Wednesday, April 29, 2015

A Real Thrill and Honor: Empower Texans' Citizen Profile

This is me with my daughter, Lucy.

I am really honored and thrilled to be the subject of a Citizen Profile by Empower Texas! 

Here's a snippet of it:

As a constitutional conservative, fiscal issues are important to Marks. But she’s primarily focused on the pro-life movement in Texas and its foundational importance to the liberty movement. “Without the right to life,” Marks emphasized, “nothing else matters.” But the pro-life movement isn’t just about protecting the young—it’s also about protecting the elderly. 

“I am particularly concerned with end of life or denial of care issues, which broadly comes under the Texas Advance Directive Act (TADA). Last session I testified against SB 303 to try and defeat it.” Conservatives in Texas were split on the issue, in part because the bill contained troubling provisions that others in the pro-life community had allegedly overlooked. 

Marks noted, “So many well-meaning pro-lifers have been led astray on what the true pro-life position is… It’s not the place of a doctor or hospital to refuse care for a patient when refusing that care will result in death and is against the family’s wishes. We shouldn’t starve sick and ill patients to death because a doctor or hospital has decided their life is not worth living…And yet it happens.”

Marks and other critics of the system point out that a doctor should have the ability to refuse treatment, but the family should be able to transfer the patient to another facility. Currently, an “ethics board” at the hospital unilaterally determines the fate of patients. The process lacks a legal remedy for families, effectively denying patients due process.

Marks provided a contrast; “An individual convicted of murder has more rights and appeals than an ill patient in a hospital…that’s just plain wrong.” 

Please go onto their website and read the whole thing. I am very proud of my political heritage and how I was raised. I am very proud to be a part of the pro-life movement working to help save lives at the beginning of life. But also I am just as proud, if not more so, to be working as much as I can (which is not really all that much with all the hats I wear), with so many others to protect the access and right to life-sustaining care among the elderly and ill and fighting against "the Third Path" to euthanasia. 

So, thank you to Empower Texans and Ross Kecseg for the excellent write-up.

Thanks for reading!

Thursday, April 23, 2015

HB 3074 Has Been Significantly Amended & Can Be Supported as an Incremental Improvement - UPDATED

What a difference a week makes! I am very pleased to report that many of the concerns so many raised at the hearing and in other venues about HB 3074 have been met and it is worthy of support as a true incremental improvement over existing law. The new Substitute Bill, which is not yet available online, can be supported as an incremental improvement to the Texas Advanced Directives Act ("TADA"). 

Let’s jump right in and I will try to keep this as short as possible while still giving you bill text and substance to analyze. This is my own analysis and viewpoint, but I am very excited about what has happened here and I'm so grateful for those who made this happen.

The original bill included the following exceptions to providing artificially administered nutrition and hydration (“AANH”) read as follows:

SECTION 5.  Section 166.046(e), Health and Safety Code, is amended to read as follows:
(e)  If the patient or the person responsible for the health care decisions of the patient is requesting life-sustaining treatment that the attending physician has decided and the ethics or medical committee [review process] has affirmed is medically inappropriate treatment, the patient shall be given available life-sustaining treatment pending transfer under Subsection (d).  This subsection does not authorize withholding or withdrawing pain management medication, medical procedures necessary to provide comfort, or any other health care provided to alleviate a patient's pain.  The patient is responsible for any costs incurred in transferring the patient to another facility.  The attending physician, any other physician responsible for the care of the patient, 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), except that artificially administered nutrition and hydration must be provided unless, based on reasonable medical judgment, providing artificially administered nutrition and hydration would:
(1)  hasten the patient's death;
(2) seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the treatment;
(3)  result in substantial irremediable physical pain, suffering, or discomfort not outweighed by the benefit of the provision of the treatment;
(4)  be medically ineffective; or
(5)  be contrary to the patient's clearly stated desire not to receive artificially administered nutrition or hydration.

(A note about reading draft legislation: anything underlined is new text being added to existing law. Anything crossed out in brackets is what current law says that is being removed if this bill passes. Anything that is just plain text, no underline, no cross out, no brackets, is how the law reads currently.)

Those of us who opposed the original (and the first Committee Substitute) bills were concerned about this very broad, subjective language that allows for “quality of life" determinations to be the basis of withdrawing care. That is what is called “passive euthanasia” and it happens here in Texas. I described this in my prior post on HB 3074.

