I was asked about the #BabyTinslee case and what we should do, what can we do, in the disputed cases.
We need to educate more. People don’t understand basic medical ethics in this day of “choice.”
Autonomy doesn’t supersede nonmaleficience. In other words, the First Principle of medicine, “Cure when possible, but first do no harm,” always should guide us, rather than “wants” or “choice.”
In the end, doctors are the ones actually performing the acts and we’re most likely to understand the projected outcome. We benefit from oversight by colleagues and the community, both informally and in the process prescribed by the Texas Advance Directives Act.
Some people demand that every one of these cases go to court, for “due process” and “cross examination.”
But judges and courts can’t be as knowledgeable as doctors are. Their decisions are necessarily informed by dueling (paid) lawyers and (hired) medical experts.
In all the cases that have gone to court, the family has had quite a lot of notice, but the 48 hour notice before the committee meeting is perceived as too abrupt, especially since the relationships all appear to be adversarial by that point.
(And who could get your family to a meeting in 2 days?)
The 10 days isn’t thought to be long enough to arrange a transfer, either. Again, in many of the Court cases, the attempts to find another doctor willing to accept the patient’s care has begun before the committee meeting.
Doctors acknowledge the great trust and privileges we are given by agreeing not to abandon our patients. When we have a disagreement with a patient or surrogates (usually a familymember), we accept that we must continue treatment for a period of time. But not indefinitely.
If we could get the reforms that have been attempted to lengthen the statutory timeframe (multiple times) since before 2005, the TADA would be much better. It’s still the best process we have, currently.
We are blessed with a universe that’s predictable and testable, yet we pray for miracles. And we pray for miracles, but act as though human actions can block them. Is the will of the Creator Who spoke the physical laws into existence limited by humans if they act as though the universe is predictable and testable?
Those of us who practice medicine are limited by the physical laws, the predictable and testable, with an emphasis on the tested. Our education and experience is based on these tested predictions and guide our decisions, and we’re watched and sometimes redirected by our colleagues, patients, laws and the community.
And then, there’s the best test of all: time.
In fact, I once noted that a patient who outlived the “10 Day Rule” might have proved the doctor (who instigated the process from the Texas Advanced Directive Act) wrong. There might have been a few cases like this, just as I believe there have been miracles.
However, can you tell me how to measure these events and predict their occurrences, much less practice medicine based on them?
In the majority of TADA cases when treatments weren’t withdrawn, the patient died in the exact manner the doctors predicted, after the same interventions -and sometimes more invasive and tortuous “treatments” than the ones the doctor originally objected to.
“We’re doing things to her. Not for her.” (Wini King, spokesperson for Cook’s Children’s Hospital, January 3, 2020) This may be the best description of a very sad case.
Tinslee Lewis was born prematurely on February 1, 2019, with severe heart and lung defects. She had cardiogenic shock and was admitted to the Cardiac ICU at Cook’s Children’s Hospital immediately. ♡(See Cardiac Pathology ♡below.)
Even after three open heart surgeries, a fourth to close her sternum, a short time on ECMO (essentially, heart-lung bypass) and constant ventilator since July, of 2019, Tinslee’s enlarged heart and small, damaged lungs can’t keep up with the necessary blood circulation and exchange of oxygen and carbon dioxide, even with the assistance of multiple blood pressure medicines, diuretics and the ventilator on high, except when she’s still and quiet with the help of sedating and paralyzing drugs.
In response to a lawsuit against Cook’s Children’s Hospital, where Tinslee has been in the CICU since birth, Tinslee’s medical records were submitted to the Court. I’ve been able to review approximately 200 pages that are now public record, describing the constant, repetitive interventions necessary to keep Tinslee alive on the ventilator.
Tinslee’s doctors (and, the notes show, the nurses and staff) believe that they are being forced to cause Tinslee pain and suffering, while keeping her paralyzed and sedated. They report increasing difficulty with managing the ventilator so that her damaged heart & lungs can maintain oxygenation. She requires repetitive heart, lung and blood tests to guide adjustment of meds & treatments and has had several infections requiring treatment. In contrast to my earlier presumption, the notes in the records show that the ventilator and all its required meds and manipulations are indeed causing undesired problems, including fluid overload, infections and cardiopulmonary distress, in addition to her underlying lung disease. Even the baby’s growth, something we usually celebrate, increases her risk of cardiopulmonary insufficiency.
Those records also contain notes from many attempts to explain and council Trinity Lewis, Tinslee’s mother, about her baby’s underlying problems and prognosis and the reasoning behind, in contrast to some past media reports.
Ignoring the fact that doctors, not hospitals, practice medicine in Texas, Texas Right to Life Lawyer Joe Nixon is quoted, claiming that the “hospital ” has decided to withdraw treatment. Texas Attorney General, Ken Paxton, is shown to have Tweeted that the problem is a “legal issue,” rather than an ethics and justice matter of forcing doctors (and by their orders, nurses and other staff) to cause pain and suffering for a little girl who is dying as her body fails to heal, in spite of every intervention possible.
Many people, out of compassion, object that “the family ” should decide when to withdraw life support. Yet, the family members aren’t watching the oxygen levels drop while they rinse Tinslee’s airways with a bicarbonate solution to keep her lungs clear. And it’s certainly not the lawyers that are probing, injecting, measuring and adjusting constant, innumerable hourly interventions done to a baby who must be sedated and paralyzed to prevent cardiac and respiratory distress.
In spite of the diligent complicated interventions and care of the doctors and nurses at Cook’s, there have been comments in blogs and social media that the “hospital” wants to “kill” Tinslee. Startlingly, AG Paxton called the latest Court ordered, indefinite hold on removal of life support a “Stay,” as though the doctors, not her multiple medical problems, would kill Tinslee. He also misrepresents the process that Cook’s Children’s Hospital and Tinslee’s doctors followed,
“The statute fails to require that physicians provide an explanation of why they refused life-sustaining treatment and provide the patient’s family with adequate notice and opportunity to argue their position prior to the committee reaching a decision, effectively allowing the government to deny an individual’s right to his or her own life and to do so without due process.”
In fact, though, it is the lawyers, particularly at Texas Right to Life, who are turning a little girl’s tragedy into a continuation of their legal battle against the Texas Advance Directive Act. I’ve covered the benefits of and the struggle to improve the Act – repeatedly blocked by TRTL and their lawyers – for years on both WingRight.org and Lifeethics.org
The Act, TADA, was hammered out in 1999 by a group of stakeholders including patient and disability advocates, hospitals, doctors, ethicists and lawyers. Texas’ prolife organizations, including TRTL and the organization for which I served on the Board of Directors for 15 years, Texas Alliance for Life, and for whom I wrote this essay.
