This is a story about the beginning of a revolutionary legal perspective in end of life care, the story of Karen Ann Quinlan.
Karen's parents' legal fight to relieve her from endless suffering brought to focus the patient’s right to reject ventilator. The case had the most influence on how end-of-life care was decided then on. And it was in the wake of this ruling that modern end-of-life care began to move out of the shadows and exist for the world to see.
Karen was a regular middle-class girl in Scranton, Pennsylvania. She swam, skied, and attended church with her family. She started working at a local ceramics company. Her life changed after she was laid off from her job. She found herself moving from job to job, and increasingly found comfort in sedative pills and alcohol.
On the night of 14 April 1975, Karen, who had just turned 21, was partying with her friends at a bar. In the days prior to this, she had barely eaten or drunk, as she was trying to fit into a dress. In the bar, she drank gin and also took some tranquillisers.
Someone noticed that Karen had stopped breathing. Emergency medical services were called. An ambulance took her to a local hospital, where she was hooked up to a ventilator. Doctors found her pupils did not respond to light, nor did she respond to any painful stimuli.
Three days later, the neurologist on call examined Karen and found her to be comatose and with evidence of extensive damage to the higher parts of the brain – reflected in a telltale posture with stiff legs and flexed arms.
Karen’s condition became worse. To help feed her, a nasogastric tube was inserted, which provided her with food and medication. Over the next few months her weight dropped from 52kg to 32kg.
Five months after Karen first came to the hospital, her father Joseph Quinlan requested that the physicians withdraw care and take her off the ventilator. Karen’s doctors, Robert Morse and Arshad Javed, refused. To allay their fear of having a lawsuit brought against them, the Quinlans drafted a document freeing them from any liability. But the doctors insisted that they were not willing to remove Karen from the ventilator. All this was happening in a complete ethical and legal vacuum.
All the physicians involved in Karen’s care agreed that her prognosis was extremely poor and her chances of coming out of coma were next to nil. On the one hand, Karen was in a state where her quality of life was almost subhuman. And it was clear that there was no available technology or intervention that would help her regain any of her normal functions.
While the physicians agreed that Karen’s outlook was terrible, they also realised that they had no legal right to withdraw the care that was sustaining her. The doctors said they were warned that prosecutors could bring murder charges against them if they disconnected the ventilator, given the lack of legal precedent.
For the Quinlans, the decision to request that life support be withdrawn had not been easy. They had spent several months pondering the situation. Joseph Quinlan conferred with his local priest, who also agreed with withdrawing care, given the low likelihood of Karen having any meaningful recovery. But once they came to the decision that continuing “extraordinary” measures was against what Karen would have wanted, their conviction was set in stone. It was then that they decided to file a suit and take the matter to court.
The Quinlans probably had no idea that they had just initiated one of the most significant lawsuits of their time. Precedent was not on their side. Just a few weeks earlier, a New Jersey court sitting in Newark had not allowed a 39-year-old woman with terminal leukaemia the right to refuse a feeding tube. This was also a time when paranoia regarding removal of support for terminally ill patients was very high.
The Karen case was the first step in what is now known as the “right to die” movement. It was disclosed just before the trial went to court that Karen did not have an entirely flat EEG, and that she could breathe spontaneously from time to time without support from the ventilator. Therefore, the one thing that everyone agreed upon in this case was that Karen was not dead.
The trial started on 20 October 1975, at the New Jersey superior court, presided over by Justice Robert Muir Jr, and lasted for about two weeks. Joseph Quinlan’s assertion was fairly straightforward: that he be appointed Karen’s guardian and subsequently be allowed to move forward and disconnect Karen from the ventilator and “allow her to die”.
At the time the trial went to court, Joseph Quinlan was not the designated guardian. The court had disallowed him from holding that position, given that they knew he would want her removed from life support, and had appointed a part-time public defender, Daniel Coburn, as Karen’s legal guardian.
The decision to be removed from the respirator, Justice Muir stated, “is to be left to the treating physician … I am satisfied that it may be concurred in by the parents, but not governed by them.” In other words, he reinforced the existing notion – the doctor knows best.
After two tumultuous weeks, Justice Muir’s ruling came, on 10 November 1975, he announced that Joseph was not to be the patient’s guardian and placed the burden of decision-making on the physicians taking care of Karen.
In his ruling, the judge stated: “A patient is placed, or places himself, in the care of a physician with the expectation that he [the physician] will do everything in his power, everything that is known to modern medicine, to protect the patient’s life. He will do all within his human power to favour life against death.”
Two months after the decision, the appeal process began formally in the New Jersey supreme court. Another two months after the arguments began, Justice Hughes delivered the judgment of the court.
The facts had not changed much from when the case first went to court, but the climate was different. There was additional debate about what “extraordinary measures” entailed. The ruling also noted that the end of life landed at the intersection of law, medicine and religion. While the religious beliefs of the plaintiffs were acknowledged and respected, the definition of life and the definition of death were considered within the scope only of medicine.
The court’s opinion was that, given her poor prognosis, “no external compelling interest could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life.”
The judgment overturned the prior court’s decision to bar Joseph from being Karen’s guardian. The decision to allow a parent to be the guardian was meant to use the family’s best judgment of what option the patient would exercise, were they competent and able to communicate their wishes. One of the biggest differences between this opinion and the previous one lay in introducing the patient and the family member into medical decision-making.
Justice Hughes affirmed in this decision not only that patients have a right to have life-sustaining treatments withdrawn or withheld, but that that decision would be made by their guardians if they were not competent to make such a decision. The ruling also stated that no criminal liability lay on physicians for following such requests.
In 1980 Julia and Joseph Quinlan founded Karen Ann Quinlan Hospice in memory of their daughter.
(This is an adapted extract from Modern Death: How Medicine Changed the End of Life by Haider Javed Warraich, published in the UK by Duckworth).