Why The Texas Futile Care Law Must Fall
This correspondence is from Texas lawyer Jerri Ward, who has proved worthy of the honorific, attorney at law for fighting tooth and tong against futile care impositions in Texas (Andrea Clarke, for example). Jerri asked that I post it here at Secondhand Smoke. I do so because I trust Jerri. She has never steered me wrong:
"I attended an ethics committee meeting yesterday concerning a 15 month old baby. The baby is suspected of having Leigh's disease-although that is only the best guess of the neurologists and neuro-radiologists and not a medical certainty. The results of the tissue biopsies are not all back.
"According to the mother, the hospitalist pediatrician had refused to write an order for the insertion of a peg tube and trach so that the baby could be transferred to a pediatric snf (skilled nursing facility). The pediatrician pretty much admitted to this during the meeting.
"The neurologist spouted the usual nonsense about the baby's life not really being a 'life' and made the burden argument. He tried to express that it's not in the baby's interest to continue life--but immediately segued into an argument about how hard the situation is on the care-takers. I called him on that and said that we needed to transfer the baby to the pediatric snf where they care for children in similar situations day in and day out and the caretakers don't consider it a burden upon them to give care to such children. The hospital lawyer interjected with some calculated coaching to keep the doctor from descending further into a utilitarian argument.
The pediatrician, who has been very rude according to the family-slamming doors in the mother's face and the like, was an appalling woman. She openly admitted that the trach and the peg tube would not be complicated because the baby has no co-morbidities that would cause problems. She admitted that it was probable that he would be readily admitted to a pediatric snf-yet she tried to justify obstructing all that and removing life-support because of the benefits burden argument--and she argued that point like an impassioned parrot of current futility faddism. In order to counter that, I was able to open up the mother in an equally impassioned description of how the baby responds to the love and attention of the family and how important it was for her to continue giving all that until Jesus takes the baby into his Arms.
This baby could live months or even years longer with good--but simple care. All he needs is a respirator, ventilator and the attendant care, anh, and a vitamin regimen--along with daily custodial care.
The ethics committee decided not to invoke the 10 day period. As of now, I am uncertain if the pediatrician will write the order for the trach and the peg tube. It is imperative that these orders be written so that the baby can be transferred away from doctors who believe that he should die right now...
"Would you please blog about this. I don't want to reveal the hospital name until I know whether or not the fight is over. If it's not--I will reveal this information.
Jerri Lynn Ward, J.D."
I post this, realizing it presents only one side, because it vividly illustrates the hostility that some families face in some hospitals merely because they wish to keep their loved ones in the land of the living. (I had a similar experience when I represented pro bono the wife of an Alzheimer's patient. She had agreed to a DNR and no antibiotics, but would not agree to dehydrate him to death. The doctor's ultimate goal was to remove tube feeding. He was literally white with rage for being defied.)
posted by Wesley J. Smith @ 10:44 AM
28 Comments
28 Comments:
How is the poor baby getting food and water now? With an NG tube? It sounds like they've _got_ to find another pediatrician. That's really a horrifying story. God bless Jeri, and if the hospital keeps stonewalling, they certainly should have the behavior publicized.
What happened to the man with Alzheimer's in your story, Wesley? (I'd like to think the doctor just had to live with being defied and that the man died a natural death, not dehydrated.)
I really wish Doc Roberts (tough old doctor I grew up with, amazing woman still practicing now in her 90s) could find this place and kick their tails-- I'd even help her adjust her roboleg.
Or maybe sic my little sister on doctors who don't want to doctor-- she deeply wishes to be a doctor, but faints at other folks' blood.
Do folks who go into the medical field and don't want to save lives have NO irony in them?
Lydia,
The baby is intubated and has an NG tube. Most--if not all--long term care providers who handle respirators and ventilators and ANH will not consider a patient for admission without a trach and peg tube.
