Ironically, the "right to die" movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. —Nancy Valko, journalist, medical ethicist, and intensive care unit nurse, "Bioethics Watch," Voices, 2003
Bob Schindler [father of Terri Schiavo] poignantly observes, "We pay great lip service in this country to disability rights, but as the degree of a person's disability increases, the level of legal protection that person receives decreases." —Nancy Valko, lifeissues.net, August 2003
In a November 4, 2002, story in The Philadelphia Inquirer, "Penn Hospital to Limit Its Care in Futile Cases," Stacey Burling reported that the ethics committee of the University of Pennsylvania Hospital had approved new guidelines which stated, "intensive care would not routinely be given to patients in a persistent vegetative or minimally conscious state. Only patients who had explicitly requested such care would get it." This exclusion from rehabilitative or other forms of life-enhancing treatment will apply to "patients with severe brain damage."
These patients, for whom the hospital and its ethics committee have abandoned hope, would not even be admitted to an ICU (intensive care unit).
In David Caruso's Associated Press report (December 12, 2002) on this last mile for patients at the University of Pennsylvania Hospital, he quoted Stephen Gold, a lawyer in Philadelphia who specializes in representing people with disabilities.
Noting this discounting of the lives of patients who cannot speak for themselves and have not written advance directives, Gold said that the University of Pennsylvania Hospital, and other institutions that now have similar policies, might also consider cutting off intensive care for people without health insurance or who have other handicaps beyond present guidelines.
"It is a slippery slope they are going down," Gold continued. "If we have a way to provide a medical treatment for people that will keep them alive, we should always provide it, unless they have a living will saying we shouldn't."
Gold also told the Associated Press, "Not everyone agrees on what constitutes a life worth living. I had a client with cerebral palsy once who was asked to sign a do not resuscitate order [do not revive the patient]." But that patient had gone into the hospital "to be treated for appendicitis."
[Discovery Institute Fellow] Wesley J. Smith, an expert on the growing culture of death that is being proposed and implemented by hospitals and bioethicists, makes the chilling point: "Now, a new medical hegemony is arising, one that proclaims the right to declare which of us have lives worth living and are therefore worth treating medically, and which of us do not.
"Unless people object strongly . . . to this duty to die . . . and legislatures take active steps to intervene, this new and deadly game of 'Doctor Knows Best' will be coming soon to a hospital near you."
Wes is one of the writers and researchers I consult on this nationwide movement to get the public to endorse legal euthanasia for those who would be "better off dead," as certain bioethicists say of patients for whom more treatment is "futile." I strongly recommend Smith's revised and updated Forced Exit (Spence Publishing Company, 111 Cole Street, Dallas, TX 75207; also available on amazon.com).
Another specialist in these life-or-death matters whom I have relied on for many years is Nancy Valko. She not only writes extensively and gives workshops on medical ethics, but actually also works full-time in the intensive care unit at a county hospital in St. Louis.
Among Valko's nursing specialties are oncology, kidney machines, trauma, cardiac and cancer care, and patients who may or may not be in a persistent vegetative state. Therefore, she is continually on the front line of the kinds of issues involved in Terri Schiavo's case, and the many more to come.
In an article ("Futility Policies and the Duty to Die," Voices, "Bioethics Watch," wf-f.org), she writes:
"This theory [that some lives are no longer worth living] has now evolved into 'futile care' policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved. . . . Thus, the 'right to die' becomes the 'duty to die,' with futile care policies offering death as the only 'choice.' . . . A poor prognosis, which can be erroneous and is seldom precise, will become a death sentence."
I have debated bioethicists who are true believers in the "duty to die" when care is "futile." These exchanges have been on college campuses, radio, and television. When I bring up the history of "futile care" in pre-Hitler Germany (as I did in last week's column), the "duty to die" advocates become deeply offended. Nonetheless, they are sincerely continuing a lethal legacy.
Nancy Valko continues: "Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions such as withdrawing medically assisted food and water from a severely brain-damaged but non-dying person were considered illegitimate no matter who was making the decision.
"But," Nancy Valko emphasizes, "with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and 'quality of life' has become the overriding consideration. Over time, the ethical question, 'what is right?' became 'who decides?—which now has devolved into 'what is legally allowed?' "
In the aforementioned November 4 Philadelphia Inquirer story, Stacey Burling reported what physicians and bioethicists consider a worrisome obstacle to expanding "what is legally allowed."
"Hospital leaders [around the country] fear they would lose a lawsuit if they denied care demanded by a family." These officials and bioethicists want more case law to enable them to end lives they consider "futile."
Until the media spend more space and care on who decides whether—and how—certain disabled Americans should die, I recommend your remembering that, as disability rights activists say, many of us are only temporarily able.