The long read: Why are so many doctors opposed to assisted death? As a practising physician, Haider Javed Warraich has witnessed both sides of this gruelling battleground
Karen Ann Quinlan lived two lives. Her first life was that of a regular middle-class girl in Scranton, Pennsylvania: she swam, she skied, she dated, she attended mass with her family, she went to high school, and she worked at a local ceramics company. However, this life changed after she was laid off from her job. Soon after, 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 close to Lake Lackawanna. 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. At some point during the night at the bar, she collapsed. One of her friends took her back to the house where she had been living with a group of friends. It was there that someone noticed that Karen had stopped breathing.
Her friend performed mouth-to-mouth resuscitation, but it was later determined that her brain had lacked oxygen for at least two 15-minute periods. Emergency medical services were called. An ambulance took her to a local hospital, where she was hooked up to a mechanical ventilator. On physical examination, doctors found her pupils were fixed: they did not constrict or dilate in response to light a very basic human reflex. Nor did she respond to any painful stimuli.
Three days into her hospitalisation, the neurologist on call, Robert Morse, examined Karen. In court documents, he said that he found Karen to be comatose and with evidence of decortication a condition that represents extensive damage to the higher parts of the brain reflected in a telltale posture with the legs stiff and straight and the arms flexed.
Karens condition did not improve. If anything, it became worse. When she first arrived at the hospital, she weighed about 52kg (115lb). To help feed her, a nasogastric tube was inserted, which provided her with food and medication. But in spite of this, over the next few months her weight dropped to less than 32kg (70lb). Her parents, the Quinlans, were both devoutly Catholic. They struggled with the situation as she remained, unchanging, in her comatose state.
In most cases of this sort, generally families and physicians would come to a decision among themselves, or physicians would unilaterally decide that they wouldnt proceed with resuscitation. Five months after Karen first came to the hospital, Joseph Quinlan requested that the physicians withdraw care and take Karen off the ventilator.
Karens doctors, Robert Morse and Arshad Javed, refused. To allay the doctors fear of having a malpractice 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.
It was here in a hospital bed, a skeleton of the person that she was when she was brought into the hospital, that Karen began her second life. Ostensibly, her state was not unique. In fact, countless other patients were in her condition. And yet, as events would transpire, she would go on to shape the landscape of death more than any other. Karen, while not the first patient to end up in this situation, would certainly become the most high-profile.
All the physicians involved in Karens care agreed that her prognosis was extremely poor. They also agreed that the chances of her coming out of her coma were next to nil. Many physicians at that point might have gone with the Quinlans wishes, yet the doctors in this case did not. In retrospect, it is still difficult for me to imagine what I would have done in their position. On the one hand, Karen was in a state where her quality of life was almost subhuman. She was dependent on a machine to help her breathe. She needed artificial nutrition, in spite of which she was seriously underweight. And it was clear that there was no available technology or intervention that would help her regain any of her normal functions. Subjecting her to these interventions was not making her feel better in any conceivable way, and keeping them going was not going to make her feel different either.
And yet, at that time, all this was happening in a complete ethical and legal vacuum. Physicians are trained to think autonomously and to manage the patient in front of them. Several times a day, physicians face ethical decisions. Most of the time, they do what is congruent with their own moral compass. At that time, they rarely looked over their shoulder and second-guessed a decision. Frequently they would go ahead and write their own rules. Variability in medical practice increases as one moves into a data-free zone, and ethical decisions at the end of life were about as data- and legislation-free as it got.
In this case, while the physicians agreed that Karens outlook was terrible, they also realised that they had no legal right to withdraw the care that was sustaining her. They were also wary of the consequences they might face if they went ahead. The doctors said they were warned that prosecutors could bring murder charges against them if they disconnected the ventilator a claim that seems plausible, given the lack of legal precedent. That they paused to think about what their decision would mean on a global level is commendable.
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. Indeed, in his opening statement, Dr Morses lawyer compared the Quinlan suit to Nazi atrocities during the Holocaust. Hundreds of reporters from national outlets occupied most of the seats in the court, thronged the streets outside and hunkered down outside the Quinlans home. In her book The Mansion of Happiness, Jill Lepore, a professor of history at Harvard and a staff writer for the New Yorker, wrote, The matter of Karen Quinlan marked a fundamental shift in American political history. In the decades following Quinlan, all manner of domestic policy issues were recast as matters of life and death: urgent, uncompromising, and absolute.
The Karen Ann Quinlan 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. This was the first time that the courts had formally analysed the myriad complexities that had arisen in the care of patients at the end of life after advances in technology had made those discussions even possible. End-of-life care posed vexing and intricate questions, with substantial overlap between medicine, theology and laws pertaining to human dignity, privacy and autonomy.
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. In many ways, this trial would lay the template for future trials of its kind. The Quinlans received thousands of letters and packages, including many from faith healers, many of whom claimed to be able to cure Karen. Joseph Quinlans assertion was fairly straightforward: that he be appointed Karens guardian and subsequently be allowed to move forward and disconnect Karen from the ventilator and allow her to die.