have experienced many other situations similar to those described above in which the family's wishes were resisted, sometimes with involvement of Child Protective Services. I have experienced countless other situations where the family/parents could not begin to focus or appreciate the plight of their own child because of factors such as mental illness, guilt over the circumstances of the injury or illness, conflict between estranged parents, cognitive limitations of decision-makers, etc. I have seen many cases in which parental decisions were definitely not in the child’s best interest, and instead would have harmed the child, limiting his/her future potential.
Compassionate staff in children's hospitals are tremendously skilled at helping families arrive at end of life decisions. I have established the practice of meeting with families weeks after the decision is made to withdraw life support. I always ask how families feel about the decision that was made. All (100%) have said that it was a terribly difficult decision, but that they are at peace with it. Not one has ever said that they had made the wrong decision. A number of times the family expressed tremendous worry and regret that they might have allowed their child to suffer longer than necessary. I always reassure/remind them that all efforts were made to treat pain and discomfort.
The pendulum has swung too far toward parent autonomy. There are now laws on the books in several states that are referred to as "physician conscience" laws- intended to protect and give relief to physicians being requested/forced to intervene medically in situations that violate their integrity, ethics, and oath as physicians. This is why futility statutes like the Texas law are needed. The Texas law may not be perfect- the revised statute came out of committee late this week and will go to the Senate for vote next week. It should be passed without difficulty, as it is a good compromise effort that addresses the concerns of the disability community, family advocates, physicians, hospitals, and received broad support from religious leaders. It is an improvement over the 1999 law in every way.
I am therefore encouraged and pleased to see that the improved version of the Texas futility statute will be approved next week, during the court deliberations on behalf of Emilio. It is a fitting irony and will be a fitting conclusion to what has been a sad and sorry episode of human behavior by the extreme activists and operatives who have manipulated Ms. Gonzales, suffocated the life stream of a little boy, and demonized the caregivers who have been the baby’s only advocates.
Wesley said somewhere that he believes Jerri Ward, because she has never given him a reason not to trust her. Well, Wesley, I guess you are either easily duped or really just don’t care about the truth, as long as “the crowd you run with” is able to leverage and take advantage of the deceptive, one-way flow of lies masquerading as facts for your own purposes. The whole house of cards will come down on May 8-9, whatever Judge Herman’s decision is. The truth will come out, with videos and pictures. I just hope and pray that Judge has the courage to act on behalf of Emilio, not the manipulative forces who are keeping Emilio from arriving in the arms of Jesus.
Hmmm, I was following wounded pig's stories with interest and sympathy until we got a ways down. Suddenly we got to a case where the father was suspected of having smothered the child and w.p. apparently thinks it a _bad_ thing that the child's life support was not withdrawn and that she received a G-tube and trach and went home on a ventilator. That's a bad thing? I guess it would have been better if the hospital had finished Dad's work for him so he could be charged? Or something. My sympathy began to wane at that point.
And all the way through, I was wondering several things. 1) It appears that when it was good for the child to obtain the treatment, the doctors were successful in _persuading_ the parents to receive it, without the need to override them. 2) Should there not perhaps be an asymmetry in our evaluation as between cases where parents wish to discontinue treatment and cases where they want to continue it? These are being entirely paralleled here to grab pro-life sympathy for allowing doctors to _discontinue_ treatment. I mean, let's face it, pro-lifers aren't opposing these compromise bills because they allow doctors to _continue_ treatment against patient's family's wishes but because they allow them to _discontinue_ it. So it's not clear that the earlier cases are even relevant to the legal bill at issue.
Then suddenly w.p. descends into calling for Emilio to be sent to the arms of Jesus, and all of my sympathy evaporates. Poof! Especially when the mask starts to slip and we get all the talk about "the crowd [Wesley] runs with" who use "lies" and "deception masquerading as facts." This does _not_ sound to me like a doctor whose chief concern is parents who try to bump off their babies and then insist on removing treatment against doctors' better judgment. Nope. This sounds like a doctor who is strongly ideologically committed to the "Emilio must die" school of thought and is furiously angry at anyone who wants him to get a G-tube and a trach and be sent home on a ventilator rather than going to the arms of Jesus. (Remember, w.p. thinks that was a bad outcome in the case of a little girl who had respiratory response after coming off a ventilator.)
So, sorry, w.p., but you aren't very convincing. Should've left off the last part of your message and you might have had some of us thinking, momentarily, that all the earlier stuff was relevant to the matter at hand.
Ms Lydia
You and your kind have a definition of euthanasia that is not found in any dictionary, any reference, nor espoused by any truly sane, thoughtful, logical, compassionate individual.
I wonder- are you calling all those thousands of loving parents who have decided that removal of advanced life support (that is only prolonging the death) is in the best interests of their child murderers and euthanizers too? If not, why not? It would seem to follow from all your previous posts. Or is it just the caregivers and ethics committees that are the last hope for patient advocacy and protection from having their bodies pummelled in their last days of life. These are the murderers and euthanizers you abhor?
Let's get back to your bizarrre view of what euthanasia is.