Today I received word that a compromise has been reached. The Agreement, which has already been publicized, is as follows:

Now, while I cannot link to the Substitute Bill because it is not yet online, I can show you that this is how those exceptions now read: 

I hope that you can immediately see the big difference in the language and appreciate how much effort has gone into changing some words that have important meaning and upon which lives depend. Those listed in the letter above are to be thanked as well as those listed in Texas Right to Life's press release:

In addition to Representative Tan Parker, others who helped Representative Springer are to be thanked: Representative Bryan Hughes (R-Mineola) who serves as the Pro-Life Whip in the Texas House, Representative James Frank (R-Wichita Falls), Representative Dan Huberty (R-Houston/Kingwood), Representative Stephanie Klick (R-Fort Worth), and Representative Richard Raymond (D-Laredo). We are very grateful for their diligence and time spent to facilitate changes to HB 3074.

Let me address what the revised wording accomplishes in my own view. With regard to the second exception, "be medically contraindicated such that the provision of the treatment seriously exacerbates life-threatening medical problems not outweighed by the benefit of the provision of the treatment" is much more narrow and precise than "seriously exacerbate other major medical problems..." Withdrawing AANH how has to be in those rare circumstances, for example, where a person's body simply cannot assimilate the AANH any longer. That does happen. 

The third exception is probably the most important change. The bill has gone from allowing the withdrawal of AANH when it the doctor believed it caused "discomfort" or "suffering" (which was not necessarily limited to only physical suffering since physical did not precede suffering, but only preceded pain, thereby opening the door to "quality of life" determinations) to requiring "substantial irremediable physical pain..." 

The fourth exception was also problematic. Originally, it read "be medically ineffective" but that was open to many interpretations especially for a situation where, perhaps, the patient can assimilate food, but is otherwise, for example, dying of a terminal condition or is in a coma. A doctor could argue that the AANH is not medically effective - at reversing the underlying condition. This, too, could open the door for "quality of life" judgments. Now the language is very clear that it must be "medically ineffective in prolonging life." Of course, the withdrawal of AANH will almost always terminate life or hasten death faster even in someone who is otherwise afflicted with some serious illness or injury. This provides clarity.

Another amendment I like to the Committee Substitute is this paragraph (there was a version of it before, but it did not require the medical records, and, of course, the exceptions are more narrowly written now):

I like very much that the 10-day rush to find another facility does not begin until the medical records are provided. In the past, it has been difficult to get medical records in the short time given to transfer. I also like that this paragraph indicates that if a willing provider is found that treatment will continue past the 10 days. 

Unfortunately, the law still allows for withdrawal of AANH and other life-sustaining care after the 10 days if a facility is not found. And, there is still only 10 days unless the facility just decides to give you more time, although you can still go to court and ask for more time (if you meet your burden there; it is not an automatic extension of time.)

I expressed concerns about the lack of enforcement mechanism in the bill. That is not explicitly addressed in this particular bill. However, if the doctor or facility do not follow this procedure that HB 3074 amends, under Texas Health & Safety Code 166.045(d) they lose their immunity - which is the case under current law:

Under current law, there is a sparse process, medical records are hard to obtain, and there are no procedures for protecting a patient from the withdrawal of AANH or other life-sustaining treatments. It can be done for any reason, including "quality of life" reasons. While there was the potential for losing immunity under current law, there was not much in the way of protection that was afforded a patient that lent itself to being enforced. 

Likewise, if the original exceptions had remained and had become law, they were open to so many interpretations that one could never really say that the procedure was not followed and the doctor or hospital could never lose immunity. Thus, there would be no enforcement mechanism. 

Now, with these narrowly drawn exceptions that are not so open to just any interpretation and a deadline that does not start to run until medical records are obtained as part of the process under .046, I believe that there is an enforcement mechanism through a provision already in the law. 

I confess that it is unclear to me, however, if non-compliance with Section 166.046 can be challenged during the process to request more time, if that could be a means to obtain more time, or if that would have to be a separately filed (and, hopefully, simultaneous) lawsuit. Sometimes the procedural aspects of new law take time to work out when they are not addressed in the law. Hopefully, this will not have to be used often, but I am glad that it is there just in case. There must always be checks and balances.

Either way, now there is a process to limit cases where AANH and other life-sustaining treatment are withdrawn against a patient's wishes. That combined with existing law mean a doctor and/or health care facility can be civilly and criminally liable for doing so if they do not follow the much more narrowly tailored process, including narrowly worded exceptions allowing for that withdrawal. That is, if this bill passes and becomes law.