Briefly, TADA allows a balance and legal options when there’s a difference in opinion between a patient’s desire for a given treatment and the medical judgment (a combination of education, experience, and the standard of care) of the doctors who are tasked with the most difficult medical and surgical cases.
I’ll admit that it’s my opinion – and only my opinion – that the lawyers hate that TADA provides a safe haven from lawsuits if doctors follow the law (!). I slowly came to this conclusion over the years because at virtually every Legislative hearing and stakeholders’ meeting about any changes to the Act, the lawyers bemoan the fact that doctors don’t have to go to court over each of these cases and that they face no legal penalty or “liability.”
Poor Tinslee Lewis will most likely never leave the hospital alive. Disease and death don’t respect “due process,” but, they are predictable and an inevitable part of life. Hopefully, we will see her mother and those who love her come to find peace with her death, celebrating the time they’ve had to be with her, especially these last 2 months. However, I fear that the lawsuits will continue for years, adding to their grief.
Edited 1/19/2020 for a typographical error: in the secondparagraph, “cardiogenic” replaced “carcinogenic.” BBN
♡Ebstein Anomaly – Cardiac Pathology 101, about as simple as I can make it (and understand, too);
Babies born with Ebstein Anomaly have a malformed right and atrium and ventricle and misplaced (tricuspid) valves between the right sided ventricle and atrium. The larger right ventricle can’t pump efficiently.
In addition, the blood the right ventricle tries to pump into the lungs leaks/flows/churns (risking blood clots) back into the right atrium, which grows even bigger, with even thicker walls. The ventricle also grows bigger. When the muscle fibers of the chamber walls get stretched apart enough, they are less inefficient. (Think of two hands gripping at the fingers. The farther out the grip, palm > 1st joint > fingertips, the less strength and pull on the opposite hand.) (For the geeks: Frank-Starling law.
The lungs aren’t efficiently filled with blood, they don’t expand, the pressure builds up in them and efficient exchange of gasses doesn’t take place.
In the meantime, the blood backs up in the body, the liver, kidneys and extremities & eventually the left side of the heart, which can hypertrophy , too.
The enlarged heart puts pressure on the lungs and nearby soft tissue, including the blood vessels coming to the heart.
The combination of leaking high pressure blood vessels and the body’s increasing fluid in order to try to pump what oxygen there is, leads to edema or swelling of the body.
Sometimes, the fetal atrial-septal defect stays open, allowing mixing of the un-oxygenated blood from the right, with the oxygenated blood. This malfunction can help, temporarily.
With the high pressure, poor flow, and actual physical damage due to the mass of the heart, none of the organs can function well. Increased activity, stress, and growth will increase the demand for oxygen, kidney & lung function.
The Press Release is published in .pdf on the hospital’s website. Here’s the text:
Cook Children’s Statement Regarding Patient Tinslee Lewis Fort Worth, Texas (November 10, 2019) –
Tinslee Lewis is a beautiful baby who has captured the hearts of many at Cook Children’s since her premature birth nine months ago. She was born with a rare heart defect called an Ebstein’s anomaly and has undergone several complex surgeries at Cook Children’s in an effort to improve her heart function. Further complicating matters, she also suffers from chronic lung disease and severe chronic pulmonary hypertension. Due to these complications, she has spent her entire life hospitalized in Cook Children’s intensive care unit. She has required artificial respiratory support throughout that time, and has been consistently on a ventilator since July.
In the last several months, it’s become apparent her health will never improve. 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.
To maintain the delicate balance necessary to sustain Tinslee’s life, and to prevent her from pulling out the lines that are connected to the ventilator, doctors have had to keep her constantly paralyzed and sedated. While Tinslee may sometimes appear alert and moving, her movements are the result of being weaned off of the paralyzing drugs. We believe Tinslee is reacting in pain when she’s not sedated and paralyzed.
Cook Children’s has made heroic efforts to treat Tinslee’s condition, all while being very transparent with her family regarding her poor prognosis. Despite those extraordinary efforts, Tinslee’s condition has not improved. At the request of Tinslee’s family, we have reached out to nearly 20 facilities across the country to see if any would be willing to accept Tinslee as a patient. Some of the facilities include:
Texas Children’s Children’s Memorial Hermann Hospital Dell Children’s Dallas Children’s Medical City Dallas Children’s Medical Center Oklahoma City Children’s Hospital of Atlanta St. Louis Children’s Children’s Hospital of Philadelphia Johns Hopkins Methodist Hospital San Antonio University Hospital San Antonio Boston Children’s Children’s Hospital of Los Angeles Arkansas Children’s C.S. Mott Children’s Michigan LeBonheur Children’s Memphis Rady Children’s Children’s Hospital San Antonio CHRISTUS
All have said our assessment is correct and they feel there is nothing more they can provide to help improve this precious child’s life.
A team of Cook Children’s doctors nurses and staff have given their all to help Tinslee. While, we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain. Removing this beautiful child from mechanical ventilation is a gutwrenching 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.
Assistant Vice President of Public Relations Cook Children’s Health Care System
“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.”
“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.”
“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.”’
One Texas Right to Life (TRTL) lawyer has posted an update on Facebook about the “rescue” of Mrs Carolyn Jones. I’m afraid that, as with the declaration that another patient was “slain,” TRTL is gaming the Medicare funding and Texas medical systems for political purposes.
Emily Cook, General Council for TRTL, wrote that she worried that “funny business clinically would happen as we moved her” from the hospital where Mrs. Jones has been admitted for over 6 months, where the docs had weaned her off the ventilator and wanted her to transfer to a more appropriate level of care facility over 2 months ago.
Emily says TRTL spent their own money (*see my last paragraph) to put her in a private ambulance and take Mrs. Jones to another hospital ER. That hospital couldn’t provide dialysis, so they in turn transferred her via ambulance somewhere else, to yet another hospital until admission can be arranged at the nursing home.
Cook-ing the system
Mrs. Jones’ Medicare funding for the original hospitalization is bound to have run out some time ago. Normally, Medicare will allow 90 days per admission, with an extra 60 “reserve” days, once per person, per lifetime. The patient is responsible for part of the bill from the first day of admission, and for the total hospital costs after the eligible days.
But there are still Medicare regulations to deal with in the case of “Medicare eligible” patients, even when they aren’t paying.
Medicare makes it very difficult and risky for everyone to navigate the private pay process. When I had a question in my private medical office about whether Medicare would cover something, we had the patient sign an informed consent agreement and an acknowledgement that the patient might have to eventually pay if Medicare denied the service. Then we performed the service, filed the charge with Medicare, waited to be denied, and then tried to Bill the patient. I gave away a lot tetanus vaccines and removed a lot of moles and warts for free to avoid the risk of “fraud and abuse” from the likes of Janet Reno.
