Specifics on Texas Statute Imposing Futile Care Theory
For listeners to Ron Thulin, (KAHL, San Antonio, Texas) and anyone else interested in the law permitting Andrea Clarke to be removed forcibly from wanted life-sustaining treatment: The statute permitting Texas hospital ethics committees to impose Futile Care Theory is available at this link . Scroll down to 166.046(e), which provides in part:"The physician and the health care facility are not obligated to provide life-sustaining treatment after the 10th day after the written decision required under Subsection (b) is provided to the patient or the person responsible for the health care decisions of the patient unless ordered to do so under Subsection (g)." Subsection g merely permits a time extension if another facility is likely to allow admission.
This law needs to be changed!
posted by Wesley J. Smith @ 12:25 PM
17 Comments
17 Comments:
There is definitely a need for a legal challenge to this law! I cannot fathom that a hospital ethics committee has the final say and can override the wishes of both patient and family. As I wrote here, the hospital has a tremendous financial incentive to see the patient dead. They are not the ones to provide an objective decision of what is best for this patient. I have been a physician for twenty years and am now retired. The evolution of medical practice dictated by committee is part of what made it easy to leave clinical practice.
Thanks for posting. I don't believe that the people, once they know about this, will accept it.
Please look at your e-mail. I sent you an update on the Texas cases.
This law is like a nightmare! I read this story on WND but I am having trouble finding any verification. There are no news stories at the Houston Chronicla or KHOU about Andrea Clarke or St. Luke's. Please direct me to a source so that I may start passing the word about this.
I too am amazed by the lack of media coverage. KHOU did a TV news spot last Saturday evening. Link is here. Other than that, all the info about Andrea is via blogs and this is reporting information obtained only from Andrea's sisters. There are a lot of holes in the information because this just doesn't make sense!
Thank you for the link, Catholic Mom. I will pass the word to pro life sources. We will pray for her, her family and our country. She will be included in the prayers of our parish.
From Catholic Mom:
all the info about Andrea is . . . information obtained only from Andrea's sisters. There are a lot of holes in the information because this just doesn't make sense!
Exactly.
So why do you believe that there is actually a problem?
As you point out, we have no real information on the patient's medical status. This situation has been developing for almost 6 months; not only do we not have confirmation of the patient's supposed requests, but we don't know when in the course of treatment they were made or whether the patient's mental status or prognosis have changed since then. In addition, the sister's claims that the hospital is deliberately anaesthetizing the patient to keep her from communicating, and that all local hospitals are engaged in a conspiracy to refuse to accept patients whose treatments were declared "futile" by one facility, are supported by no evidence whatsoever, and are simply fantastical on their face. Taken together, this does not strike me as reliable evidence that the case is being mishandled. The fact that this "doesn't make sense", as you correctly point out, seems to me to be a good reason not to believe it.
All we know is that: on one hand, the family is making wild claims about the patient and the hospital, some of which are patently absurd and some of which are unsupported by evidence; on the other hand, the hospital has acted under a statute which makes it actually impossible to terminate treament if even one doctor agrees to take over care of the patient, and no such doctor, from that hospital or any other, has come forward. In addition, the law provides for a mandated period to arrange for transfer to a facility that agrees that care is not futile and will provide for the patient - and no such facility can be found.
It is impossible on this evidence to come to a firm conclusion about the right resolution. But it is certainly possible to suspect that one explanation is much more likely than another. And there seems no good reason at all to believe any of the family's assertions in the case - certainly not the crazy ones, and by extension not the otherwise-plausible ones either. The hospital's assertion that care is futile, on the other hand, is circumstantially supported by the fact that there appears to be no dissenting medical opinion on that matter. In addition, the hospital is required by law to provide a written explanation of its grounds for this conclusion to the patient's guardian - who has chosen not to make it available, while still making unsupported accusations about the patient's care. That also seems suggestive to me.
In short, I don't understand what grounds there are for controversy in this case. Until some credible evidence comes forward, there seems to me to be no reason to believe it is not being handled appropriately, and at least circumstantial evidence for believing that it is.
Kevin,
"The hospital's assertion that care is futile, on the other hand, is circumstantially supported by the fact that there appears to be no dissenting medical opinion on that matter"
There is no procedure provided in the statute giving the family an opportunity to either get or present a dissenting opinion for the ethics committee meeting.