Thanks, Jerri. That's sort of what I suspected. The NG tube is regarded as temporary, not long term. Same with the intubation. So the pediatrician wants to keep the baby in limbo with a temporary breathing and feeding set-up, unable to be moved to long-term care, because she (the pediatrician) thinks the assisted breathing and ANH should be withdrawn and the baby shd. die. This is a way of putting pressure on the parents. What a horrible person.
To be perfectly fair, the mother originally didn't want the invasive surgery-but she did not understand that this meant that there was no possibility of transfer without them. Further, the mother has had some confusing and contradictory reports about the condition of the baby--not to mention the fact that she has witnessed the baby's responsiveness to being rubbed and loved on. She is now resolved to get the baby out of the hospital to go to the snf.
However, once the pediatrician began talking of withdrawal of the respirator, the pediatrician made it clear that she would not write orders for a trach, peg tube or discharge and transfer. There is some dispute about the timing of this--but the bottom line is once futility protocols began, the pediatrician expressed unwillingness to write the orders.
Perhaps now she will write the orders--despite her insistence at the meeting that it would be "unethical" to do so.
Jerri,
Have they found a surgeon that will cooperate by placing the feeding tube and the tracheostomy?
I'm so glad that the law worked in this case: the ethics committee did not agree with the pediatrician's decision to refuse medical care that the patient's family wanted.
I wonder why the mom didn't want a feeding tube or tracheostomy?
BTW, the coalition working on the Texas Advance Directive Act agreed months ago that there needs to be change in the language so that food and water can not be withheld against the family's wishes. I'm still trying to figure out why Right to Life agreed to make food and water a medical treatement in the first place.
However, if the current bill is passed as it's written by Senator Duell the conscience clause that prevents us from being forced to do other acts - such as abortions - will be severely harmed.
Although we doctors do go into medicine to help people, we tend to think of ourselves as caring for the patient in front of us. Who would intentionally take on patients whose family members could work to force us to act against our consciences?
I wonder why the mom didn't want a feeding tube or tracheostomy?
I can see that really easily-- mostly because folks believe a lot of what they want to believe, or what they have to believe to stay sane. "My baby will be fine, it's just temporary, she'll get better with this easy, no-surgery stuff and we'll go home...."
When it became obvious that the baby wasn't getting better, and that the doctor wanted to KILL her baby, I can see the mom getting... irate.
Foxfier is pretty clearly right. I'm sure, too, that plenty of laymen don't realize that an NG tube or intubation is regarded as so temporary that your child might not be able to get needed care in a long-term facility if a surgical tube weren't implanted. It's certainly not as though the pediatrician was likely to explain all this to the mother and give her options. It sounds like she had to muddle her way through with limited information, perhaps only getting things clear when Jerri came along to explain things.
Question: Isn't this a big enough hospital to have other pediatricians? I can't see why transfer of facility wd. be necessary for transfer of doctors. I suppose it's possible that another pediatrician or doctor might refuse to write the orders once this doctor had made a fuss about it--a sort of perverse collegiality--but I'd hope you could just do some shopping around for an area doctor who had privileges at the hospital who would take over the patient and write the orders.
B,
The only reason the law "worked" in this case is because the mother got a lawyer and I brought a contingent to the ethics committee. We walked into a room of 23 people. Had she gone in there alone, she would have had no chance. The neurologist tried his best to mischaracterize what the mother said in that very meeting.
The hospital knew what I was going to do next. I'm convinced that this is why they voted the way they did.
Of course, your side wants to keep lawyers and Texas Right to Life off the Public Registry so that families will have no information about who can help them in these situations.
The law "works". It works in favor of the hospitals.
Jerri,
What's the public registry? I didn't know about that. (The move to keep you guys "unseen.")
As to the question of why TRTL allowed nutrition and hydration to be designated treatment, unfortunately their legal counsel probably told them this is a necessary result of the Cruzan decision. I was told that explicitly by the legal advisor for my own state RTL group. I think there might in fact be wiggle room in Cruzan for designating nutrition and hydration as not being treatment when _wanted_ (Cruzan concerned only what was unwanted), but the interpretation is understandable.
