When Is Dead Actually Dead?

As a doctor, I can keep somebody breathing even after brain death. How do I make the final call?

An illustration of a heart with cables attached to it.
LightFieldStudios/iStock

For much of my life, I thought the line between alive and dead was irrefutable. During the ten years I worked as a paramedic in the Toronto area, I saw the body as simple: oxygen flowed into lungs, was absorbed into blood, and got pumped around to cells that broke it, along with glucose absorbed from the gut, down to produce the microscopic bits of energy needed to power life. Death, I thought, was simple too: the moment when no new energy was generated, when the batteries drained, and when the lights went out. I had pronounced dozens of people dead. In particularly horrific cases, when someone had, for example, been the victim of a house fire or blunt-force head trauma, I didn’t even need to check a pulse. The pallid colour of the skin, the emptiness of the eyes, and the body’s acquiescence to gravity said it all.

But when I started medical school, in 2012, my thinking was challenged. In the hospital, people seemed to die, well, slower than they did in the field. There were often no car accidents or bullets or torn aortas that I could point to as the cause of their demise. Death was no longer sudden. Instead, I tended to people who were dying—a process that could take days, weeks, months, or even years. The line between life and death started to feel blurry. When I started working in the intensive-care unit (ICU) as a senior medical student, that line became even harder to bring into focus.

I’ll never forget one young boy who was admitted to the children’s critical-care ward after an emergency surgery. He was incredibly sick, on life support. One night, his pupils stopped reacting to light. I remember the doctor in charge—my boss—confided that the boy was probably brain dead. “We’ll do formal testing in the morning,” he told me. “Probably” and “dead” don’t usually go hand in hand; as doctors, we want to be sure—we want time to react if we can. But once the word brain is smashed between probably and dead, determining time of death becomes only more complicated.

It sometimes takes days to declare someone brain dead and days more for the organ-donation process to be carried out. If someone is on life support, during all that time, blood will continue to circulate in the body and energy will continue to be created. When, then, did that boy die? Was he dead, right then and there, when we made that small observation of his two gaping-wide pupils, black as night? Was it the next morning around ten, when we formally declared death? Or was it two days after that, when a surgeon cut out his heart and raced it off to a stranger, who would later become a transplant survivor?

That boy’s case shook me. It’s one thing to see someone so young die, but it’s another to have the question of their death linger. It was the first time the clear black-and-whiteness of whether or not my patient was alive or dead became one big grey fuzzy question that seemed better answered by a philosopher than a physician. Suddenly, I saw death as complicated. The question of who gets to decide when life has ended is one that is still challenged in courts to this day.

As technologies and medicines have grown in sophistication, the line between alive and dead has become more difficult to determine for some. Mechanical ventilators can keep air moving in and out of lungs indefinitely, dialysis machines can filter waste out of the blood in lieu of a kidney, drugs can mimic the hormones and chemicals produced by the brain, and the heart’s cruise-control feature—called automaticity—means that a heart can beat outside the body for a number of hours so long as it receives a decent supply of oxygen.

Doctors aren’t flying in the dark, though. A previous lack of written documentation led experts, guided by rigorous science, to create guidelines for death determination in Canada. Written in 2006, these guidelines outline how neurological death can be declared. They are strict and, in the case of organ donation, require two physicians to verify irreversible death of the brain. Any drug that could affect the assessment must be cleared from the patient’s body, and if any doubt exists, neuroimaging studies, often done with contrast dye or radioactive particles, are performed to prove that blood isn’t flowing to the brain.

People tend to think of death as falling into two categories: somatic death occurs when the heart has stopped and can’t be restarted, and neurologic death occurs when the brain has irreversibly ceased to function. Also known as brain death, neurologic death represents irreversible loss of consciousness and brain-stem function, including the ability to breathe. The challenge with the latter is that sometimes a person can still look alive after neurologic death has occurred. And, occasionally, when families disagree with a diagnosis of brain death, they can fight the declaration in court.

Recently, two high-profile cases have been brought before Canadian courts. Near the end of 2017, there were two Toronto-area families who filed applications with the Ontario Superior Court to challenge, respectively, Brampton Civic and Humber River hospital doctors who had made declarations of brain death. Both families saw initial victories, obtaining court injunctions to force the hospitals to maintain their loved ones on life support. At the time, Taquisha McKitty was a twenty-seven-year-old Christian woman who was declared brain dead after a drug overdose and was then kept on life support until her heart failed in December 2018, a full fifteen months after doctors initially declared her dead. Shalom Ouanounou, an Orthodox Jewish man who was twenty-five when he suffered a severe asthma attack, remained on life support until his heart stopped March 2018, six months after doctors had declared him dead. In both cases, the families argued that it was within their rights to define death in accordance with their interpretation of their religion. In the case of each religion, according to the respective families, that final line is marked only by cessation of a heartbeat.