There is no effective way because of the time constraints to challenge the diagnosis of "futility". I know because I am handling this case and another one at the same time.
Are you advocating that someone die on the basis of "circumstantial" evidence that, procedurally, one is not allowed to challenge?
If you are a medical person, this is precisely why such decisions should not be left only to ethics committees, I am finding that doctors and hospitals don't have a clue aboutwhat due process means.
We do not know the medical specifics about this case. As a doctor, I would want to know:
1. What happened that the hospital now wants to withdraw therapy? The family says she is clearly communicating with them, she is not comatose, and she is not brain dead. Why not continue with the status quo?
2. If the therapy were continued, what is her prognosis. Do we expect her to die in a matter of days, weeks, months, longer?
As a citizen, I want to know
1. Who is on the ethics committee and how are members selected? What financial relationships do the ethics committee members have to the hospital.
I have worked with military hospitals and civilian hospitals. Budgets are tight. Hospital administrators are under incredible pressure due to decreasing reimbursements and increasing costs. They pass this pressure on to the staff. On more than one occasion I have been bullied in an effort to influence my medical decisions in a direction that was financially better for the hospital but medically ill advised for the patient. Just trusting the hospital to do what is best for the patient can be deadly.
There is no procedure provided in the statute giving the family an opportunity to either get or present a dissenting opinion for the ethics committee meeting.
The law specifically provides that the patient or patient's representative may attend the ethics committee meeting. (Texas Health & Safety Code Sec. 166.046(b)(4)(A)) It does not explicitly state that they may speak, but I can't imagine it would be prohibited.
In any case, the issue before the committee is not what the patient's wishes are, but whether continued treatment would be "medically inappropriate". I have stated in another post on Wesley Smith's blog that I don't like the term "inappropriate" and would prefer a clearly defined standard of "futility", but I don't think this is a major issue. Either way, the question is construed as one of medical fact, not patient preference.
And as to "dissenting opinion", if the patient can identify even one physician willing and qualified to take over that patient's care, who believes that continued treatment is appropriate, the law explicitly stipulates that the patient has the right to demand transfer to that physician's care, and continued treatment before and during the transfer. (H&S 166.046(d)(1-3)) This entire situation arises only when the entire available qualified medical community is unanimous that there is no good reason to continue treating the patient. I can't see how this procedure tramples any right or reasonable claim to treatment the patient may have.
There is no effective way because of the time constraints to challenge the diagnosis of "futility".
All you have to do is find one doctor who disagrees and is willing to back it up by actually treating the patient. (H&S 166.046(d)(1-3)) The hospital is required to provide the patient's representative with a list of healthcare providers who have already indicated their willingness in general to accept end-of-life patients in transfer under the provisions of the Code, before the ethics committee even meets. (H&S 166.046(b)(3)(B)) You have at least 10 days after that meeting, by law, to arrange the transfer, and the right to ask for an extension if you can present "a preponderance of the evidence" suggesting that such a transfer is possible. (H&S 166.046(e) and (g))
The patient is guaranteed continued care as long as they can find any doctor willing to provide it. You don't have to "challenge" the diagnosis - even if every doctor in the state but one agrees that continued care is inappropriate, that one is sufficient to guarantee the patient continued care as long as they are willing to provide it. And the law provides ample opportunity to find such a caregiver - it even created a statewide registry of doctors and facilities who agreed to help, and mandates you be provided with the list. It just does not guarantee that care actually will be appropriate in every single case. In this case, nobody seems to think it is - but you've been given extensive opportunities to make the search.
I am finding that doctors and hospitals don't have a clue aboutwhat due process means.
Very likely because they are engaged in administrative hearings, not courtoom proceedings where the legal concept of "due process" actually applies.
On the other hand, as noted above and in the text sections I have cited, the law provides ample opportunities to arrange for continued care for a patient whose treatment team regards that care as "inappropriate" or futile. All you have to do is arrange the transfer - legally they cannot prohibit you from doing so, and in fact are required to assist. The law provides for hearings, extensive notification rights, a waiting period, and a court proceeding to extend the waiting period. You have all the "process" you need to arrange the patient's care - unless, of course, you can't find a single doctor in the entire state who thinks that would be the right thing to do.