I am very gratified that the recommendations of Texas Right to Life were used for these amendments. As said in the release

While Texas Right to Life will continue to pursue patient protections and larger reforms to the Texas Advance Directives Act, limiting the circumstances in which food and water can be withdrawn is progress. Representative Springer considered our decade of experience as the only organization that helps patients and families facing futile care judgments; he heard our concerns and those of many others about the pitfalls of broad language, accepted our changes, and brought aboard the other stakeholders.

I have said before that Texas Right to Life is the only pro-life group that works to help patients navigate this process and has the most experience in the trenches. They know how the process works in reality and are in the best position to gauge what is real reform and how it would most likely be used versus what is merely aspirational. 

UPDATE: The bill passed out of the State Affairs Committee this evening. It will now have to be brought up for a floor vote in the House. Of course, then it has to find its way to the Senate, be passed there, etc. It has a long ways to go. 

There are still many problems with TADA that are not addressed by this bill, but it was always intended to be limited in its scope. I have detailed these problems in my prior posts and they were discussed in much of the testimony at the hearing on this bill. But I am so very happy to say that there is finally something that we can support as truly incremental improvement to TADA. This is an important step and I hope just the first of many, many more. 

One final note, I really do think that all of you that testified against, called, and otherwise helped get the word out made a difference. It is no secret that these negotiations were hard. This is a very, very difficult issue. But some very big progress was made and that was no accident. So, thank you. 

And, as always, thanks for reading!

Thursday, April 16, 2015

HB 3074: What It Is & My Written and Oral Testimony Against It

Hello! Yes, it's been a while. Let's catch up.

I had the opportunity to attend Mass at St. Mary's Cathedral prior to testifying.

I'm fresh in from Austin where I testified, as did the majority of those who testified, AGAINST House Bill 3074. What is this bill? Read the text here and follow its status. 

Now, to warn you, there is a committee substitute that was offered, but it has not been released to the public yet. I have read it and my testimony was based on the substitute. It was no better.

HB 3074 is basically a narrower version of SB 303 from last session, if you will. (And, there are the same moral problems with it as well. I have already written about that a great deal in prior posts.) HB 3074's proponents, among them certain "pro-life organizations" and the Texas Catholic Conference of Bishops, say that it would prohibit doctors and hospitals (who can affirm a doctor's decision to terminate this life-sustaining care) from withholding artificially administered nutrition and hydration. The problem is that the exceptions where AANH can be withdrawn are so broad, that the bill immediately takes away any alleged protection that its proponents says it offers. In short, it is a net ZERO gain for the patient. 

What it would do is codify into law what doctors and hospitals are already doing, that is, basing their withdrawal of care, including AANH on "quality of life decisions." That is, the doctor and hospital will decide that their opinion is that the patient has no quality of life and that he's basically, "better off dead." That is the net result of what they do. Don't believe me? Read on. 

Now, some proponents claim that doctors do this - perhaps in their view, only do this - when the doctor's conscience is troubled by continuing care that the doctor deems is causing more harm than good to the patient. My experience is that that is not the case. In the case I worked on recently, the doctors never talked about their consciences being troubled or that the care being offered was doing more harm than good to the patient. They only said that his quality of life was poor and care should be withdrawn.

But, for the sake of argument, let's suppose there is a case (and they can happen, although the circumstances are very specific and therefore a tiny percentage of these cases), that a person's condition is so very poor that his body can actually no longer assimilate nutrition and hydration anymore - perhaps his stomach or lungs are filling with fluid because his body simply cannot digest or process the nutrition. In that case, AANH is doing more harm than good. It would be morally legitimate to withdraw it. Bishop Gracida has recently written about this.  

Let's say that the family is not ready to make that decision and the doctor's conscience is truly being pained by continuing this care. Or, let's say that there are situations, like the situation I describe below, where there is no harm in providing the AANH to the patient, but let's pretend that the doctors had conscientious objections to continuing any care for this patient anyway. What happens in this situation in Texas? The doctors say they want to withdraw care. If the family objects, they get a hospital ethics committee hearing, which usually rubber-stamps the decision of the doctor. Care can then be withdrawn in 10 days unless the family finds another facility. 

If a doctor does not want to continue care - for whatever reason - in Texas under law he can choose to withdraw life-sustaining care and kill the patient. Why must it be that way to "protect his conscience"? Why not just transfer the care of the patient to another doctor or facility? Why this process whereby you have an unreasonably short deadline to transfer the patient because a doctor has decided this life is not worth saving? Conscience can be protected without killing a patient. I recently put this question to a doctor that advocates for this system and she never responded with an answer. There is no answer. It's absurd but with deadly results.

