Karen Ann Quinlan: The Case That Changed End-of-Life Care

Who was Karen Ann Quinlan?

Karen Ann Quinlan was born in Scranton, Pennsylvania, on 29 March 1954. A few weeks later, Joseph and Julia Quinlan adopted her. They were a Catholic family in Roxbury Township, New Jersey. Karen grew up with a younger sister, Mary Ellen, and a younger brother, John (Wikipedia).

Her mother remembered a lively young woman. Karen loved sports. She had a beautiful singing voice and could play the piano by ear. "She was so full of life," Julia said. "She had great laughter; it was just contagious" (Karen Ann Quinlan Hospice).

In April 1975, shortly after her 21st birthday, Karen collapsed after an evening out with friends. She was taken to hospital in a coma. Her brain had been badly damaged.

Doctors later said she was in a persistent vegetative state. This is a condition where a person's body still works, and their eyes may open, but they show no signs of awareness of themselves or the world. A breathing machine, called a ventilator or respirator, kept her alive.

Months passed. Karen did not improve. Her parents, with support from their parish priest, came to believe she would not want to live this way. They asked the doctors to stop the breathing machine.

The doctors said no. The local prosecutor warned he could bring homicide charges against the hospital if it stopped the machine. So in September 1975, Joseph Quinlan went to court.

What did the courts decide?

The case went through two courts.

The first court said no. In November 1975, Judge Robert Muir of the New Jersey Superior Court refused the family's request. Karen's doctors did not support stopping the machine. The judge said this was a medical decision, not a decision for judges. He wrote that society "places this responsibility in the hands of the physician" (court record).

The highest court in New Jersey said yes. On 31 March 1976, the New Jersey Supreme Court decided the case In re Quinlan. All seven judges agreed. Chief Justice Richard Hughes wrote the opinion (full text).

Here is the key reasoning in plain English.

1. People have a right to refuse treatment. The court said the right to privacy in the US Constitution is broad enough to include a patient's choice to say no to medical treatment "under certain circumstances".

2. The more serious the treatment and the worse the outlook, the stronger that right. The state has an interest in protecting life. But the court explained that this interest gets weaker as treatment becomes more invasive and hope of recovery becomes smaller:

"the State's interest contra weakens and the individual's right to privacy grows as the degree of bodily invasion increases and the prognosis dims" — New Jersey Supreme Court, In re Quinlan, 1976

Think of a set of scales. On one side is the state's duty to protect life. On the other is the person's right to decide about their own body. For a simple blood transfusion that will probably save a life, the state's side is heavy. For round-the-clock machines with no hope of recovery, the person's side becomes heavier.

3. The family can speak for someone who cannot. Karen could not tell anyone what she wanted. Friends told the court about things she had said in past conversations. But the court said those conversations were not strong enough evidence on their own. Instead, it said the "only practical way" to protect her right was to let her guardian and family give their best judgment about what she would choose. The court made Joseph Quinlan her guardian.

4. A committee should check the decision. If Karen's doctors decided she had no reasonable chance of returning to a "cognitive, sapient state" (being aware and able to think), they had to consult the hospital's "Ethics Committee" or a similar group. If that group agreed, the machine could be stopped.

5. This would not be a crime. The court said a death after stopping treatment in this situation would be "expiration from existing natural causes", not homicide. No one involved would face civil or criminal liability.

The court rejected two other arguments made for the family: that religious freedom gave them the right, and that keeping Karen on the machine was "cruel and unusual punishment". The US Supreme Court later declined to hear an appeal (Cruzan, 1990).

What happened to Karen after the ruling?

In May 1976 Karen was taken off the breathing machine. To the surprise of many people, she kept breathing on her own (Wikipedia).

She lived for about nine more years in a New Jersey nursing home. She received food and fluids through a tube. Her parents never asked for the tube to be removed. They saw the breathing machine as an "extraordinary" treatment, but not the feeding tube.

Karen died in June 1985. She was 31.

"It was most difficult, to watch your daughter die slowly for 10 years," Julia said later (Karen Ann Quinlan Hospice). Yet she never doubted the family's choice:

"I have no regrets. We would do the same thing all over again." — Julia Quinlan, Karen's mother

What changed because of the Quinlan case?

The Quinlan case did not create one new law. It started a chain of changes in courts, hospitals and homes.

Many more court cases followed. In 1990 the US Supreme Court decided Cruzan v. Director, about Nancy Cruzan, a young Missouri woman in a similar condition. The justices called Quinlan "the seminal decision", meaning the case that started it all. They noted 54 reported court decisions on refusing life-sustaining treatment between 1976 and 1988. Our guide to the Nancy Cruzan case tells her story.

Hospital ethics committees spread. The court's idea of an "Ethics Committee" was new to most hospitals. A 1983 study found that only about 1% of US hospitals had one. By 1987, more than 60% did. By the late 1990s, about 93% had one. A 2016 systematic review found that court cases, government advice and professional guidelines drove this growth. In the early 1990s, new rules from the Joint Commission, which accredits US hospitals, made these committees the usual way to handle ethical problems.

