An Excerpt from Death Interrupted

You’re Dead When a Doctor Says You Are 

At a cardiology conference a few years ago, I attended a session where a survivor of cardiac arrest was speaking. Ten years ago, you would never see a survivor at a conference, let alone giving a presentation, but having survivors speak about their experiences had come into vogue.

The speaker was a young woman with a congenital heart problem. She was on stage with her life-long cardiologist, an older man in typical cardiologist garb – sober-collared shirt, perfect tie and expensive suit. She recounted a familiar story of cardiac arrest: a lack of memory of the event, a guardian angel bystander, courageous paramedics. In the emergency room, doctors like the ones who filled the auditorium had tried to resuscitate her but had failed. They were about to quit when her cardiologist, who had somehow found out his patient was downstairs, burst into the room and said, “Keep going!”

The team rallied, and the woman regained her pulse. She would soon undergo heart-lung bypass and an eventual heart transplant, and the woman is alive today.

One of my colleagues stood up afterward and asked the cardiologist what many of us were thinking: Why had he gone to such extreme measures, attempting to resuscitate her far beyond a reasonable time period?

“I just knew it wasn’t her time yet,” he said.

And, in a room full of science diehards, everyone nodded.

Whatever it is, doctors often have a fundamental ability to piece it all together. In seconds, we understand things we don’t formally stop to consider, merge a thousand disparate datapoints to see patterns form, and from them piece together a coherent interpretation of what is going on in a person’s body. On the surface, it’s as close to magic as I can think, but at its core it’s the farthest thing from it. It comes from a decade of study and seeing patient after patient after patient.

I’m sure that cardiologist, who had known his patient for years, wouldn’t be able to tell you if it was the pallor of her skin or the way her ECG tracing looked or an out-of-place piece of the story that made him conclude it wasn’t her time. To me, it doesn’t really matter. The point is that doctors are generally pretty good at what we do, and if you trust us to do our job, we’ll usually make the right call.

If only it were that simple.

Sonny Dhanani, chief of the pediatric intensive care unit at the Children’s Hospital of Eastern Ontario, is one of the world’s leading experts on what it means to die. From organ donation to palliating ICU patients to euthanasia, Sonny has researched how people die for two decades. As a pediatric ICU doctor, he has treated tiny babies and teenagers and everyone in between.

I wanted to know if Sonny agreed that doctors should be the ones trusted to decide when life has ended.

“The physician owns this space. Death for me is very biological”

“In the medical context of treating disease and identifying no hope for recovery, someone has to own this. From a pragmatic stance, we can’t just say families get to decide when you’re dead. We can’t have different religious people do that. It’s not practical. The physician owns this space. Death for me is very biological. There is a definition of death, a determination of death, and a declaration of death.”

I asked Sonny about the differences between countries in how they determine death; even in my own observations, there seemed to be some variation.

“There aren’t catastrophic differences,” he said. “Variability in determining death is consequential, though, because if we say a patient is dead but then the family sees a blip on the monitor, they can lose trust in us.”

Sonny thinks that science on the last moments of life is important in helping everyone understand what dying looks like. “It builds trust if people know that the heart can start and stop at the end of life. If we find nuances in the science, we can be open and transparent about that.”

This is essentially what Andrew Baker, the ICU expert who developed brain death guidelines, called “autoresuscitation.” But Sonny doesn’t like the term. “These people don’t wake up and start breathing. They don’t actually resuscitate. But their heart flicks on and off for a minute or two.

“For me, there is no dilemma around death. It’s more a dying dilemma. There is a pendulum of paternalism. There is an era before we trained where the white male doctor in a white coat said, ‘This is how it is,’ and there was a lot of respect for the physician in society. We’ve now come to a point, aided by Google, where most of us aren’t white, aren’t male, don’t wear white coats, and we aren’t paternalistic at all. We give families choice, unfair choice. What kind of a choice is it when I say to a mom, ‘Do you want to let your two-month baby girl go?’ That’s stupid.

“So, maybe we actually need to be more fair to individuals. We need to empower people to learn as much as they can and give them time. But we also need to support them with our own recommendations because we have the expertise.”

“There is no dilemma around death. It’s more a dying dilemma. There is a pendulum of paternalism.”

A lightbulb went off in my head. We were getting somewhere!

“Everything in society needs to get pushed too far one way before it normalizes,” Sonny told me. “I think it’s great that doctors have less control and that families have more control. But if we bring people together and give them time and transparency and knowledge, we could take more control in this. There is a consequence to patients and families when we put all the decision-making on them.

“The idea of hope is difficult. What are we hoping for? The motivations are right, because . . . we have seen people turn around . . . Our expertise and experience give people hope. When I see a catastrophic injury I say, ‘Your job is to be hopeful, and my job is to be realistic, and we’ll come out somewhere in between.’ So, we are to blame for hope, but that’s not so wrong, especially in the beginning. Families need time to transition from hope to despair, and that’s what we’re not good at. We get locked into the hope, and we can’t get out. That transition is where the gap is.”

To improve that transition, we need time, Sonny says. He drew on a recent experience: “We spent hours a day over two months with one family. It was just conversation. This family and our team, we never had conflict despite one complication after another. But it’s because we put in the time.”

In fact, a 2000 study in the British Medical Journal found that doctors tended to see the end-of-life period through rose-tinted glasses, estimating patients’ remaining time to be 5.3 times longer than they actually lived.

Rather than being prone to cutting life short, we let it drag on.

So, we do get it wrong – but in the other direction. Rather than being prone to cutting life short, we let it drag on, failing to see the forest for the trees until the last remaining good that can come from tragedy – organ donation – isn’t possible anymore.

Sometimes, doctors are so compelled by hope to keep going that they can run afoul of patient wishes.

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 retired medical professor who had taught at Laval University, suffered a fall in 2016 and later went into a coma at an Ottawa ICU. Estable told me that doctors suggested life support should be discontinued. Her father wasn’t declared brain dead, but Estable said the Ottawa doctors told the family that recovery was unlikely. She added 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.

When we spoke, 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.”

She told 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 Consent and Capacity Board (CCB), a quasi-judicial tribunal. When families and doctors in Ontario get stuck in a disagreement, either party can file a motion with the CCB, which sometimes mediates 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 supports.

Estable says that the experience left her and her 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,” she said. She told me 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.”

As children of medical researchers, Estable and her siblings immediately scanned the literature to understand their 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. The Ottawa hospital told me 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.”

Am I a state actor, fancifully taking a life here or there?

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 are often poorly broached – can disintegrate the therapeutic relationships doctors are taught to foster.

Estable has thought long and hard about her family’s experience. “When can the state take a life?” she asked, not entirely rhetorically. At this remark, I couldn’t help but wonder if that was 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 thought should be done in the cases of the brain-dead bodies being ventilated by machines while the courts debate their demise. She replied, “Why not let them be? Those families are already suffering so much.”

Am I cold, clinical, for wondering, wasn’t that the point? Must we not suffer and grieve to move on? In accepting death, families can work through loss and suffering. Isn’t my role as a doctor to communicate death clearly so that grief, then acceptance, can come in due course?