Discord between religion and science has plagued many medical-school lectures for centuries, and to me, it seems like it likely always will. Sometimes, that discord brings us to more compassionate and human places; sometimes, it does not. To me, many people who are arguing against the medical definition of death—i.e, brain death—believe that somewhere, beyond what we can see, their loved one’s personhood is still there.

To try to understand life and death how they see it, I reached out to Mark Handelman, a lawyer with Whaley Estate Litigation, who represents the family of Ouanounou. Handelman, who has a master of health science in bioethics, didn’t try to change my mind about death. Instead, he took me into the minds of the Ouanounou family, which practises Orthodox Judaism. One approach, he tells me, demands that, for death to be declared, cardiac function must stop, including the heart. “Some Orthodox Jews believe that, because every moment of life has infinite value, irreversible cessation of cardiac function must occur,” says Handelman. Another approach seems concerned only with respirations, defining death as the cessation of breathing. It can be confusing: one interpretation would allow for brain death as the final death, and another that would not. Handelman stresses that his job isn’t to decide which, if any, definition is correct but to defend an individual’s right to freedom of religion. “I don’t want to be on life support for myself,” he says. “But I still defend [Ouanounou’s] own right to his interpretation of this, and his interpretation is not based on medical benefit but on his personal religious beliefs.”

If religious definitions gain ground, or become law, families might demand that dead bodies be ventilated, fed, and maintained indefinitely—a practice that could, incidentally, cost provincial governments millions of dollars and crunch overcrowded ICUs even further.

Ontario’s quasi-judicial Consent and Capacity Board (CCB) has heard several cases of families that want brain-dead loved ones kept on life support. Many doctors believe using technology to keep someone indefinitely present crosses an ethical line—desecrating a human body—while also potentially keeping precious and expensive ICU beds from those whose lives depend on them. It’s hard not to see this as a fight. And, as someone who has vowed to fight for my patients, it’s even harder to figure out which side I’m on. Am I ready to say, without any room for error, that there is no hope for someone who is declared brain dead? Is there a grey area, or is neurologic death really black and white?

In February 2018, while both McKitty and Ouanounou remained on ventilators, I called Andrew Baker. Baker, a doctor, is one of the authors of Canada’s guidelines for brain death. He is nothing short of a legend in the critical-care universe, and as soon as he spoke on the other end of the line, I knew that his is the voice you want to hear if terrible news is headed your way. In a gentle but confident manner, Baker conceded the complexity of the death dilemma yet held firm on what, for him, is not up for debate. “There is only one death” he says. “Death of the brain stem and the irreversible loss [of the capacity] of consciousness.”

The heart’s relationship to death is complicated. As Baker puts it: “If your heart stops, you might not be dead. It could autoresuscitate.” In other words, a stopped heart can, on its own, start beating again—although it isn’t exactly common, and it must happen within minutes of flatlining. More likely, a person would intervene to restart your heart and restore blood flow to your brain.

We now have medications that can help restart a still heart, and heart-starting defibrillators are found in shopping malls, airports, hockey arenas, and even people’s homes. Survival rates from cardiac arrest are as high as 30 percent in some places that have access to defibrillators and people trained to use them. People can also perform cardiopulmonary resuscitation (CPR) to deliver just enough oxygenated blood to the brain to keep brain cells alive. Baker points out the only reason a stopped heart is considered to be the moment of death at all is that without blood circulation, the brain can’t survive for longer than about five minutes. At that point, brain cells start to die from lack of oxygen.

But, when there is a lack of blood flow to the brain, most often caused by swelling or bleeding in the brain, that raises the pressure in the skull above the blood pressure generated by the heart. So the heart may be healthy and beating, but the patient might as well be under the guillotine.

Modern medicine can now effectively, temporarily, replace nearly every organ in the body. Even the heart can be supported by heart-lung bypass machines and mechanical heart pumps. So what does death mean in light of these advancements? “We have to draw a line” says Baker. “A white blood cell can live outside the body for hundreds of years. We could take your DNA and insert it into a cell, and it would make protein. I can transplant your kidney into someone, and your kidney would be alive. Does that mean you are alive?”

The line, he believes, lies with consciousness—a line consistent with practice throughout Europe, the US, and Australia. Technology, he adds, means we must be firm in how we define death. And what that means, he says, is that when neurologic death is proven to have occurred, personhood has ended.

Alma Estable has lived in Ottawa since 1976. The daughter of two medical scientists, she is a social researcher. I wanted to speak with her because her father, a then retired medical professor at Laval University, suffered a fall in 2016 and, later on, went into a coma at an Ottawa ICU. She told me that doctors suggested life support should be discontinued. Her father wasn’t declared brain dead, but Estable says the Ottawa doctors told the family that recovery was unlikely. She adds that they asked her to designate her father a “do not resuscitate” patient and to not escalate treatments. But Estable, who shared power of attorney with a sister and brother, said no, and a bureaucratic tug-of-war ensued that drove her family and the medical team apart.

