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.

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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.

Karen’s 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 wouldn’t 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.

Karen’s 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 Karen’s 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 Karen’s 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 Morse’s 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 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”.

Facebook Twitter Pinterest Joseph and Julia Quinlan, parents of Karen, in 1977. Photograph: Bettmann/Corbis

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. Coburn disagreed with disconnecting the ventilator. 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. It was the court’s refusal to grant Joseph Quinlan guardianship that brought the case to trial.

After two tumultuous weeks, Justice Muir’s ruling came down, and it came down hard. On 10 November 1975, he announced that Joseph Quinlan 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: “There is a higher standard, a higher duty, that encompasses the uniqueness of human life, the integrity of the medical profession and the attitude of society toward the physician, and therefore the morals of society. 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 Quinlan 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.

This is how the case that has had the most influence on end-of-life care was decided. 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.

The advent of technology far beyond our imagination not only brought hope for many patients who would have otherwise succumbed to their ailments, but also raised ethical questions the like of which had never been asked in the past. While the case of Karen Quinlan provided the first precedent for when treatment could be withdrawn by guardians on behalf of a patient if they had expressed such a wish in the past, the situation came to a head in April 1989. It was not in a courtroom, but in a paediatric intensive-care unit, when Rudy Linares pulled out a loaded .357 Magnum revolver at his child’s bedside.

Eight months before this crisis, a routine day had gone terribly awry. Samuel, Rudy’s 15-month-old child, accidentally swallowed a balloon at a birthday party and started to suffocate. Rudy tried his best to revive his child. When Samuel started to fade, Rudy lifted him in his arms and ran to the closest fire station, screaming, “Help me! Help me! My baby is dying!” While Samuel was eventually revived, his brain never recovered and he plunged into a persistent vegetative state.

Months into the ordeal, Rudy requested that the doctors disconnect Samuel from life support. They agreed, but the hospital’s lawyer warned them against going ahead, saying that they could face possible criminal charges. As time went by, Rudy’s despair turned to frustration, which then turned to rage. When the hospital left a message on Rudy’s voicemail saying that they were transferring Samuel to a nursing home, something inside him broke, and he headed to the hospital with the gun. When he pulled out the revolver in the intensive-care unit, he declared, “I’m not here to hurt anyone. I just want to let my son die.”

Rudy pulled the tube from his son’s throat. Within seconds, Samuel became motionless, but Rudy kept cradling him in his arms for at least 20 minutes. A physician slid him a stethoscope to confirm that Samuel’s heart had in fact stopped beating. Eventually, Rudy gave up his gun, was arrested and charged with murder.

In the court of public opinion, Rudy was a hero. Neither the hospital nor the courts wanted to punish him, despite the legal grey area that he had identified. Neither did the jury; they let him walk. And while Rudy was not the perfect example to highlight the ethics of withdrawing life-sustaining treatments – he had been arrested multiple times for battery, and just two weeks after being declared not guilty of murder, barely survived an overdose of PCP, cocaine and alcohol – he did more than most bioethicists ever have to highlight the role of technology at the end of life.

The late 1980s were a time when the American people revolted against the machines keeping them alive in hospitals and nursing homes. One physician captured the mood of the times when he wrote: “‘Life sustaining’ becomes ‘death prolonging’; patients do not recover, nor do they die. Instead they become prisoners of technology.”

The right of people to withdraw or withhold life-sustaining treatment reached the supreme court again. This time, the case was another young girl now horribly removed from her prior self – Nancy Cruzan, whose tragic end, too, was fought out on the national stage.

Nancy’s first death occurred in January 1983, when she lost control of her car on a deserted road and ended up face down in a water-filled ditch. Paramedics arrived on the scene and helped resuscitate her with CPR. But while her pulse returned 15 minutes after she had first lost it, her person never did. She slipped into a persistent vegetative state and never came back. After four years went by with her wilting away in a nursing home in Missouri, her parents petitioned to have her feeding tube removed, only to hit a snag. While the parents relayed that in previous conversations she had expressed a desire not to be artificially animated, the state required more concrete proof. The Missouri supreme court stated that while Nancy did have the right to withdraw treatment, that decision could not be made by someone else on her behalf.

The Cruzans found millions of sympathisers, among them one parent whose own daughter was in a coma, who wrote, “Throughout my daughter’s life I made many a decision to guide her into adulthood and now, when she’s incapable of deciding for herself, the state wants to take the place of her father.” He went on to add, “Walking into her room is like entering a funeral parlour … Could it be that Rudy Linares, who held off the medical staff at a Chicago hospital and the police at gunpoint so that he could ‘rescue’ his dying infant from a ventilator, was so much wiser than our courts?”

In an important decision, the court declared artificial nutrition and hydration to be forms of medical treatment. In this, they found staunch opponents, who argued that withdrawing food and water amounted to murder. “Even a dog in Missouri cannot be legally starved to death,” said Reverend Joseph Foreman, an Atlanta-based pro-life advocate. Not only did these protesters challenge the ruling multiple times in court, they even stormed the medical facility housing Nancy in an attempt to reconnect her with the feeding tube.

Eventually, though, the court admitted the testimony of Nancy Cruzan’s previous co-workers, who described her desire to not be in a vegetative state, and authorised the Cruzans to go ahead with taking out the feeding tube. About two weeks later, Nancy completed the long and agonising death that had taken almost eight years to unfold.

