When Hope Fades: Debate Rages Over Who Should Decide When Treatment Stops

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Legislative Affairs Feature - October 2006   

By  Ken Ortolon
Senior Editor  

Sun Hudson's life was extremely short, but he garnered much attention at the center of a controversy over who should decide when continuing life-sustaining treatment is futile.

Sun was born in 2004 with a fatal genetic disorder that left his lungs too small to sustain life. But his mother objected when physicians at Texas Children's Hospital in Houston sought to discontinue life-sustaining treatment.

The case ended up in court and brought national attention to a Texas statute that allows doctors and hospitals to stop treatment in futile cases even over the objection of the patient or his or her family. Some right-to-life organizations, who supported the law when it was originally passed in 1999, now say the law is unfair to families and want to change it in the 2007 legislative session.

Physicians and hospitals, however, say the law works well. They warn that opponents' proposals to change the law could have dire consequences for patients and for physicians' ability to exercise their independent medical judgment. 

The Ethical Dilemma  

The Texas law was enacted in 1999 after the Texas Advance Directive Act Coalition (composed of groups interested in end-of-life care issues) developed a compromise agreed to by organizations representing physicians, hospitals, nurses, nursing homes, right-to-life advocates, disability rights advocates, and others.

The law allows a physician who believes further treatment of a patient with a terminal or irreversible condition is inappropriate to initiate a formal process to discontinue care over the objection of the patient or family. The case must be reviewed by a hospital ethics committee. If it agrees with the physician's assessment, the patient or the family is given 10 days written notice that life-sustaining care will be discontinued unless the patient is transferred to another facility.

The Texas Right to Life Committee was part of the coalition and signed off on the law in 1999, but now says it is unfair to families.

"The law does not serve families well," said Elizabeth Graham, the committee director. "It gives the medical community complete power to deny life-sustaining treatment to these patients, and the family members really have no recourse."

Ms. Graham's organization wants families to have more time to transfer their loved ones to another facility.

"Ten days is gravely insufficient," she said, adding that no family has been able to secure a transfer in that time period.

During the 2005 legislative session, about the time a Houston judge ruled that Texas Children's Hospital could withdraw life-sustaining treatment for Sun Hudson (he died March 15, 2005, after his breathing tube was removed), state Rep. Bryan Hughes (R-Mineola) offered an amendment requiring physicians and hospitals to continue treatment for any Medicaid patient until a transfer could be secured. If no other facility would accept the transfer, treatment would have to be continued indefinitely.

That amendment was withdrawn, but it prompted House Speaker Tom Craddick (R-Midland) to direct the House Public Health Committee to study the adequacy of the current law prior to the 2007 session. The issue also likely will come up in the Senate Health and Human Services Committee, which also is examining ways to increase the use of advance directives.

Supporters of the current law are concerned that Texas Right to Life will seek to revive Representative Hughes' amendment but expand it to all cases in which physicians think further care is futile or inappropriate.

Robert L. Fine, MD, director of the Office of Clinical Ethics at the Baylor Health System in Dallas, testified at a House Public Health Committee hearing in August. He says requiring indefinite care for terminally ill patients or patients with irreversible conditions would destroy a necessary tool for physicians.

"There are all kinds of complexities, all kinds of human emotions that play into decisions near the end of life," he said. "The point is, we don't have to use this process that often, but when we need it, we really, really need it."

Indeed, data show that the 10-day notice process has been used sparingly. Statistics from nine major tertiary care hospitals across the state indicate that physicians formally or informally consulted hospital ethics officers about ending life-sustaining care more than 2,800 times between 2000 to 2005, but the inappropriate treatment provision had been invoked only 57 times. And of those cases, only 48 10-day notice letters were issued, and treatment actually was withdrawn at the end of the 10 days only 26 times.

Dr. Fine says disputes on continued treatment usually are resolved through counseling the family and explaining the rationale for the doctor's decision. The exception normally occurs when family members are split over whether to let their loved one go.

A family's opposition can prolong the patient's suffering, he says.

He pointed to the case of a woman in her 20s who was dying of advanced cancer. Her physicians knew further treatment was futile and wanted to discontinue her treatment.

Her family objected, however, so physicians kept her alive for another 27 days in an intensive care unit on a ventilator and administered narcotics to keep the pain at a level she could stand. When care finally was withdrawn, she died within a minute.

Two other instances were cited in briefing materials for legislators. Both involved patients dying from heart disease. Their families would not accept the recommendations that treatment be stopped.

"In both cases, the dying and the attendant suffering of the patients were prolonged … but the patients still died." 

Hope for Consensus  

Despite rancorous testimony at the August hearing, all sides seem willing to work through the Texas Advance Directive Act Coalition to resolve the problems. Ms. Graham says her organization hopes to reach a consensus on extending the 10-day notice period. Texas Medical Association and Texas Hospital Association officials say they simply want to resolve the dispute in a way that focuses on the patients' best interests while being fair to the families and the physicians.

Austin lobbyist and coalition chair Greg Hooser, JD, is confident that agreement can be reached. "We were in precisely this same situation and same dismal outlook in 1998 and 1999, yet the coalition did come together with a consensus bill. I expect the timing to be about the same this time."

Ken Ortolon can be reached by telephone at (800) 880-1300, ext. 1392, or (512) 370-1392; by fax at (512) 370-1629; or by email at Ken Ortolon


TMA Provides End-of-Life Care Assistance

The  TMA Web site  offers a wealth of information on medical ethics and end-of-life care issues.

The site includes information on advance directives - including guidelines for physicians and signers, and forms for people older and younger than 18 - distributed by the TMA Board of Councilors.

Also available are medical power of attorney information and forms, the American Medical Association's Principles of Medical Ethics, opportunities for medical ethics continuing medical education credit, and current TMA Board of Councilor opinions. 

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