Back to HB 3074. Besides my written testimony, I also testified verbally and it varied some based on what had been said before me and questions I had heard the committee members ask. Many testified about this bill. By our count, a significant majority were against. You can see the entire State Affairs Hearing here.  Scroll down to the 4/15/15 hearing that began at 12:25 p.m. Click on "State Affairs" and the video will start in another window (which is why I cannot give you a more direct link). Then you can just "fast forward" to the start of our particular bill.

There were several bills heard that day. The testimony concerning HB 3074 starts at 4:40 (that's 4 hours, 40 minutes.) It is worth your time - especially if you are going to advocate for or against this bill - to watch the entirety of the testimony. It goes until 7:46. My testimony is at about 6:12.   

Many, many dedicated, faithful, and smart people testified against this bill and I am so honored and proud to know them. Many have become my very good friends over the last two sessions and I am thankful for them. Again, watch all of the testimony. Each person testifying against had very good points to make and made them in different ways that shed more and more light on the substance of the bill and it's problems

For those wondering, yes, there are good bills introduced that would amend TADA in substantive ways. 
  • HB 2949 by Representative Stephanie Klick & SB 1546 by Senator Charles Perry is a DNR Consent Bill - that is, you would have to give your consent prior to a "Do Not Resuscitate" Order being put in your file. That is not the law currently. DNRs are slipped into patients' files without their knowledge or consent. This allows the hospital to NOT resuscitate a patient. How about that?
  • HB 3414 by Representative James Frank & SB 1163 by Senator Kelly Hancock. This reform to current law (Chapter 166.046 of the Health & Safety Code) would limit the statutory ethics committee process to only be used to withdraw treatment that is physiologically futile. This bill would also clarify that treatment decisions cannot be based on discriminatory judgments against persons with disabilities, the elderly, and terminally ill patients.
However, these bills have not been set for a hearing at this time and time is running short in the session. Only the powers that be in the Texas Legislature can set the bills for hearing....

But know this - just passing anything will not do. The chairman of this committee made it abundantly clear that he just wants to get it over with and not have to return to this issue each session. (For the record, this particular individual is not the only person addressing this issue. Each session the committee make-up changes. Each session these bills are assigned to different committees. But his statement was telling and we should take heed.) There was much talk about "incrementalism" and isn't this just a little better than the status quo? No, it's not. But at least this committee chairman wants to "just do something" to say that it's been done and not deal with it again. That tells me that just passing something that is inherently flawed and "fixing it later" is not politically feasible. The legislature will just tell us later that "the matter has been dealt with." Remember, TADA has been a deeply flawed law for about 15 years. It has not yet been amended to address these flaws yet, although efforts are made each session. A poor effort is a wasted effort - especially when the poor effort changes nothing.

And with that lengthy introduction, here is my written testimony. 

Testimony in Opposition to HB 3074
(and the Committee Substitute)
By: Kassi Dee Patrick Marks, JD

I submit this written testimony in opposition to this bill. In the simplest of terms, it is meaningless as reform. As with the current state of the Texas Advance Directives Act, there are still no patient rights protections provided in this bill, there is still no due process for the patient or his or her family, and there is absolutely no enforcement mechanism to make sure even the meager, largely symbolic (and inconsistent) changes (but I would not call them reforms) are followed. I cannot see how this bill would prevent patients from being starved or dehydrated to death – including during and after the 10-day deadline – to find a new facility.

The reform of TADA is needed and necessary. Recently, I attended a medical ethics committee hearing at a hospital. I sat through more than an hour of “testimony” where three doctors explained why they wanted to end the life of an ill patient before a board that rubber-stamped their decision. The family sat and listened to the doctors repeat at least a dozen times variations of: “He has no qualify of life.” The doctors had no stated or implied conscientious objections to continuing care; they just simply did not see the point in continuing to care for this patient. Meanwhile, the patient’s family pleaded for more time for their patient to respond and to find another facility. On that day, it fell on deaf ears. Among the things said to the family by the doctors were the following, and these are direct quotes:

  •      “In nature, when people are immobile this long, they get eaten.” Stated by the neurologist advocating for the termination of this patient’s care and life.
  •       “What we are saying is his quality of life will never change.” Primary doctor recommending termination.
  •       “The person Mr. ___ was is gone because that resides in the brain and that is gone.”
  •       “The person is not going to return.”
  •       “The real action is the person he was…that person is gone and is not coming back.”

