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Baby Tinslee Lewis and the Texas Advance Directive Act

I was a relieved to hear that the doctors caring for 9 month old Tinslee Lewis decided not to remove her ventilator on Sunday, November 10, 2019. Their decision, most likely due to public outcry, was announced 2 hours before removal was planned. Later in the day, and a local judge issued a restraining order that mandates continuing the ventilator until at least November 22 unless an appropriate transfer to another facility can be arranged.

At first glance, this sounds like several other stories about disputes between the family of a patient and medical professionals who have invoked the provision in the Texas Advance Directives Act(TADA) that allows for removal of life sustaining treatment. However, from what I’ve read and the hospital’s statement, I’m concerned that this time the law may have been invoked based on “quality of life” rather than the futility of the treatment and the suffering it causes.

(Note: I want to be very careful to point out my limits. The following medical and legal information about this case comes from what I’ve gleaned from Facebook, blogs and Twitter posts, as well as a few news articles like this one. I’ve tried to be as factual and accurate as possible. It’s important to understand that I don’t know all the details and that any conclusions I draw are merely my opinion.)

Tinslee has lived her whole life in the ICU at Fort Worth Cook’s Children’s Hospital. She was premature and was diagnosed with a congenital heart defect, Epstein’s anomaly, that in spite of several surgeries led to heart failure and caused her heart to become so enlarged that it damaged her lungs. She’s been on a ventilator since July.

Her doctor or doctors reportedly believe that Tinslee is in pain and suffering. In order to keep her comfortable and to prevent her pulling the ventilator and feeding tubes, they must use paralyzing drugs and sedation. An attending doctor responsible for Tinslee’s care invoked TADA and a hospital committee agreed that the continued use of the ventilator is inappropriate. On October 31, the family was notified that the ventilator would be discontinued at 5 PM on November 10.

I became concerned when I saw the video posted at Texas Right to Life, showing a beautiful girl with apparently healthy skin, reacting to voice and touch. In the video, she doesn’t move her right leg, barely opens eyes and only seems to point her eyes to lower right. Still, the treatments, including sedation, seem to be working and she doesn’t appear to be in distress or pain.

A hospital spokesperson, Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, sent out a statement by email, that is quoted in part by the Fort Worth Star Telegram:

“In the last several months, it’s become apparent her health will never improve,” King said in a statement via email. “Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated. Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.”

And,

“While we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain,” said Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, in a statement. “Removing this beautiful child from mechanical ventilation is a gut-wrenching decision for Cook Children’s physicians and staff; however, we feel it is in her best interest to free her from artificial, medical intervention and suffering.”

(Kaley Johnson, Fort Worth Star Telegram https://www.star-telegram.com/news/local/fort-worth/article237223826.html accessed 11/10/19)

Hesitantly, I find myself second guessing the decision of Tinslee’s doctor(s) to invoke TADA and of the hospital ethics committee to affirm that the ventilator is inappropriate medical care. As I wrote above, I can’t know the real medical circumstances and certainly haven’t examined Tinslee or even read her chart. I’m not a pediatric cardiologist or pulmonologist and may not understand her prognosis as she grows and develops. Has she required chest tubes because of the ventilator? Is she growing? Will a larger body put too much strain on her heart or will growth allow time – and room – for her lungs to heal? Will she be able to have a tracheostomy and would it make her care easier and her more comfortable?

However, there’s no sign that the ventilator itself is causing damage to her lungs and there is evidence that the medication helps Tinslee tolerate the mechanical intervention.

The wording of Ms. King’s statement makes it appear that the doctor(s) decided to end the ventilator treatment based on a perception of her quality of life, rather than on their knowledge of the futility of the treatment and the damage it causes. In my opinion, “quality of life” is a very personal value judgement. As I’ve noted before,

“Although no reason is required by law, in every case I know of the doctor has made it clear that the requested treatment is causing suffering and/or actual harm and violates the First Principle: “Cure when possible, but first, do no harm.”’

The good news is that TADA allows, and Tinslee’s family were able to, access practical and legal assistance.