The same risk would have applied if the hospital had privately charged Mrs. Jones’ Dialysis.
I don’t believe the first new hospital is at risk for a charge of “dumping” if they documented a legitimate reason. However, both new hospitals will be able to charge the Jones copays and co-insurance. They may also find Medicare coverage limited because of the way Mrs. Jones left the original.
“Medicaid limits 2019” (a .PDF)
I certainly don’t know the Jones’ financial circumstances, and I may have over estimated the maximum income in early speculation. However, there are strict maximum Medicaid income and asset levels. These vary according to age, disability, and marital status. (Even the government bureaucratic Leviathan doesn’t want the spouse if a nursing home patient to end up indigent.)
In my experience, the social workers and benefits experts at hospitals and nursing homes are experts at negotiating and translating the bureaucracy. In addition, the disabled Medicare eligible person will have access to a benefits specialist. I’ve never had a hospital discharge and nursing home admission blocked by this “paperwork.” Certainly not for months at a time.
I hope TRTL assists the Jones family with what is certain to be several enormous hospital bills. As long as they pay the bills directly, the funds won’t be counted as income to Mrs. Jones.
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.”
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.
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.
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.
Mrs. Jones is not dependent on the ventilator.
In fact, it sounds like Mrs. Jones has had excellent treatment at the hospital,
Mr. Jones told the Texas Senate Health and Human Services Committee that the doctors at the hospital successfully weaned Mrs. Jones from the ventilator.
He also said that three other facilities are ready for her admission.
I’m happy to see that today’s article by reporter Tony Guajardo quotes both opponents and supporters of TADA and corrected the impression that Mrs Jones is dependent on the ventilator: “She requires dialysis, occasionally needs a ventilator for breathing assistance, and uses a feeding tube.“
There’s also a quote from Mrs. Jones’ daughter, repeated from the earlier article: ““My mom is going to die on Monday because of a law that saves hospitals money.”
It turns out that money and Medicaid paperwork is actually what is keeping the family from allowing Mrs. Jones to be transferred to another doctor and facility. The family is concerned that they (rather than the hospital) will be responsible for the costs of Mrs. Jones’ care.
This is in spite of the fact that when a patient first goes on dialysis, she becomes immediately and automatically eligible to apply for Medicare and Social Security Disability.
Depending on assets and income, patients unable to work on dialysis also qualify for Medicaid and other State benefits in Texas. Medicaid will even pay bills retroactively for three months.
The good news is that she isn’t dependent on the ventilator, dialysis is not constant but only 2-3 times per week and paid by Medicare, food and water by the feeding tube can’t be withheld under TADA.
Hopefully, the Jones family will finally agree to transfer her, even if costs them more than her Medicare & Social Security Disability will pay.
Now, Texas Right to Life is blatantly lying, posting an article on their website entitled “American hero slain two days before Christmas …”
Far down in the piece, there’s this:
“Chris passed away naturally on December 23, 2015 – two days before Christmas.”
Mr. Dunn died from his metastatic pancreas cancer, on full medical treatments. His mother, Mrs. Kelly actually thanked those who cared for him at the hospital.
Every article on TRTL’s website has a “Donate” button at the top, prioritizing money over the people whose stories they use to raise money and influence the Texas Legislature. Now, we see this completely dishonest caption.
Just what is their mission and how can we trust them?
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.
What a tragic story!
While I only know what I’ve seen online, in my experience, it appears that the dispute about Mrs. Carolyn Jones is over continued hospitalization at this hospital, versus transfer to care at another facility.
(See this television news report.)
I’m the first to say that hospitals are scary places and to sympathize with families struggling to cope with the bureaucracy and protocols. However the current news, press releases, and pro-life blogs are reporting several errors and omissions about Texas’s law and legislation up for consideration in Austin.
The obvious errors in this report include:
1. First. It’s not correct that Mrs Jones will die on Monday, even if the ventilator is turned off at the hospital. She’s not intubated through the mouth or nose. Instead, there’s a tracheostomy and a feeding tube in place. Supplemental oxygen could be provided many different ways, at home or in a nursing home.
2. Mr. Jones has testified at the Texas Senate Health and Human Services Committee meeting (EDIT: the video is here, at 52 minutes in) on 4/10/19 and elsewhere that Mrs Jones had been weaned off the ventilator, needing it only occasionally, at night.
2. She should be able to speak and swallow with training.
3. Texas Advance Directives Act doesn’t require that the doctor declare the treatment be “futile.” Instead, the doctor must declare that he refuses to follow a certain treatment decision that the patient or family demands .
4. Kidney dialysis is paid for by the Federal government, so the problem isn’t only funding.
In my admittedly limited knowledge about this particular case – it appears that Mr. Jones disagrees that it’s time to move from the hospital to home or nursing home, even after 5 months (not 10 days).
At least since 2005, legislation has been introduced at the State to increase the timeframe to as long as a month. Texas Right to Life refuses to agree to anything other than indefinite treatment, with the doctor forced to act against his will, violating his conscience and ignoring his medical judgement.
TRTL has even clashed with other pro-life organizations and Texas’s Catholic Bishops and “primaried” several conservative Legislators, although they are the only Texas pro-life group that opposes the law.
It would be good to add more time – I don’t know of anyone who disagrees. But there needs to be a limit to how long a doctor is forced to act against his conscience. One Bill that was rumored this year would change the “10 days” to 21 days and add a week to the notification period before the Ethics committee meets. Unfortunately, it never got past the Powers That Be.
For more on the ethics of the Texas Advance Directives Act, see this WingRight post.
The most urgent need is communication with families, correcting misunderstandings like those outlined here.
(Edited May 10, 2019 at 12:22 AST, to correct the Link to the testimony of Mr. Jones. BBN)
Texas Right to Life General Counsel Emily Cook is attacking Texas Medical Association on Facebook, even though virtually every other pro-life, medical, nursing, hospital, and disability group in Texas oppose SB 2089 by Hughes, that would change the “Texas Advance Directive Act, “TADA” will harm patients and attack the right of doctors to refuse to act against our conscience.
There’s no leeway, at all, in the new Bill.
If you believe that even doctors have the right of Conscience, and that infringement of the right not to be forced to act against your will is wrong, please contact your Texas Senator and Lieutenant Governor Dan Patrick and respectfully ask that SB2089 not be brought up.
You can let me know if you disagree on my Facebook page.
“[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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“(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. 5Representative 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”.””
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
I’ve sat on this for 4 days, hoping for a response to the questions I sent to 2 of the ‘co-founders” and an editor of the website. (They only use those online forms, so I can’t follow up by email.)
So far, no response from any of the 3.
I’m not going to link to the website, but the address is in the photo.