I understand the concern about not allowing doctors to have a conscience clause concerning abortion. It seems to me we shouldn't be squeamish about making explicit distinctions in law between the kinds of things doctors shd. have conscience clauses about and the kinds of things they shouldn't. They _should_ have the right not to commit or refer for abortion. They should _not_ have the right to deny nutrition and hydration until a transfer can be obtained. Distinctions have to be made. I don't know the wording of the new law and how it deals with the possibility of doctors that don't want to do abortions. I'm sure at least that someone has thought of that question from the RTL side and has an answer. But the present futile care system does clearly need to be changed.
"My side" would never try to get you off the registry. I considered putting my name on it, but I'm a family doc,not an intensivist. I only have privileges at one small rural hospital that can't offer either the technology or specialists these patients need.
I have offered my services to you and to TRTL as a translator between the families and the doctors.
And I do believe that I could help, as a go-between, someone who knows the language, the "buzz words" that get doctors' attention.
From what I understand, the hospital lawyer was at the meeting. Which means that they knew that you would be there.
But I'm not sure whether this meeting was called by the doctor, according to the TADA procedure. (I asked for an ethics consult before my Moma died, and it had nothing to do with the TADA - I just wanted someone besides my sister and I to advise Daddy.)
Does mom know other doctors at the hospital (The Mom's family doctor or her OB?) who could talk to the surgeons at the hospital to consult and arrange the surgeries or who can find other pediatricians?
B,
Maybe I was unfair to say "your side", but, quite frankly, I don't fully understand where you are coming from in all this. The meeting was called because the mother didn't agree with the doctor's desire to remove life support.
Lydia, the registry is a list of people willing to assist families with transfers from hospitals that invoke the 10 days. Some of those who like this law want the listings for Texas Right to Life and attorneys to be taken off of the registry--and only facilities or doctors who might be willing to take the patient included. Of course, no providers have signed up on it the last I saw. (with the exception of one doctor who has been trying to get his name off the list for months)
Jerri: I think Lifeethics.org is worried that a poorly written futile care rescision statute could affect adversely doctors who don't want to do abortions. I have warned pro life advocates about this issue from the other side. I have told them that if they don't draft "conscience clause" statutes with great care, it could empower futile care theory refusals of care.
Wesley,
I agree with her on that point.
Wesley,
What do you think about this specific attempt to amend the Texas law. Do you think that it, specifically, creates a problem for doctors who do not want to provide abortions? You seemed very positively inclined when you blogged about it below. I've looked at the link and of course am no lawyer, but to me it looks like it should not affect the abortion issue at all, because it concerns "life-sustaining treatment" (some phrase to that effect) and continuing to provide it. But perhaps you have a take on this. Lifeethics seems definitely negative on it and definitely to believe it creates a problem. My impression is that she is not of your mind concerning the need to overturn the present futile care statute.
And I think, too, that Jerri has a good point. One way to see that the present law is flawed is that ordinary people shouldn't have this big fear hanging over them that their babies are going to have ANH withdrawn within ten days. To say blithely, "How nice that the law worked this time" glosses over the fact that the mother shouldn't have been in such grave danger of having her PERFECTLY LEGITIMATE wishes trampled in the first place. It shouldn't have been what it obviously was--a close call, where only the timely intervention of Jerri as a lawyer to stand up for the woman at this bullying meeting of pseudo-intellectuals saved the child.
Jerri,
I have to ask - has the doctor ruled out thiamine deficiency?
As to where I'm coming from: I'm a pro-life family doctor who is convinced that most of these cases start with bad communication that gets worse and worse. Your contingent meets their 23 at the ethics committee is sort of like husband and wife taking their separate lawyers to marriage counseling. Or two nuclear countries going to DefCon 5.