Ms. King shared a list of 19 hospitals that, as required by TADA, the hospital administration has contacted in an attempt to find other doctors and facilities that will accept Tinslee as a patient. All refused the transfer, apparently agreeing with Tinslee’s doctor (and casting doubt on my conclusion).

TADA also allows the family to seek a delay through the local courts. Texas Right to Life helped Tinslee’s family by providing a lawyer and legal advice. They also sent out a plea on Friday, November 8, asking the public to call and email Cook’s administrators about Tinslee. Several State legislators have also become involved.

Now, Tinslee’s mother and family and the hospital will have another 12 days to try to find someone willing and able to treat her.

Questions still remain: Is there any long term facility that is able to offer the ventilator and sedation that Tinslee needs? Or must Tinslee live sedated and paralyzed in the ICU for the rest of her life?

But there shouldn’t be any question weighing whether Tinslee’s “quality of life” is worth living.

Timeless Frederick Douglas

An excellent essay.
An excellent, timeless quote, that could as easily be paraphrased about elective abortion or euthanasia:
“[T]he constitutionality of slavery can be made out only by disregarding the plain and common sense reading of the Constitution itself; by discrediting and casting away as worthless the most beneficent rules of legal interpretation; by ruling the Negro outside of these beneficent rules; by claiming everything for slavery; by denying everything for freedom; by assuming that the Constitution does not mean what it says, and that it says what it does not mean; [and] by disregarding the written Constitution.”

Hurting patients and families

Facing the life-threatening illness of a loved one is hard enough, without misunderstandings. It’s cruel when people who claim to be helping don’t correct those misunderstandings.
I can’t comment on on Texas Right to Life’s (TRTL’s) recent Facebook post, where the organization is, frankly, spreading falsehoods and perpetuating misunderstandings that are bound to make a difficult process even harder.
The story about the family of Mrs. Carolyn Jones is one I’ve covered before.
I believe that the Jones family could be – should be – reassured about the care and treatment that Mrs Jones is receiving. In my post, today, I would like to further clear up some of the problems in TRTL’s reporting.
Significantly, on April 10, 2019, Mr. Jones testified to the Senate Health and Human Services Committee ( at 52 minutes into the video, near the end) that, on March 8 of this year, after 4 months’ admission, the hospital held what he says was the second ethics committee meeting. After the meeting, the family believes that the hospital informed them that Mrs. Jones needed to be transferred by March 18, or her oxygen, food and water, and dialysis would be stopped.
Why hasn’t anyone told Mr. Jones that withholding or withdrawal of even IV Artificial Administered Hydration and Nutrition (AAHN) is prohibited by the very law he believes should be repealed?
Mr. Jones testified that over the last month, his wife has since been weaned from the ventilator, only needing assistance “sometimes at night.”

I don’t understand why TRTL repeats that a ventilator tube prevents Mrs. Jones from speaking or eating. Mrs. Jones has a tracheostomy in place (the tube we see in the pictures is a feeding tube). The tracheostomy, even when a ventilator is attached, would not interfere with her ability to speak and swallow, with training.

Breathing assistance, AAHN, and dialysis can all be provided by the 3 facilities – and at least one doctor – that have agreed to accept Mrs. Jones as a patient.
TRTL is using the grief of the Jones family to solicit donations and to lobby for a Bill I’ve also written about, SB 2089, that would require “treatment until transfer.”
In this case, the treatment that is disputed is transfer from in-hospital treatment after 5 months to a lower level facility that is able and willing to provide what Mrs. Jones needs.
Comments are closed here. (I just can’t keep up with all the sites.) Please comment on my Facebook page.

Another kind of lawyer joke

“[T]he doctor/bioethics committee thinks the patient should die.” Wesley J. Smith, Esq., Texas Senate Health and Human Services Committee, 4/10/2019 LifeNews.com

Wesley Smith is a rarity among the many lawyers who chased bioethics to the bedside late in the last century: he actually believes in the sanctity of human life and in the right of conscience. I’ve attended and reported on his debates and encounters with proponents of intentional euthanasia. And even happily defended him.