Unfortunately, the division in the Texas prolife community is deep. The article I attempted to comment on quotes – and disputes – an article I wrote for Texas Alliance for Life a few years ago.
All I wanted to say was that I hope the readers will read that article.
Praying for peace.
(BTW, that case ruling came down in favor of Houston’s Methodist Hospital and the Texas First Court of Appeals refused to declare the Texas Advance Directive Act unconstitutional.)
I’ve been having a long Facebook discussion with representatives of organizations, people who claim that I support coercion and killing patients because I defend the Texas Advance Directives Act, 166.0046. (TADA).
I want to respond as fully as I can. ( I’m bandwidth deprived today and will gradually add more links when I reach better signals. See here, here, and here for more explanations from earlier WingRight posts. Links to the law, the press, and previous blog posts by others can be found in those articles.)
It was easy to follow this case. There was a video published by Texas Right to Life (TRTL), a lot of press, statements to reporters by family, lawyers, and TRTL staffers, as well as a couple of lawsuits. I spent the better part of two days once again reviewing the public records.
(Edited 03/11/18 for typos, to add a link, and to clarify points originally made on Facebook in a long debate. BBN)
If only we doctors – or legislators, lawyers and probate judges – really had the power to “keep the patient alive” as this article claims two new Bills ( HB 4090 & SB 1213) in front of the Texas Legislature will (force doctors to) do.
The article is misleading in its claim that a committee or a hospital decides whether or not a therapy is given: Texas doctors practice medicine in Texas. Even the Bills make it clear that the “attending physician” makes the decision whether or not to follow the patient’s (or more likely, the surrogates’) medical request.
We – Texas doctors, hospitals, and legislators – have tried repeatedly over the last decade to amend the law, Texas’ Advance Directive Act, to increase the time frame. Last Session, we helped to ensure that food and water can’t be withheld. The lawyers and those who would have Estate (probate) judges involved in every dispute – even at the bedside of the dying – have blocked effort after effort because the Bills did not include liability for the doctor.
These Bills are just the camel’s nose under the tent of Texas’s tort reform. Worse yet, we’d end up with medical expert testifying against medical expert in court, with the judge eventually telling the doctor how to practice medicine. It would also severe the “ethicists” who actively seek to undermine conscience protections for health care professionals.
If you’ll notice, the Bills also remove the requirement for the patient to pay for any transfer, too. I don’t suppose that the tort lawyers will pay for the ambulance or plane ride.
Do you want Texas law to force doctors to practice against our consciences?
How long and how far should any man or woman be forced by law to act against his or her will?
Death, lies and video
Supported only by his imagination, what he saw in videos produced by Texas Right to Life lawyers, and a news article,Dr. Phillip Hawley, Jr., M.D., wrote “A Tragic Case of Modern Bioethics; Denying Life-Sustaining Treatment to a Patient Who Wanted to Live” about the truly tragic, but inevitable death of Chris Dunn. Hawley erred by pretending to read the minds of doctors and hospital representatives and calling complete strangers “utilitarian” “murderers.” Before discussing the ethics of his accusations, it’s necessary to explain the meaning of the documented facts, available in news sources, blog posts and court records:
It is very unlikely that Chris understood his condition, the questions the lawyers were asking or the consequences of his “prayer.” That he was unable to make medical decisions is supported by the fact that his parents had been making his medical decisions. The Harris County judge agreed with the hospital’s request that a single legal guardian be named by a separate court.
“Life-sustaining treatment,” “medically inappropriate” and “Artificially Administered Nutrition and Hydration” are legal terms defined in the Texas Advance Directive Act (TADA), which outlines the exact procedure and language for communications between doctors, the hospital committee, and patients or their surrogates. The use, monitoring and adjustment of a mechanical ventilator is in the definition of “life-sustaining treatments.” TADA specifically excludes “Artificially Administered Nutrition and Hydration” (AANH) in the definition of “life sustaining treatments,” which would argue against the accusation that his doctors planned to withdraw “food and water.”
The only legal reason under TADA to remove any “life-sustaining treatment” is that it is deemed “medically inappropriate” by the attending physician and then only if the hospital medical or ethics committee “affirms” that decision. If and when they are withheld, the Act specifically prohibits “mercy killing” or otherwise intentionally intervening with the intent to cause death by artificial means.
Additional demands by Chris’ mother, Mrs. Kelly, and the lawyers in blogs and news articles would have also fallen under the legal definition of “life-sustaining treatment.” These demands included a biopsy in order to determine a definitive tissue diagnosis for the clinically apparent pancreatic cancer and liver lesions, a surgical tracheostomy and the removal of the ventilator (to be fair, I believe they meant the tube through the vocal chords), less sedation, searches for and trials of treatment of the cancer, and the non-standard use of an indwelling drain for the ascites (large exudates in the abdomen due to high pressures in the liver and the failure of the liver to make necessary proteins). These are invasive, potentially painful and, based on the reported size and effects of the mass, the extent of liver damage visibly evident in the videos as temporal wasting and copper-colored skin, ascites and the GI bleeding – they were very unlikely to lengthen his life, much less cure his cancer. In fact they could be very likely to hasten – or be the immediate cause of – his death.
Chris died in the ICU on full life-sustaining treatments, including the ventilator and intravenous AANH.
The doctors are on record as basing their decision on the suffering caused by the treatments to their patient, Chris. This is consistent with the known side-effects of the ventilator and even reports from Chris’ mother, who told reporters that Chris suffered from the treatments and fluid building up in his lungs despite the ventilator. And yet, Dr. Hawley made sensational statements such as:
“For patients with terminal illnesses, this standard often leads to the utilitarian question: Is the patient’s life still worth living?
“In Chris Dunn’s case, the committee’s answer was “no.” Relative strangers with little or no knowledge of his values and beliefs weighed his “quality of life” and decided that he no longer deserved to live.”
“. . . How did these committee members who had only recently met the patient—if they ever met him at all—know that it was in his best interest for them to end his life?”
“. . . But, somehow, we are to believe that these committee members were able to deduce existential truths about what was in Chris Dunn’s best interest?”
The physicians who cared for Mr. Dunn for over a month had certainly met him and members of the Methodist Hospital Biomedical Ethics Committee met with the family several times. Court documents are clear that the doctors believed the life-sustaining treatments were causing suffering and that the committee agreed that the treatments were medically inappropriate. There certainly is no evidence that the doctors or the committee members sought to intentionally “end” Chris’ life. “Medically inappropriate treatment” is not an “existential truth” and never in the patient’s best interest.
(Some may remind us that suffering can have benefits. However, Mr. Dunn couldn’t consent to suffering, much less benefit from the suffering, whether as a medical treatment or a willing religious self-sacrifice.)