The reason I asked about the mom is that I had done a bit of quick research. From what I've read, this child must have the severe form of mitochondrial disease that causes loss of brain tissue and which puts him at risk of increased organ and tissue disease in the muscles, liver, pancreas, and kidneys due to the stress of anesthesia and surgery.
I wondered whether the mother and the doctor might have agreed at one point because there is severe brain damage causing the need for the ventilator, and that the disease was the type that would lead to increased damage with the stress of the surgery. Maybe she believed there didn't seem to be time, because of the speed of brain damage and then the rapid deterioration slowed, making her reconsider.
A pediatrician can't just order the placement of a tracheostomy and a permanent feeding tube.
Unlike all of the nurses,aides, respiratory and lab techs, and pharmacists involved in caring for and treating patients every day in the hospital, the surgeons and anesthesiologists don't take orders from other doctors or the hospital.
If there is an expectation of a bad outcome these specialists probably won't agree to doing the procedures.
Beverly
Lydia. No. As I read (and linked) the legislation (in the blog entry before this one), it seems solely aimed at cases in which hospitals do not wish to continue life sustaining treatment due to medical futility determinations by ethics committees at the request of doctors. It primarily does away with the ten day rule and requires life-sustaining care to be continued until a transfer can be arranged. It also separates tube-supplied food and fluids from futile care determination protocols. I think passage of the leglislations is a matter of most urgent concern.
Thanks, Wesley, that's what I thought.
I think B. is misguided here in implying that there is no ill-will or bad ideas on the part of the pediatrician but only misunderstandings. Nor can the pediatrician, as far as I can see, be gotten off the hook by reference to the surgeon. Isn't it a _necessary_ requirement that the pediatrician write orders for the surgeries? It might not be _sufficient_ to get the surgery done if, in some unusual circumstances, the surgeon for some reason balks separately, but it's pretty obvious from what Jerri is saying that they won't do it without that, even if the child is a good candidate for the surgery. So the pediatrician can block it and apparently was blocking it. Hopefully she will stop doing that now.
Nor does it sound, from the pediatrician's comments given by Jerri in the meeting, like this is just a case of miscommunication where the pediatrician is justified in thinking that the child won't survive the surgery or something like that. She never, apparently, said anything like that. It sounds like her arguments were straightforwardly of two types: First, utilitarian arguments regarding efficiency and use of resources. Second, quality of life arguments that the child's "didn't really have a life" because of disability, even if the child lived.
Jerri can correct me if this impression is wrong, but I think there's no reason to assume that the doctor is just being a good doctor and that there's just a miscommunication.
In fact, isn't this just the mistake that is sometimes made in foreign policy? :-)
Lydia,
I believe you to be correct in your characterization. The pediatrician's arguments were utilitarian and she stated that there should be no complications in this baby with the insertion of the peg tube and trach.
It was my first ethics committee meeting and I thought that I was in the Twilight Zone.
Thanks, Jerri.
Well, Lifeethics, there y'go. The pediatrician admitted there would be no complications. I think it's time to stop the silk-purse-from-sow's-ear attempt. Sometimes doctors are just trying to do something _wrong_, hard as that may be to believe.
As I said, things start bad and get worse.
I've offered to translate and to use the "doctor talk" I've learned through the years.
I'm praying for the baby and family.
Okay, what's bothering me is that if the treatment is not dangerous, how can it be considered unethical? Obviously, since the ethics committee disagreed with the doctor, they told the doctor that it is not unethical to proceed with safe treatment.
However, mom had at one time questioned the procedure. I don't know whether the doc called the ethics committee before or after they disagreed. As I said, there are many reasons to call an ethics meeting, including a genuine "Is it ethical to ___?" At many hospitals, anyone involved in caring for the patient, including nurses, may ask for an ethics consult.
In the cases where the ethics committee is called by the doctor to comply with the Advance Directive Act, there is a disagreement that the family is already aware of.