Unfortunately, Lawyer Smith was not above spinning the truth this month when he came from California to once again misrepresent the Texas Advance Directive Act (“TADA,” “the Act,” or “166.___”), an attempt to balance conflicting rights when doctors disagree with a patient or his surrogates about actual medical procedures and treatments that the doctor believes harms the patient.

On April 10, 2019 Mr. Smith gave invited testimony to the Senate Health and Human Services Committee in favor of SB 2089 (Hughes) and
SB 2129 (Creighton). LifeNews.com published part of his testimony online, under the title, “Texas Rule Allows Hospitals to Essentially Euthananize Patients After a 10-Day Notification.”

Mr. Smith doesn’t just contradict multiple Supreme Court rulings since Cruzan (1990) affirming that withholding or withdrawing treatment is not equivalent to euthanasia. Paradoxically, he echoes arguments that anti-conscience activists use to justify abortion on demand, Physician Assisted Suicide and intentional euthanasia by a third party by claiming that the principle of autonomy supercedes “First, do no harm,” or non-malevelence, and the right to conscience.

(You can watch all of Part I and Part II of the April 10, 2019 Health and Human Services Committee meeting addressing SB 2089 by Senator Bryan Hughes and SB 2129 by Senator Brandon Creighton online. Part I includes Mr. Smith’s testimony beginning at 33:00/1:01:10.)

We’ll skip Mr. Smith’s assertion that there is a right to force others to provide everyone medical care in general, not just in emergencies or at the end of life. I’ve covered these assertions and his attacks on the Texas Conference of Catholic Bishops I’m, back in 2007.

Today, let’s just look at his spin on the current version of TADA.

Lawyer Smith uses emotionally weighted terms that aren’t in TADA, such as, “life-extending,” “futile care,” “permitting the institution to force its will on patients and families,” “invidious discrimination,” and “inappropriate care.” He contrasts patient’s “rights” with doctor’s “values,” and is the first that day to raise the specter of doctors willing to kill when patients are “expensive.” And, reflected in the LifeNews.com headline, Mr. Smith flatly says that TADA allows euthanasia – intentional acts to kill patients – equivalent to the administration of injections or medications that he wrote about this week.

As I’ve stated so many times in past WingRight.org and LifeEthics.org posts, TADA doesn’t allow us to remove or withhold care for patients, only treatments that are “medically inappropriate.” There are no futile patients, only futile treatments that cause harm to the patient over and over, without any expectation of reversing organ failure after organ failure.

Mr. Smith also ignores the multiple attempts by the medical and pro-life community and Legislature to improve the law’s timeframe and communication, much as Senator Creighton’s Bill. One example from 2007, SB 439 by Senator Bob Deuell, would have required written notice and an offer of a private ethics consult to take place at least seven days before the hospital committee meeting. That Bill had a schedule for giving the patient or surrogates written information about the dispute process, copies of medical records, and lists of resources. The family would have been given access to the committee meeting, with their own advocates. When the committee agreed that the treatment requested was inappropriate, the family would have receive assistance in searching for7⅞ another doctor or facility for at least another 21 days. I believe that the Bill bogged down in the House because of opposition from Texas Right to Life to any Bill that did not include liability for doctors and the indefinite “treatment until transfer” in this year’s SB 2089.

In the last five minutes of the Part I video, another lawyer, Texas Right to Life General Council Emily Cook, gave us the best clue about the ultimate goal of her organization: “judicial review.

Ms. Cook and Mr. Smith would have every one of these disputes settled by a Court. This is the Texas trial lawyers’ dream: a huge weapon against our State’s tort reform.

Today, the law specifically allows an appeal to a County probate judge when the Committee agrees with the doctor’s decision. SB 2129 allows a request for an injunction in any Court in the County, enabling “judge shopping.” Since it also prohibits the County from charging the patient or his surrogates any fees, the costs would fall solely on the County.

Ultimately, SB 2129 would make it much, much easier to sue the doctor and the hospital, moving Medical decision-making into the courtroom.

