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Futile Care

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Why does TRTL lie? (UPDATE)

I can’t tell you why, but it’s true: Well below their “Donate Now” banner, Texas Right to Life (TRTL) is shamefully spinning another one of their false stories.
Just as they lied on their website that Chris Dunn was “slain by his doctors,

they now post that a woman, Mrs. Carolyn Jones, had to be “rescued” from hers, “racing” to another facility “in the middle of the night.”

Okay, it’s night in that picture. That and the proper names are the only things they got right.
Mrs. Jones wasn’t “rescued” from the hospital that has been giving her excellent care for over 6 months. Nor were her doctors and nurses “surprised.” that she was able to breathe on her own. After all, they were the ones who weaned her from the ventilator over a month ago.
What was expected was that Mrs. Jones would be transferred out if the hospital where she’s been admitted since November, 2018 to a more appropriate, lower level of nursing care two months ago.
On April 10, Mr. Jones testified to the Texas Senate Health and Human Services Committee that, thanks to the hospital doctors, his wife now needed the ventilator only “occasionally at night.”

The family were given notice that they needed to transfer Mrs. Jones in March. They’ve had another doctor and three facilities capable of providing the treatments she needs waiting to accept Mrs. Jones.

When the family of a hospitalised patient refuses to allow her to be transferred to a more appropriate treatment facility, the attending doctor has no legal means other than the 166.046 process laid out in the Texas Advance Directives Act (TADA). This is the legislation that has been called the “Futile Care Law” in the past, but TRTL likes to call it the” 10 Day Rule,” now, in spite of their rejection of effort after effort, etc., to expand the time frame and increase transparency and assistance. This is the issue that led to the rebuke (.PDF) of TRTL by the Texas Conference of Catholic Bishops and gleefully reported by the liberal press in Texas
The Jones family are real people, scared and hurting. Mr. Jones somehow was misled to believe the lie that “food and water” would be removed. I would have thought that at least one of the many, many lawyers at TRTL would have assured him that that is not legal under Texas law.
Instead, the Jones family’s fears – and your compassion – are being used as a means to TRTL’s political – and fundraising – ends.

And now, TRTL – in direct competition with – and with absolutely no mention of – Mrs. Jones’ family’s GoFundMe campaign – has been raising money in Mrs. Jones’ name. They state that the funds will be used for (TRTL) lawyer’s fees in addition to Mrs. Jones’ healthcare needs and that “excess” funds will go to help (TRTL’S) efforts for other patients.

I hope that TRTL’s money will also be used to pay for the very large hospital and doctor’s bills that the Jones family will receive. While there’s a chance that Texas Medicaid will pay for three months of medical bills, retroactively, Medicare doesn’t pay for hospitalizations over 90 days and has a 20% co-insurance (co-pay).

That’s bound to have added up in over 6 months.

We’ll just have to trust that TRTL won’t lie again.

Beverly B Nuckols, MD

Edit, Updated information:

One of the bloggers has told us more about that “rescue.” (Or today’s story, anyway.)

TRTL put her in a private ambulance and took her to *another ER,* one that couldn’t provide dialysis, so they then transferred her somewhere else.

There were comments about the first Hospital refusing transfer — no, refusing to be complicit with “dumping” a patient. Discharging to without ( or even with) acceptance of the transfer from the docs at the other facility is highly irregular and likely illegal.
Much has been said about funding. Yes. It appears that Medicare funding ran out, so no longer paying. 90 days per admission, with an extra 60 days over, under certain conditions.

About that Medicaid funding: I don’t know the limits of the mandatory asset tests, but the yearly income level is $60,000. One way to adapt is to spend money on medical costs.

Medicare makes it difficult to navigate the private pay process. When we had some question, we got informed consent, promise to pay, then performed the service, filed with Medicare, waited to be denied, then tried to Bill the patient. The risk is always a charge of “fraud and abuse.”

The same thing would have happened if the hospital had privately charged for Dialysis.

(5/20/19, BBN)

The Ethics of Texas’ Advance Directive Act

Laws relating to medical ethics debates are generally behind medical advances.

Unfortunately, those debates often become emotional and heated, and the individuals who are affected often face the “hard questions” of ethical dilemmas while reacting to life and death emergencies. When law-making is controversial, it’s best to go back to the basics of ethics for guidance: the inalienable rights to “Life, Liberty and the Pursuit of Happiness,” the Declaration of Independence, and Constitution.
All laws limit our rights, but good laws are based on the fact that these inalienable rights are negative rights: they are meant to prevent one person – or the government – from infringing the rights of another. Ethical laws strike a balance between seemingly conflicting rights. They prohibit or punish harmful actions, but they don’t compel a desired action against the will.
However, since there is a hierarchy of rights (the right to life trumps the right to liberty and property, liberty trumps property, etc.), there are very rare circumstances when it is appropriate for laws to compel individuals to act for the benefit of another. These laws should only go so far as to protect the life and freedom of the vulnerable patient or client, for a limited time with the goal of allowing safe transfer of the obligation to someone else.