The early committees were narrow. A 2005 review by Dr Robert Fine notes that the court really asked for a "prognosis committee", focused on whether recovery was possible. Today's committees are broader. The 2016 review found they now include more nurses and community members, and they handle many more cases.

Laws on advance directives appeared. An advance directive is a written document that says what treatment you want or do not want if you cannot speak. In 1976, the same year as the Quinlan ruling, California passed the first US law that clarified the right to refuse life-sustaining technology. By the early 2000s, every US state had such laws. Our section on patient rights and end-of-life planning explains how these documents work today.

In 1990, Congress passed the Patient Self-Determination Act. It requires hospitals and nursing homes that take Medicare or Medicaid to tell patients in writing about their right to accept or refuse treatment and to make an advance directive.

Hospice care grew. In 1980, Joseph and Julia Quinlan founded a hospice in New Jersey using money from their book about Karen. They promised never to turn away patients who could not pay. Today it is called Karen Ann Quinlan Hospice. Julia later said: "Her life served a purpose." To learn more about this kind of care, read our guide to palliative care.

Why did people support the ruling?

Supporters saw the ruling as common sense and compassion.

• Patient autonomy. Autonomy means the right to make decisions about your own body. Supporters said a person should not lose this right just because they can no longer speak.
• Families know the person. The court trusted the people who loved Karen most to judge what she would want.
• Machines should serve patients. Supporters argued that technology should help people recover, not only keep a body working with no hope of awareness.
• Faith supported the family. The Quinlans' choice followed Catholic teaching. The Church's 1980 Declaration on Euthanasia says refusing burdensome treatment "is not the equivalent of suicide" but "an acceptance of the human condition". Julia Quinlan put it simply: "there is a time for each of us to die" (The Spokesman-Review, 2005). To see how other faiths approach these choices, read what religions say about euthanasia and end-of-life care.

What were the concerns of critics?

Critics raised serious questions, and many are still debated.

• Doctors' professional judgment. Karen's own doctors said stopping the machine went against medical standards. The trial judge agreed that doctors, not courts, should decide. Some feared courts and families would override medical experience.
• Diagnosis can be wrong. A 1996 study in a UK rehabilitation unit looked at 40 patients sent there as "vegetative". Seventeen of them (43%) had been misdiagnosed. Nearly all of them could communicate their preferences about quality of life. The authors said this diagnosis needs skilled assessment over time.
• Disability rights. Disability-rights groups worry that guesses about "quality of life" can reflect prejudice against disabled people. Writing about a later case, that of Terri Schiavo, Stephen Drake of the group Not Dead Yet argued that guardianship "has to have limits, especially when the stakes are the very lives of the people under guardians' power".
• Mistakes cannot be undone. In the Cruzan case, the US Supreme Court allowed states to demand strong proof of a patient's wishes. It said a wrong decision to stop treatment "is not susceptible of correction" (Cruzan, 1990).
• Religious limits. The Catholic Church accepts stopping burdensome treatment, but it sees food and water differently. In 2004, Pope John Paul II said tube feeding should be seen "in principle, ordinary and proportionate". He also said a person in this condition "will never become a 'vegetable'" (Vatican).

Some people also worried that the case would lead to euthanasia. The court itself drew a line. It saw "a real distinction between the self-infliction of deadly harm and a self-determination against artificial life support". In law, refusing a treatment is different from acting to end a life. Our guide to euthanasia, assisted suicide and MAID explains these differences.

Our section on the ethics of end-of-life decisions sets out the main arguments. Ask yourself: who should have the final word when a person cannot speak? Their family, their doctors, a committee or a judge?

What does the Quinlan case mean for families today?

Karen's family had to go to court because nothing was written down. Her conversations with friends were not enough. Fifty years later, you can avoid that problem with a few simple steps.

Think of it like leaving a map for the people you love. One sentence such as "I wouldn't want to live like that" shows a direction. A written plan shows the roads.

• Write an advance directive. It tells doctors what treatments you would want or refuse. In the US, CaringInfo offers free forms for every state. See our guides to advance directives and living wills and how to write a living will.
• Name a healthcare proxy. This is one person you choose to make medical decisions for you if you cannot. See how to choose a healthcare proxy.
• Talk about values, not only machines. What would make life still worth living for you? What would you not want? Our guide on how to talk to your family about end-of-life wishes has opening lines you can use.
• Ask about the ethics committee. If your family disagrees with doctors, or with each other, most hospitals now have an ethics committee or ethics consultant. You can ask for help. This service exists partly because of Karen.

Karen Ann Quinlan never chose to become famous. Her family's long struggle helped other families gain a voice in hospital decisions. Read about other landmark stories in our guide to famous euthanasia and right-to-die cases.

If you could not speak tomorrow, would the people you love know what you want?