Most of the “stakeholders” for patient rights in Texas (including Texas Alliance for Life, Texas Baptist Christian Life Commission, Coalition of Texans With Disabilities, Texas Medical Association, Texas Hospital Association, Catholic Hospital Association, Texas Nurses Association, and the Texas Conference of Catholic Bishops and many others) oppose both of the Bills that Mr. Smith favored. Since SB 2129 would mandate that the County pick up any Court costs and that the judge make his ruling within five days, don’t be surprised if we hear objections from representatives of these parties, too.

So what’s the “joke?”

It could be the ridiculous notion that Lawyer Smith is a mind reader, able to discern the “invidious” motives for the “discrimination” he feels doctors and hospitals routinely practice:

“To fully comprehend the unjust nature of Texas law in this regard, realize that these “futile care” or “inappropriate care” decisions do not terminate treatment because it won’t work, but because it does. It is keeping the patient alive when the doctor/bioethics committee thinks the patient should die.” (Emphasis from LifeNews.com’s transcript.)

He repeatedly comments that physician’s decisions about medically appropriate treatment are subjective and that they (we) might “project their fears and their desires onto the patient” based on our “values,” rather than medical judgement based on repeated, at least once a day examination of the patient, reports by the nurses and staff and our education and experience.

The joke might be that Lawyer Smith volunteered that the indefinite, repeated evaluation and medical decision-making against the medical judgement of doctors would not be “slavery.” I would like to know what Lawyer Smith calls the legal requirement to use one’s body and brain to carry out actions, including writing orders for nurses and other medical staff, against your will.

It might be tragically funny to watch “judicial review” end up with the two sides hiring expert witnesses – doctors – to give the judge opposing views. There’s dark humor in the realization that ultimately the judge would order the original doctor to use her medical judgement to provide treatment – against her best medical judgement.

But the real joke is that “judicial review” risks the unintended consequence of decisions made by judges like the late t Judge George Greer, who Mr. Smith wrote about in this article.

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Texas Advance Directive Act 2019 Legislature

The Texas Advance Directive Act is being attacked in the State Legislature, again, as it has just about every Session for the last 10+ years. In my opinion, one group is doing the bidding of the trial lawyers to destroy Texas’s tort reform by attempting to force every end of life treatment disagreement into the Courts.
Here’s my explanation of the Act, written in 2016, as an “effort to balance” patients’ rights and the rights of doctors to practice Medicine according to their consciences, using our best medical judgement. And here is an example of a previous attempt to truly improve the Act.
The opponents of TADA would force doctors to ignore their consciences to continue performing procedures and writing orders – for nurses and staff to carry out – against our best medical judgement, while faced with the moral distress of continuing acts that hurt our patient, as organ system after organ system fails, faster than we can compensate, prolonging and increasing his suffering and death.
For example, yesterday, the House passed a useless Amendment to a useless amendment to HB 1504, the Sunset review and reauthorization of the Texas Medical Board.
(22) in complying with the procedures outlined in Sections 166.045iand 166.046, Health and Safety Code, fails to make a reasonable effort to transfer a patient to a physician who is willing to comply with a directive.
Amendment No. 5
Representative Toth offered the following amendment to Amendment No. 4:
Amend Amendment No.4 by Toth to CSHB 1504 on page 3, line 25, between “Code,” and “fails”, insert “willfully”.””
The amendment is useless because doctors don’t handle or arrange transfers between facilities; the hospital social services staff and nurses do. The only possible exceptions might be ER docs in outlying areas, transferring to a larger medical center or a rare phone discussion between doctors about the patient’s course after the two separate staffs have worked out the logistics. Neither of these would apply in the TADA cases.
Importantly, how would the accusation of “willfully fails to make a reasonable effort” be made? Could there be more vague terms in that sentence than “willfully” or “reasonable?” (Especially in light of TRTL’s claim that 60 attempts weren’t reasonable in the tragic case recently ruled moot and dismissed by Texas 1st Court of Appeals, covered here and here.) Is this an attempt to criminalize the actions of doctors, an excuse to sue in a Court of law?
After the amendment passed, one of the lawyer lobbyists paid by Texas Right to Life tweeted a mean little remark:
The lawyer said that doctors who begin the process in TADA “set the 10 day count and sit on their hands.”
I understand that he never had to ask (to order) a nurse to cause pain to a dying patient, but he should understand that doctors don’t “sit on their hands” during the waiting period. We still perform those life sustaining procedures, write orders, and interact with the patient and family.
In order to push their view point they oppose not only other pro-life organizations, but the Texas Catholic Bishops, the Texas Baptists, and Texas Medical Association. Bills such as SB 2129 or SB 2089 would destroy TADA and undermine Texas’ tort reform.
Of course, once in the Courts, the lawyers would have to hire doctors to testify and the judges would decide between the two sides and order doctors to act against their consciences.
That, or lawyers and judges would be placed in the position of practicing medicine: writing medical orders for nurses and staff to carry out.
In the long run, the risk of civil and even criminal liability of caring for patients at the end of life would drive most doctors away from not only intensive end of life care, but increase the risk for any of us who care for trauma, oncology or geriatric patients.