For instance, parents are required to care for and protect their minor children since they are helpless and unable to legally consent or make contracts. And State laws require that doctors and lawyers be licensed, obtain certain levels of education, and follow specific, positive actions when they wish to withdraw from a professional relationship with or refuse the request of a patient or client.
That brings us to the controversy over the Texas Advance Directive Act of 1999 (“TADA” or “the Act”). In addition to describing “Advance Directives to Physicians” (also known as a “Living Will), TADA also attempts to outline the procedure for resolving any disagreement between a doctor and patients or their surrogates regarding medical treatments, especially concerning end of life care.
When I first read the Act, I (naively) thought it was malpractice protection for doctors who did not want to withdraw or withhold care. There have actually been a few “wrongful prolongation of life” lawsuits against doctors who – knowingly or not – used CPR when the patient had a Living Will.
Most of the time, however, TADA is invoked when the attending physician “refuses” a request to actively administer medical treatment that he or she believes is medically inappropriate. The steps laid out in the law involve the doctor’s notification of his refusal to the patient or the surrogate, the rules for assisting with transfer of care to another doctor who believes the treatment request is appropriate, and asking for a medical or ethics committee to be convened at the hospital. If no other willing doctor can be found and the committee agrees with the doctor, the treatment can be withheld or withdrawn (after 10 days). During that time, full life-sustaining treatment must continue and the hospital is required to provide medical records and to actively assist in looking for another doctor and/or hospital.

The law does never allow patients to be killed by intentionally stopping breathing. The law does prohibit withholding of pain medicine or comfort care and the removal of “artificially administered nutrition and hydration.”
Medical judgment is how doctors utilize our education, experience, and consciences as we plan and anticipate the effect of each medical intervention or treatment. “Life sustaining treatments are not “basic” or “usual care.” Nor are they one-time events without consequences. The interventions require a physician to administer and maintain. They must be monitored by observation and tests, and adjustments need to be made intermittently so that the treatment is effective and not harmful. They may lead to further more invasive and aggressive interventions and the need for the skills of other doctors in other specialties.

In some cases, patients and their advocates report trouble finding other doctors willing to provide the treatment that the first doctor thought was inappropriate. In my opinion, that difficulty is due to physicians’ common education and shared experiences – to medical reality, not ill intent.

Texas law is clear that only doctors may practice medicine by diagnosing and treating patients directly or “ordering” other medical personnel. Although TADA outlines specific duties for hospitals and hospital medical or ethics committees who determine whether or not the care is medically inappropriate, the process can only be invoked by the “attending physician” who is being asked to act against his medical judgment. The committee acts as a safeguard, to uphold medical ethics and the standard of medical care. In a formal meeting, the committee members review the case and either agree or disagree with the doctor as to whether he or she is correct about what is “medically inappropriate” treatment, for the patient.

Unfortunately, the Act has become known as the “Texas Futile Care Law,” and divides even the pro-life community. One side claims that doctors, hospitals and hospital committees are biased and should not be allowed to determine medically inappropriate care, and that doctors are obligated to give any and all desired treatment “until transfer.” Others want each case to go to court, where lawyers, judges and juries would settle every difference of opinion about “medically appropriate treatment.”

Ultimately, even the lawyers would need to consult doctors, unless the judges start writing orders for doctors, nurses, and medical professionals.

Our laws normally prohibit actions and only very rarely compel people to act. Under the conditions laid out in TADA, it is possible that the doctor can be forced to act against his medical judgment, but only for a limited, stated period of time. TADA is an attempt to balance conflicting rights: the patient’s wishes for medical intervention with liberty of the physician to practice medicine to the best of his judgment and conscience.

(Edited 03/11/18 to add a missing quotation mark. BBN)

Vanity: I’m Published in Fort Worth Star-Telegram (Texas Advanced Directive Act)

I submitted an editorial to the Fort Worth Star-Telegram which they have titled, “Nuckols: Navigating healthcare’s difficult decisions.” It was published March 28, 2013, but I can’t tell whether it’s in the dead-tree version.  (In case you ever wondered, no one notifies the author when a piece like this or a letter to the editor is published. I think it increases their readership, all of us checking back to see whether we made it to print.)

The paper had published a very biased and poorly written op-ed calling the Texas Advanced Directive Act, “the Texas Futile Care act.” Although the Star-Telegram corrected this one error, the piece has unfortunately been picked up by several other websites.

The editors edited: giving the piece its name and changing all my references to “TADA” and “the Act” to “the act.” They also did some research and posted a little biography that I was surprised to see. (I wouldn’t have been foolish or brave enough to give these credentials without checking in with the people they might have affected.)

I do wish that the paper had researched the original article more thoroughly. It’s so bad that I decided not to link to it.

I was privileged, back in 2006 and 2007, to sit in on a couple of year’s worth of the meetings that I mention in the article. We all worked diligently to come up with some compromise other than going to court on every disputed case. Because our compromise fell apart at the very last minute, families are still faced with only 48 hours between the notice that an ethics committee has been called and ten days’ notice if transfer is pending. I hope we can come to an agreement in 2013 to make these decisions a little easier, while keeping them out of court and in the realm of physicians’ medical judgment.

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