The Blog

Suing for the Right to Live

Two cases of European doctors refusing to treat their patients are cause for concern: Futile Care Theory may be coming to America.

11:00 PM, Mar 10, 2004 • By WESLEY J. SMITH
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A LITTLE NOTICED LITIGATION in the United Kingdom could be a harbinger of medical woes to come here in the United States. Leslie Burke, age 44, is suing for the right to stay alive. Yes, you read right: Burke, who has a terminal neurological disease, is deathly afraid that doctors will refuse to provide him wanted food and water when his condition deteriorates to the point that has to receive nourishment through a feeding tube.

Burke' fears are, quite rationally, based on current international legal and bioethical trends. Futile Care Theory, the bioethical maxim that gives doctors the right to refuse wanted life-sustaining treatment based on their perception of the quality of their patient's life, has imbedded itself like barbed hook into British medical ethics and law. Indeed, current British Medical Association ethical guidelines permit doctors to stop tube-supplied nutrition and hydration if they believe the patient's quality of life is poor, leading to eventual death. In such cases, patients' or relatives' views on the matter must succumb to the medical and bioethical consensus.

Making matters worse for Burke, British courts previously stamped their imprimatur upon Futile Care Theory, bringing with it the terrifying prospect that Burke will be denied wanted life-sustaining treatment. Indeed, a previous lawsuit involving a disabled child already granted doctors the final say as to whether the boy lives or is abandoned to death through the denial of resuscitating treatment.

The case involved David Glass, who in 1998 at age 12 suffered respiratory failure. His parents rushed him to St. Mary's Hospital in Portsmouth, only to have doctors refuse to save his life. Not only that, they sought to inject David with a palliative agent that would have further suppressed his respiration. Their reasoning: David's profound development and physical disabilities made his life not worth living.

Amazingly, David's folks were able to resuscitate him after the doctors turned their backs. Then, outraged at the medical discrimination imposed against their son, they sued to prevent doctors from refusing to save David again if he suffers another medical emergency. But the unrepentant doctors fought back, one testifying that he objected to the parents' resuscitative actions because they had "prevented him from dying."

Clearly, the issue in the case wasn't whether David's life was beyond saving but whether it was worth saving. Shockingly, the trial and appellate courts supported the doctors, ruling that in the United Kingdom, doctors--not patients or parents--have the final say as to who should live and who should die. And if Burke loses his case, it will mean that competent patients in Britain who opt in advance for life-sustaining treatment in the event of future incapacitation, cannot be confident that their desires will be respected.

LEST YOU STRETCH, yawn, and think that Burke's fears have little relevance here, the dark shadow of Futile Care Theory has already reached our shores. Throughout the country, hospital and nursing home bioethics committees have begun to quietly promulgate procedural protocols that allow them to impose Futile Care Theory on America's most defenseless and helpless patients.

These "medical futility" or "inappropriate care" guidelines establish internal bureaucratic procedures that generally work something like this:

* In the event of a dispute over providing wanted life-sustaining treatment, the matter will first be discussed informally among bioethics, chaplains, social workers, doctors, family, and patient (if capable)

* If the dispute cannot be resolved informally, it will be brought to the hospital bioethics committee or other body established for "adjudication."

* The committee hears from the doctors, family, bioethics experts, and others. If the committee rules that the treatment is not to be provided, the patient will be denied all further treatment in the hospital, other than comfort care--this, even if the family finds a doctor willing to provide the desired services.

* At that point, patients and their families have three options: (1) Acquiesce, meaning that the patient probably dies. (2) Find another hospital--a daunting if not impossible task given that the patients who would be refused care under futility protocols would usually be the most expensive to care for and thus, given the economics of managed care, probably unwelcome in another institution. (3) They could sue.