Edit 19 April 2019 BBN: Comments are disabled here. Please comment at my Facebook page, “Beverly Nuckols.” https://m.facebook.com/story.php?story_fbid=10218835564657861&id=1163711361&refid=52&_ft_=mf_story_key.10218835564657861%3Atop_level_post_id.10218835564657861%3Atl_objid.10218835564657861%3Acontent_owner_id_new.1163711361%3Aoriginal_content_id.2226941544065344%3Aoriginal_content_owner_id.110756395683880%3Athrowback_story_fbid.10218835564657861%3Apage_id.110756395683880%3Astory_location.4%3Astory_attachment_style.share%3Apage_insights.%7B%22110756395683880%22%3A%7B%22role%22%3A1%2C%22page_id%22%3A110756395683880%2C%22post_context%22%3A%7B%22story_fbid%22%3A2226941550732010%2C%22publish_time%22%3A1555527649%2C%22object_fbtype%22%3A32%7D%2C%22actor_id%22%3A1163711361%2C%22psn%22%3A%22EntStatusCreationStory%22%2C%22sl%22%3A4%2C%22dm%22%3A%7B%22isShare%22%3A0%2C%22originalPostOwnerID%22%3A0%7D%2C%22targets%22%3A%5B%7B%22page_id%22%3A110756395683880%2C%22actor_id%22%3A1163711361%2C%22role%22%3A1%2C%22post_id%22%3A2226941550732010%2C%22share_id%22%3A0%7D%5D%7D%7D%3Athid.1163711361&__tn__=-R

“KITTENS,” before humans

I didn’t believe the opinion article by Tony Perkins of the Family Research Council, that claimed that a Democrat who voted against last month’s S311, the “Born-Alive Abortion Survivors Protection Act,” had then submitted a Bill to prevent the euthanasia of kittens used in scientific research. I assumed it was a spoof or hyperbole.

KITTENS before babies

But no, a simple search proved that Oregon’s Dem Senator Merkley absolutely opposed the Act, even posting a press release and giving his reason in Twitter, @SenJeffMerkley

The Act would not have criminalized anyone. It would only reinforce and clarify the 2002 “Born Alive Infant Protection Act,” by requiring the doctor performing an abortion to provide the same care for a born infant who is unexpectantly delivered alive during a late term abortion that would be provided to any other child in the same circumstances.

The CDC estimates that about 150 babies are born alive during abortions, each year, while acknowledging that the estimate may be low.

Merkley came up with a cute name for his Bill: “Kittens in Traumatic Testing Ends Now.” It’s a shame he didn’t give as much thought to human babies.

“KITTENS,” before humans

I didn’t believe the opinion article by Tony Perkins of the Family Research Council, that claimed that a Democrat who voted against last month’s S311, the “Born-Alive Abortion Survivors Protection Act,” had then submitted a Bill to prevent the euthanasia of kittens used in scientific research. I assumed it was a spoof or hyperbole.

