Able Americans

Part 6 in the 11-Part Series “Is Any Life Unworthy of Living?“

Mark P. Mostert, Ph.D.

Just as medical science pivoted to more “scientific” uses of genetic testing and an increased emphasis on mitigating genetic diseases, the field of bioethics exploded. Bioethics is a philosophical area of study that, among other topics, examines ethical and moral issues around patient wellbeing, medical intervention and death and dying.

The debate was driven by significant medical technological innovations such as the development of mechanical ventilators, dialysis machines and advanced resuscitation methods. This meant that patients who would previously die earlier were living longer. Many of these patients, while being kept alive, were in dire neurological or other serious medical states. Bioethically, questions began to be raised about whether people in such conditions should remain in those medical states—some for years—or whether their quality of life was so poor that their care should be terminated, allowing them to die.

Bioethics therefore, was confronted with some very complicated questions: If patients are unable to get better (for example, in a persistent vegetative state or being terminally ill), should they be allowed to die? Should life be supported when there is no hope of recovery? Do patients have the right to refuse life-saving treatments?

These developments did not happen in a vacuum. Societally, many social movements also influenced the bioethical debates of the era. The rise of the civil rights movement, feminism, and an emphasis on personal autonomy and liberty were all influential. They led to debates around individual choice and control over medical decisions and informed consent.

Furthermore, as ideas around patient rights and patient autonomy took hold, another aspect emerged: “Death with dignity.”

“Death with dignity” quickly became the rallying cry for the assisted suicide and euthanasia movements. Unsurprisingly, it was also an opening for the pro-death movement to begin asserting its authority. For example, the Euthanasia Society of America, while remaining obscure after being founded in 1938, became more powerful, riding the waves of a deepening pro-death culture.

While the culture was debating these serious issues, there were no laws allowing assisted suicide or euthanasia in the United States—but then a key legal case clarified at least some of these thorny topics.

On April 15, 1975, Karen Ann Quinlan, 21, slipped into a coma and then a persistent vegetative state after two days on a crash diet and after consuming a mixture of alcohol and drugs. A persistent vegetative state is a profound neurological state in which the patient loses all conscious awareness but maintains the ability to maintain basic bodily functions. For example, they may open their eyes, engage in reflexive movements and even breathe on their own.

Quinlan was placed on a ventilator and fed by a feeding tube. Soon thereafter, Quinlan’s parents requested that her ventilator be turned off, stating that the ventilator was causing her unnecessary pain.  The county prosecutor intervened and threatened the hospital with a homicide charge if it complied with the parents’ request. The hospital sided with the Quinlans and sought a protective order to disconnect the ventilator.

In November 1975, the Quinlans and the hospital lost a lawsuit in which they argued that letting her die overrode the state’s interest in keeping her alive.  On appeal, the previous outcome was overruled, allowing removal of  Karen’s ventilator. In May 1976, Karen was removed from her ventilator (not her feeding tube, which was considered painless) but continued to breathe on her own. She survived another nine years until her death on June 11, 1985.

The Quinlan case proved to be a watershed moment in the right-to-die debate. Other cases were soon to follow.

Mark P. Mostert, Ph.D., is senior researcher for Able Americans, a project of the National Center for Public Policy Research. This is part 6 of the 11-part series “Is Any Life Unworthy of Living?”  Those wanting to be notified of future installments in the series should subscribe to the Able Americans email list.