Advance Directives Act
Encyclopedia
The Texas
Texas
Texas is the second largest U.S. state by both area and population, and the largest state by area in the contiguous United States.The name, based on the Caddo word "Tejas" meaning "friends" or "allies", was applied by the Spanish to the Caddo themselves and to the region of their settlement in...

 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), 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's 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 statue has never legally had that title.

The statute

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disagrees may appeal to the relevant state court and ask the judge to grant an extension of time before treatment is withdrawn.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• If either the family does not seek an extension or the judge fails to grant one, futile treatment may be unilaterally withdrawn by the treatment team with immunity from civil or criminal prosecution.


The bill was signed into law while George W. Bush
George W. Bush
George Walker Bush is an American politician who served as the 43rd President of the United States, from 2001 to 2009. Before that, he was the 46th Governor of Texas, having served from 1995 to 2000....

 was Governor of Texas
Governor of Texas
The governor of Texas is the head of the executive branch of Texas's government and the commander-in-chief of the state's military forces. The governor has the power to either approve or veto bills passed by the Texas Legislature, and to convene the legislature...

. 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
Terri Schiavo
The Terri Schiavo case was a legal battle in the United States between the legal guardians and the parents of Teresa Marie "Terri" Schiavo that lasted from 1998 to 2005...

's situation,
in particular his signing of the Incapacitated Person's Legal Protection Act.

Similar legislation, modeled on the Texas law, was proposed in Idaho in 2009, but was defeated.

Cases

Sun Hudson: On March 15, 2005, six-month-old infant
Infant
A newborn or baby is the very young offspring of a human or other mammal. A newborn is an infant who is within hours, days, or up to a few weeks from birth. In medical contexts, newborn or neonate refers to an infant in the first 28 days after birth...

 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
Tirhas Habtegiris
Tirhas Habtegiris , a legal female immigrant into the United States from Eritrea, was removed from a respirator under Texas law against the wishes of her family, Habtegiris had cancer that had spread to her lungs and she was diagnosed as terminally ill.There is debate over whether Habtegiris was...

, 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
Leigh's disease
Leigh's disease, also known as Subacute Necrotizing Encephalomyelopathy , is a rare neurometabolic disorder that affects the central nervous system...

, 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.

Support

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."

Criticism

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
Living will
An advance health care directive, also known as living will, personal directive, advance directive, or advance decision, are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or...

 or other written advance directive stating a desire to continue treatment.

Repeal Efforts

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.

See also

  • Spiro Nikolouzos
    Spiro Nikolouzos
    Spiro Nikolouzos was a Texas man incapacitated from bleeding related to a cerebral shunt, whose care was the subject of an appeal of The Texas Futile Care Law....

  • Terri Schiavo
    Terri Schiavo
    The Terri Schiavo case was a legal battle in the United States between the legal guardians and the parents of Teresa Marie "Terri" Schiavo that lasted from 1998 to 2005...

  • Right to Life
    Right to life
    Right to life is a phrase that describes the belief that a human being has an essential right to live, particularly that a human being has the right not to be killed by another human being...

  • Right to die
    Right to die
    The right to die is the ethical or institutional entitlement of the individual to commit suicide or to undergo voluntary euthanasia. Possession of this right is often understood to mean that a person with a terminal illness should be allowed to commit suicide or assisted suicide or to decline...

  • Culture of life/culture of death
    Culture of life
    The phrase "culture of life" is a term used in discussion of moral theology, especially of the Catholic Church. Its proponents describe it as a way of life based upon the theological truth that human life at all stages from conception through natural death is sacred...

  • Futile medical care
    Futile medical care
    Futile medical care refers to the belief that in cases where there is no hope for improvement of an incapacitating condition that no course of treatment is called for. It is distinct from the idea of euthanasia because euthanasia involves active intervention to end life, while withholding futile...

  • Euthanasia
    Euthanasia
    Euthanasia refers to the practice of intentionally ending a life in order to relieve pain and suffering....

  • Health care reform debate in the United States
    Health care reform debate in the United States
    The health care reform debate in the United States has been a political issue for many years, focusing upon increasing coverage, decreasing the cost and social burden of healthcare, insurance reform, and the philosophy of its provision, funding, and government involvement...

  • Thaddeus Mason Pope
    Thaddeus Mason Pope
    Thaddeus Mason Pope is an American bioethcist and law professor at Widener University. Pope is a leading authority of medical futility and the author of numerous articles on articles on law and medicine, including: more than nearly twenty law review and bar journal articles and over 25...

  • Jacob M. Appel
    Jacob M. Appel
    Jacob M. Appel is an American author, bioethicist and social critic. He is best known for his short stories, his work as a playwright, and his writing in the fields of reproductive ethics, organ donation, neuroethics and euthanasia....


External links

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