Here, why don't you try this-
From http://ncronline.org/NCR_Online/archives2/2005c/070105/070105i.htm
This article discusses the use of the ethic of reciprocity/application of the Golden Rule in the understanding of end of life decisions:
"...Finally, he suggested applying the Golden Rule and asking: “What would reasonable people think should be done or what would I want done if I were in a similar condition? Maybe all we have left is the ethic of reciprocity or the Golden Rule,” said Rosell, an ordained American Baptist minister and an associate professor of pastoral theology -- ethics and ministry praxis -- at Central Baptist Theological Seminary in Kansas City, Kan.
Rosell noted that several hundred people have been given “the Golden Rule” test, including many of his family members and students. Despite professing vehement support for the continuation of life supports in the case of patients in a persistent vegetative state, Rosell said he has yet to find a single person who has volunteered to have tubes and a respirator attached to themselves in order to prolong their life were they to become permanently incapacitated with no prospects of improvement."
Unless you feel that your position is infallible, I suggest you reflect on the theory of human attachments. This speaks well to the extreme difficulty some individuals have in allowing their loved ones have a peaceful demise. The concepts of pathologic/selfish/egocentric/primitive human attachments vs an attachment born out of love, compassion, maturity, selflessness, and heroism. Our tough decisions are affected by the types and proportions of attachments at play in our hearts and minds.
So I ask you, why don't you take this little test? in a careful, deliberate, and honest manner, apply the golden rule as suggested by Dr Rosell as you contemplate the manner of your own death and its impact on your loved ones. Will you apply the same rules and values to yourself as you seem willing to impose on others?
After taking the Golden Rule test, then write your own advance directive.
Is this how it will read?
"Keep my heart beating to the last possible beat, no matter what the cost in nonredemptive pain and suffering and loss of human dignity. Keep me from leaving the bonds of earth to be with my God for as long as possible. Torment my loved ones daily with the reality of my hopeless condition, my lack of awareness of my environment, my complete inablity to feel their touch and receive their love and respect."
Most people would not write their advance directive this way.
The concept of natural death has become a bit nebulous for some in this new millennia with its medicine and critical care possibilities. Some talk about natural death and not wanting to take the decision out of God's hands. From first hand experience over many years, I know with certainty that medicine is able to take the decision out of God's hands- but only for a while- we can only postpone God's decision, not change it.
woundedpig: If the court so rules, at least that is where it belongs because there is a public record, the right to cross examine, and appeal. Deciding for others behind closed doors is wrong. It needs to be public and open.
I don't believe Jeri Ward would mislead me. I am an attorney and I know that there are different sides to issues and differing interpretations. I don't trust her because she is "my crowd" but because in public and private I have never found her to mislead or engagein mendacity. I can, and have, said the same about people with whom I disagree. At the same time, there are people with whom I agree that I don't trust.
Good for you for meeting with parents who decided the time had come to withdraw treatment. That was where the decision belonged--not coercion.
I can also give you chapter and verse of cases where the medical team decided a life was not worth living or capable of being saved, where things didn't turn out as expected.
I don't demonize the medical team. But I do think that the Texas futility law has to go. If a situation is so bad that it is unconscionable, the matter should be brought to court.
By the way, woundedpig, if medicine becomes a matter of personal conscience rather than professional responsibility, it ceases to be a profession and doctors/nurses etc. are reduced to technicians. It isn't up to YOU to decide when a patient's life is worth living. That isn't a medical decision, it is a value judgment.
As to the Golden Rule, I would want the good doctor to be able to decide for himself when to stop life support, or those he chose to make that decision on his behalf, as I would want that choice. And my advance directive, while permitting respirators to be refused, instructs that I not be denied tube feeding based on cognitive incapacity. So, now you know one.
Wesley, every single act that doctors and nurses do in the care of patients is one of "personal conscience." That is a vital part of professional responsibility. We can observe the results in orders and procedures, but we must understand that those results begin with actions driven by the conscience as well as knowledge and skill of the physician and nurse.
Hello, what?
I have _never_ used the term "murder" or "euthanasia" to describe the case in question here (that is, Emilio's case). I _would_ use it for Terri Schiavo's case, because she was dehydrated to death, but as far as I can recall I never did so anywhere that Mr. W.P. is likely to have seen. What "previous posts" are you talking about? I think that, though I've clearly been leaning towards accepting Jerri's characterization of this case in question, and though I see real and serious problems with the compromise bill I've heard of as I understand it, my tone (in contrast to yours) has been notably moderate.
Now, actually, my advanced directive is extremely strongly worded, and no doubt W.P. would think it far too far in the direction he deplores, so I don't think that line of argument is fruitful, W.P. As for talk about letting people go to be with their God, that creeps me out, so if you hope to be persuasive, I suggest you cut it, because people like me wonder how far _you_ would go with it. "Let's drug the heck out of so-and-so who is diagnosed in a PVS and withdraw nutrition and hydration for 14 days so he can go to be in the arms of Jesus with his God." No thanks! And believe me, rejecting that approach is applying the Golden Rule big-time.
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