Robert P. George is one of my heroes a conservative tenured professor of law and ethics at Princeton and one of the founders of the Witherspoon Institute, an organization known for its defense of Judeo-Christian ethics based on natural law, and the parent organization of Public Discourse. He has helpfully outlined a “key” to evaluate the withholding or withdrawing of life-sustaining care:
“[T]he key is the distinction between what traditionally has been called “direct killing,” where death (one’s own or someone else’s) is sought either as an end in itself or as a means to some other end, and accepting death or the shortening of life as a foreseen side effect of an action or omission whose object is something other than death—either some good that cannot be achieved or some evil that cannot be avoided without resulting in death or the shortening of life.”
George and Hawley each point to a value in medicine that is higher than autonomy or even preserving life at all costs: the duty of physicians to care for the patient. “Cure when possible, but first, do no harm.”
The lawyers didn’t just sue to maintain “life-sustaining treatments,” or even Mrs. Kelly’s right to force the doctors to treat Chris the way she wanted them to. The lawsuit, blog posts and public statements document the ultimate goal to have TADA declared unconstitutional and to force all doctors to give patients and surrogates the right to demand any and all desired treatment indefinitely. The power of State courts, law enforcement and licensing would be used to force Texas doctors to carry out acts against our medical judgment, education, experience and conscience.
What justification can the lawyers and Dr. Hawley give for not believing the physicians who care for patients daily and hourly when those caretakers document that the patient is suffering?
What kind of physicians will we end up with if the State can force us to act without judgement or conscience?
What kind of State would we have?
Based on a video and his imagined conversations between “malevolent” and “utilitarian” doctors and hospitals, Hawley declares Texas a “morally impoverished society.” Ignoring sworn statements from the physicians and misrepresenting TADA, he distorts the purpose of the Texas Advance Directive Act, which is to address the problems encountered when patients and surrogates disagree., Only by assuming evil intent is he able to force doctors to prove a negative and distract from any possibility of a conflict between the equal and inalienable rights of the patient and the doctor.
While the video of Chris apparently praying to be allowed to live wrenched at our emotions, it was used to tell a false story upon which Dr. Hawley built his harmful assumptions. We would all do well to remember my Mama’s advice: Don’t believe anything you hear and only half of what you see.”
Edited for grammar and decrease wordiness and formatting (1-15-16). BBN
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)
I’ll admit that I’m not a lawyer and have to do my homework to even attempt to understand lawyer-speak. (For example, see this definition of “Abatement”) How I wish more lawyers would admit they aren’t doctors, especially when they accuse doctors and entire hospital committees of killing patients.
Earlier this week, I reviewed the latest sensationalized case involving lawyers and lawyer-lobbyists playing doctor in the media and courts to overturn Section 166.046 of the Texas Advance Directive Act (“TADA”).
TADA outlines the process to settle disputes between an attending physician and the patient (or the family of a patient) when the medical judgment of the doctor about what is medically appropriate for the patient conflicts with the demands for treatment that the patient or family wants *that* particular doctor to perform.
Texas law prohibits the removal of “artificially administered nutrition and hydration” and pain medications unless the doctors determine they will cause further harm. However, a ventilator, intubation tubes in the throat, cardio-version (CPR), surgery and invasive procedures or tests are not ordinary or comfort care and are considered “life-sustaining” treatment that may be removed or withheld from a patient with a terminal disease if the patient’s doctor determines that are not medically appropriate. There is certainly no provision in Texas law to intentionally stop a patient’s breathing or to otherwise cause certain death.
The lawyers lobbying and suing against TADA admit in both public statements and legal complaints that they will settle for nothing less than “Due Process,” lawyer-speak reference to the Fourteenth Amendment clause, “due process of law.” They demand that every dispute about medically appropriate care between doctors and patients be argued – by lawyers – in court, preferably with a risk of “liability” for the doctor, any committee member who reviews the case under TADA, and the hospital where the patient is under care. Judges, and possibly juries, would determine the local medical standard of care, which medical procedures are appropriate for which patients, and liability. Lawyers and judges would essentially practice medicine instead of doctors.
To summarize this latest case, court records document** the affidavit from the attending physician of a 46 year old Pasadena, Texas man, Chris Dunn. Mr. Dunn was admitted to the ICU at Houston’s Methodist hospital unresponsive after a major gastrointestinal bleed due to metastatic pancreatic cancer led to his emergency transfer from a hospital in his hometown. Mr. Dunn was on a ventilator and suffering from liver, kidney, and respiratory failure. He had fluid in his lungs, necessitating higher and higher pressures on the ventilator. He had fluid leaking into the abdominal cavity due to the liver failure, ascites, that required intermittent draining. He also suffered from hepatic encephalopathy, a form of variable dementia and delirium. His doctors and his father agreed that the repetitive, invasive treatments necessary to maintain the ventilator and treat the multi-organ failure should be stopped because they were causing Mr. Dunn harm, while comfort care would continue.
In their lawsuit against the hospital, a group of lawyers brought in by Mr. Dunn’s mother and Texas Right to Life sued the hospital in Mr. Dunn’s name, although there was a question about both Mr. Dunn’s ability to legally consent and the legal status of either parent alone to make medical decisions on Mr. Dunn’s behalf. In fact, the court ruled an “Abatement” or suspension of the lawsuit on December 4, 2015, until the legal guardianship for Mr. Dunn could be settled in another court. And, sadly, in spite of continued treatment in the Intensive Care Unit, on a ventilator, with IV and tube feedings, and all the repetitive blood tests, suctioning, and invasive procedures these treatments required, Mr. Dunn succumbed to his disease before that other court could meet to name a guardian.
In their lawsuit against the hospital, the lawyers even accuse “the facility” (not the attending doctor) of planning to actively euthanize Mr. Dunn by the deliberate use of injections intended to cause his death, rather than to relieve his pain:
“Defendant scheduling . . . and Defendant administering, via injection, a combination of drugs which will end his life almost immediately, thus warranting immediate intervention by this court.” (**p.2)
The lawyers further declared that the doctors and the Methodist Biomedical Ethics Committee – and every doctor or hospital committee – would be corrupted by their affiliation with the hospital:
“The statute does not provide adequate safeguards to protect against the conflict of interest inherently present when the treating physician’s decision is reviewed by the hospital “ethics committee” to whom the physician has direct financial ties.
