The Right to Die (Part 1) – by Dr. Richard B. Fife

I digress a bit from my blog on assisted-suicide to reflect on the “right to die.” On April 15, 1975, I was working on a doctoral degree at Drew University in Madison, New Jersey. The university is located just a few miles from the Newton Memorial Hospital, where on that day a bright and energetic 21 year old woman named Karen Ann Quinlan would be rushed to the emergency room. At the time she was already in a deep coma and in what would later be called a persistent vegetative state. It would be weeks before those of us on the campus would hear anything about this remarkable young woman. It would be months before her name would become a household word and the events surrounding her would begin to change the course of healthcare and end of life care around the country.

Thirty five years later on April 15, 2010, Dr. Kenneth Doka and I were giving ethics presentations to a New Jersey state gathering of palliative care nurses at the invitation of Rutgers University. My presentation was focused on case studies of three Catholic women – Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. As I began my presentation on Karen Ann Quinlan, I noticed that her mother was sitting near the front of the audience. Julia Duane Quinlan speaks at conferences across the country on ethics, end-of-life care, hospice and the importance of her daughter’s landmark case. Following the presentation Ms. Quinlan invited Ken and me to join her for dinner. At dinner, I asked her what she thought was the most important part of the legal fight surrounding her daughter. She answered that question by talking about how the case had become so closely identified with the “right to die.” In
one of her books she states “we felt to choose not to prolong life artificially was the ultimate respect for human life. Death was not desired, only accepted.” (Karen Ann Quinlan’s Mother Remembers). Indeed, after the respirator was finally removed, Karen Ann Quinlan would live almost a decade in her suspended state. Ms. Quinlan said that they were talking about respect for life, not the “right to die.” She acknowledged that prior to her daughter’s case there was very little discussion on the particular issue of the right to die.

There had been important legal rulings on a patient’s right to give or withhold consent in the decades prior to 1975, but it was the Quinlan case that spoke so strongly to end of life care and one’s right to die. In this case, this was true even of the patient was in a permanent persistent vegetative state. The patient did not forfeit the rights; they just had to be exercised by a surrogate. In the Quinlan case, it was her father. As my colleague Bruce Jennings has pointed out, what made this such a landmark case was that it was “the first time that an individual’s right to refuse life-sustaining medical treatment was affirmed by an American appellate-level court.” (“Ethics, End of Life Care, and the Law.” In Living with Grief: Ethical Dilemmas at the End of Life, 2005.)

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