I volunteered to serve on a newly started hospital ethics committees in the 1990s. While I wanted to help analyze difficult cases and serve as a resource for hospital personnel with ethical concerns, I became increasingly alarmed when I saw cost containment and judgments based on “quality of life” brought up as decisive factors by others on the committee.
I understood more when I researched the beginnings of ethics committees.
After numerous failed attempts to legalize euthanasia, the Euthanasia Society of America invented the “living will” in 1967 as a first step in gaining public acceptance of euthanasia by promoting a so-called “right to die”. The group achieved much success by publicly promoting “living wills” as a patient rights document that would give people and/or their families choice and control at the end of life or, especially after the 1976 Karen Quinlan case, if their quality of life was considered too poor.
Karen Quinlan’s case (where despite predictions, she continued to live for years after her ventilator was removed) effectively extended the “right to die” to non-terminally ill people said to be in a “persistent vegetative state”, a term invented in 1972 to describe brain-injured people who were awake but assumed unaware.
Eventually the Euthanasia Society of American became The Society for the Right to Die and finally evolved into Compassion and Choices and the “right to die” became “death with dignity” by lethal overdose.
Ethics committees in hospitals began to emerge after the Quinlan case as an alternative to controversial court cases and became more prevalent in the 1980s, especially after the Baby Doe case in 1982. That case involved a newborn boy with Down Syndrome and an easily correctable defect that prevented him from eating safely. The parents refused the surgery and were upheld by a judge. An appeal was started but the baby died of starvation and dehydration before his appeal could be heard. Disability, pro-life and other groups and individuals were outraged.
Concerns about lethal medical discrimination against infants with disabilities resulted in the Baby Doe Regulations mandating maximal care to any impaired infant, unless certain exceptions are met.
However, there was much medical and legal opposition to these rules and:
“By the end of 1984, the American Academy of Pediatrics and the American Hospital Association issued statements supporting the use of interdisciplinary ethics committees as an alternative to governmental investigation in such cases.” (Emphasis added)
AN UNEXPECTED PROBLEM
But a surprising development happened on the way to privatizing life and death decisions through ethics committees.
Some people and families resisted and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in guilt or dysfunctional family relationships.
However, these doctors and ethicists were shocked when in 1991, a court ruled in favor of the husband of Helga Wanglie when he insisted that treatment be continued for his wife despite a “persistent vegetative state” diagnosis.
That court decision was widely criticized in ethics circles and in 1999, Texas enacted a medical futility law.
THE TEXAS ADVANCE DIRECTIVES ACT
In 1999, Texas became the first state to expressly permit doctors to stop life sustaining treatment without consent after a review process by an ethics committee. According to the Texas Advance Directives Act, when care is deemed “futile” or “inappropriate” and the patient or family disagrees, the patient or family is given 10 days to find another health facility for the patient and pay for “any costs incurred” in the transfer. “If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. “ (Emphasis added)
Thus an ethics committee becomes the equivalent of a death panel.
This kind of ethics committee overreach has now spread far beyond Texas. For example in 2002, I was involved in a similar a case in Missouri involving a brain-injured man despite the state not having a Texas-style law. It was difficult to find another health care facility to accept the man within the 2 week deadline given by the hospital but ultimately the man not only survived but recovered after the transfer.
The Texas law is now being challenged in the case of Evelyn Kelly, individually, and on behalf of the estate of David Christopher Dunn v Harris Methodist Hospital, a case where a terminally ill, conscious man’s mother fought the ethics committee’s decision to remove his ventilator.
Although Mr. Dunn has since died, the case continues on the question of whether the Texas law is constitutional or not.
In the summary judgement motion filed, Ms. Kelly and her lawyers state that the ethics committee’s action “is an alarming delegation of power by the state law” and “is a far cry from the due process intended to protect the first liberty mentioned in Article 1, Section 19 of the Texas Constitution and that of the Fourteenth Amendment”. (Emphasis added)
Mrs. Kelly and her lawyers make a good point. How can a life and death decision be automatically delegated by law to an unregulated, unaccountable group of individuals outside the legal system?
Even worse, how can the right to live have less legal protection than the “right” to be dead?
The answers to these questions are critically important.