“Texas Health and Saftey [sic] Code violates Plaintiff’s right to procedural due process by failing to provide an adequate venue for Plaintiff and those similarly situated to be heard in this critical life-ending decision. The law also fails to impose adequate evidentiary safeguards against hospitals and doctors by allowing them to make the decision to terminate life-sustaining treatment in their own unfettered discretion.” (**pp. 5,6)
“Under Tex. Health and Safety Code 166.046, a fair and impartial tribunal did not and could not hear Dunn’s case. “Ethics committee” members from the treating hospital cannot be fair and impartial, when the propriety of giving Dunn’s expensive life-sustaining treatment must be weighed against a potential economic loss to the very entity which provides those members of the “ethics committee” with privileges and a source of income.” (**p. 7)
Lawyer-speak notwithstanding, I can’t figure out – and the lawyers don’t tell us – how to ensure that “unfettered” pancreatic cancer presenting with multi-organ failure followed “due process” in Mr. Dunn’s case. Other than lawyers from each side hiring and paying even more doctors to re-examine the patient and re-view the existing medical records, repeated clinical exams and nurses’ notes, lab work and non-invasive scans of the liver and abdomen, what would a judge or jury consider “evidentiary safeguards against doctors and hospitals?”
But in news article after blog post, lawyers (but no doctors) claimed that “the hospital wanted to kill” Mr. Dunn. Lawyers (but no doctors) claimed there were un-named additional tests and treatments which could have changed the diagnosis, treatment or prognosis. Lawyers (but no doctors) disputed the medical judgment of the very doctors from whom the lawsuit demanded continued intensive care.
In their lawsuit, the lawyers also declared that, “Members of a fair and impartial tribunal should not only avoid a conflict of interest, they should avoid even the appearance of a conflict of interest, especially when a patient’s life is at stake.” (*p. 7) But that didn’t stop them from including an ironic and self-serving demand that Methodist hospital pay their “Attorney fees and costs.” (p. 12)
**(Protected “.pdf” “Images” of the original legal documents quoted below can be found online, here. The document images aren’t link-able and can’t be copied or printed, so I will have to type up and share quotes. See Family case number 2015-69681. The quotes above are from document number 6796448.pdf, “Plaintiff’s Original Verified Petition and Application for Temporary Restraining Order and Injunctive Relief.”)
Here’s Section 166.046 of the Texas Advance Directive Act, the part of Texas Law that is in the news, these days. This part only applies when there is a disagreement between the doctor (whom the patient wants to continue treatment) and the patient or his surrogate about treatment decisions.
Sec. 166.046. PROCEDURE IF NOT EFFECTUATING A DIRECTIVE OR TREATMENT DECISION. (a) If an attending physician refuses to honor a patient’s advance directive or a health care or treatment decision made by or on behalf of a patient, the physician’s refusal shall be reviewed by an ethics or medical committee. The attending physician may not be a member of that committee. The patient shall be given life-sustaining treatment during the review.
(b) The patient or the person responsible for the health care decisions of the individual who has made the decision regarding the directive or treatment decision:
(1) may be given a written description of the ethics or medical committee review process and any other policies and procedures related to this section adopted by the health care facility;
(2) shall be informed of the committee review process not less than 48 hours before the meeting called to discuss the patient’s directive, unless the time period is waived by mutual agreement;
(3) at the time of being so informed, shall be provided:
(A) a copy of the appropriate statement set forth in Section 166.052; and
(B) a copy of the registry list of health care providers and referral groups that have volunteered their readiness to consider accepting transfer or to assist in locating a provider willing to accept transfer that is posted on the website maintained by the department under Section 166.053; and
(4) is entitled to:
(A) attend the meeting;
(B) receive a written explanation of the decision reached during the review process;
(C) receive a copy of the portion of the patient’s medical record related to the treatment received by the patient in the facility for the lesser of:
(i) the period of the patient’s current admission to the facility; or
(ii) the preceding 30 calendar days; and
(D) receive a copy of all of the patient’s reasonably available diagnostic results and reports related to the medical record provided under Paragraph (C).
(c) The written explanation required by Subsection (b)(4)(B) must be included in the patient’s medical record.
(d) If the attending physician, the patient, or the person responsible for the health care decisions of the individual does not agree with the decision reached during the review process under Subsection (b), the physician shall make a reasonable effort to transfer the patient to a physician who is willing to comply with the directive. If the patient is a patient in a health care facility, the facility’s personnel shall assist the physician in arranging the patient’s transfer to:
(1) another physician;
(2) an alternative care setting within that facility; or
(3) another facility.
(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 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 both the written decision and the patient’s medical record required under Subsection (b) are 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) 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;
(3) result in substantial irremediable physical pain not outweighed by the benefit of the provision of the treatment;
(4) be medically ineffective in prolonging life; or
(5) be contrary to the patient’s or surrogate’s clearly documented desire not to receive artificially administered nutrition or hydration.
(e-1) If during a previous admission to a facility a patient’s attending physician and the review process under Subsection (b) have determined that life-sustaining treatment is inappropriate, and the patient is readmitted to the same facility within six months from the date of the decision reached during the review process conducted upon the previous admission, Subsections (b) through (e) need not be followed if the patient’s attending physician and a consulting physician who is a member of the ethics or medical committee of the facility document on the patient’s readmission that the patient’s condition either has not improved or has deteriorated since the review process was conducted.
(f) Life-sustaining treatment under this section may not be entered in the patient’s medical record as medically unnecessary treatment until the time period provided under Subsection (e) has expired.
(g) At the request of the patient or the person responsible for the health care decisions of the patient, the appropriate district or county court shall extend the time period provided under Subsection (e) only if the court finds, by a preponderance of the evidence, that there is a reasonable expectation that a physician or health care facility that will honor the patient’s directive will be found if the time extension is granted.
(h) This section may not be construed to impose an obligation on a facility or a home and community support services agency licensed under Chapter 142 or similar organization that is beyond the scope of the services or resources of the facility or agency. This section does not apply to hospice services provided by a home and community support services agency licensed under Chapter 142.
Added by Acts 1999, 76th Leg., ch. 450, Sec. 1.03, eff. Sept. 1, 1999. Amended by Acts 2003, 78th Leg., ch. 1228, Sec. 3, 4, eff. June 20, 2003.
Acts 2015, 84th Leg., R.S., Ch. 1 (S.B. 219), Sec. 3.0503, eff. April 2, 2015.
Acts 2015, 84th Leg., R.S., Ch. 435 (H.B. 3074), Sec. 5, eff. September 1, 2015.
Texas Right to Life turned Mr. Dunn’s imminent death from metastatic pancreatic cancer into a crusade against the Texas Advance Directive Act (TADA or the Act). The Act is invoked by the attending doctor – not the hospital or ethics committee – when family members demand that he or she perform acts that go against the conscience because they are medically inappropriate, causing the patient to suffer without changing his course.
In this case, the mother and father disagreed with one another about the care plan and the patient was unable to make legally binding decisions. The father agreed with Mr. Dunn’s doctors that the treatment was causing suffering, objected to surgery to place a tracheostomy, and wanted hospice and comfort care. The mother wanted dangerous, painful procedures performed that would not change the medical outlook except to possibly hasten death.