Because this person had a poor prognosis at becoming the person he was, the doctors did not want to give more time. This is despite the family reporting seeing improvement, such as turning toward sounds, being startled when something fell and made a loud sound, and sobbing when the doctors discussed amputating his leg in front of him and his family. All of this was dismissed as reflexes by the doctors who proceeded to make the comments above, among other things. This is also despite the growing record of cases where patients recover from a PVS or comatose state years later. The brain does recover. It just needs time.

The doctors also refused to consider in home care for the patient. When the subject was broached, they were silent – they were unprepared for that. Then they all quickly said that was “not in the best interest of the family or the patient” without stating why except for resorting back to the “quality of life” mantra.

I relay this experience to make clear that TADA must be reformed. But it must do so in a way to prevent this sort of thing from being so commonplace. And, it is commonplace. No one among those that are promoting this legislation has ever worked through a medical ethics committee hearing and helped patients navigate this process which is stacked against them.

The substituted version contains changes to Section 5, which would amend Section 166.046(e). While it purports to restrict the withdrawal of artificially administered nutrition and hydration (“AANH”), the vast array of subjective exceptions included, leave this goal unmet.

First, the use of the vague term, contraindicated, in the second exception is problematic. It is undefined and is a medical term that has at least two definitions. See,

Which definition of the term is intended by this bill? The ramifications are important for the patient whose very life depends on it. This provides yet more uncertainty to this legislation, and rather than solving problems, creates more.

But beyond that, if the purpose of this bill, and this language specifically, is to restrict when doctors can withdraw AANH – how does it in actuality do that? 

Who is going to make sure that the doctor has actually determined that AANH is contraindicated for the patient because continuing it will “seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the treatment”? What constitutes an exacerbation or a major medical problem? Those are undefined terms. And would the treatment have to exacerbate more than one major medical problem? The language is plural. If it only exacerbated one major medical problem, is the patient saved from starvation and dehydration? The problems with this bill are legion – even after the revisions.

Another reason the second exception cannot be supported is that it begs the question of why there is a second exception at all when the first exception addresses hastening death of the patient by continuing AANH, which would be a far more restrictive provision. But there is still no enforcement mechanism to ensure that these exceptions are applied correctly.

This third exception concerning “irremediable physical pain or suffering not outweighed by the benefit of the provision of the treatment” is likewise just as problematic. The doctor determines what he cannot possibly know. What level of pain the patient is in can only be known by the patient and whether he is willing to tolerate the provision of AANH to sustain his life should be up to him or his surrogate/family member. This exception continues to allow doctors to make “quality of life” decisions for patients and terminate their lives against their will.

The fourth exception contains the terms “medically ineffective at prolonging life” in the context of the provision of AANH. If the patient has a serious illness and is terminal, then the provision of AANH is not going to cure his illness. It would be ineffective at prolonging his life when compared to the underlying illness. But withdrawal of AANH will hasten a patient’s death and could, even for a terminal patient, ultimately be the cause of death.  This exception is extremely problematic because a doctor can always say that given the patient’s condition, AANH is not going to be medically effective at prolonging his life because of his condition. It is a Catch 22 for the patient and a provision open to abuse.

Again, for this entire bill, as with TADA itself, there is no enforcement mechanism to make sure that these exceptions, even as reworded, are not abused and used for termination of ill/disabled people based on what really amounts to a doctor's determination of whether the patient has a "quality of life" that the doctor deems acceptable or not. Why is the patient/family surrogate not the person making this life and death decision? That is still a foundational problem with TADA that this bill does not even attempt to remedy.

Finally, the new language added to Section 6 which would amend Sections 166.052(a) and (b), which is paragraph numbered 3, creates an internal contradiction or inconsistency with paragraph 5. The new language in paragraph 3 says the facility will continue AANH after the 10-day period unless the same problematic exceptions apply, but then paragraph 5 still says that if a provider cannot be found within 10 days it may be withdrawn unless the family gets a court order. If the purpose of this bill is truly to prevent withdrawal of AANH, paragraph 5 takes that away. This is very important. (It is reminiscent of the bait and switch used last session with regard to SB 303. First, proponents of it included language giving the patient 21 days to find a new facility, then by the end of the proceedings, the substitute bill had the deadline back to 10 days.)

This bill amounts to no reform at all. It is a wasted effort when there is already good legislation introduced which addresses these issues in meaningful, substantive ways. Patients’ lives are at stake and any reform efforts undertaken must be real.

Thanks for reading!!