Advance Directives Act
The Texas Advance Directives Act (1999), also known as the Texas Futile Care Law, describes certain provisions that are now Chapter 166 of the Texas Health & Safety Code. Controversy over these provisions mainly centers on Section 166.046, Subsection (e),1 which allows a health care facility to discontinue life-sustaining treatment ten days after giving written notice if the continuation of life-sustaining treatment is considered futile care by the treating medical team.
Although it is often stated that the act is officially named as the 'Futile Care Law' or the 'Futile Care Act', that is in fact incorrect and the statute has never legally had that title.
For the hospital personnel to take advantage of legal immunity from prosecution for this the following process must be followed:
- The family must be given written information concerning hospital policy on the ethics consultation process.
- The family must be given 48 hours' notice and be invited to participate in the ethics consultation process. Family members may consult their own medical specialists and legal advisors if they wish.
- The ethics consultation process must provide a written report to the family of the findings of the ethics review process.
- If the ethics consultation process fails to resolve the dispute, the hospital, working with the family, must try to arrange transfer to another provider physician and institution who are willing to give the treatment requested by the family and refused by the current treatment team.
- If after 10 days, no such provider can be found, the hospital and physician may unilaterally withhold or withdraw the therapy that has been determined to be futile.
- The party who disagrees may appeal to the relevant state court and ask the judge to grant an extension of time before treatment is withdrawn. This extension is to be granted only if the judge determines that there is a reasonable likelihood of finding a willing provider of the disputed treatment if more time is granted.
- If either the family does not seek an extension or the judge fails to grant one, futile treatment may be unilaterally withdrawn by the treatment team with immunity from civil or criminal prosecution. 2
The bill was signed into law while George W. Bush was Governor of Texas. Prior to the passage of this law, no protections or "grace period" existed. Critics have compared this law and its effects with Bush's response to Terri Schiavo's situation, in particular his stated intent to sign the proposed Incapacitated Person's Legal Protection Act. 3
Similar legislation, modeled on the Texas law, was proposed in Idaho in 2009, but was defeated.
Sun Hudson: On March 15, 2005, six-month-old infant Sun Hudson, who had a lethal congenital malformation, was one of the first children to have care withdrawn under the Texas Futile Treatment Law. Doctors demonstrated in the ethics committee reviews that keeping the infant on a respirator would only delay his inevitable death.
Tirhas Habtegiris: In December 2005, Tirhas Habtegiris, a young woman and legal immigrant from Africa, was removed from a respirator. Habtegiris died from complications of incurable and untreatable cancer that had spread to her lungs.
Andrea Clark: In April 2006, relatives of 53-year old Andrea Clark were given the 10-day notice under this act. She had reportedly signed a statement she did not wish to die and was cognizant, although having difficulties communicating while under heavy medication and after her brain was damaged by internal bleeding and the effects of heart disease. After publicity from both right and left political groups, St. Luke's hospital in Houston agreed to review the case again, eventually retracting the original decision this further review. Clark ultimately died on May 8, 2006 after an infection.
Emilio Lee Gonzales: In March 2007, Children's Hospital of Austin gave the mother of 16 month old Emilio Lee Gonzales the 10 day notice under this act. This child suffered from Leigh's disease, a uniformly fatal, progressive illness which eventually destroys all nerve function and thereby prevents breathing, swallowing, coughing, or any intentional or reflex movement. Joshua Carden, an attorney for the Gonzales family, reported that the family had made a "unified decision" to keep the child alive through artificial means, which at the time of the court dispute included constant use of a ventilator machine, pumping food and water into his body, and frequent suctioning fluids out of his lungs, even though the family was aware that the child would not recover.
On March 12, 2007 the hospital ethics committee set a date of March 23 for removing Emilio from his respirator. Lawyers representing Emilio's mother Catarina filed for a restraining order on March 20 to allow the family more time to locate another facility willing to accept Emilio. Later that evening, the hospital agreed to postpone removal of the respirator until April 10. On April 4, lawyers for Ms. Gonzales challenged the constitutionality of the ADA in Federal court, saying that it violated Emilio's 1st and 14th Amendment rights. However, on April 6, federal judge Sam Sparks declined to intervene and sent the matter back to state court. As of April 9, over 30 hospitals nationwide had refused to accept Emilio as a transfer patient. On April 10, Travis County Probate Judge Guy Herman issued an emergency restraining order to prevent the hospital from removing Emilio from his respirator. A hearing was scheduled for April 19. He died at the hospital from the disease on Saturday, May 19, 2007 at the age of 19 months. He spent a total of five months on a mechanical respirator at the hospital before his death.