While society, courts and physicians have made their peace with treatment withdrawal, it is interesting to note how indistinct the line between passive or semi-active euthanasia and more active forms of euthanasia really is. While, as doctors, we draw clean and sharp lines in our heads to allow us to function and do our jobs, the truth is far murkier. In the course of researching this subject, I have learned many things about myself. Most surprising is to realise I have come to the conclusion that we must do more to discuss and support competent terminally ill patients’ right to demand and acquire the means to end their suffering with the aid of a physician.

While every life is unique, death remains consistently disempowering, harrowing and, for the most part, undesired. Most people who seek death through suicide do so more to end life rather than achieve death. This is true of all patients at the end of life; to date I have not had a single patient who expressly wanted to die just for the sake of it. If anything, life is valued ever more as one strains to leave it.

Some claim that modern medicine has done more to prolong death than to extend meaningful life. While I disagree with this notion, there are many patients whose demise is preceded by an extended period of debility and suffering. When nurses and physicians look at these patients, they frequently assess them as having a much poorer quality of life than the patients themselves may think. This is not surprising, as patients frequently adapt to the inconveniences that come with their illnesses. The vast majority of patients want to do everything reasonably possible to prolong life as far as they can.

Facebook Twitter Pinterest A protest in support of assisted dying in London in 2015. Photograph: Rob Stothard/Getty Images

In a few harrowing and tragic cases, the very act of living comes to be defined by distress and despair. The underlying disease, whether it be cancer or sepsis or cirrhosis, invades the true essence of the patient’s life. At this time, physicians can provide relief on many levels. Opiates for pain, benzodiazepines for anxiety and anti-emetics for nausea can all be easily dispensed by physicians or by nurses specialising in end-of-life care. These medications, though, are far from perfect. Opiates cause people to be sleepy, groggy and confused, and while they may ensure pain relief, too frequently they take a toll on the patient’s animation. Opiates also create their own need: as soon as the body sees opiates, it reacts by increasing the number of receptors in the neurons, meaning that a higher dose will be needed to achieve a similar effect the next time.

When the end draws closer, it is usually preceded by an acute escalation of medical interventions. A third of elderly Americans undergo a surgical procedure in the hospital in the last year of life, with a fifth undergoing such procedures in their last month of life. Given that these procedures are carried out so close to dying, it isn’t clear if they provide any meaningful benefit. A fifth of patients also undergo life-sustaining interventions such as intubation, CPR and artificial nutrition in the last six months of life. The crescendo of hospital visits, medical interventions and medication prescriptions builds up and up and up, and just when it seems as if the storm will never ebb, the realisation hits that there is nothing left for the tsunami to destroy. The majority of these patients or their family members then decide to withdraw life-sustaining procedures, as they finally embrace an end they fought so hard to defer for so long.

In the old world, the trajectory at the end usually entailed a person lying in their bed after a short but rapidly progressive illness. Today, the de facto mode of modern death looks something like this: person falls sick, gets better, but never gets back to the baseline, accumulating diagnoses and procedures until it becomes clear (usually quite belatedly) that more interventions will not necessarily do any good. This prolonged, and sometimes invasive, treament makes sense for the vast majority of people. But for the few who choose not to prolong their lives in this way, some US states have created pathways and laid down rules to help them control their end via assisted death. For most of those that take this path, it turns out to be, if not a happy ending, the ending they wanted.

Why have doctors provided the greatest opposition to assisted death? Doctors are trained to treat. Whether it’s trying to quell a symptom or correct someone’s electrolyte imbalance or cut out a mass or open up a blood vessel, over years and years of busy days and long nights, rigorous preparation and draining didactics, physicians are trained to do. Just as it is hard for patients and their families to let go, doctors are not always ready not to do more.

To many doctors, incorporating death assistance in their practice repertoire also risks sending mixed messages to patients. Physicians argue that trust is the cornerstone of the patient-doctor relationship, and giving physicians the power to kill might alter what goes through the mind of a patient when they see a doctor approach them in the middle of the night.

The truth is that, to a great extent, both ordinary people and the medical community have accepted practices very close to, if not indistinguishable from, euthanasia. Terminal sedation, terminal dehydration, even garden-variety withdrawal of care and the withholding of lifesaving treatments – while to physicians the distinction between these practices and euthanasia is self-evident, to the untrained eye the difference is blurry at best. If anything, by obfuscating the issue, control over how patients die has been taken out of patients’ hands and placed into the control of proxies and physicians, who are notoriously bad at predicting patients’ preferences.

During my medical training I was taught that the ethics of our profession took shape by placing the patient on the pedestal. But as I have talked to patients, physicians, nurses, caregivers and researchers, and contemplated what was routine and unquestioned, it became clear that much of what is now considered standard in end-of-life care came about for the sake of expediency. It was the evolution of medical technology and techniques that drove the conversation, while patients and even physicians strove to keep up.

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Central to the discussion, and yet somehow unresolved, is the definition of harm. The central theme expounded by those who rally against assisted death is the historically durable maxim “Do no harm.” But what is harm? Is a patient who gets treatments they would not want being harmed? Are excessive unbeneficial procedures not harm? Is a death far away from a place one would want to be not harm? And, perhaps most importantly, is a death that one would not have wanted not harm?

When the ancient Greeks coined the word “euthanasia,” they sought to answer a question that we still struggle with: what is a good death? It is perhaps the most important and difficult question we face; after all, how can the single greatest loss a life can experience ever be good? With what seems like an organised machine standing in the way, patients fight an uphill battle not to prevent death, but to experience it in a reasonably bearable way. These are some of the most pressing questions of our time: how patients would wish their lives to conclude, and what can be done to help them achieve that. But despite all our progress, they haven’t been fully addressed.

Main photograph: Patrik Budenz

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 on 27 July.

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