There are many ways to kill a sick or disabled person. Removing food and water is only one. Since Steven Becker's March operation to relieve pressure on his brain, discussion has revolved around eliminating food and water, provided through a tube into his digestive tract. This medically assisted food and water was correctly called "comfort care" in records at St. John's Mercy Medical Center in suburban st. Louis before the decision was made to end his life. Now the hospital as well as the media calls it "life support."
But hidden from the public, St. John's and its ethics committee have also decreed that other treatment -- antibiotics, other beneficial medications, physical therapy and a possible operation to correct his now infected brain shunt -- can also be denied to Steven even though the legal process is still proceeding.
Steven has been deemed by St. John's Mercy to be in a so-called "permanent vegetative state", defined as awake but unaware, although that diagnosis is disputed by at least one other doctor. Ironically, pain medications and muscle relaxants are now considered among the few treatments that may be provided. Why would a supposedly unresponsive person even need pain medication? Why is Steven's family told that information about his current medications is "confidential"?
The truth is that Steven has responded and smiled since his brain surgery, but is now no longereven allowed to sit up in a chair. Although family members and even hospital records have reported this responsiveness, the false picture of a motionless "man in a coma" persists.
With the kind of "death ethics" mentality promulgated by the hospitals ethics committee, it isn't surprising that even Steven's hygiene has suffered. When family members have seen Steven in need of a bath during their visits, they have offered to bathe him themselves. But even washcloths have suddenly become unavailable, so family members bring their own. It is outrageous that St. John's ethics committee can sanction the secret denial of beneficial treatment which had helped Steven progress and fight infection, while publicly continuing his feedings until a September hearing only because of a court order. Even a death row inmate is allowed basic medical treatment during the appeals process. Is this where the "right to die" has brought us?
St. John's ethics committee seems bent on setting a speed record for such cases and has ignored the studies and news reports showing that many severely brain-injured people eventually recover -- sometimes fully recover -- with time and treatment.
The family asked for this time for Steven. However, the ethics committee decided that Steven would not make a good enough recovery and convinced his wife Christie to accept its recommendations to end his life. Other family members were offered similar "counseling" and meetings to induce them to accept the recommendations and thus avoid controversy, but they refused. Now Steven's fate will be decided by a judge.
Steven never chose this situation. He had taken courses toward a possible future as a nurse. The court-appointed guardians report stated that because he was medically sophisticated enough to understand ethical dilemmas and had made alleged comments that he wouldn't want to live like people in other public "right to die" cases, this constituted "clear and convincing" evidence that he would rather die than live with severe disabilities.
However, his family says that, even after he had consulted with a neurosurgeon and knew brain surgery was being considered, he adamantly refused to sign an advance directive.
The hospital record proves that he did not sign an advance directive which the law required he be offered. This should confirm that he did not choose to refuse treatment even though he was aware of the possibilities. This refusal is his last known health care decision.
What does it take to refuse the "right to die"? This is a question we all should be asking.
Until the public is honestly informed about the issues involved -- and until they demand the highest ethical standards from health care professionals and hospitals -- everyone is potentially at risk of dying prematurely when an ethics committee decides their lives are of insufficient quality. With the push to contain costs, coupled with multi-million dollar malpractice suits when a person survives but is disabled, we must also be alert to an inherent conflict of interest when an ethics committee urges withdrawing or limiting necessary care.
Also, doctors and nurses have the right and the responsibility to resist the death ethics mentality and protect their most vulnerable patients who cannot defend themselves due to age, disability, or mental impairment.
Steven Becker isn't the first person to face a cruel death by denial of basic care -- despite refusing to sign a living will or other advance directive. But, please, let him be the last.
Sandy Casperson is Mr. Becker's aunt; Nancy Valko, RN, is Voices bioethics columnist. This column appeared in the St. Louis Post-Dispatch, and is reprinted with the authors' permission.