KITTENS before babies

But no, a simple search proved that Oregon’s Dem Senator Merkley absolutely opposed the Act, even posting a press release and giving his reason in Twitter, @SenJeffMerkley

The Act would not have criminalized anyone. It would only reinforce and clarify the 2002 “Born Alive Infant Protection Act,” by requiring the doctor performing an abortion to provide the same care for a born infant who is unexpectantly delivered alive during a late term abortion that would be provided to any other child in the same circumstances.

The CDC estimates that about 150 babies are born alive during abortions, each year, while acknowledging that the estimate may be low.

Merkley came up with a cute name for his Bill: “Kittens in Traumatic Testing Ends Now.” It’s a shame he didn’t give as much thought to human babies.

“KITTENS,” before humans

I didn’t believe the opinion article by Tony Perkins of the Family Research Council, that claimed that a Democrat who voted against last month’s S311, the “Born-Alive Abortion Survivors Protection Act,” had then submitted a Bill to prevent the euthanasia of kittens used in scientific research. I assumed it was a spoof or hyperbole.

KITTENS before babies

But no, a simple search proved that Oregon’s Dem Senator Merkley absolutely opposed the Act, even posting a press release and giving his reason in Twitter, @SenJeffMerkley

The Act would not have criminalized anyone. It would only reinforce and clarify the 2002 “Born Alive Infant Protection Act,” by requiring the doctor performing an abortion to provide the same care for a born infant who is unexpectantly delivered alive during a late term abortion that would be provided to any other child in the same circumstances.

The CDC estimates that about 150 babies are born alive during abortions, each year, while acknowledging that the estimate may be low.

Merkley came up with a cute name for his Bill: “Kittens in Traumatic Testing Ends Now.” It’s a shame he didn’t give as much thought to human babies.

Please comment on my “Beverly Nuckols” Facebook page.

Trust me, I don’t have a conscience (yes, THAT again)

Speaking of CS Lewis’ “conditioners” in my last post, a small group of “philosophers and bioethicists” got together in Geneva, Switzerland last June and came up with a “Consensus Statement on Conscientious Objection in Healthcare.”

On the “consensus” from less than 20 self-selected individuals, we’re supposed to advocate the move from shaming doctors for objecting (to acts that have been considered shameful by Western society since Hippocrates) to some sort of judgment by tribunals.

From the BioEdge.org blog:

“After a special workshop held at the Brocher Foundation in Geneva, Switzerland, over a dozen bioethicists signed a ten-point“Consensus Statement on Conscientious Objection in Healthcare.” The group stated that “healthcare practitioners’ primary obligations are towards their patients, not towards their own personal conscience”. As a consequence, “healthcare practitioners who are exempted from performing certain medical procedures on conscientious grounds should be required to compensate society and the health system for their failure to fulfil their professional obligations by providing public-benefitting services.” They also stated that “Medical students should not be exempted from learning how to perform basic medical procedures they consider to be morally wrong.”

What’s to enforce those guidelines if the physician has no conscience? What place does “should” or “ought” – words that are flung about in the “Consensus” – have if the conscience is to be dismissed?

As Wesley Smith points out  at his blog on National Review, any objectors would be re-“conditioned.” The “Consensus” demands that  doctors not only be forced to explain their rationale, perform “public-benefitting services” (in addition to their jobs as doctors), and teach medical students those morally controversial procedures, they would be sent to re-education classes.

Oh, and they might not be able to get a job in the first place if they aren’t morally pure – excuse me – able to “fulfil (sic) their professional obligations,” according to this little club:

“This implies that regional authorities, in order to be able to provide medical services in a timely manner, should be allowed to make hiring decisions on the basis of whether possible employees are willing to perform medical procedures to which other healthcare practitioners have a conscientious objection.”

I sincerely doubt that any representatives were invited – or allowed – to attend. (At least, that’s my experience.)

More on “conscience” by searching the “Categories” on this page.

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