Remembering Karen Ann Quinlan: The case that sparked the movement for patients’ rights near the end of life
Myron Yaster MD and Alyssa M Burgart MD MA
March 31, 2026, marked 50th anniversary of the New Jersey Supreme Court ruling in the Karen Ann Quinlan case that established patients’ rights in end-of-life decision-making. Quinlan was in a persistent coma and demonstrating an unresponsive wakefulness syndrome. Her parents fought to discontinue extraordinary care (mechanical ventilation) keeping her alive. Quinlan’s case established for the first time that decisions near the end of life should be made by patients and families, not by doctors and hospitals alone. This decision established the legal precedent for patients’ rights to refuse life-sustaining treatment, initiating the “right-to-die” movement and reinforcing surrogate decision-making for incapacitated patients.
Because most of you reading the PAAD were not even born when this historic decision was made, I thought reviewing it would be an ideal topic for the PAAD. I asked Dr. Alyssa Burgart Alyssa Burgart of Stanford University to assist. Dr. Burgart is a pediatric anesthesiologist and bioethicist and has taught extensively about the profound impact the Quinlan case has had on law, bioethics and the pursuit of death with dignity. Myron Yaster MD
Original article
Robert S. Olick: Associate Professor Emeritus of Bioethics and Humanities, SUNY Upstate Medical University: 50 years ago, Karen Quinlan’s coma sparked the movement for patients’ rights near the end of life. The Conversation March 23, 2026.
https://theconversation.com/50-years-ago-karen-quinlans-coma-sparked-the-movement-for-patients-rights-near-the-end-of-life-277318
Brief background
While at a friend’s party in April 1975, 21-year-old Karen Ann Quinlan suffered a cardiac arrest and loss of oxygen to the brain. Her friends rushed to the hospital, where she was resuscitated. After a while, it became clear to her doctors and family that although she was not brain dead she was in an unresponsive wakefulness syndrome. Her devoutly Catholic parents, Joseph and Julia Quinlan, decided along with their priest, that they did not want Karen’s biological life prolonged indefinitely in this condition.
Catholic teachings permit removal of extraordinary treatments, like respirator support or dialysis. However, ordinary care and treatment such as feeding tubes and the use of antibiotics, are morally obligatory and should be continued. Perhaps of interest to readers of PAAD, Pope Pius XII made this distinction in an address to an International Congress of Anesthesiologists in 1957.
Ms. Quinlan’s parents requested the respirator be removed and that their daughter be allowed to die naturally. But the doctor and hospital refused, concerned withdrawing the ventilator may constitute homicide. This prompted her family to petition to the New Jersey Superior Court to end Karen’s life support and appoint Karen’s father as her guardian. However, both requests were denied. The state claimed its right to protect Karen’s life was greater than her parents’ ability to refuse medical treatments on her behalf.
“On March 31, 1976, the New Jersey Supreme Court issued a unanimous opinion in favor of the Quinlans. The justices held that patients have a constitutional right of privacy to refuse unwanted life-sustaining treatments and that this right should not be lost when illness, disease or disability take away our ability to choose for ourselves. Family members may decide on behalf of incompetent loved ones, basing decisions on what the patient would want and acting in their best interests.”
The Quinlan case ushered in two important concepts now essential to everyday ethical practice:
· the right for adults with capacity to refuse treatment; and
· surrogate decision making – the ability for the people who know someone best to make decisions on their behalf when they can’t make decisions for themselves.
Further, Chief Justice Richard Hughes declared that the patient’s wishes are “predominant”, including over the objections of treating physicians. Highlighting responsibilities to the public, he said the court must “be responsive not only to the concepts of medicine but also to the common moral judgment of the community at large.” As Olick writes, “With these words, the decision rejected centuries of physician paternalism – of ‘doctor knows best.’ It ushered in the era of patient autonomy that puts patients and families first at the bedside.”
Liberated from her respirator on May 16, 1976, Karen Ann Quinlan continued to breathe on her own and was eventually discharged from the hospital where she had resided for nearly a year. She died nine years later on June 11, 1985.
In teaching medical students about the importance of both informed consent and informed refusals, the Quinlan case remains relevant. It may be hard to believe that there was a time when clinicians could – and would – refuse to withdraw life sustaining therapies for a patient. This case revolutionized the way we think about end of life decision making and the critical role of family members and friends in informing and guiding care decisions.
As pediatric anesthesiologists, these issues emerge most critically as our patients progress through adolescence, gaining agency, and ultimately, legal authority over their healthcare decisions. For those of us in primarily pediatric practices, it can be a bit of a jolt to realize that one’s patient has crossed a legal line into adulthood and that their rights to make their own decisions must be highlighted and elevated. For our patients with significant intellectual disabilities, we are able to continue to rely on parents/caregivers as decision makers thanks to the Quinlan case.
Finally, one of the reasons we thought it would be a good idea to review the Quinlan case is for you, the readers of the PAAD, to have end of life discussions with your families and trusted advisors. We know that very few Americans have had these discussions and/or completed an advance care planning document. After reading today’s PAAD, why not take the opportunity of doing this?
If you’re feeling a little unclear on how to begin these conversations, consider a resource such as Death Over Dinner, to assist you and the people who matter most in your life.
Send your thoughts and comments to Myron (myasterster@gmail.com ) and he will post in a Friday reader response.
Footnote[AB1] : In 1975, Ms. Quinlan’s condition was referred to as a “persistent vegetative state,” a term that has been understandably criticized for both comparing human beings to vegetables and for significant diagnostic errors related to disorders of consciousness. In 2010, updated, more descriptive language was introduced, including Unresponsive Wakefulness Syndrome and Minimally Conscious State.
What still feels so powerful about Quinlan is that it did more than move authority from physicians to families. It dissolved a hiding place.
Before cases like this, the medical imagination could treat the continuation of treatment as the safest ethical ground, because stopping felt like an act while continuing felt like neutrality, as if disease, not the clinician, were the agent, and the physician were merely declining to interfere. Quinlan exposed that as an illusion. Continuing a life-sustaining intervention is also a choice, with its own moral weight, its own implicit interpretation of the person, and its own cost to the family made to watch a body preserved after the life they recognized had become unreachable.
The case is remembered for expanding patient rights, but it did something quieter and just as radical: it abolished the default that had let everyone avoid authorship. Afterward, both continuing and stopping were decisions someone had to own.
This is why surrogate decision-making is more than a legal mechanism. The standard the court reached for was not the surrogate’s preference but the patient’s, what this person would have wanted. The task is therefore paradoxical: to keep a silenced person’s voice authoritative at the very moment they cannot raise it.
And the difficulty is that the body has not gone silent at all. It breathes, it persists, it goes on producing the loudest signal in the room. The surrogate’s real work is to keep that signal from being mistaken for the person’s will, to protect the patient from being reduced to physiology exactly when they can no longer speak against the reduction.
The hard lesson stays current: medicine must preserve life without letting life-preservation become an automatic moral reflex. Sometimes respecting the patient means recognizing that the most aggressive form of treatment can be the least faithful form of care.