And, unless you read the court records, you wouldn’t know that the judge ruled that Chris was not mentally competent to make his own medical decisions, that the hospital never wanted guardianship and had voluntarily promised to continue care until the guardianship could be settled. In fact all the lawyers, including the Texas Right to Life representatives, signed off on an agreement acknowledging this promise on December 4th. ( The official court records are available to view free of charge online at the Harris County District Clerk’s website as protected pdf images. See Family case number 2015- 69681.)
Inflammatory headlines falsely claimed that “the hospital” had imposed a “death sentence,” and was actively trying to kill Mr. Dunn by refusing to diagnose, treat or even give a prognosis. That same blog post mentioned non-standard treatments that some in the family were demanding.
First of all, of course there was a diagnosis. Several, in fact. From the signed affidavit of Mr. Dunn’s attending physician, filed December 2, 2015 in response to the law suit:
“Based on my education, training, experience, as well as my care of Mr. Dunn, I, and members of my team, have advised his family members that Mr. Dunn suffers from end stage liver disease, the presence of a pancreatic mass suspected to be malignant with metastasis to the liver and complications of gastric outlet obstruction secondary to his pancreatic mass. Further, he suffers from hepatic encephalopathy, acute renal failure, sepsis, acute respiratory failure, multi-organ failure, and gastrointestestinal bleed. I have advised members of Mr. Dunn’s family that it is my clinical opinion that Mr. Dunn’s present condition is irreversible and progressively terminal.”
The primary diagnosis was metastatic pancreatic cancer. The cancer was a mass that blocked the ducts and blood vessels coming from the liver as well as the normal function of the intestines. As liver excretions backed up into the liver and the blood pressure in the liver increased, Mr. Dunn suffered a life-threatening gastrointestinal bleed, fluid buildup in the abdomen and lungs, and sepsis (an overwhelming infection). All of these would aggravate respiratory failure, the necessity of a ventilator and lead to the kidney damage. Liver failure often results in hepatic encephalopathy and variable delirium.
There was definitely treatment given, including tube and IV feedings, antibiotics, the ventilator, and periodic removal of the abdominal fluid. Again, this was all publicly documented in Court documents, in the media and even on the Texas Right to Life blog that claimed that “Houston Methodist has invested no time or effort in Chris’s health, instead exerting their energies into trying to kill him instead.” [sic]
The Intensive Care doctors as well as the Biomedical Ethics Committee, met with the parents to explain Mr. Dunn’s condition and his prognosis. The family was given notice before the Committee hearing and met with the (not at all “nameless” or “faceless”) Committee to discuss their (differing) wants. Thirty days’ worth of medical records, a hospital case worker and assistance in finding alternative care were made available to the family.
Then, there’s the complaint about the limits on visitors and videotaping. It is not unusual to limit Intensive Care Unit visits to specific times and to allow only close family, especially when the patient can’t consent and there is contention among family members. It is certainly standard to prohibit filming in the Unit, since patients are visible from one area to the next, in various states of undress and undergoing constant or frequent *intensive* treatments.
(BTW, one of the lawyers in the TRTL ICU video proves the basis for the rules: he is not compliant with the usual isolation procedures. Former Senator Joe Nixon didn’t wear the protective gown at all correctly, risking the introduction of infectious contamination into the room and/or taking germs home with him.)
It’s very unusual for patients on a ventilator to be conscious because of the severe discomfort associated with the foreign body – the breathing tube – that is necessary in the airways. It’s difficult to believe that anyone would complain about sedating Mr. Dunn in order to bypass his gag reflex.
Finally, the standard of care in advanced metastatic pancreatic cancer is pain relief and palliative support. The surgery to remove a pancreas is extremely dangerous for even healthier patients. As Mr. Dunn had already had an episode of bleeding and both liver and kidney failure, it’s likely that even a biopsy of the pancreatic mass or liver, much less surgery, would have caused more life-threatening bleeding. With liver and kidney damage, he wouldn’t have been able to tolerate trials of radiation or chemotherapy, either.
In fact, the doctors and nurses gave excellent treatment all along, as shown by his survival beyond the average for patients who presented in such a precarious state and acknowledged by Mrs. Kelly in her statement after Chris’ death.
The truth is that Methodist never made plans to “kill” Mr. Dunn. Mr. Dunn was never in danger of the hospital “pulling the plug.” The real problem was a disagreement between Mr. Dunn’s divorced parents over who would legally make medical decisions. That rift is bound to have been made worse by TRTL and the lawyers turning Chris’ illness into a public political battle. The accusations about euthanasia, killing and murder may cause other future patients harm, if they are reluctant to seek care because of these stories.
Remember: Senator Bob Duell was instrumental in convincing the medical community to adopt voluntary procedures to protect patients and families affected by the Texas Advance Directive Act, even though actual amendments to the law have been blocked by the very people attacking him.
How much “freedom” does a third party Political Action Committee have in their paid ads? Is it wrong to challenge them legally when the ads are blatantly false?
In this case, the ad opens by implying that Senator Duell is responsible for the too-short 10 day period allowed to find alternate care when the family or patient disagrees with the doctor at the end of life.
Senator Duell was not in the Senate when the Texas Advance Directive Act was passed in 1999. Members of the PAC, Texas Right to Life, were present and lobbied in favor of the Act.
In contrast, Senator Duell has for years been a strong advocate for amendments that would have increased the power of families to protect their loved ones in the case of disputes with the doctor. The amendments would have changed the waiting period to at least a month before any disputed decisions by the doctor would take effect.
As to the challenge, Senator Duell has excellent support for his case:
The Texas Catholic Conference and Catholic Bishops of Texas, who supported Deuell’s bill, have debunked the claims. They said that Texas Right to Life “has tried to stoke fear through ridiculous claims of non-existent death panels and assertions that doctors are secretly trying to kill patients. Both claims are absurd.” The Catholic Conference also ripped Texas Right to Life for spreading “fabrications” about the position of Catholics on the issue.
“We agree that some treatments do stop achieving the intended goal of that specific treatment, such as dialysis no longer filtering uric acid from the blood. When a treatment or therapy is in fact medically futile, no physician would ever continue that, and a properly informed patient or his surrogate would not want to continue futile or harmful treatment, and nothing in current law or in any of Texas Right to Life’s past or present proposals would require the continuation of such medically futile treatment. Physicians would not continue medically futile treatment anyway.”
“Conflicts arise when the futility judgments are transferred from the efficacy of a medical treatment to a value judgment on the futility of the patient’s life.”
- don’t have the right to be notified of DNR’s placed on their charts,
- have no protection against the removal of artificial nutrition and hydration,
- don’t have the right to medical records before the medical ethics committee meets,
- don’t have the right to be accompanied in the medical committee meeting, and
- don’t have an additional 7 days to prepare for the medical ethics committee and an additional 14 days to find another doctor willing to accept responsibility for the medical treatment of the patient.