The 48 hour notice of the ethics committee meeting and the 10 day period in which to find a new doctor and/or hospital is too short. The doc should never be able to invoke the transfer-or-withdraw-treatment-process if the patient only needs food and water. Everyone working to amend the law agrees on these points. In this case, food and water is not the question, since removing the ventilator would cause death long before hunger or thirst is an issue.
Jerri, you're quoted in several newspapers as saying that doctors and hospitals kill and bury their mistakes. Please consider that committee members may be defensive rather than combative.
"If the treatment is not dangerous, how could it be considered unethical?"
But really, are you unaware of what is taken for ethics nowadays? What do you think so-called professional ethicists have been taught as part of their "ethics" training, for goodness sake! Utilitarianism, of course, and in bio-ethics, what Wesley calls "futilitarianism." That _is_ considered ethics--counting costs and benefits, treating it as one big pot of money belonging to "us" which the elites are supposed to use most "efficiently," and all the rest of it. _Obviously_, the doctor said it was "unethical" because she believes the baby's life is not worth living and that the money and trouble would better be spent on, oh, I don't know--vaccinations or something for other kids. Or maybe post-natal home visits for kids in the ghetto or something. "Prevention." That's what these people are all into, and that's doubtless the kind of "ethics" this woman has been taught. How can you be a doctor and not know this about what passes for ethics nowadays?
I took my long answer to my blog.
http://www.lifeethics.org/www.lifeethics.org/2007/02/debate-on-ethics.html
I read it. But Jerri was at the ethics meeting and has met this pediatrician, and you haven't. To an observer on the side, as I am, this looks rather as though you're putting words in the pediatrician's mouth and ignoring the words she actually said. I mean, if we take Jerri to be telling the truth, the pediatrician expressly said that the surgery wouldn't harm the child. You shouldn't just ignore that.
I realize that you believe you have evidence from your experience that Texas doctors are by and large a genuinely ethical group of people, but you have to be open to contrary evidence re. specific individuals, as this appears to be.
Nor has it sounded to me from what else I've read by Jerri as though she just woke up one morning and decided to think ill of Texas hospitals and doctors. She's had a few "twilight zone" experiences, like this ethics meeting, and that's her evidence for what she thinks of the system. That's evidence, too.
I realize you think she's biased against Texas hospitals and doctors, but to me it sounds like you're determined not to think ill of them no matter what, like you're entirely biased in their favor and are overwriting evidence against them with your own self-generated interpretations of situations even when these contradict what the doctor is reported actually to have said.
B,
I have NEVER been quoted in one newspaper as saying that I believe Hospitals kill and bury their mistakes. I have never said that hospitals are killing these people. I know some family members have said that in anger but I never have.
I have said that the law is written in such a way that it raises the question as to whether it could be used to bury medical mistakes. That is a huge distinction.
In Kalilah Roberson-Reese's case, there was a sentinel event--the trach came apart and she was not on an alarmed respirator. Less than ten days after that, the hospital is rushing her through a futility review. If you can't see the appearance of impropriety there and the blatant conflict of interest inherent in the hospital pushing to remove the respirator and allowing her to die under such circumstances, then you confirm the need for lawyers and courts to continue to be involved in these cases when family members want them to be.
I'm a "Pollyanna." I usually do try to find a way to explain away apparently bad behavior. I'm convinced that if we all sit down with the assumption that the patient is our primary concern and avoid the assumption that the other is an adversary, we will come to common ground.
But then, I did misremember Jerri's statement.
To be fair, we didn't know that the Pedi said that the procedure would be safe until after I said that I'd read that the severe form of mitochodrial disease had a high risk of mortality with surgery.
See how easily misunderstandings happen?
"See how easily misunderstandings happen?"
You are exactly right about that. I have noticed that when I talk about conflicts of interest and standards of proof and due process to doctors, it seems they thing I'm speaking a foreign language.
I also know that it is human nature to become defensive when one's work is being second-guessed. Doctors work hard and accomplish amazing things. However, there are some decisions that they are not qualified to make with no oversight.
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