Estable was quick to clarify that the subsequent controversy was not about her father’s death. “There was no controversy around his death,” she replied sharply, in answer to my first question. “There was controversy around his life.” Estable tells me that her father had clearly expressed that he wanted to be kept alive even if his quality of life was poor. The hospital, however, challenged that decision and brought the family to the CCB. When families and doctors in Ontario disagree, either party can file a motion with CCB that sometimes mediates disagreements between patients, their families, and their health care providers. The board can appoint a representative to make decisions on behalf of patients, ruling for or against a surgery, treatment, or withdrawal of life-sustaining treatments.

Estable says that the experience left her and her seven siblings feeling bullied. “We were constantly encouraged to change our minds. This process was as close to persistent harassment as I have ever experienced in my entire life,” says Estable. She says she continues to be “flabbergasted” by the pressure put upon her and her family. “It was Kafkaesque. It was so bizarre. Every mortal being leaves this world. We aren’t foolish, and our father was on that path. But let him walk it himself,” she says.

As children of medical researchers, Estable and her siblings immediately scanned the literature to understand her father’s condition. They used resources in the hospital to ensure his wishes were respected; doctors, nurses, social workers, ethicists, and the hospital chaplain were consulted, in hopes of finding a resolution. But the hospital still turned to the CCB. Estable’s family hired a lawyer and ultimately won the case at the CCB. She says her father regained consciousness and spoke with his family before he died later that year. When contacted, the Ottawa hospital told The Walrus that it supports the work of the CCB and that “while we are not in [a] position to comment on the decisions of the board, their work allows cases to be analyzed through a defined, open process that hears all sides.”

While Estable’s father was never declared brain dead, the case is a stark illustration of the pain doctors can inflict upon a family in their attempt to advocate for their patients. It also shows how discussions at the end of life—which often poorly broached—can disintegrate the therapeutic relationships doctors are taught to foster.

Estable has thought long and hard about the experience her family had. “When can the state take a life?” she asked, not entirely rhetorically. At this remark, I couldn’t help but wonder if that is how families view my role as a doctor—am I a state actor fancifully taking a life here or there?

Past conversations with my patients’ families flashed through my mind. I felt guilty, wondering if I, too, had left families feeling bullied. I asked Estable what she thinks should be done in the cases of the brain-dead bodies being ventilated by machines while the courts debate their demise. “Why not let them be? Those families are already suffering so much.” Am I cold—clinical—for wondering: Isn’t that the point? Must we not suffer and grieve to move on? In accepting death, families can work through loss and suffering and transition to a new normal. Isn’t my role as a doctor to communicate death clearly so grief, then acceptance, can come in due time?

Now, more than ever, I’m both perfectly convinced of the accuracy of the medical definition of brain death and terribly conflicted about what I should do if a family challenges that definition.

I think back to two Decembers ago, when I sat in a Brampton courtroom taking notes on the closing arguments in the case of Taqisha McKitty. Doctors filled the left side of the room, and McKitty’s family members filled the right. A projector played videos of McKitty on the courtroom wall. And I remember that her fingers twitched, and everyone nodded: the doctors likely saw proof of spinal-cord reflexes that have nothing to do with the brain; the family likely saw the movement as a sign of life, a sign of hope. At that moment, it was clear to me that the courtroom is no place for this debate.

Even so, it seems that court may be the only place where clarity will be found. Although McKitty has finally been laid to rest, her case continues on in the Ontario Court of Appeals. Regardless of the outcome, it’s possible the losing side will apply for leave to head to the Supreme Court for a final ruling.

To be clear, this debate over the line between life and death must be settled soon. In addition to the distress felt by doctors, nurses, and families, there are real resource implications. Brampton Civic Hospital declined to comment about the impact of McKitty’s sixteen-month presence in the ICU, so I filed a freedom-of-information request. It turns out the twenty-four-bed ICU was at capacity twenty-three days in the eleven months following her declaration of death and “near capacity” for 177 days. Patients often waited more than six hours, sometimes days, in the ER before an ICU bed was available for them. Ambulances had to transfer forty-three patients who needed ICU beds to other hospitals, and four surgeries were cancelled because an ICU bed was not available.

I became a doctor because I value life. But I have chosen to work in a field where death is inescapable. The most respected saying in medicine is “first, do no harm.” I’ll repeat that mantra before the next conversation I have with a family about their dying loved one and hope my passion for life inspires my explanation of the finality of death.

Blair Bigham
Blair Bigham is a resident emergency doctor, medical scientist, and health journalist based in Hamilton, Ontario.