Other cases: Although there is much press about these cases, due to the lack of a reporting clause in the current statute, there is little information on how often these cases occur. Dr. Robert Fine, director of the Office of Clinical Ethics for the Baylor Health Care System says he collected five years’ worth of information from 11 large hospitals in Texas and two years’ worth of data from five other large hospitals in the state. According to Fine’s data, the hospitals surveyed held 2,922 ethics committee consultations, 974 of which concerned medical futility cases. From those 974 consultations, the hospitals issued 65 letters stating agreement with the attending physicians that treatment should be withdrawn, Fine says. But he says the hospitals actually withdrew treatment in only 27 of the cases, while 22 patients died receiving treatment as they awaited transfers. 4
Before the Act, a hospital could obtain a court injunction to withdraw treatment without giving the family any time to arrange a transfer.
Unlike many previous policies, the Act does not take money into an account. A poor person has the same rights under the Act as a wealthy person.
Bioethicst and practicing MD Beverly B. Nuckols has argued: "There are no futile patients... there is only futile medicine and technology. If my patient suffers organ failure after organ failure, some medicines and technology can become harmful – sometimes by causing side effects and more organ failure, often by prolonging the patient's dying."
The major criticisms of the Act involve the period of time allowed to transfer, and the ability of the ethics committee to make the final decision on whether continued care is considered futile.
The current Act only provides a 10-day period for the patient's family either to find another facility to accept the patient or to obtain a court injunction to extend the time period. If no other facility will accept the patient within the period of time and the family is unable to obtain a court injunction, then the hospital is legally permitted to withdraw life sustaining-treatment from the patient, and to allow the disease process(es) to bring about patient's death. Very few facilities are willing to dedicate their life-saving resources to prolonging the life of a dying patient, even when accepting the patient would be highly profitable for them, and consequently very few families have been able to find a willing facility to accept transfer within ten days.
Furthermore, the ethics committee is essentially the final decision maker in determining whether a patient's care will continue or be terminated. The committee can decide to cease care even when 1) the patient has the financial ability (via insurance or other means) to continue to pay for care and/or 2) the patient has executed a living will or other written advance directive stating a desire to continue treatment.
State Senator Bob Deuell (R-Greenville), who is also a practicing family physician, introduced Senate Bill 439. SB 439 is also known as the "Patient and Family Treatment Choice Rights Act of 2007" and would amend the applicable provisions of the Advance Directives Act to "ensure that, when an attending physician is unwilling to respect a patient’s advance directive or a patient’s or family’s decision to choose the treatment necessary to prevent the patient’s death, life-sustaining medical treatment will be provided until the patient can be transferred to a health care provider willing to honor the directive or treatment decision." SB 439 was referred to the Senate Health and Human Services Committee on February 21, 2007. A hearing is scheduled for April 12, 2007.
State Representative Bryan Hughes (R-Mineola) introduced an identical bill, HB 1094 with 59 co-sponsors. It was referred to the House Public Health Committee on February 22, 2007.
Media coverage of the Emilio Gonzales case has brought debate over SB 439 and HB 1094 to the forefront.
The attempt to change this law did not make it through the 2007 legislative session. It died in the House after the Senate had passed a version of it. Supporters have stated they intend to work toward acceptance of changes in the next session.
- Spiro Nikolouzos
- Terri Schiavo
- Right to Life
- Right to die
- Culture of life/culture of death
- Futile medical care
- Health care reform debate in the United States
- Jacob M. Appel
- ^1 Chapter 166 of the Texas Health & Safety Code
- ^2 Robert L. Fine, M.D.'s detailings of futile care statutes and processes from Baylor Health System
- ^3 White House Press Briefing 2005-03-21
- ^4 As discussed in the 3/2/07 issue of "Texas Lawyer"
- 60 Minutes: The Cost of Dying
- T.M. Pope, Medical Futility Statutes: No Safe Harbor to Unilaterally Refuse Life-Sustaining Treatment, 75 Tennessee Law Review 1–81 (2007)
- Slate: Do the Poor Deserve Life Support?
- Culture of Life: Pull the plug on conscious patients – W's law
- President Bush and Texas Law
- Woman's death highlights health insurance crisis
- Life-Support Stopped for 6-Month-Old in Houston
- Andrea Clark Will Live!
- Disability Advocates: Texas "Futile Care" Law Should Be Euthanized
- Andrea Clark and Texas futile care
- TEXAS STATUTES HEALTH & SAFETY CODE, CHAPTER 166. ADVANCE DIRECTIVES, section 166.046
- Foreign Policy: The Truth About Death Panels: NPR