The 83rd Legislature of the State of Texas still has a couple of weeks to go, and it ain’t over ’till both the House and Senate are sine die, but it appears that SB 303 did die over the weekend.
Representative Susan King, who broke her leg last Sunday, just the day before the marathon meeting of the House Public Health Committee, has done an incredible job of working with Senator (Dr.) Bob Duell in their attempt to reform our State’s Advance Directive Act through SB 303.
The Committee Substitute which Representative King presented in the Committee had all of the benefits I wrote about last week, as well as a revision to prohibit a doctor from writing a DNR order against the wishes off a competent patient.
(Talk about unintended consequences: current law is silent on “DNRs,” so it’s apparently legal for a doctor to order that resuscitation not be performed on a competent patient without any discussion with the patient, much less obtain consent! I have sincere doubts that any doctor would do so, but there have been allegations. Even though the ones who claim to have knowledge – and who have not produced one iota of proof – are the same disingenuous cynical scaremongers (I’ll call them “CS2”) I’ve mentioned before, this reform would be a good. And should be accepted on its face.)
Because of the egregious misrepresentations of the CS2, Committee Chair Lois Kolkhorst declined to allow SB303 out of the Committee as it was written. Rep. King tried one more time, with a bare bones CS1 containing the protection against DNRs for competent patients and the prohibition against withdrawal of Artificial Hydration and Nutrition, except when it would harm the patient or hasten his death.
So, for the next two years, when you hear the CS2 complain about Texas “death panels” or read a plea for funds to fight “secret DNRs” and withdrawal of food and water in Texas hospitals, remember the CS2 who killed pro-life reform in the 83rd Legislature.
Note: I’ve heard that there’s a new Committee Substitute that will soon be introduced that is more explicit on DNR’s, especially on informed consent and on competent patients.
If laws demand that physicians perform acts against our consciences, you will end up with only doctors without consciences willing to perform the acts in question.
After a few more words about the meeting of the 83rd Texas Legislature Public Health Committee, I’ll post my written testimony that I turned in to the Committee. You can watch the video of the meeting, here. My testimony begins about 4:59/8:20.
I spoke just before midnight, after many others had covered the good (or bad, depending on their opinions) reforms in SB 303, so I didn’t really go in to those when I talked. Instead, I explained how I handled the few times I’ve had to write DNR’s without consent from the patient or a surrogate.
I also talked about the medical judgement of physicians, about the definition of the “right to life”as a negative right. This means that I can be prohibited from killing, but not that I can be forced to indefinitely act against my conscience and medical judgment. It’s a tough concept, meaning no one can claim that their right to life means that they can take my food and shelter, my labors or my liberty to keep them alive.
Then, I explained that yes, doctors have a special relationship, a covenant or, at least, a professional relationship due to our privilege of practicing medicine. But the duties aren’t unlimited and they are not all one way. The 10 days plus 21 days in the version of SB303 that we were discussing that night should be a sufficient time trial or test of time for the patient and the doctor’s decisions about the medical treatment, including DNR’s, that the family demands.
The explanation about the nature of medical judgment that I gave is in the written testimony:
May 13, 2013
Chair Kolkhorst and members,
The Texas Advance Directive Act of 1999, created a procedure for resolving disagreements between doctors and their patients or surrogates about which interventions are medically appropriate. The experiences of patients and doctors during the few times that procedure has been invoked over the years, revealed some problems.
The reforms in SB 303 improve the Advance Directive Act by
· Giving patients and their surrogates much more time and assistance than current law provides in order to prepare for the ethics committee meeting and, if necessary, to find a new doctor willing to accept responsibility for the care of the patient,
· Clarifying the succession of surrogates under state law,
· Protecting the patient’s access to artificially administered hydration and nutrition,
· Restating Texan’s belief that patients should be treated equally regardless of age, disability or ability to pay,
· Adding a whole new section regulating the implementation of Do Not Attempt Resuscitation orders, which our State law hasn’t addressed at all in the past, and
· By protecting the conscience rights of doctors from undue threat of civil, criminal and regulatory liability.
After all, while the hospital provides structure in the form of policies and the medical committee provides oversight about ethics and standard of care, it’s doctors like me, not hospitals or committees, who practice medicine using our medical education and experience guided by conscience, or medical judgment. Medical judgment, not lawyers and paperwork at the bedside, is what enables me to predict the effectiveness of interventions before I order them.
Like all but a handful of Texas doctors, I’ve never had to ask for a medical ethics committee review, but I have had to ask another doctor to co-sign a DNR when I couldn’t find a legal surrogate. As a family doctor, I’ve found that algorithms and “cookbook medicine” or lines of succession for absent family members sometimes aren’t enough when a patient’s physical condition is deteriorating quickly or even when disease runs its expected course, causing organ system after organ system to fail.
Ethics and laws generally lag behind medical advances. Once upon a time, people who couldn’t breathe for themselves were considered to have died a “natural death,” but we keep changing the rules about what we expect human bodies and the “art” of medicine to do. Please support the necessary and important reforms in SB 303.
Thank you for your time and attention,
Beverly B. Nuckols, MD, FAAFP, MA (Bioethics)
Last night, an emergency meeting ot the 83rd Texas Legislature’s Public Health Committee addressed Senate Bill 303, by Senator Duell in a 12 hour long meeting. Representative Susan King, who authored the Companion Bill in the House and sponsored SB303 in this meeting, appeared only one day after a fracture of her tibia. This woman is a hero!
I also want to thank Chair Lois Kolkhorst for ensuring that the meeting was held so that SB303 – and all the people who are so passionate about patients rights and good medicine in Texas could be heard.
It was wonderful to see all the people who volunteer so much of their time to influence Texas law – even when they disagreed with me. What a pleasure to meet new friends, including a gentleman whose name I can’t recall (will fix this later) and Jacqueline Harvey, Ph.D.
Here’s an excerpt from Dr. Harvey’s testimony,
While opponents say that S.B.303 grants power to providers to remove care patients in irreversible conditions, I’d remind them again that one cannot extend to providers power which they already legally possess. Opponents claim that S.B. 303 adds this broad definition, when in fact; this broad definition was established in TADA and is current Texas Law. What S.B. 303 does is add protections to prohibit discrimination against persons with disabilities by ensuring that care may be removed only when harmful (i.e. treatment would fail, hasten patient death, exacerbate another medical condition or cause unnecessary pain). These conditions are standard medical ethics a la “do no harm.”
I’ll write more after I get a chance to review the video of the hearing. There’s some sort of glitch at the Legislature Audio and Video page. (Might have something to do with 12 hours of recordings, ending after 2 AM)