I presume you have made use of the processes and rights the law grants you in this case. If you still cannot get approval from any qualified caregiver, I suggest that is not the result of a lack of "due process", but simply because no qualified caregiver disagrees with the hospital's judgment (or disagrees enough, at least, to be willing to take on the case).
Are you advocating that someone die on the basis of "circumstantial" evidence that, procedurally, one is not allowed to challenge?
I did not say above that the ethics committee's evaluation was based on circumstantial evidence, or should be. I said that all we, as outsiders, have on this case is circumstantial evidence, and it suggests that ethics committee's decision is one that is concurred in by all or most doctors, while the family's charges of conspiracies and "drugging the patient" do not seem credible. My conclusion was that there is no reason to think anything untoward is happening in this case - a conclusion I still hold after hearing further objections from the patient's supporters, who go on and on about unfairness but fail to present even the slightest evidence that the patient can actually benefit from the proposed care.
As to standards of decisionmaking - an issue I did not address above - I'm happy to go on the record as believing that patients do not have an open-ended positive right to demand any and all treatment without regard to circumstances, the availability of treatment resources, or the likelihood of that treatment materially impacting the patient's quality of life. There must be limits on what patients can expect or demand, and those limits should be set with reference to the actual efficacy of the treatment in benefiting the patient in a way the patient can consciously experience and value.
Another Approach
Dear Wesley Smith, Jerri Ward, and "Catholic Mom":
On further reflection, I have decided you are right. It is unconscionable that medical experts have conspired to refuse expensive and indefinitely-prolonged care to a patient who wants it, merely on grounds of the lack of medical usefulness of that care. The patient's preferences know no bounds, clearly.
Which is convenient.
As it happens, I have a number of health problems and, like so many Americans, no health insurance, and limited financial resources. No hospital will treat me for free, because they are engaged in an immoral conspiracy to deny my preferences. But you have given me the solution.
I am subject to chronic back pain, and find that only a high-quality ergonomic chair gives any relief. I cannot afford a $900 Aeron chair, but it is a medical necessity for me, and besides, I want one. Please contact me for my address to arrange shipping at your expense. Should surgery become necessary at some later time, I will alert you.
Also, I have long suffered migraine headaches, but the only medication that helps - Maxalt, 10mg - costs $25 per pill retail and there is no generic equivalent. I cannot afford to fill a prescription out of my own pocket. A standard prescription is a 3-month supply at 15 tablets per month. Please send it immediately, and then we can work out a regular refill schedule.
In addition, I have to admit I have a bit of a weight problem. The last time I got to see a doctor, I asked about that stomach-banding operation; he said it was "medically inappropriate" and would not help, but what does he know? I have decided I should have it no matter what the doctors say. It costs $25,000 or more without insurance, but you can probably pay it in installments.
As I say, feel free to contact me to make arrangements to pay for all the above. As one of you is a physician, and the other two are lawyers actively fighting the application of the concept of "medical futility" to unlimited patient preferences, it is obvious you have a medical (in the one case) and moral (in the others) obligation to assume this responsibility for me. Otherwise, you're just part of the conspiracy like all those doctors who won't give the Texas patient her ill-advised and medically futile preferences. I know you won't let me down.
Thanks!
/s/ Kevin T. Keith
I will repeat, medical peoples\ seem to have no idea what procedural due process means. Assuming that Keith is a medical person, he proves it by assuming that Administrative hearings do not have due process protections.
Dear Kevin: No. This is not a case of physiological futility. The care isn't being unilaterally refused because of the medical uselessness. It is being refused because it isn't medically useless, that is, it keeps the patient alive. It is the patient, in effect, that is being declared useless.
As far as I know there is no place for a patient on a ventilator to get dialysis except in a hospital ICU.
We don't practice medicine by due process. We practice by evidence and experience. It sounds as if the doctor has given a good trial of ventilator support and added dialysis in order to give the patient time to heal. But the heart hasn't healed, the kidneys haven't healed, and the brain is not causing the patient to breathe on her own. And the side effects are bound to be adding up.
I've covered the probable course at my blog.
Thanks for contributing. Perhaps. But I don't think the principle should be that these actions can be taken unilaterally. If there is a bona fide dispute, it should be settled openly by a dispassionate third party, meaning a judge, with full due process rights.
Kevin,
My response is too long for a comment box so please read my post here.
New developments here.
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